The Invisible disease, the journey of a Fibromyalgia Fighter

Happy New Year

2012-01-05T19:18:00.000-05:00

Happy new year to everyone.....may all your resolutions last longer than 30 days!!!

It has been a long time since I written anything and even then I had gotten pretty consistent. I tried, I really tried to write every day and I have several reasons for not doing it and they are....1. got tired of complain about the same pains and fatigue everyday 2. was too tired to write 3. my mind just wouldn't let me write! What I really mean is I just can't seem to focus...I am the person that used to love to read a book a week and now I can't read 1 page without having to read it over and over again. 4. I would be all ready to blog, have everything in my mind ready to type it out and BOOM....nothing, my mind - it just wouldn't come out. 5. I start to type and am falling asleep within 5 minutes of typing, doesn't matter what time of day it is.
Now I know that most people will read this and say that they get like this some days and it is just part of getting older and then laugh it off. Trust me it is not the same on soooo many levels! I can't explain it here but for those of us that suffer with fibro, fibro fog and CFS, we get it!!!

January 7th*************************************************************************

The reason I am writing after sooo long is that I am totally blown away by our social security - disability system. Did you know that they think fibromyalgia can be cured??? Well they do and I am proof that they do. I was approved for disability a couple years ago and then I received a letter in the mail about 2 months ago saying that they are reevaluating my case to see if my symptoms have gone away. Not the exact words but the words they used did state to see if I was cured!! As usual I had to fill out a bunch of paper work, Jim had to fill out paperwork and now they have me going to see a doctor that they have appointed. The doctor is at a walk in clinic....I did ask if he knew about fibro????I am curious what he does know??? Disability is saying that they need his medical opinion in order to help make their decision!!!! How can a doctor that meets with me for a short time that has never met me make such an important decision???

They don't see me on a daily basis....they don't see me laying in bed for 1/2 the day, they don't see me jump when my husband just gently rubs his hand on my skin, they don't see me take daisy for her first walk in the park then come home and go to bed for 3 hrs, they don't see me wander around the house because I don't know what to do with myself from hurting so bad, they don't see inside my body when I have to JUST get out of the house so I run a few errands and the pain in my ankles is so bad it feels like they could snap! I hurt sooo bad but I need to move because sitting still or laying down just kills me. They don't see me hobble down stairs to take my pain meds in the morning (o how i am learning to hate the stairs in my house) there are many mornings where Jim has to get my meds for me.....when I go down stairs I have these 2 very precious animals that want to be fed and 1 that needs to be let out to go potty...I hobble outside and all the while praying that daisy will make it quick. They don't see me after I have taken my meds (if I was able to go down stairs) go back up stairs and crawl back into bed and stay until at least 10:00 / 11:00 depending on how bad I feel. If while in bed I have to go potty well then I am in trouble because I am more likely not going to get up. I am so blessed because daisy has gotten into the habit of coming back up stairs with me and crawling into bed with me...YEA!!!!! They don't see the pain in my hips. I have had shots twice in both within a year. As I am typing this I keep moving my legs because the pain and the burning in my hips is so intense!! They don't see me when my hands, arms and shoulders hurt so bad that sometimes I can't even hold things....My hands get so weak, the tinging feeling that I get in my hands...... They don't see me not take a shower for 2 or 3 days because I am hurting so bad or just thinking about the energy I will have to use to take a shower....My standard wardrobe is workout pants and t-shirt. They don't see me get out of bed about 10 - 11, roam around the house for a bit ( I am usually hurting but can't stand being in bed anymore) Jim will come home for lunch and then I will try and go to the YMCA. Sometimes that happens and sometimes it doesn't.....:(
They DON'T see the PAIN that's in my body 24 HOURS a day, it may be a 3 or a 10 but trust me it is there!!! Right now as I am typing this my pain is about a 7! My legs, necks, arms and my ankles are killing me!!

I could keep typing and typing about how much I hurt every day but you still can't see it!!!

I can talk about how I don't remember things from moment to moment but unless you live it you really won't get it! It is not like a "normal person" forgetting something! I will be talking about something and then all of a sudden a brick wall will go up in my brain and NOTHING / NO thought is going to get thru!!

My body crashes are happening more frequently. I am on a new medicine that is supposed to be helping me stay awake. In a way it is helping, by that I mean I am not taking as many afternoon naps but my body still shuts down thru out the day without notice. The really bad part to this is when I am driving!! I really have to pull over when this happens!!! When I say I can't keep my eyes open I mean it....I can be walking and this happens. This has been happening for the past couple years just more and more....hahahahahaha.....I was talking to Jim for a second just now and in the middle of me talking to Jim my words start to slur and I slow down and start to sound like a recording that is going bad....like the battery is dying. Then my eyes start to slowly close and then that is all she wrote and I am out for a bit!!! I can go days with out this happening I think. I really need to start writing this down to see if there is a pattern?????

I can keep typing about my life and unless this doctor that is going to see me today or the people at disability live it they will NEVER get it!!!
I do have good days but my good days are never as good as their good days are....
When I first started blogging I wrote about wanting to be able to wake up, jump out of bed and have a spring in my step.....I am still waiting for that to happen!!!!

I am now going to be all over the board.....it is a rainy yucky day outside and I have pretty much been in bed all day. I have a huge pile of clean unfolded clothes beside me that I keep looking at....maybe I will fold????? My sweet daisy has been such a doll today...I know she wants to go outside and she has been so patient with me today...

I am going to end this here and my next post will be more positive.....here is hoping!!

Energizer bunny

2011-11-23T11:57:00.001-05:00

Energizer bunny

How manyof us used to have toys when we were kids that ran off of batteries, do youremember when energizers first came to market? I was ecstatic they would justkeep going and going and going, the commercial said so, I begged my parents forthose batteries so I could drive my remote control car for more then 5 minutesat a time with out having to recharge them or replace them. Well now I am an adult and I wish they couldmake some type of batteries to keep my wife from being so fatigued. I mean she is just like the old toy, we willbe talking and all of a sudden I see her eyes start to drop, she fights it andthen the speech becomes slow, then the words become slurred. I usually reachover and turn the switch off on her (tell her I love her and that she needs toclose her eyes and sleep for a bit) after about 20 minutes her eyes pop openand where ever she was in the conversation she is right back at it neverskipping a beat until the charge wears off again. Wonder is they should takefatigue out of CFS and replace it with the word energy. It’s a learning process to be able to have adeep conversation and be in the middle of making a point to have to turn theegg timer and wait for the recharge, but it’s worth it, no need to get upset orfrustrated as even a person in great health needs to recharge the batteriesfrom time to time. All we can do is hopethat one day the energizer bunny will figure out a way to help with energy forall the sufferers of chronic fatigue syndrome.

Torn between two worlds belonging in neither

2011-10-22T00:41:00.002-04:00

Torn between two worlds belonging in neither

Ok why torn between two worlds, as a husband of a woman withFibro, I am having to live what almost feels like two lives. Let me explain as those close to us know Lynnand myself were to go on a mission trip to Mexico a few months back, at thelast minute flares came and other medical issues so Lynn couldn’t make it but Istill felt I needed to honor my commitment to the team and continue on with thetrip. So we now had 7 people going onthe trip and I was the only one without a family member with them. We arrivedand due to heavy rains my room was flooded and I was removed from the group (Ichoose to be moved) so everyone else on the team was one floor above me and Ihad a whole floor basically to myself. It was an odd time, and also a quiet time for me to reflect on beingthere, Lynn’s health, Our Marriage, and many other things. It wasn’t all bad but it was just lonely, andeven when we went to church on Sunday I sat by myself. I didn’t feel as thoughI was there to be with everyone because I wasn’t I had no bond the way theydid. I spent the week doing the workthat needed to be done and as a team we did a lot, we put a new roof on ahospital, we refinished a section of roof and then built 3 walls to make a newroom in the hospital. But when the work wasn’t being done I kept to myself, Iread a book and sent emails to Lynn. I looked forward to the 15 minutes a daythat we got to talk to each other. Sohere is the deep pondering question a spouse must ask themselves, where do Ibelong? I mean, I know who I am and I am sure of whom I am but how do you continueexperiencing things in life that you want to share with your spouse but you nolonger can for medical reasons. Is itwrong for the healthy person to continue on and continue experiencing thingsonly to email pictures of where and what you are doing? Is that fair to mywife? She would tell you it isn’t fair for me to miss it because of her illnessall the while wishing that I wasn’t experiencing things with out her.

I have concluded many things and still struggle with moreconcerning the invisible disease, first the spouse still needs to do thingsthey can do, second the spouse can no longer truly enjoy things the way theyused to because the experience is tainted with the fact that my wife isn’there, or she is in pain because she is there, so you make sacrifices changeyour plans and you don’t do all the things you wanted to just to betogether. It amazes me how people justgo and not think twice about it, all the times when Lynn was healthy we didstuff we saw stuff we traveled a few new places, we made plans to visit lifelong bucket list places, but now we don’t talk of those things anymore not sureif its because I don’t want to worry her that I am missing things that we cantand don’t do anymore or if its because I realize some of those things are nolonger with in reach for how life is now. Lynn doesn’t talk to me about them either due to finances, and I couldspeculate but it just isn’t talked about. Let me give you a better idea of what I mean. I was reading my westernmagazine the other night and the pictures in the magazine are places I went toas a kid camping ( thanks Mom and Dad for letting me see those things), Ilooked at the pictures and said wouldn’t it be great to take Lynn to thoseplaces to see the history and the beauty of it all, well within a few minutesthose thoughts were gone because Lynn is having a bad time right now, and thethoughts go to, she wouldn’t be able to sit in a car and travel all day, howwould she do with the climate change, I know she doesn’t do good when it rainsand you never know when your going to get a desert storm that just pops up. Iguess we need to save the camping for close to home. I haven’t even talked to Lynn about this sowhen she reads this I am sure she will not feel good and she will apologizethat we can’t do those things, which in itself kills me, because as long as weare together it is all that matters. Weknow the beach is a good thing for Lynn usually although our last 2 trips tothe beach we have found that the fibro is still there and very much alive. So we pretty much plan our vacations now onone destination spot with a beach as the back drop. Not all bad but not always an adventure.

So now that I have rambled on a bunch of thoughts I will go back to my original statement, And I don’t mean to upset anyone with thisbut, as a spouse ( heck I am going to give it a name I will call it aFIBROMATE,, wonder if that is really a word seeing that spell check isn’tsaying I misspelt it) as a fibromate Ithink we are stuck and torn between two worlds one of old normalcy and a secondof the new normalcy,, and although I am torn between them if it is a choicebetween regular life with out Lynn and this crazy fibro Life with Lynn, I willgo to my grave happy that I am living the fibro life. And just because I dosome normal things because Lynn isn’t feeling well and cant at the time, doesnot mean that my mind and heart are not left at the house with Lynn, and thingsare never the same with out her by my side. I am just torn between the two worldsI live in now………

another day in fibro land...

2011-10-19T11:47:00.002-04:00

Good morning and welcome to fibro land! What would you like to do today? Lay in bed all day and mindlessly play on your laptop talking to your fibro friends? Lay on the couch and watch tv? In fibro land your choices are endless.......you can do all these and not even take a shower! WHICH BY THE WAY, I TOOK A REALLY NICE WARM BATH LAST NIGHT AND LOVED IT!! So I am clean...:)
In fibro land you get to enjoy the feeling of your body weighing a ton and just melting into where ever you are sitting/laying. I can even feel my butt getting wider and that is all free of charge! I know we (people with fibro) are always saying to people that don't have fibro, imagine having the worst possible case of the flu you can have and remember how lifeless you felt, now take that feeling and multiply it 5 TIMES and that is how I have been feeling since Sunday. I don't just get this way with the flu, I get this way ALL year long!!! I get this way at the drop of a hat! I can get this way just because and to top it off I get to enjoy the fun filled ride while in extreme pain!

Then the isolation sets in because everyone is living their life and you start to wish that just 1 person would notice that you are missing from life. Which makes me even sadder that no one notices.....it reminds me how my life has changed and how my girlfriends all have lives and I don't. They have no reason to call me.......they will never know that I have been house bound for almost a week, that I have cried because I so want to be outside and can't. I wish that Jim had someone to talk to about this.....this is sooo hard on him too!! I am sure he loves going to work and actually having some "normal" things happen. What I mean is, he can get away from this.....

People don't want to ask because they don't want to hear about it........:(
Someone I know and used to be very close to doesn't ask how I am doing because she doesn't want to hear anything negative. She only believes in thinking positive thoughts...which I do too and I love to think that way but sometimes I just want to talk and let it out. Only problem is no one wants to hear about it. I think they think after 4 years, I should be done with it, Well guess what, I have this for the rest of my life!!!!! I really do try to be positive and keep a smile on my face but you know what, THIS JUST REALLY SUCKS AND SOMETIMES I JUST CAN'T TAKE IT!!! I texted a friend this morning about something and told her about being so tired and she said I really should try liking coffee ( i can't stand it) I also told her that I have to go to an appointment at 2:00 today and she said that maybe getting up and going will make me feel better.....I know she meant well but it is just not that easy....

Well I have to cut this short because I just got an exciting email from my daughter that I need to read.....she can make me smile....:)

Another day....

2011-10-17T16:16:00.004-04:00

Woke up this morning and felt like I had been hit by a bus! Anyone that has fibro knows what I mean...the severe flu feeling. When I tried moving my left hip the pain was so intense that I didn't know if I would be able to walk. Imagine that pain and knowing you have to walk down a WHOLE LOT of stairs to get to your meds in the morning. (we also have a new puppy that is trotting behind me) Our next house will have the master bedroom on the ground floor, in fact I hope our next house is only 1 floor! Anyway, I had the hit bus feeling, the severe flu feeling, hip pain, every nerve in my body was on fire and all I wanted to do was crawl back up the stairs and go to bed...so I pretty much did. After I fed Daisy (our puppy) and let her out to go potty, we went back up stairs to bed for a nice long nap....I love my daisy!!!! She has been laying here sleeping for the past 2 hrs while I rest..:)

I hate the days when just the thought of moving makes me tired. I had to meet my friend Michelle somewhere at 11:00 and driving there was soooo hard!! As I said, imagine having the worst possible case of the flu and then times that by 5 and that is how I was feeling. I put on my normal wardrobe of elastic waist shorts, sports bra and tank top. Did not take a shower and trust me I should have since I have not had one since Saturday morning. I will be taking one tonight though. I am beginning to offend myself...haha

I was home by 3:00 and have been pretty much laying on the bed since then. I'm starting to get hungry so I guess I get to concur the stairs again.

I think I am actually going to grab something to eat and take daisy for a walk down the street, it is such a beautiful day and I would love to enjoy some of it. Today's high is 83 and by Wednesday it is supposed to be in the low 60's and high 50's.

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The walk was great!! We walked to the end of our street which is 3 houses and back then I let Daisy play in the backyard for a few minutes. It is so freakin beautiful outside...I just walked around and looked at everything that needs to be done and started to cry..:( I hate, hate that I can't get the work done in the back yard that needs to be done. I am stressing soooo much over the small projects not being completed. I actually get knots in my stomach every time I walk out in the yard....I just need one good weekend with Jim. OK enough of that....

O crud, I just remembered I am out of one of my pain meds and need it for tonight. Jim is hunting and will not be home until after dark and by then will be to late to get. Crud, crud, crud!!!

I just spoke to my dad on the phone, I so wish we lived closer!! Jim's parents live right down the rode from us and I so envy him that....I talk to my parents at least once a day, sometimes 2 and 3 times a day. I want to spend so much more time with them and get so angry that I can't just get in the car and drive to see them!!!! Since I have been sick I think I have driven down to the beach 3 times by myself and trust me when I say it was an ordeal each time. It takes so much preplanning and then all the preplanning can be for nothing if my body decides, hey you are going no where today!!! When I do go, I have to stop every hour and get out of the car to walk around to stretch my legs and hips. I eat/munch the whole way there just to make sure I stay awake. I call to check in every half hour. I have had to stop and take a nap when I just couldn't stay awake. I leave around 2:00ish since that seems to be a good time for me... If it is raining, forget it I am not going. My body would never make it....

A couple days before I go I know that I have to rest up and take it easy so that my body hopefully will be 1/2 ok for me to do the trip. Like I said, I have only done the 4 hour trip about 3 times by myself in the last 4 years. The funny thing is, when I was a district manager (for 14+ yrs) I drove for hrs by myself....greenville sc to Chattanooga tn, myrtle beach sc to Savannah ga, myrtle beach to asheville nc. I have driven many times up to 7 hrs with no problem....I had the states of SC, NC, GA, TENN, part of VA, ....now I can't drive to see my parents without it being an ordeal!! I hate it!!! I love my parents very much and treasure my time with them!!!!!

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This is another day, Tuesday the 18th and I truly hope it is better than yesterday. My body has just not been feeling all that great. Remember that shower I said I was going to take last night, did not happen!!! I am about as ripe as a piece of bad fruit!! I am taking one this morning!!!!!!!! Thank goodness Jim was hunting until about 9:30 last night.

When I woke up this morning I told Jim to just ignore me because I kept saying I hate my body, I hate my body! I had to get up and feed gizzy and daisy and it was pure torture every step I took!!!!
So on that note I'm going to go take a bubble bath......O' and the pictures at the top are kind of a before and after thing. The first picture is when I am feeling half way human and can function as one. The 2nd picture is how I look this morning. As I am typing this my shoulders are begging me to quit and my eyes keep closing. If I didn't fix it there would be a bunch of thisssssssssssssssssssssssssssssssss on my post. My finger gets heavy when I fall asleep while typing. Change of plans, I think I'm going to take a quick cat nap then a bath....daisy is still sleeping so I'm taking advantage of it....:)

Behind closed doors

2011-10-13T09:47:00.008-04:00

I am writing this post because I received a letter from Social Security and they are reviewing my case. They are going to decide if I am able to work yet??? Has there been some great cure for fibro yet that I don't know about? (Lyrica is NOT the answer like they say on tv) Is there some great thing out there that is going to give me my energy back 100%? I know, everyone gets tired during the day....but I wake up in the morning and about an hour or so later I want to go back to sleep. I can't drive very far by myself because I don't know when I am going to fall asleep. There are times I have to call Jim and tell him where I am because I am pulling over to close my eyes. THEY WILL JUST NOT STAY OPEN!! One minute I will be fine and then all of a sudden my body just shuts down and I have to sleep. Not to long ago I had to take a 30 minute nap in the home depot parking lot. Jim can usually tell when it is coming on, my words start to slur. They don't see me wake up 3 to 5 times a night. They don't see me get up take my meds and go back to bed until 10:00/11:00 most days. They don't see me take a whole week to do a hamper full of laundry. (could be done in 1 day) They don't see me not take a shower for 2 days and if I could go 3 days, I probably would. Just the thought of getting up and exerting myself to take a shower is so painful some days that I just don't do it!! If I do go out it is usually to the grocery store and then to the YMCA. My pain doctor suggested yoga, I liked it just couldn't get to the class on a regular basis. I can ride the bike to no where though and it makes my hip feel better for a couple hours. (my hips really hurt, especially the left one. it really burns, like right now the pain is about a 7+)

They don't see me laying down when my husband comes home from work and asks, what's for supper? If I don't have some meat defrosted in the sink for him to cook on the grill, he will volunteer to cook something else or go out and pick something up. Some weeks Jim has had to take care of supper 4/5 nights out of the week.

They didn't see me when my daughter has come to visit me and I spent 2 of the days in bed.

They don't see me when I don't leave the house for days..They don't see my husband going to social functions without me because I hurt to much to go and am also too tired.

They don't see the look on my face when my legs, ankles and feet are hurting and I have to walk. If I am home and have to go to the bathroom sometimes I will hold it as long as possible just so I don't have to walk. (I have IC, so that is not a good thing to do either)

They don't understand the passion I have for gardening and having a beautiful yard and that having to let my flower garden and vegetable garden go, kills me! Not being able to get out and work in the dirt when the weather is perfect....my body is useless to me!!!!!!

They don't see when my husband can't hug me because know matter where he touches me it hurts!!! They don't see THAT NO MATTER WHAT I AM DOING, MY PAIN IS FORE FRONT ON MY MIND!! I am typing this and I feel the pain in my left hip, my knees, my arms, across my shoulders, across my lower back, my ankles and right now my feet are about a 3. Even when I am talking to someone, my pain is there! THE PEOPLE READING MY PAPERS, READING MY FILES, THE DOCTOR THEY MIGHT /PROBABLY WILL HAVE ME SEE, DOESN'T SEE OR FEEL ANY OF THIS....BUT I FEEL AND LIVE IT EVERY DAY!!!!

Yes, I do have some good days! My good days are never pain free days though, just low pain days! I never know when they are going to happen???? Do I have great days....? I can honestly say I have had maybe 25 in the last 4 years! I can honestly say, I remember about a 3 hour period where I felt completely normal! No pain, nothing! I felt like ME!!!! I was over joyed with happiness!!

How do you make someone see and understand the pain you live everyday??? How do you make someone understand that you try to live as normal a life as you can? That your normal is just surviving the pain some days??? There are no tests to prove that when I am smiling, I am hurting on the inside...everyone on facebook sees all the "pretty" pictures that I post, what they don't see is....me!!! I post what I want everyone to see!

Feeling helpless

2011-10-05T17:10:00.003-04:00

Yes, it is really me, I am alive! In case you are wondering about where I have been and why I have not posted in so long, it is simple.....it was to darn HOT and I didn't feel like doing anything. My backyard garden shows it too! I have a 2 page list of other things that needs to be done and maybe I'll get 1/2 a page done if I'm lucky. Of course it is stressing me out majorly! I used to be able to run circles around people and get 10 things done in 1 day. Now if I get 1 thing done in a week, I am doing good. Today has been a picture perfect day and I have wasted most of it laying on the bed. That's my life....:(

I had such high hopes this morning...I was going dress shopping with my friend Melissa. A dear friend of ours son is getting married this weekend and we both needed a dress to wear. I need one because I don't have a fall dress that fits (i'm too big) and she needs one because she looks awesome!! Melissa and I went into the dressing room together that way we didn't have to keep opening the door to say what about this one? I am so glad we did....I had to keep sitting down, Melissa had to help me get the dresses off because I just couldn't use my arms, I had no strength. I also discovered what I thought was coming....shingles on my arm. I think Melissa was surprised to see how bad I was.

My energy was zapped, gone! We started at 11:30ish and by 1:00 I was done and on my way home. Where have I been since then? Laying on my bed feeling my butt spread wider and wider! So much for my plans to go to the Y today, I was so looking forward to that!

Our small group starts back up tonight....I was really looking forward to seeing everyone...:) I hate that Jim is going by himself.....something that he hasn't had to do in awhile.

I started this post the other day and never finished it so I am ending it here.....my thoughts have gone in another direction.

short and sweet

2011-07-29T10:46:00.001-04:00

My fatigue is just as bad as my pain......!!!!!!!

60 followers

2011-06-02T23:02:00.002-04:00

ok why is this titled 60 followers, well i will get to that in a few minutes. I am Lynns husband writting this post today as its been awhile and things here are in full flare. Lynn has been layed up for the last 4 weeks where she has energy for about 2.3 hours a day and then crash.......

so i will let her post as she said she was going to today but once again she fell asleep or hurts to much to type but i promise you all i will get on her about writting a post in the next few days and continue to encourage her to post daily or bi-daily. but i need all of your help if you are following drop a not here and there.

so back to 60 followers i have an idea for the followers, as i assume either you have fibro or you are a spouse of a fibro fighter. so here is my pipe dream,,day dream, my just thought of something that would be some fun for all of us. What about we get people to respond to this post if you are interested in me finding a 3 day cruise for the followers and the follwers friends with fibro to go on out of miami to the carribean sometime between september and feb ,, you know the winter months. a simple a 3 day cruise, they have deals all the time. We will call it the fibro cruise, a cruise short enough that it wont kill all of us and a cruise where us spouse can meet and talk, and all of you who have fibro can meet and talk. is it just my pipe dream for a large gathering of fibro fighters to get together and actually share and meet face to face. a time for us spouses to be able to say yes it is tough to be the spouse, a chance where we could dance, we could sit by the pool, we can enjoy a beach or two, if it gets large enough maybe we could even get media recognition where we can maybe light a fire to get someone saying wow they are all together and talking we better get are act together and work harder to find a cure becuase they are becoming orginized. and if that doesnt happen at least we can finally meet people who truely understand us and what we all deal with

so here is your homeowrk, respond to this post and say yes im in for that, i maybe, or no i have no interest in it. if you have other ideas please let me know. As i would hate for Lynn and myself to show for the cruise and it only be us not that we wouldnt have a grand time but it wouldnt be a FIBRO CRUISE,, lets fill a boat........

A post by Alexx

2011-05-10T08:35:00.000-04:00

Fibromyalgia
So today has been a relaxing day of doing nothing up until I have to go to lifeguard training at 4:30. Yesterday was mothers day and before I even get a chance to call my mom she texted me to ask if she’s a good mom. I reply saying of course she is. My mom is probably the best ever, always listening to me when I need her, never judging me, and always helping me in a tough situation even if it means lying to my dad. The list is endless. Anyways, after I texted her back yesterday I never heard anything in reply. I called once and the call wouldn’t go through and so I just left it alone thinking she was having a tough fibro day again. (If you don’t know what fibromyalgia is look it up) I called last night before going to bed and my stepdad tells me she is on the phone with their pastor, so I go to sleep. Wake up this morning and call again, no answer. Finally am able to talk to my mom and she seems to be fine. We start talking about my new job for the summer and I’ll admit I start to get a little frustrated but never did I yell. My mom gets mad at me and blows up for “yelling”. I may have been stern about a few things but never yelled. The next thing I know my ear is being blown up by my moms words and she hangs up without letting me explain. If someone does read this, the whole point of this long explanation is I am tired of fibro eating away at my mom. She has her days when she is the same mom I used to know but it kills me to listen to her get so upset that easily. It may be due to other issues in her life but fibro just adds to the struggle. Imagine waking up one morning with your mom seemingly lifeless and laying in bed all day not being able to help her feel better. Or her being in pain and wincing with every step she takes. My mom still smiles as much as she can but there is always that constant worry and wonder of how she is feeling. Not living in the same state as my mom and only being able to talk to her on the phone everyday and worrying about how she will sound when you talk to her, well it just adds to how much it sucks for this stupid fibro to eat at my mom. Yes, fibro is not a lethal disease, but it can eat away at a persons character and to me that is one of the worst kinds.

Awareness

2011-05-04T14:14:00.002-04:00

Christmas, Easter and Fibromyalgia awareness day

Ok let’s play a game here, ask 3 friends if they have heard of the 3 items listed. I would bet bottom dollar that the vast majority do not know the 3rd day exists. (its on May 12th for those who dont know) So what does this mean is it really an important day? Is it really important to make people aware of it? Breast cancer has a whole month dedicated to it and has it help that cause? Well besides the millions of dollars it gets in donations during that month, what has the month done has it brought a cure? And why would we for one second believe that an awareness day once a year on the calendar is going to change any thing? Who knows anything about this day I think it is a secret, want proof?, go to Google and type in awareness days 2011 and let me know when you find it listed, I went through 12 pages before I quit after I learned about queer, puppy mill, Ct. ski council, international vulture, singles and penguin days, that’s right all of these are list if not once multiple times from page 1 thru 12 on the awareness days for this year but not one single mention of fibro day. So really why should we care? As a community we are just trying to survive we are trying to just get thru one more day, as spouses we are living awareness day every single day (let me preface these next statements, all of you reading this that have fibro you do not need awareness as you are the one living it day in and day out). Why would I say this, ask a spouse the following questions, Do you wonder how I am feeling this morning this afternoon this evening? Are you frustrated that we can no longer -- ---- (fill in the blank)? When I feel bad do you wonder if I took my meds, do you say to yourself I hope this isn’t going to be a bad spell of pain for her, do you get frustrated because everyone of the friends you have always ask how I am doing, but never wonders how the husband is? Do you get tired of every time you show up somewhere alone the first question asked is “ how is your spouse and where is she will she be here today” ok I know it sounds like a pity party it isn’t really it is just the fact that no one is truly aware of what goes on in the houses of people with fibro, they see only the glimpse of it’s a bad day, or she feels bad enough to stay home and miss this, must be like a 24hr flu bug. I mean what does awareness really do for the cause everyone of us is aware of how are lives have changed but not one of us know what tomorrow is going to bring. I know my wife isn’t looking for someone to take pity on her because this one special day is coming up, and I don’t think I have one single person I have come in contact with in the past year that doesn’t know someone with Fibro, and everyone has a cure except the CDC or FDA except lets pump them with some new meds and see if this will work this month. What does awareness mean and how many of us really stop and learn about the cause on awareness day? I do research every week on news and info about fibro and I am no more aware of what is truly going on then the person who just found out today as we read this that she has fibro is aware of how life will be forever changed.
Let’s for one moment forget about fibro awareness day and ask what can we really do to change the mind set of the people in America and the world to help them understand what this disease truly is. It is a terminal disease (check Webster’s, Wikipedia, medical dictionary) I will let you look up the definition to see if I am right, So why don’t we as community of survivors and spouse start contacting our senators, our doctors , who ever we need to to have it changed and then maybe we could truly get the recognition it deserves and maybe even the funding to find a cure instead of some new medication. ( its not that i am being negative by trying to label it as terminal, I just want to feel as though the medical community takes this seriously and puts the funds to finding a cure, or at least the cause so we can see movement towards a cure)

Well I guess is should end this here but before I do I am asking a favor of all of you, if you are a spouse take note you are not alone, if you have fibro I have no clue what its like but I love my wife and I live the repercussions of this disease, and most if not all of us who are spouse do truly try to understand but some days we just cant, if you are a friend I understand you get frustrated at how we don’t show up some times and most times we are late getting there and its hard to get us to commit to anything, understand this isn’t how we want things either but we do understand when you lose patience on us as we lose patience's with ourselves. Please feel free to post a comment and lambs baste me for what I have written or just leave Lynn a comment

FROM NEAR TO FAR FROM FAR TO NEAR FUNNY THINGS ARE EVERYWHERE (this line is for LYNN)

pictures

2011-05-02T21:42:00.000-04:00

This is why I love spring!!!

more pictures......well actually there are no pictures yet because i can't get them to download but i will keep trying...

2011-05-02T13:18:00.008-04:00

These are some more pictures from our Golf tournament, BBQ and Auction.....plus some random flower pictures. I love this time of year working out in my yard. I just wish I had an unlimited supply of money to do what I wanted and could hire a crew of people to come and do the really big projects. I mean Jim and I could probably do them if.....my health was better, we had the big equipment and there were more hours in the day!

We also don't want to do too much work to the house until we find out what the airport is going to do.

A sense of me???

2011-05-02T10:36:00.007-04:00

I am not sure if my title for this post will make sense to everyone but it does to me and hey, that's what matters!!! haha

I have no really good excuse for not posting lately except for it takes me about an hour to type a paragraph! It is getting harder and harder for me to get my words from my mind to here. It is like there is a brick wall and when it comes up it stays up and I have to fight to get the words thru. This will sound so strange but it is like I can feel the words in my brain and they are right there and they are fighting-stretching to come out??? I will type something and reread it at least 10 times and most times change what I wrote and go in a different direction.
The past couple of weeks I have had to send out emails concerning the MEXICO MISSION TRIP Jim and I are going on at the end of June. I have been driving him crazy because I have had to ask him to help me. By that I mean I will type a sentance and then ask him what he thinks and end up changing the whole thing. It is so frustrating to me!!!!

I was a District Manager for 15 yrs and would send out emails daily. I was a DM trainer and would deal with people from the corporate office all the time thru emails. I never had a problem!!! It is so maddening to me not be able to do something that used to come so naturally to me. (by the way, it just took me 23 minutes to write this paragraph)

I am knocking on wood right now as I type this.....since about the end of March my pain has not really been above a 5/6 except for a handful of days. My mornings as usual are still cruddy! This morning I woke up and I swear I could feel EVERY nerve in my body. I told Jim it felt as though they were back firing, or they were on fire! When he went to kiss me goodbye, he was being silly (which I really love for him to do and I hate that fibro tries to steal that from him) by being silly I mean he was just giving me a bunch of kisses really quick and I had to say, baby please don't. I HATE FIBRO!!!!!!!!!!!!!!!!!!!!!!!! He said ok and acted as though he was ok but I know he hates to hear me say that. He is so strong and is always there for me!!

OK now back to my tital....This past Saturday we had the first of our 2 fund raisers for our MEXICO MISSION TRIP. It was a golf tournament, BBQ and Silent Auction all together. I was in charge of the silent auction and I am so happy to say that we raised more money than we did last year and that everything was bid on except for 2 things. Last year there were roughly 20 people that went on the mission trip, this year we only have 8.
This is my first mission trip and I am so excited, nervous, scared and a whole bunch of other emotions. I need to explain something....Last year I wanted to go so bad but there was no way my body could have handled it, or my mental state!
Jim and I talked and prayed about it and said that if my body and frame of mind were in a better place that we would go this year. The group that we are going with could not be any better and I know that they will watch out for me. Make sure that I am doing ok and that I don't over do it. Going on the trip is our dear friend Paul (Jim's best friend and business partner)his son Nick, Chris Stegall and his son, (Chris is in our Bible study small group and is also a very dear friend)our Pastor and his wife Jaime. How is that for a group??? They have all seen the good, the bad and the ugly with my fibro! The have all prayed for me, prayed with me and stuck by me. As far as I am concerned it is a good group. Only thing that would make it better is if my daughter was going!!! Also it would be nice if Paul or Chris's wife were going. Well, there is always next year!

OK, OK, I still have not explained my tital....so here goes. Being in charge of the auction was the first thing in many years that I have been in "charge" of. I mean I came up with how I wanted to do it, set it up and so on. My pastors wife, Jaime was right there with me the whole way helping me. (we only had 2 months to put the whole event together)Anyway, I'm not going to go into all the nitty grity except to say that it was frustrating at times for me. After everything was all done and everyone was all gone, everything was picked up and packed away.....me, Jim, Jaime and Craig sat outside at one of the patio tables (the auction was held in the golf club house)and counted the money from the auction, went over receipts and just talked about numbers, how much money we made versus last year. I FELT LIKE ME!!!! It felt so good to feel normal!!

SO NOW I TAKE A DEEP BREATH AND PUT MY BIG GIRL PANTIES ON BECAUSE TODAY I START GETTING READY FOR THE MEXICO MISSION TRIP YARD SALE....which is JUNE 4TH
I AM IN CHARGE OF THIS TOO........so if you are reading this and want to donate something for our yardsale, please contact me...:)

Jim has been on several mission trips and when he talks about them his face lights up. Listening to him talk about the children in India and how he felt when he came back. He has said several times that he would love to take me there but that is just one place at this time I have no desire to go. Maybe one day???

Well, this has been longer than I thought it would be but it felt good to write something. Even if it did take me almost 2 hours to get it done..:(

I am alive!

2011-04-06T10:15:00.005-04:00

Hi, my name is Lynn and I have Fibromyalgia. I just thought I should reintroduce myself since it has been a month since I last blogged.....I mean I of all people know how bad our memory is!!! Mine seems to be getting so much worse that sometimes I feel like I am living in a parallel world???

Before I go on I should probably explain why I have not blogged in so log. Honestly, I have no good reason but here are a few of my reasons/excuses....1. just don't want to think and write. 2. don't want to complain anymore. 3. don't want to fall asleep while typing 4. the days that I am moving about I do not want to stop to think and type. 5. I was without a laptop for a week. 6. I just needed a break!!!!

Since it has been soooooo long since I blogged I really don't know where to start with my thoughts so I am just going to start rambling and see where I end up.

Right now I am laying here typing this and my arm is hurting. I have a shingles out break for the 2nd time in about a month! I have a scar from the first batch and this outbreak is right next to it. I have got to go back to my doctor and get back on the daily meds I was taking for this. I just REALLY don't want any more medicine! Then again I REALLY don't want Shingles!!! THEY HURT!!!!!!

This past month has been a lazy month for me and I don't like it. What I mean is when I wake up in the morning I am taking way to long to get going! I waste 2 or 3 hours every day doing nothing. I hate it!!!

**********************************************************************************

Ok it has been a few days since I wrote that and I am back again. I am going to post this one!!!
I don't know what my problem is??? I just can't seem to get going in the morning? I waste so many hours of my day doing nothing before I start my day. I don't know what it is??? I don't think it is depression??? I am typing this and want to scream because it is 12:30, the sun is shining, not a cloud in the sky and I am lying on my bed typing this,,,,,what the FRIG????? This is so not me!!!!! I keep falling asleep, my head bobs off and it is a heavy bob!!!
I HAVE GOT TO BREAK THIS CYCLE!!!!! IT IS DRIVING ME INSANE!!!!

I drove to Wilmington Tuesday and stayed the night at my sister in law Kris's house. Why, you ask? My dentist is in Wilmington. Why do I drive 3 1/2 hours to my dentist? Because they take payments and I need about 4,000 worth of dental work done. I just had my permanent crown put on yesterday and they did a good job. Now I am trying to decide if I want a bridge or an implant done on a back tooth. If I have enough bone I think I will go with the implant. They are really good.....BOZART FAMILY DENTIST

I have decided to do an experiment....when I woke up yesterday I WAS NOT IN PAIN!!!!!! IT FELT WONDERFUL!!!!! The only thing different was that I was closer to the beach and the bed I slept in was super soft and comfy.
I am going to the beach this Sunday and am going to track how I feel every morning. I know that for the most part I do very well at the beach but was it the bed?????

I am trying to keep my stress level down but when you come home and find one of the windows in your house falling out. Not actually falling out but the trim in the middle that holds them in was just flapping in the wind!! Why do they have to cost so much???? It seems like every time we start to save and get somewhere something comes up. I mean we are trying to save up to get my car fixed which is a couple thousand then comes the windows. We have always hoped that the airport would help with the windows but we can't wait any longer.....$7852.00 That is for the basic basic windows. No frills...

I know that God will provide and that worrying will do me no good so I put it in his hands. This is so hard for me to do. I just want our house to look nice and be able to open the windows. I know our house looks nice, I know, I know!! I am just so tired of worrying!!!! I don't mean to sound spoiled and I don't mean it that way. I actually got sick/knots in my stomach last night about this. I have worried about our windows for years and I have actually dreamed that they fell out during a storm...God I give this worry to you!

As for my pain I have been doing ok.....when I posted the other day I had shingles on my arm. Well, it went away for about 2/3 days, came back again and is back again in a 3rd spot. All on my arm......I am going to make a dr. appointment today.

When I wake up I take 2 pills for pain (excuse me, when my cat wakes me up) and for awhile there I could take my afternoon pills anywhere from 3 to 6, now if I don't take them by 4 I am suffering. I am finding that my mid afternoons are hurting more......

I really don't like feeling as though I am being buried under by stress!!! I feel like I have soooo much to do and can't seem to get it done...

1. Get yard done
clean up top of hill
plant flowers around mail box and paint mailbox post
plants on other side of driveway
rose bushes around garage
2. yard sale
clean up from yard sale
3. mission trip auction
get items for auction
make signs for actions - delegate
4. mission trip yard sale

CLEAN HOUSE!!!!!!!!!!!!!!!!!!!!!

I need to post more often, I forgot how therapeutic this could be.....:)

Cant walk

2011-03-05T23:01:00.002-05:00

My husband and I have an inside joke / saying and it is that he will never push me in a wheelchair. He will do everything else for me but that is crossing the line for him...haha. (it is a joke between us, it really is)
Anyway, I never really thought much about me having to use a wheelchair one day but after this past week, that could be more of a reality for me. Why do I say this??? Because the pain in my feet has been so bad the past couple of days!!!!! Just the thought of standing up and taking a few steps is almost unbearable. It feels as though I have a million tiny needles poking me in my feet. It seems to get worse at night. Not only my feet but my calves as well have been extremely painful....for some reason rubbing helps my calves some....

OK now lets go to the top of my head.....I don't want to brush my hair because the bristle touching my scalp hurts really bad......it is the kind of pain that makes your stomach upset when the bristle hits my scalp. Does that make sense??
This pain doesn't always happen and it's been awhile...I'm ready for it to go away again...:(

One last thing....If someone wanted a mixed drink and they said, shaken not stirred then I would be the person they would give it to.
As many of you that have fibromyalgia know your body jerks. Well, at least mine does!!! I have good days and I have bad days....I feel like today has been a pretty bad day and my grip in my hands has not been all that good either???? I haven't quite figured that part out yet. It does worry me some days though....
Right now I am typing this and when I say my body is jerking it is not small ones, they are big enough for Jim to see across the room and for me to move things.
It doesn't just happen at night either.....it is frustrating though when I am trying to fall asleep. (I am worried I will hit Jim...haha)

The good part to this blog is....I was able to get outside today and do a little bit of yardwork! That makes me very happy! We have a long way to go but it is a start. It takes me ALL spring and summer now to do what I used to be able to get done in a month.....

O Yea....one more thing.....I have shingles on my arm!!!!!

On that note I am going to bed....gotta get up for church in the morning. I have alot to be thankful for!!

mind over matter

2011-02-23T08:49:00.002-05:00

I have so much that I want to do and just can't seem get my body to move lately. I am talking about everyday things. I have a box of things that have been sitting at the bottom of my stairs for over a week. I never leave things that long and it is a big box. I have been wanting to get out in my backyard and clean it up. It needs it so bad, maybe today will be the day. I am really hoping that this Saturday can be a yard day with Jim. So much to do and I can't do it alone....

HAHA....I just put Dr. Oz on and he is talking about ENERGY. He says we have an ENERGY CRISIS in America....how funny! He says we can turn our energy level around in 7 days. The author is on for the book, The 7 day Energy Surge....
Well, he didn't tell me anything that was really earth shattering.

I think the tanning bed is calling my name today...:)

I still don't like mornings. Thank goodness for my gizzy, he makes me get up every morning to feed him. So I stagger down stairs, feed him then take my meds. I am saying this because thank goodness this past week my pain has been pretty manageable once I get going in the mornings and has stayed that way through out the day. My energy level has been worse than my pain ....My pain is there of course, that never goes away. It has just been manageable, which doesn't happen that often. I have had a few spikes during the day but overall I will take it. Now if I could just get my energy to match....

Well the count down has started for the Mexico mission trip. Yes, I am going on my first mission trip this June. Jim has been on several....I am so excited and nervous at the same time. Really though I am not nervous because I know that God has everything under control. Everyone going knows about my health and I am taking EVERY procaution and have faith that ALL will be ok that week!! Last year Jim and I talked about going but my health was so bad at the time there was no way I could do it.
Jim and I prayed about it this time and just really feel led to go. It is a small group from our church and I am so excited. It is going to be hard work and not living in luxurious conditions but I just feel it is the right thing to do.
We are having a couple of fund raising events to raise money, 1 of them is a golf tournament and the other is a HUGE yard sale. I am in charge of the yard sale and am excited......(Claire, I will make you proud)

Quick Post

2011-02-22T11:04:00.002-05:00

Well yesterday didn't go as I planned....I got a little frustrated and tried my best to not let it get to me.
I had planned to go to the Y and do some yard work but my body felt like it had a 50 pound weight tide to it and it took everything I had just to stand up. I did get some cleaning finished and that made me happy. Considering I had started it a week ago...haha
I finally couldn't take it anymore and layed down on the couch about 2:30 and crashed until about 4:30. Wow that helped and my monavie energy drink got me going. I had a church advertising meeting to go to at 5:45 and really didn't want to miss it. I am so excited we are working on creating our church website. Well, I am just offering my opinion and getting info I am by no means doing any of the technical stuff!!! We are also working on the mailer for our Easter service.....

Today is another day and I am going to go to the Y and I am going to pick up the limbs all over my backyard and deck from the weeping willow in my yard. I am going to clean up the back deck and if I am really lucky....trim my rose bushes. I am kinda nervous about trimming them since I have never done it before. I love my roses and they are beautiful when they bloom. I am going to plant a couple more bushes in the next couple weeks. Maybe even this weekend?????

Well gotta go and see if my day goes as planned.....

By the way, I am feeling pretty good today...:)

Testimony

2011-02-20T16:16:00.002-05:00

Today has been a very good stressful day! A very blessed day, A day that I have needed for along time.....
First I need to say that I have never loved my husband more than I did today when he came to stand beside me as I was giving my testimony at church. I had every intention of not crying even though I knew I would. I had asked Jim to sit in the front row so I could look up and see him while I was talking (we usually sit in the very back) I think I had spoken maybe 20 words and he was right up there with his arm around me letting me talk.(yes, the flood gates opened up) Last Sunday during the sermon our Pastor was asking for people to call him if they wanted to give their testimony and it had to do with what he was preaching on. How has God shown himself? Why are people afraid to talk about the good things God does?
Last Sunday when he asked for people to call him at that moment I knew I was going to call him!! Call it the Holy Spirit working in me, call it God working in me, I just new I had to call. I got so excited about doing it.......BUT MAN WAS I TERRIFIED TODAY! hahaha

I spoke briefly about how fibro is not like the commercials you see on tv. I spoke about how I live in pain 24/7 and that I can count on 1 hand how many days this past year I was not in pain. How it is not just pain but fatigue, memory issues, bladder pain and many other issues.
I described how I used to be an EXTREME type A personality. Worked 60 hr work weeks, outgoing, energetic and as Jim nicknamed me, Spunky! How when people see me I have to work so hard to not show pain....
I talked about how it has changed me and becoming reclusive if not careful!

******all of this took less than 5 minutes, I spoke slowly and just hit the bullet points I wanted to talk about******

Then I talked about.....
How I have questioned God so many times....WHY ME? Why did you let this happen to me? What did I do to deserve this? I was so angry!!!!!! For the most part I hid it to the outside world...but Jim knew. Jim knew everything and saw everything.

The winter of 2009 through February 2010 was perhaps one of the darkest times of my life!! I just couldn't take it any more! I felt as though God had abandoned me! I told Jim that I knew how to end my pain!!! I scared myself and I scared Jim. I was no longer the woman he married... There was a weekend that Jim went on a ski trip with the church youth and I just couldn't go....The entire weekend I stayed in bed, maybe got up 6 times total. The only person I spoke to was God and Jim...I promised Jim before he left that EVERY TIME he called no matter what time it was I would answer the phone. I cried and begged God for answers! I just couldn't take it anymore! The thought of living my life in pain and never being the person I was.....I felt so empty inside, I really cannot explain it! I was actually at one point that weekend laying in the dark yelling at God!
I cried like I have never cried before....I had a moment where I took my pills and had them all in my hand.....then the phone rings and it is Jim...I had promised to answer every time he called so I answered!

The following week at our small group Jim asked Craig, our Pastor if he would pray for us. I can't remember if it was that night or a day or so later but Craig asked Jim if I would allow Craig and the Elders to Pray Over Me. When Jim told me what Craig had asked I just started to cry!!! I didn't know what it meant but I can tell you that a complete peace came over me!!! I said YES and when can they do it?

Pastor Craig, Rob and Al I know were doing Gods work that night but they will forever be special to me! I have told them they have no idea what they did for me!! I KNOW IT WAS GODS WORK!!! FROM THAT MOMENT, I KNEW THAT GOD WAS WITH ME AND THAT EVERYTHING WOULD BE OK! IT WAS GOD SAYING, I AM HERE AND DON'T GIVE UP!!

I still have my pain and I always will! I still have bad days mentally and I always will! I still have major fatigue issues but am learning how to pace myself! I still have days where depression can get to me but that's ok, I don't take any pills for that! I was able to loose a little over 30 pounds that I had put on greatly due to some of the meds I was taking and my lack of exercising. I am now able to go to the gym 3/4 times a week if I am having a good week. I don't do anything that is to strenuous just enough......

Jim and I are closer than ever!! I know that God hand picked Jim just for me, we were meant to be! Only God knows what he has planned for my life and he knew that Jim would be my hero in helping me survive this awful disease! Fibro can and does stress even the best of marriages to the braking point and our marriage is truly blessed by God! We are closer than ever....

Take the good with the bad

2011-02-17T08:32:00.003-05:00

Short Post

2011-02-15T10:18:00.004-05:00

This is going to be a short post at least I am going to try to make it a short - quick post. Yesterday I spent 45 minutes on a post, had it all typed and was adding pictures for Valentines day and all of a sudden my aol service went down and POOF it was all gone!!!! So here goes the cut down version.....

My tooth/mouth is better still have alot of work to be done but at least I am not in pain. I found out that I do clench my teeth and pretty badly too. The pain last week was because when the root canal was done and they put the temp crown on they made it way to big/higher then the teeth around it. So when I clenched my teeth it was making everything really out of whack. So she ground the temp cover down to match the rest of my teeth and all is better now. I am going to ask about a mouth guard. I never paid attention to clenching my teeth but wow, I really do it!!!!

This past weekend was a really really good weekend for me!! I mean Saturday I think my pain was about a 3 and that is almost unheard of for me. The weather was beautiful...I always find that amazing how when it is sunny and warm my body feels better. See, this is why Jim and I need to move to the caribbean!!!!

Come on spring time, I am ready for you to get here!

Feeling Normal

2011-02-09T17:26:00.004-05:00

I'm laying here watching the Doctors TV show and they have Montel Williams on and they are talking about life changing transformations. They just had this young lady (20 - 30)on that had this terrible body tic. It made her whole body shake and convulse uncontrollably. I missed the beginning but if I am not mistaken it is something that came on without warning and within the past 5-7 years.

I need to back up a minute. Montel Williams has MS
and he was talking about all the doctors he has been to, all the medicines he has tried, all the research he has done, how it has completely changed his life. He looks wonderful! I was trying so hard not to judge him because I am sure he suffers greatly. I felt like such a hypocrite he looks so good how can he feel bad? Of course he has the money to afford the best care....what does that make me????? Jealous, envious both!!
I mean I am laying on my bed (I did just get back from the Y where I rode the bike for 45 minutes...yea!) mouth hurting, looking like crap and it's not because I rode the bike it's because I just feel like crap. My left hip if you were to touch it in just the right spot, I would slap the crud out of you and say a few choice words. If I don't move my left hip for awhile the pain gets almost unbearable. My IBS is in action or should I say lack of, haha. My shoulders and neck hurt, my legs and feet, well that's a never ending story.....

OK now I need to go back to the young lady with the convulsions. Somehow Montel ended up meeting her and thru him they found her a doctor that did this new surgery on her brain and now she is almost "normal'. When she sat down to talk what got me was when she said that she was so happy to have her life back!!! She never thought she would be "normal" again!! For some reason that just hit me like a ton of bricks! I know I have said in other posts how all I want is to feel like the old me!!!

To just feel NORMAL!!!! I have not forgotten what it feels like but I wonder will I forget what feeling normal feels like? The last time I felt normal was well over a year ago. It was just an odd day out of the blue. I felt like me, I felt clear headed, my body just felt right and I didn't hurt!!! I walked and did things and just felt so freaking good!!It lasted for 1 day but it was a day I still remember. I can close my eyes and I can FEEL it!!!! I DON'T EVER WANT TO FORGET IT!!!!

It is kind of like a person that is slowly going blind and they are afraid of that one day when they are totally blind. Will they forget what things look like?

I don't want a normal day for the rest of my life to be in some sort of pain!!!

Jim says that he feels as though he is losing me sometimes. That is more true than he realizes but then again it's not! I am so not the person I was when we met.

The before and after of the lady on the Doctors TV show today, I want that to be me so bad!!!!! I sat there and just cried watching her. She was so happy having her life back and being "normal". I want that!!!

Not sure what I want to write about?

2011-02-08T10:55:00.005-05:00

I am not really sure what I want to write about today so I think I will just write a bunch of bullet points....because I have a bunch of things going on in my mind and if I start writing about all of them, I will surely lose you.....:)

1. Last week I went to visit my daughter and my parents at the beach. Can we say sleep and no energy? I spent most of my time sleeping and when I wasn't sleeping I was laying around. One day my parents went to WalMart and I thought OOOHHH I will go and get out the house and do some shopping. Ha Ha, that is so not how it went for me. I went into WalMart and actually had to use a buggy to lean on just to stay upright!!!!!! I tried walking around and decided that was taking way to much energy so I actually asked my dad for the car keys and went to the car and laid down. ME, I LAID DOWN IN THE CAR INSTEAD OF SHOPPING!!!!
I had a dentist appointment in Wilmington while I was there and my father and his friend Dutch drove me down and back. I had a root canal done on the Friday I was there and I am still having pain. I am trying to figure out if the pain is from my fibro or from something to do with my root canal. I have alot of pain in my gum line where he might have given me the Novocain shots? I mean my cat head butted me the other day (in a loving way) and hit that spot on my jaw and I about hit the ceiling. Today it is not as bad but it still hurts. Yesterday my top and bottom front teeth just ached and wouldn't stop. Well, I lied, the pain is gone for a little while when my pain meds first kick in. I have more dental work to be done, yippee!!!!

2. I am a big believer that eating healthier does make you feel better whether you have fibro or not. I wrote a couple weeks ago about my mother in law Sue having by pass surgery (doing awesome by the way) well since her surgery my husband has really been trying to eat healthier and I am sooooo proud of him. He has been doing a fantastic job. We are slowly going to the Y together. I mean we go just trying to go together is alot harder. I am bringing this up because I just want him to know how proud I am of him!!! He motivates me to work out and I need that!

3. My stomach has been acting up again. Waking me up about 3 or 4 and making it impossible for me to get a good nights sleep. It is like a burning in my gut that is so intense. Sometimes I just want to get up and walk around. To top it off I have the ever loving pain in my left hip!!

4. I am so very worried about my cat Gizzy!! For the past couple years he has been having breathing problems. What I mean is runny nose, congestion, sneezing, and wheezing. It would always come on after I let him outside for awhile. (he is an indoor cat)the vet has always given him a shot and he has gotten better but this time he has not been outside. It came on all of a sudden and fast. His breathing does not sound very good. I think he is part lap dog.....everywhere I go he is right by my side or laying with me.....I love my cat!!!
Taking him to the vets tomorrow, say a little prayer please!

Being flexible

2011-02-01T21:22:00.002-05:00

I am not sure how it goes but I know there is a saying that goes something like this....best made plans are something something something???? Well my plans for today got totally turned around! I was supposed to be going to the beach today to see my daughter and my parents and spend sometime with them. I am still going, just not today..:(
Anyone will tell you though when it comes to having fibro, you will learn to be flexible. I know that I am a little being on time challenged (being on time, no comments needed from the p-nut gallery) I have had to learn that it is ok for me to change my plans completely. Jim and I have also learned not to commit to alot of things or if we do commit we make sure that who ever it is with they understand what might come up.
There have been times where Jim has gone without me and that I do not like but there is no reason for Jim to be miserable too. I don't get upset with Jim for going, I do get sad. I mean I would be lying if I said it didn't bother me at all but then again I am usually feeling pretty bad and all I want to do is be left alone at that point.

Back to today.....I had plans this morning and these plans meant that I had to be up and somewhere by 9:30am. That was my first mistake of the day!!!!! Me and mornings do not do well especially when I am not feeling well, which I was so not feeling this morning. My friend and I got done about 1:30 and then I went to the grocery store to grab a few things for Jim. (I didn't want him to stave while I was gone) I don't know what happened between the grocery store and me walking to my car but my whole body went into complete shutdown! I drove home put the groceries on the counter, walked up the stairs and crawled under the covers and that is all she wrote for a couple hours. My body felt as thought I had been hit by the infamous mack truck that hits all of us! My legs and feet, I can't begin to explain that pain. There was no way I was going to the beach today and I hated that.

Tomorrow is a new day and I am heading to the beach...:) Am I nervous tonight, yes I am. Why??? Because I want to wake up tomorrow and be ok to drive....

This is just one of the fun parts of having fibro. So when people tell me you look good or think just because I am up and about that there is nothing wrong with me and I should be working or why don't I work?? Today is a great example!!!!!!!
My body can go from one extreme to the other in a matter of minutes!!!

On that note, I am on the couch and Jim is sitting in his chair having to say my name because I keep falling asleep as I am typing this.
So....sweet dreams

Ugh

2011-01-31T09:26:00.002-05:00

I have to start with something that I think is funny first and something that is sad...(wow, this is taking all my energy to type)First the sad news. Last Christmas I helped my dad adopt a cat (about a yr old) which he was giving to my mom for a Christmas present and her name was Lizzy. Well this past Friday I got a call that Lizzy had been diagnosed with leukemia. Just all of a sudden the past couple days she had been throwing up and not acting right..:( Lizzy was in alot of pain and now she is playing in heaven. I am telling in hopes that if anyone that reads this, please be informed when it comes to feline leukemia, it can be prevented!

Now the funny, well kinda! My cat has gotten into the habit of waking me up to feed him if I don't get up on my own when Jim leaves for work. What I mean is, Gizzy (not Lizzy like my moms cat) will come to me and sit by my head and start pawing me on my head. I think he learned this from watching our dog. Our boxer used to do this every morning when she wanted to be let out and I was sleeping.
I try to get up when Jim leaves, stumble downstairs and take my meds and feed my cat. Then I usually come back to bed until they kick in.

This morning Gizzy tried his best to wake me and bless his heart it just wasn't working. I woke sometime about 4ish I think and the rest is history. I mean he tried pawing me on my side and that hurt! I mean just the pressure from my cats paw hurt, how crazy is that? I actually rolled over so he couldn't keep doing it...I barely remember Jim leaving and I always love to kiss him goodbye every morning.

I really feel like crap today!! I don't know if it is because it was a stressful/sad weekend because of Lizzy? I did do alot of crying.. I didn't do to much so I am confused??? Yesterday was BEAUTIFUL weather wise and today is cloudy??? I even layed down a couple times during the day yesterday. I did do some cleaning but nothing that was way out there??? I did do 30 minutes on the elliptical on Saturday and it was the good sweaty kind...it was great because Jim and I went to the Y together..:)
We have started making some healthier life changes. I am so proud of Jim! I know some of the changes are not easy but he is not giving up. I love it that we are doing it together, I love the closeness!!

I really hope that this flare doesn't last long, I have a plans this week and I really don't want to miss out on them....I GET TO SEE MY DAUGHTER and my PARENTS and that makes me happy. I am going to be getting a root canal on Friday and might be getting 2 root canals in 1 day, wahoo! That is just the beginning of all the dental work I need to have done. I am defiantly calling to get Jim a teeth cleaning app...I don't know if it's the fibro or what but my teeth have never been this bad. I do know that having a very dry mouth from one of my meds hasn't helped according to the dentist.

I really hope this trend of me waking up to bad mornings ends today! I mean my mornings are never good but the past couple of mornings, on a scale of 1 -10 they have been about a 10+. I lose so many hours of my day just trying to get started and I honestly can't stand that!!!!!!! Like I am laying here typing this and my body is just one dead weight and the thought of getting up and having to move is UGH!!!!!

So I am going to end this now and work on motivating myself to get up...:)

I can handle my fibro pain

2011-01-25T17:41:00.005-05:00

Well I finally broke down and went to the dentist today. Jim had called around yesterday trying to find one that would work with us financially, like a payment plan or something. I need so much dental work done and my teeth have really been flaring lately. I have 2 on the left side that need immediate root canals! (yes, they are that bad)Last week I was putting orajel on my teeth and gums trying to make them feel better but that only works for a day or 2. On the right side I have a tooth that is missing where I once had a root canal done and the partial buildup was done and then the partial broke so now I have a big hole that is collecting gunk...this needs a bridge or a whole new tooth.
My gums are receding and my teeth are turning yellow....I USED TO LOVE TO SMILE!!! EVERYONE WOULD PICK ON ME BECAUSE I HAD SUCH A HUGE SMILE....

I can handle my fibro pain......BUT I CAN'T HANDLE THE PAIN I SEE IN JIM'S EYES THAT HAVING TO WORRY ABOUT HOW WE ARE GOING TO PAY FOR THIS CAUSES!!!!!!!

I know I have to trust that God is in control and that everything will workout.....I am just really tired of having to worry and the stress that Jim has to go thru....

Well there version of working with me is not really what we had in mind....
Lets say the crown and build up would cost 1400.00, (x 2) I could write them 4 checks and they would deposit on a month or something like that. He said they used to do monthly payment plans but got burned so many times....., maybe Jim can get something worked out. The root canal of course has to be done by someone else and that is $920.00 and I need 2 of them. The place that is doing them does not work with you. O' but of course they have this program called CARE something that you can apply for. It is like a loan/credit card program for dental and you can borrow up to $25,000 but of course we were turned down because of the bankruptcy.
Of course all these people do is look at #'s they don't look at the people...if they did they would know that we could afford to pay it back!!!!
We just don't have thousands of dollars laying around up front!!!!!
I mean we are saving up money, we are seeing things turn around and slowly but surly we are getting back on track but then this comes along and BOOM we will be back to where we started.....

I honestly have a hard time some days looking at Jim, I feel so guilty!! He works so hard and makes a very good living for us and it always me and my illnesses that come along and side slap us!!!!

I can handle my fibro pain, what I can't handle is that Jim is doing everything he can to make things right for us and my illnesses keep taking us back! It seems that every time we turn around and things seem to be going ok then something else comes up that is needed for me! Last year was one of the toughest years for us and we got thru it together! We had to file bankruptcy due to my illness and me not working. (it took us struggling for 3 years to get to that point and Jim did everything he could so the we wouldn't have to) Just going from 2 incomes to 1 income and having all the bills for 2 incomes and having a second home that just would not sell....IT TORE ME TO MY CORE!!!

I am laying here trying to write this and all I am doing is crying...I so wish my fibro pain would be intense right now and I could just curl up in a ball and not think about my teeth and what I am doing to Jim.

Jim is always telling that it will be ok but I know that he is stressing so much!!!! I hate it more than anything else.........

I mean we found out a couple of weeks ago that my car needs about 4 thousand dollars of work done to it!!!!!! Great, what do we do about that??
We just want to have our cars paid off and not have a payment and now this??????? Do we keep my car and invest the 4000.00 to fix it? Do we try and trade my car in and get another used car that will have longer payments (which will probably equal about the 4000.00) but then again, WHO is going to finance us at a good rate for a car loan?????

I WOULD RATHER BE IN FIBRO PAIN THAN FOR JIM TO HAVE TO KEEP DEALING WITH THE STRESS THAT MY ILLNESS KEEPS BRINGING ON!!!
Jim tries so hard to make me happy and I am so blessed to have him as my husband, I AM JUST SO FREAKING PISSED OFF AT THIS STUPID DISEASE AND WHAT IT HAS TAKEN FROM US!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I know I sound like I am having a pitty party and if that's what you want to think then so be it but as I always so......IT'S MY BLOG AND I CAN WRITE WHAT I WANT!!!!

Having fibro means you have to deal with pain EVERY day of your life, one day it maybe real low and the next it can be off the charts but you know you are going to have pain...
Having cfs means I am going to be tired alot.....I am learning to adjust to that...

I JUST WISH THAT IT DIDN'T COST SO FREAKING MUCH!!!!!!!!!!!!!!!!!!!!!

ok i'm done!

A Cold or the flu?

2011-01-23T20:25:00.002-05:00

I am laying here in bed on Sunday night and it is only 8:25! I keep nodding off and waking up, just wish I could stay asleep. My legs are really hurting bad and my left hip is really giving me a fit. When I went to my pain doctor on Wednesday I got a shot in my left hip but it didn't make a bit of difference. In fact, I think it is even acting up more, hurting more! Just to touch it makes me want to go thru the roof.....
Well Jim got over his cough and now I have either got a good ol cold or am coming down with the flu. I am pulling for a cold!!! Either way I am going to be taking me a good dose of Nyquil here in about an hour...:) then off to lala land for me!
I just don't want it to get any worse because I have a very busy week ahead...well what I call a busy week. I am sure most people would say that what I call a busy week is a lazy week!!

It is still soooo sad that people don't get fibro!! I have always been a strong person but come on I am tired of being so strong...I am ready for a rest!!!
I honestly don't think any of my friends could go thru a month of what I do and make it as I do.....

Our church is going on a mission trip this summer to Mexico and Jim came home today and asked me if I would want to go? Our church (some members) went last year and I wanted to go then but was sooo afraid my fibro would be a problem. It gets very hot and it would be alot of hard work. Now don't get me wrong, I love hard work I just don't want to let anyone down. Well, I am praying on it right now and will see where I end up????? I do need to make sure I would have plenty of drinking water too...
I would love to go...the thought of doing good work and helping people would be so rewarding!!!!!

Having fibro has taken SOOOOO much from me but to be able to go to mexico and help people that have sooo much less than me and ARE HAPPY, that would be something I would never forget!!!!!
So I am going to pray and if I am meant to go, then I will go....

Well, I am going to crawl downstairs and take me a big gulp of orange juice which I my stomach will not like but is going to taste so good. Then I am going to kiss my hubby good night, he is watching the football game. Take my nyquil and then lala land is mine. (my ears are even starting to hurt..) The part that I am really dreading is tomorrow morning.....my body is going to really really feel like CRAP!!!!!!!!!!!!!!!!!!!!!

Doing time on the inside

2011-01-21T11:11:00.002-05:00

I wrote this for my loving bride, for after many conversations I felt I needed to try to put her words into a letter for all to read, this is full of personal pain and love, I am sure I didn’t capture everything correctly, but I tried to explain what I hear her saying to me. There are things I left out as they run to deep to even put on paper for people to see. I have no clue what it is like to have this disease but I do know what its like to Love a women and to watch day in and day out her suffering with the invisible disease…

Doing time on the inside
Locked in this prison, doing time
No hope of escape from the fleshly bonds
Invisible for all to see, but look in my eyes and you will see
I am doing time locked in my flesh, being tormented with every breath
I look at pictures of who I used to be before this prison took over me
Look in my eyes and you will see, the pain and hurt does not cease
No hope of pardons, no hope for freedom I am locked in my prison of earthly flesh
Look in my eyes and there you will see the glimmer of who I used to be
I am doing time with those I love; the sentence has affected all those I love
I am scared for my daughter, with this sentence I carry
I look in her eyes and see all of the her dreams, I pray the invisible is what she never sees
Look in my eyes as I am doing time, I see your laughter and I want to cry
I see your hurt and I cannot not cry, I numb from emotions from these prison walls
Its not that I don’t have them anymore, they have just been numbed by the invisible
Look at my eyes and you will see a purple little butterfly keeping hold of me
There was no trial for the sentence I carry; I woke up one morning to find these walls
Life has been changed all those who walk this earth with this invisible disease
Life has been changed for all those who love the one who is doing time
LOOK in my eyes if you do care and there you will find who I really am
Look around not in despair as this sentence I carry shows me who cares
I feel all alone in the prison I am in, but I hope and I pray that the sentence I carry
Will keep the ones I love from ever having to suffer for the sentence is forever on this place that we live
Look in my eyes and then no words will need to be said
Look in my eyes and you will see I am loved by many who cannot conceive
What it is like to live in this prison, but love me the same as before this disease
This sentence has taken so many things from me, but it can’t take my spirit and those who love me

Frustrated at my patient..:)

2011-01-18T18:48:00.003-05:00

First things first.....I love you dad!!! I so enjoy my daily phone call to you and I am so happy that you and Alexx had dinner together!

Ok, now to what I want to write about and that is being frustrated at my husband! Yes, I said frustarted at Jim. The reason I am frustrated is because he is sick and I am trying to help him to get better and he is doing everything to not get better! I am exagerating some so let me explain....

Jim does a really great job of making sure that I have all of my meds. Even when I first got sick and we were going thru all of our financial "rearranging" he made sure that I had my meds because he knew thats what I needed. Those of us with fibro/cfs and the many things that go along with it know that can cost a pretty penny.

If I am having a bad day, Jim will make sure that I lay down for awhile. (Most days, there are some days that I just don't want to stop)

Jim is really good about rubbing my feet or legs when I just can't stand the pain any longer.

Jim has spent many restless nights due to my tossing and turning and has never once complained.

A couple Sundays ago, Jim went to church before me and I sent him a test letting him know I was on my way and the reason I was late leaving is due to the fact that I had gotten overheated and my body was shaking, especially my hands. He told me he was on his way home, not to leave!!! I asked him not to come get me but he didn't listen and came home anyway...

Jim has put up with my terrible mood swings due to my many pain levels!! I think this is perhaps the toughest one to handle...:(
Actually, I think my lack of personality might be the toughest one to deal with!!!!
(jim knows what I am talking about) I want to be by myself more times than not.

Jim put up with my weight gain and never once made me feel ugly!! I know he is happy though that I lost the weight, I look more like me now, hahahahaha!!!!

So, now to why I am frustrated with my hubby.....I WANT TO TAKE CARE OF HIM AND HE IS MAKING IT VERY HARD FOR ME TO DO IT!!!!!! HE HAS A CHOICE TO GET BETTER AND WON'T LET ME HELP HIM TO GET BETTER!!!!!
HE HAS A VERY BAD COUGH AND SOUNDS VERY STUFFY. I do not like it when my husband is sick, thank goodness it doesn't happen that often. I want to make him all better.
Last night he was laying on the couch and it was about 10:00 and I told him I was going to run to the store and get him some cough medicine and some cough drops. Now mind you it was rainy and cold out side...I am telling you that for a reason. I got him to take a cough medicine that helped him sleep really good and he hardly coughed at all...:)
This morning as he was leaving for work, I told him or asked him to take some of the cough medicine that I had got for him that is NON DROWSY. Did he, NO!!

My husband also has medicine that he has to take everyday...I have to remind him of that also!

Can anyone understand why I am frustrated?? Like I said, He can get better and won't let me help him!!!! I want to take care of him, like he takes care of me!!!!!

I love you Jim....now take your cough medicine....haha

ugh

2011-01-14T15:54:00.002-05:00

just wanted to write a small ugh post....it's pretty sad when i have to go to my husbands office and i need to take a shower but i just don't have the energy to do it!!! i just feel ugh....i really wish i could explain it....i want to scream right now!!!! you know when you have the flu (it's that STUPID flu reference again)and you are just laying on the couch and don't want to move....that's me.
i did have a shower yesterday...just needed to mention that. i MADE myself go to the Y and ride the bike today for 30 minutes. i swear a couple times i wanted to scream, throw up, throw something, stop but i didn't!
i feel like i am just going thru the motions....
a friend of mine just wrote (i'm paraphrasing)that when she is in pain she isolates herself....i so understand!!!!
i could just lay here and not talk to anyone for hours.....my left hip is killing me....this is so unfair to my husband! He deserves a wife that is perky and full of life. I know I am feeling this way because this past week was very emotional and I am fighting a flare....
I hate feeling this way.........

today.....

2011-01-14T10:19:00.002-05:00

I have my monthly doctors appointment (my pain doctor) next week and I am excited and nervous at the same time. I have been taking the same pain med for the past 2 years (oxy) I am a little nervous about going because we are going to be taking me off of the oxy....I know, I know, please don't start with all the O no the withdrawals are going to be terrible!! And before you start wanting to judge me the only reason I am coming off of the oxy is because of my IBS....constipation!! Yes, I just said it for the world to see...but I have said it before...:)
I didn't take the oxy to get high!!! I never felt buzzed!! IT HELPED WITH MY PAIN....it still wasn't 100% but it helped. I have also been taking something else that my pain doctor prescribed for me.
Anyway back to coming off of the oxy, I am nervous because I do know there will be some withdrawals to go thru...my doctor and I decided it would not be a good idea to do this during the holidays so January it is..:) I am not sure what we are going to try but I trust him. I am sure I will be doing lots of posting...

I am going to ask for a shot in my left hip...it has been giving me a fit more and more every day, especially in the morning. I defiantly can't keep it in the same position for very long...

My stomach woke me up again this morning about 5ish....the pain is so intense it hurts when I take a deep breath or if I try to move to my side...I have even layed in bed a cried because I just want to wake up and NOT hurt.....I mean come on, I have the fibro pain but my stomach, come on now!!!!!!!!!!!

This past week I have been very lucky as far as going into a full flare. With sitting at the hosp and keeping very odd hours, not getting alot of sleep, just plain ol stress. Yesterday was probably my worse day, my pain level was about a 6 1/2and my energy level was way low.
Jim has been very patient with me thru all this...I know it is not easy for him...I wish I could really explain how I feel to him. Yesterday he was really tired and said he wanted to go back to bed and sleep. I almost said to him, welcome to my everyday world..haha
Right now I feel kind of disconnected from my body??? It's kind of hard to explain...I feel numb. It's not a bad thing, I mean I am not upset or anything?? I can't explain it....

One more note, they are talking about the golden globe awards show and I think I should win one!!! I should win one for BEST ACTRESS!! I can go out and put on a show and NO ONE will no I am in pain....unless they really know me or care enough to pay attention....look in my eyes, really look in my eyes! Look at my smile, really look at my smile!
It amazes me when people say, you look great.....they are really NOT looking at me!!!

Bound to happen

2011-01-12T09:42:00.002-05:00

Well it was bound to happen and I am so thankful that my body held on as long as it did....I am talking about a flare. Right now it is not full blown but it is there on the edge....so I am in bed just laying here. My body won't let me do much of anything else
I I am hoping that if I lay here for a couple hours and not fight it my body will be happy with me and then I can get up around 11:00, take a shower and go with Jim at lunch to see Sue in the hospital.
I am so happy, words cannot express how happy I am! I didn't doubt for 1 second that Sue would come through her heart surgery with flying colors!! Not 1 second, I knew that GOD was in total control, I had / have a complete peace about the whole thing!!! I truly believe that Sue is going to feel 1000% better than she did before!!
It has been a REAL eye opener for the whole family and some good changes are going to be made...some LIFE CHANGES!! Not like new years resolutions, you start them with good intentions then a couple weeks you quit. It is not all changes, some things are just going to be brought back into our lives that we kinda got out of the habit of doing. (having fibro has a nasty way of doing that.....)

1. I used to not cook with salt at all, I would use other spices. Since Jim LOVES salt I started using salt....WELL BACK TO WAY LESS SALT OR NO SALT WHEN COOKING :)
I am not saying Jim is going to go salt less, I am not crazy but hopefully cut way back!!!

2. Not buying soda for the house anymore! I had stopped buying them and then for some reason I bought them...:( I will keep some 7-up or sierra mist for amaretto but that is about all. Sue has not had a soda since the first of September last year..:) I try to drink nothing but water. I carry water with me at ALL times but if soda is in the house I will take a few sips if I am eating certain foods. BAM!!!!! My stomach instantly will pay the price...so why do I do it?? Just like I CANNOT drink orange juice...:( for about a month every morning around 5ish my stomach would wake me up in pain...the only thing I can think of is...I was drinking OJ!!! AND I SAID BEFORE I WOULD NEVER DRINK OR EAT ANYTHING TO DO WITH ORANGES BECAUSE I WENT THRU THIS BEFORE!!!! I don't know if this is the cause but you don't have to hit me upside the head with a baseball bat for me to get the message!!! So, NO OJ (i'm sorry i asked you to buy the oj the other day jim, i'll take it to jjj..:) hahaha) So, if my stomach gets this way again I will know it's not orange juice.. A month...I can't believe I kept drinking it, I mean it was only a small glass in the morning...

3. WALKING....Jim and I used to walk in the evenings and I loved it!! I know he did it more for me but it is good for both of us. We don't have to have a dog to go walking....It is AWESOME for stress and BOY do we have that in our life!!! With my fibro it is not as easy to just get up and go so we have to grab the moment when we can but we are going to grab the moment!! IT IS WONDERFUL FOR STRESS.....NOT TO MENTION MY BUTT AND THIGHS...:)

4. Fibro sucks and it robs you of your health but what people don't realize is that it also robs you of your health in other ways....what I mean is, you don't have the energy and are in pain, you don't want to do things, you gain weight and you have a tendency to lay around so your body gets where all you want to do is lay around...then your spouse lays around with you because they stop doing things because after MANY years of trying to get you to do things they just give up and join you on the couch...then you BOTH become couch potatoes and gain weight and become even unhealthier....does all that make sense?????? WELL THAT TRAIN STOPS NOW!!!! I had been going to the Y and doing very well up until the first of November and just because it's winter I am not going to let my 30 pound weight loss be in vain!!!

I know that everyone has different opinions when it comes to fibro. What works for one person might not work for the next person and that is sooo frustrating! One thing I have found that does help me is to go to the Y...even if it is just to ride the bike for 30 minutes. Any form of exercise that I can do makes me feel so much better. I am a short person, 5'2 (barely) and last year this time I weighed more than I did when I was 9 months pregnant with my daughter 19 years ago!!! I am going to find my fat picture that was taken last year that was my AH HA moment that also thru me into a kinda depression and when I do, I will add to this post.
Me having fibro has completely devastated me and this year I am "choosing" (thanks Pam)to do what I can to make me feel better. I know that my fibro will never go away so I have to do what I can....when I can!
I cannot wait for Jim to go with me or do things with me...I would LOVE to do things together! That makes me happy, I want to be the couple that rides bikes together, goes on walks together, gets healthy together....

What I mean by all this babble is....THIS YEAR I KNOW MY FIBRO ISN'T GOING ANYWHERE BUT I AM GOING TO DO WHAT I CAN TO MAKE MYSELF FEEL BETTER!!

Life changes........

2011-01-06T22:22:00.006-05:00

With Jims mom (Sue) being in the hospital waiting to have her surgery on Monday, Jim and I have had time to take a loonnnngggg look at our life style and where we NEED to make changes. No one is invincible!!!
I need to warn you about this post, it might be long, it might go all over the place, it might seem choppy, and at times it might even seem like I am on my soap box.
But then again this is MY blog and I can say what I want and this is what I AM thinking and feeling.....
I am madly in love with my husband and want to be with him for many many years to come.......if getting my husband to cut back on his salt/way back, change some eating habits and getting us back into a workout routine is going to help do that then that is what we will do!

I am going to back up here a bit......this past Sunday 1/2/2011 Jim and I got a call that Sue was at an urgent care and we needed to come get her and take her to the hospital right away she wouldn't go by ambulance and it was a pretty serious matter. We of course stopped what we were doing right away and left. Long story short, cut to today 1/8/2011 Sue is going to be having open heart surgery in the morning to fix her beautiful heart!!!! Last Sunday they had to put in 3 emergency stints and they want those out. (When they put in stints, they don't like to put in more than 1)
OK SO NOW BACK TO SUE BEING IN THE HOSPITAL AND JIM AND I REALLY LOOKING AT OUR HEALTH

*************************************************************************************
OK so today is 1/10/2011 and Sue is having her open heart surgery as we speak. I know that she is going to be 100% fine and cannot wait to be going to the Y with her in a couple months...:)
We got to the hospital about 5:30 this morning and as of 8:36 they had started the procedure.....
*************************************************************************************
We know that my health sucks due to the fibro but how is my heart? (my mom has problems) How is my cholesterol? My blood pressure is great!!!
I have lost about 30 pounds since last April/May and it was badly needed. I am a very short person and trust me being overweight and having fibro does not help!! On a side note, I have my monthly appointment with my pain doctor next week and I am going to be talking to him about my hips. My left hip has gotten so bad that most mornings it is at least a 7 out of 10 on the pain scale. It doesn't hurt when I walk or anything...
How is Jim's heart? I know his cholesterol is a little high. He is doing FANTASTIC on quiting his skoal!!! I am sooooo proud of him!! I know how hard it is for him to quit. I found out the other day that he has been doing some skoal and to be honest my heart actually ached when I found out! I would be lying if I said I was not disappointed! Jim has tried to quit several times and I had/have such high hopes that he can do it, so when I found out that he had been doing skoal again I thought here we go again..... When I met Jim he was doing skoal but thru the years he has started doing it more and more. Also I love to kiss him and I don't want anything to happen to him! I worry about the side effects....
Jims blood pressure is high and he is on blood pressure medicine. He is getting much better about taking his pills, well it is my nagging that helps...:)

Jim and I used to exercise together all the time and that is possibly the one thing I miss the most!!! When Jim and I decided to run/walk a half marathon years ago it seems, it was the training that I loved the most! We spent time together talking almost every evening...it was wonderful. On the weekends we would get up and go early but the point is we were doing it together and we were talking.....something we don't seem to do alot of some days! As for the half marathon in case anyone is wondering, we did it!!!! I can't remember what place we finished but we finished it!! Jim had a battle wound on his foot (blister) it was pretty bad and most people would have quit but not but my baby...he suffered thru for me! Trust me it was a really nasty blister too...:( I was sooo proud of him....:)
Training for that half marathon was one of my favorite times....

My fibromyalgia has not only ruined my health but has also effected Jims health.....
By me becoming less active so has Jim...This past year was a very very stressful year for us with alot of financial stuff and personal stuff! That alone caused us both to become couch potato's....
Our yard went down hill really fast! I missed doing our yard work every weekend..I love getting out there early on Saturday morning and working all day and having a beer when we were done. Talk about a great workout but I felt sooooo good and again Jim and I would talk and I "think" he enjoyed the time together as well. I tried doing what I could do myself but I was fighting an uphill battle and I lost!!
The garden at the top of the hill didn't stand a chance...I have told Jim that this spring if he wants anything planted, HE IS GOING TO HAVE TO HELP ME keep it watered and weeded. I would like to plant alot more than we have in the past, make it a full garden. I need his help though....I CANNOT do it by myself and I don't want to pay someone to do what we are capable of doing!!!!
I miss being active together...

STRESS CAN REALLY MESS WITH YOU!!!!

I hate that me having fibro has had such a trickle down effect on Jims health and in even more ways on mine.....stress has caused us to become more seditary....THIS IS GOING TO CHANGE AND IS CHANGING!!!
I AM TIRED OF GOING TO THE Y ALONE!!
Jim says that he wants to loose 15 or so pounds, he can DO IT!!!! I BELIEVE he can do anything he wants to...he just REALLY has to want to!! I will support him and encourage him, I just don't want him getting mad at me.

I am writing all this because with everything we have gone thru this past week with Jim's mom, it is a reminder that we need to get healthy! We cannot take our bodies for granted!! We make jokes and laugh about things, WE CANNOT TAKE ANYTHING FOR GRANTED...WE CANNOT START TOMORROW.....WE CANNOT HAVE "JUST" ONE MORE.....

I LOVE YOU JIM AND I WANT OUR LIVES TOGETHER TO BE LONG AND HEALTHY.....it is up to us to make the right choices and stick to them...I am not saying we have to go all health guru and stuff just make better choices and stick to them....

My fibro (yes, it is mine ) has already done enough damage to our lives, it is time we take back what we can!!!

New Year starting off with a bang....

2011-01-03T09:46:00.003-05:00

Well today is January 3rd and it is my moms birthday! The good lord blest me with an awesome mom! The saying that God works in mysterious ways is sooo true! My mom and I have had what I would call the typical mother/daughter love/hate relationship growing up. What I mean is that my teenage years I was your typical wild child and my mom and I didn't see eye to eye and now I consider her one of my dearest friends!!! I live about 4 hours away and call her at least once a day, sometimes even 2 or 3 times! I LOVE YOU MOM AND HAPPY BIRTHDAY.....
Now on another note...my mother in law is in the hospital.Yesterday, Jim and I were in the grocery store when we got a call from the nurse at urgent care telling us that Sue was there and needed to be taken to the emergency room and that she didn't want to go by ambulance and could not drive herself. Mike, my father in law was working. Of course we went straight there. Well, she has had a couple of heart attacks, some problems with her breathing due to some fluid on her lungs and they are checking everything else. Yesterday she had 3 stints put in and we are waiting word on by-pass surgery???? Please, please keep her in your prayer as she is a very very special lady to me!
Right now I don't have time for my body to flair or act up....so I am just going to put my BIG GIRL PANTIES on and take care of Jim and his family and then I will deal with me......

Who am I?

2010-12-30T19:52:00.003-05:00

I need to say that this post started off in one direction and then I kinda changed my mind and went another way....read and you will see what I mean..haha

Am I the only person with fibro/cfs and ALL the other crap that goes with it to loose their identity??? For the past couple of months I have really been fighting a silent battle within myself and I seem to be loosing!!!!
On a daily basis I seem to be loosing a little bit of myself........
People don't see this, people don't know this. Unless you have fibro and live daily with the pain and the fatigue and the never ending fight just to get thru the day. Everyday it takes everything I have just to get thru it, some days I can do more than others. I wake up and lay in bed wondering what I will accomplish...
On a good day I drink my energy drink and I make it thru the afternoon...I will be in pain but at least I get a small boost to do some things for a couple hours. But then again that doesn't always work.

My friend Rosemary has a blog and in her most recent post she mentions living in isolation. I soooo understand that and how it could be easy to do! There are many days, more than I care to count where I would rather just be by myself! It is easier to deal with the pain that way! After so many years of talking about about it, complaining about it and just dealing with the pain it becomes easier to deal with it by myself. People get tired of hearing about it!!!!! I get tired of talking about it! I get tired of dealing with it!!! So many days when I am in pain I will just lay on the bed and mindlessly look at my computer. ( what would I do without my laptop? I think I would go insane) When I am hurting not having to talk or think helps a little. I know that probably doesn't make sense to most people but to those of us that suffer with fibro/cfs it makes perfect sense!!

My friend Rosemary also mentioned your body betraying you and how do you deal with that? I am still trying to figure that one out.....I have mentioned so many times my husband Jim and how wonderful he is, he is the BEST! This is one of the toughest parts about fibro, actually EVERYTHING sucks about fibro!! Jim and I are really trying to work thru the body betraying you part.....I want to be like my old self and Jim wants me to be like my old self too!!! I can't begin to guess how many marriages have ended because the spouse has fibro?? It changes you, you become someone you don't want to be!!! I find myself snapping at Jim for the slightest thing. I find myself being selfish with my feeling "good" time. What I mean by that is....I am of course a type A personality (that didn't change just because I have fibro)and when I am feeling good I try to do what I can around the house or in the yard. Hence, Jim loses out on quality time with me....I wish I was rich and could afford a maid and yard person..haha
When Jim and I got married I could do it all....I know, I know you don't have to tell me...pick and choose what I want to do! I can clean later! The yard will be there later!
I am not as bad as I make it out to be,,,I do let things go....I spend a good bit of my day laying around looking at what all I wish I could do!
MY PERSONALITY JUST SEEMS TO HAVE BECOME BLAH!!! I MEAN, I AM TYPING THIS AND I JUST FEEL BLAH....IS IT POSSIBLE TO NOT FEEL AT ALL??? TO NOT HAVE ANY EMOTIONS AT ALL? I FEEL LIKE AN ALIEN HAS COME DOWN N THE MIDDLE OF THE NIGHT, SUCKED OUT THE PART OF MY BRAIN THAT ALLOWS ME TO HAVE ANY EMOTIONS.

Depression, that is another area that I fight with on a daily basis! It is something else that people don't see...I try not to let them know, kind of like my dirty little secret. I will NOT take any little pill for this. Not that there is anything wrong with it....if it works for some people then that is great. Many millions of years ago I tried several different kinds of pills for depression and the side effects were soooo not worth it for me. ( i know they have changed alot since then)just not my cup of tea!
I really do struggle silently every day with so much! It wears me down in sooo many ways!!! I was diagnosed just over 4 years ago and cannot imagine what my life will be like 4 years from now. I hope and pray every day that they find a cure!!
When I met and fell in love with Jim, (which by the way happened at about the exact same time)I never imagined our lives would be like this. GOD DID THOUGH!! I know that God has his master plan and am putting all my faith in him...he knows what he is doing! I keep telling myself that!!!!!!!!!

I made it!!!!

2010-12-29T18:48:00.005-05:00

Well I made it thru Christmas and having a house full of family...I don't have a small house but I do have a very small kitchen and a small living room. So having 8 adults all at one time.....whew!!!! I would not have wanted it any other way though...:)
My dad knew that my oldest brother and his wife were coming but my mom didn't so the surprise was wonderful. We went to Christmas Eve service and it didn't look like Steve and Claire were going to be able to make it here in time but they did!! (they drove in from Tenn) I was sooo happy to have most of my family at church with me. Next year, my daughter will be up for Christmas and that will make it perfect. This year she spent Christmas day with her boyfriend. I was kinda bummed but I also remember what is like to be young and in love....(this is my daughter's first long term relationship)
Another really great part is that my stepson, Kyle came over and spent a good bit of time with us.....he is really growing into such a young man! After church service my mother in law Sue, my father in law Mike, Jim's sister Kris, my brother in law Kent, and my nephew James came over as well. OK, now talk about a house full of people but I LOVED IT!!!
I know you are wondering, did I rest any? Did I take it easy? Did I relax? Well I kinda sorta maybe did!!! Let's just say, I think I was the perfect little hostess. There was plenty of food, hot fresh coffee, and I kept my house picked up.
To top it all off.....WE HAD A WHITE CHRISTMAS!!!!! IT SNOWED CHRISTMAS EVE AND CHRISTMAS DAY....we got about 9 inches...
My sister in law has fibromyalgia so she of course kept worrying about me and telling me to sit down and relax...hahaha, that wasn't going to happen! I was going to go as long as my body would let me. I knew that I would pay for it later but I was going to enjoy it while I could and I did!!!
I was very lucky while everyone was here the only really bad pain I had was my legs and feet. My right hip is still giving me a fit, going to talk to my doctor about it on my next visit. My stomach feels like I swallowed a bag of rocks. I look as though I gained 10 and my IBS is in full swing. Of course all the sugar cookies I ate might have something to do with that...180 calories per cookie!! Can you believe that?? It has icing and sprinkles on it..major yummy!! I have eaten 4 boxes..180 x 48 = 8640 calories!!!!!!! Can we say O MY GOODNESS!!!!!!!!!!!!!!
Sugar is so the 1 thing my body does not need, the 1 thing that makes my body go hay wire!
Can we say...back to the gym for me!!! My goal was to be in the 120's by the end of 2010 and unless I can lose 2.5 pounds in 2 days that's not going to happen! I mean I could lose 2.5 pounds quickly but doing it the wrong way just means it will come right back and when I lose it.....I never want to see it again..hahaha
During my last doctors visit we discussed changing my pain meds after the holidays. To be honest I am somewhat nervous about changing. I mean I know that one of the pain meds I take does not help me with my IBS so getting off of that one will be nice, if it helps. Just going thru some of the withdrawals will not be fun..:(

Right now I have the house all to myself so I am going to lay here and catch a few minutes of shut eye..

O'yea and the pictures are:
1. My house....the pictures was taken last year but it pretty much looks like this now with all the snow..EXCEPT MY BEAUTIFUL TREE IN THE FRONT YARD FELL OVER THIS WEEKEND....(i am hoping to save it)
2. my dad and his friend Dutch...well he is my friend too! my dad is on the right.
3. my mom and Dutch's wife Marga...my mom is on the left
4. me and my brother steve and his wife claire.....i am still in my pj's :)

Getting Excited

2010-12-20T19:21:00.004-05:00

I swear the years are going by faster every year!!! Just yesterday I was laying out at the beach and spending time with my friends from Holland. Just yesterday I was eating dinner with my daughter celebrating her 19th birthday. Now it is 4 days before Christmas and I swear time really does fly!!!!!!!
I always say I am going to be done with my shopping a month before Christmas but have yet to accomplish that goal but you know what? I am not going to stress over it!!!! STRESS IS THE ONE THING I AM TRYING HARD NOT TO DO!!!
So I ask myself why am I doing more this year for the holidays than I have done in many years? I want to be around family that is why!!! Last year and this past year have been a very tense year for me and my family. My mom was very sick and closer to going to see God then I ever wanted her to be. She went into the hospital to have hip replacement surgery and ended up being in there for almost 2 months, I think? I can't remember how long it was now I just now it seemed to feel like an eternity!!!
My mother had a very hard road to battle but she did and she won!!!! My father, well let me just say that I love and adore my father and I don't ever want to have to go thru that again with him.
My husband was my rock and I could not have gotten thru it without it!!
My brother Steve came home for a day and night and to watch his face when he saw his mother in the hospital bed about broke my heart. I love my brother......
Then a couple weeks later Steve came back with his wife Claire and that visit just made my heart swell with JOY!!!! First having all of the family together for the first time in a million years, that in it's self speaks volumes!!
Then there was a moment in the day where Claire and I met this older lady coming into the hospital and we have a brief but life touching conversation. This sweet lady was a widow and told us about how she used to be a nurse and some other short stories. Well, Claire used to be a nurse and to hear the 2 of them talking just made my heart smile!!!! Then we parted ways and went to visit my mom. While in the room, Claire started to wash my moms feet and rub them with lotion. Anyone that knows my mom knows that her feet are very sensitive that she has alot of circulation problems so touching my moms feet is a huge thing. I just sat that and watched Claire with total AWE and LOVE!!! I don't think I have ever told her this. (so Claire, you know know!!!) I actually blogged about it right after it happened because it touched me so much. We were all sitting around talking and here Claire is, being the "nurse" caring and loving on my mom!!!! That meant more to me that she will ever really know!!!
So, since I have to end this post now (really have to get in the shower) I am having my family for Christmas and not stressing (well not to much) because I love my family and want to be around them!!! last Christmas was to me a TOTAL disaster and this one will be one full of GREAT and HAPPY memories.

What friends are for....

2010-12-13T10:09:00.003-05:00

Well,I said that Saturday was a great day, my whole weekend was even better!!! Sunday was of course a little sad because after church Karen and William left to go home but I have some wonderful memories to cherish!! Usually after a busy weekend, (which it really wasn't a busy weekend now that I think about it)it was a very calm, fun, relaxing weekend. We went to dinner Friday night downtown then came home and just talked in our pj's. (me and Karen were in our pj's) Saturday morning, Karen and I went to a cookie exchange / craft thingy that our church ladies were doing. I was sooooooo afraid I would not be able to be able to go because we all know how I don't do morning well at all!! Guess what, I did great!!! God was answering my prayers this weekend :)
I had taken Karen to Fresh Market the night before because I had to get cookies (yes, I know I am supposed to bake my cookies for the exchange) Anyway, we stopped by there again on our way home to get some more goodies for supper and some goodies to munch on and who did we run into but our handsome husbands..:) They decided to tag along with us so we went to lunch.
After lunch we went to get our UGLY, SHORT CHRISTMAS TREE...YES, you read right!!!! For the past couple years Jim and I have made it a point to pick out the ugly tree that no one wants, It is so funny to watch when we go because as soon as we ask them for the ugliest tree they ALWAYS know where it is. They always have it put to the side, poor tree!!!! I THINK OUR TREE IS BEAUTIFUL!!!!
After we got home I had to go lay down for about an hour. I was starting to feel run down and didn't want to make it worse. I was going to make deer chili when I woke up......well my wonderful husband made it while I was sleeping!!!! It tasted delicious too, I have eaten a couple of bowls so far...:)
We decorated the tree and I actually had a glass of pomegranate wine, it was really good too!!!

Not only did Jim cook the chili that day but he also surprised me by fixing the Christmas lights on the front porch, (I love the way they look!!!!) put the mulch down for me. I still need about 20 more bags but it's a start... He even fixed the spot lights on his jeep. Of course by fixing them it takes that off his Christmas list..haha Now I am back to the drawing board for some other things to get him.

I am kinda tired today. Having a hard time getting started but over all it's not that bad considering.....but then again I would do it all over again because I loved seeing my friend Karen.

Great day!

2010-12-12T00:07:00.003-05:00

Today has been a fantastic day! A day were everything has gone right and just been a really really good day.....One of my bestest friends in the whole world came up from Charleston SC to see me (with her hubby, William). Well, actually they came up yesterday if I am too be 100% accurate..:)
Anyway, all week long I have been worried about having a flare or just being in a lot of pain when they got here. I had been trying to get the room ready that they are staying in and trust me that took some work but I am soooo pleased with the way it looks. Normally I could have had the room done in a day and a half this time it took me 4 days because I refused to let it tire me out.
It has just been a great day!!!!

Just a little humor to lighten the day

2010-12-06T10:38:00.003-05:00

A note from Gizzy

Hello everyone I am Lynn’s cat, she named me Gizzy about 7 years ago when she found me in the rain sitting on her porch and she and Alexx took me in. She is married to a guy name Jim who is a Dog lover but I am breaking him down, he now allows me to sleep on him when he is laying on the coach but that is our secret.
I am sure by now you are wondering why I am writing a post. The reason is I have some major complaints and I want someone to fix it, and fix her. Lynn may rule the roost but I am the queen of the castle and some things have been bothering me the last few days. Lynn has been laying around not feeling good. I get up in the morning and go check my bowl and there is no tuna there so I pounce up the stairs looking to see where she is and what do I find, she is hiding under the blankets. I will fix this I jump up on the bed give a big head butt and she will get moving. To my surprise she just looks at me, what no hello, no I know I know I am coming she just lays there looking at me, I know she knows I need my tuna. I will rub against her and this will get her going, she slowly reaches for me and mumbles something before she closes her eyes again and just lays there rubbing me with a few fingers. Then she stops and I see tears and she is telling me she hurts but she will beat this, she is getting up and is going to come feed me. Wait Wait Wait what is this she hasn’t moved she is just staring into space. I know I shall pounce on her chest, nope that didn’t work either so I will lay on it until she says uncle and gets up. Well I laid there for 45 minutes and she didn’t move so I will go see if food has magically appeared and guess what it hasn’t.
Well it has been 2 days and going on 3 days of this stuff she calls Fibro, what does a cat have to do to get some relief here? What do people really think when they look at Lynn when she is like this? I mean well never mind when she is like this only me and Jim get to see her. Ok it has been 3 days and Jim fed me when he got home today but he doesn’t feed me like she does she makes funny little noises and talks to me like I am a little kid, Well me and Lynn had to have a heart to heart today, I played the physcologist and just laid there listening to her, I gave her the soft purr of encouragement so she would continue telling me how her feet have been staying numb and she is having issues with feelings in her arms. She doesn’t seem to be how she normally is so I think I shall have a conversation with Jim about her and see if he can help…. OHHHH well that didn’t go well I purred and purred, and even raised my voice and meowed at him and he just looked at me like I was crazy, I am not crazy I am the queen of this castle and I will be heard, so I meander myself back up the stairs,,ahh Lynn has her computer on, so she is alive I will go talk to her about this I bounce up on the bed and she is asleep with her hand on the keyboard, she has typed this word I have no clue what it is can someone help me and explain what this word is “ ssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssss” ? She always seems to type words like that when she is in pain and is sleeping while on her computer but sometimes it is different letter then that. Well I hear Jim down stairs he is rummaging through the cabinets; he must be looking for food, so I will go see if I can get some treats from him. So I will leave you with some parting thoughts from a cats perspective, Fibro is real come stay for awhile in our house and you may be lucky enough to see the effects it has not only on Lynn, but on Jim and family, and me. Why does it seem we are no closer to a cure? I want to tank all of you for letting me share my life on here.

After thought:
No animals where harmed or malnourished in the writing of this letter, I took liberties with the no food because I don’t like Jim feeding me; it isn’t as much fun as when Lynn feeds me. And I do get fed 2 times a day, and I would probably be ok if I did go a few days with out a meal as my doctor tells me I am a little on the heavy side.

the face of fibromyalgia

2010-11-29T20:19:00.006-05:00

I cannot believe I am posting these pictures of me but this is what I look like when I have been hurting all day....not very nice is it??? Yes, I am smiling in one of the pictures because I don't like looking so mean/mad!
Not the picture of me with my husband of course, just wanted you to see the difference....

That time of year - when you find out who your true friends are!

2010-11-29T16:32:00.008-05:00

Today and last night have been the worst pain day for me in probably over a year. I mean I have had some major pain days but it would peak and then would go down to a somewhat manageable level for the most part.I wake up and it takes me a couple hours to be able to get going and some days I go faster than others but I am able to go. I usually have a mid afternoon slowdown but for the most part my pain level will peak and then level....again some days it will peak longer than others but not for over 24hours! That is what I am dealing with now!!
My pain started when we left the beach yesterday to head home....by the way, really enjoyed spending time with my parents and daughter. My nephew Eddie is all boy!!! I love it when he comes into my room in the morning and looks at me with a sweet smile and says cartoons. Of course I put them on and then he snuggles in bed with me.....little does he know that I love it because I get to lay there and snuggle with him.....nothing like that first thing in the morning snuggle!!!

Anyway I ended up going to bed about 10ish and have not gotten off the bed since then. Well I have gotten up 2 times. 1 time for something small to eat and 1 time to get some water. I just realized though that I have not peed all day and it is now 5;14 in the evening....my IC is loving me right about now!!! That could explain why my bladder feels like it is on fire and my lower back is ready to break...this past weekend, I actually drank cherri pepsi. I NEVER drink soda!!!! What the frig is going on with that????
Last night my sleep was terrible! I kept thrashing about,,,I kept waiting for Jim to roll over and tell me to STOP IT....I felt so bad but I hurt so bad I just wanted to scream!!!! When I finally fell asleep I think I got about 2 hours of sleep and have been awake ever since.
Jim just said, "well at least our bed is comfortable" and I told him not if you are laying in it ALL day! I have zero energy....my legs just don't want to work and feel like they weigh a ton when I walk....forget the stairs.
I just don't know if I can handle another winter like last year! I am a happy person and last winter almost put me into a deep depression....

One of the best parts of me blogging has been the friends that I have made and that some of my local friends have been able to read about what I really go thru.

I think that having the pain is beyond awful! The tiredness that you feel is overwhelming but the loneliness that you feel is by far the worst of them all!!!!! People/friends don't want to be bothered by your pain...they just go on with their lives and when you can get back into it well ok then. It also amazes me how different my friends can be....for instance I have 1 very dear friend who I think the absolute world of and she suffers with alot of pain problems and we talk often, well this morning I called to wish her a happy birthday and she was more concerned about me and what she could do for me. I quickly changed the subject because it is her birthday and I want her to celebrate it and be happy but the fact that she really truly cares and shows it with her love. Then I have another very dear friend who I was speaking to and I mentioned that I was still in bed and it was past 4:00 and not once did she say I hope you feel better, whats wrong, anything I can do to help you.....I often wonder how people can be so different? Where is the compassion? Then I have the friend that acts like she cares only when other people are around!! This friend doesn't even begin to try and really understand what I go thru....So yes, I feel very isolated some days!
Don't get me wrong, if any of you have read my husbands post then you know I am truly blessed with a loving and supportive husband who I love with ALL my heart. But he works during the day and I cannot expect him to talk to me every 5 minutes.....
Lord, I pray that this goes away and is not something that stays all winter long...I REALLY DON'T THINK I CAN DO ANOTHER WINTER LIKE LAST YEAR...

Hey, I know what I will do....I WILL GET A TANNING BED LIKE MY SISTER IN-LAW and put it in our up stairs multi room :) at least I could get some warmth and sun that way...

The pictures that I posted are from Thanksgiving weekend,,,,and as soon as I find my camera I am going to take a picture of how I look now, yes, I said how I look now and post that picture too. Then you can see what fibromyalgia can really look like.

Letting go

2010-11-23T09:32:00.006-05:00

Last week started out to be pretty bad. I mean not just pain level wise but with just plain old stress. Hum, but then again my pain level is based alot on my stress level and of course the weather. Anyway, I was really unsure of how my thanksgiving was going to go and I can honestly say it was better than I thought.
Other than having a shadow that I really didn't want...all was good.
My mother is an awesome cook and I so love eating her food especially her stuffing....which I think I ate 6 cups of....:)and at least a whole fruit pie!!! Can we say YMCA!!!!

Well I feel it, do you? CHRISTMAS????? It's coming and I am ready for it this year :) Last year was a really, really bad year and I honestly didn't know how I would make it through but by the grace of God and with my loving husbands help, I DID!!!! So this year I really want to enjoy Christmas....I want to decorate the house and actually bake something! That part is scary I know...hahaha
Don't have alot of money for presents but can still do alot of kissing under the mistletoe...:) watch out baby! I want to play Christmas music while I am cleaning and in my car...I might even sing along. I know another scary thought...:)

Well we are back from my parents house and I can honestly say I am in a full flare!!! My legs/feet are off the charts and the rest of my body I can honestly say feels like I have the flu. I just want to lay here and do nothing and the only with that is....wait, there is no problem with that! I can just lay here and that's what I am going to do!!!

Feeling overwhelmed

2010-11-15T10:51:00.002-05:00

Yesterday afternoon was a pretty bad one for me...I had moments where I just wanted to scream, throw things and just get in my car and drive. Instead I just cried my eyes out while I raked leaves and talked to God.
I am feeling so overwhelmed and it is because of my yard!!! People will tell me not to worry about it, that just makes me want to yell at them!! I have ALWAYS loved to do yard work. Anyone that knows me and knows me well knows that yard work is one of my favorite things to do. It is great for my stress. I need to explain what I mean by yard work though....puttering around with my flowers, weeding, just your everyday upkeep and maybe some changes to landscape now and then. Well my yard has gone to crap and back and I just can't seem to get anywhere with it, I have always loved a nice yard. It is just one of those things that calms me...I can't explain it....maybe it comes from sitting on the front porch and watching Alexx play as a little girl, I don't know I just love a pretty yard. It is not for my neighbor sake. (though I am sure they would appreciate it)
I have tried so hard to get grass to grow in our yard, front and back. Many hours of pain and still no grass...we have dirt with lots of grass seed just laying there!!
My neighbors have walked by while I was on my hands and knees and made comments like, it's going to be beautiful when your done or wow, you are working away there aren't you?? The part that makes me cry while I am typing this is that I have put so many hours of pain into this and to have nothing to show for it!!!!
I don't like to use my precious good hours and have nothing to show for it!!!
I am fighting a losing battle here but I can't give up and I can't see an end in sight. Today I have to go outside and rake up leaves and clean off our patio before it rains and cover the wood pile.
Please don't say that I should let it go, that with fibro you have to pick and choose what you do. I understand all that.....I would just like to have a nice looking yard...I would just like to have some grass!!! The sad part is, we used to have grass in alot of the areas that are bare, I am not sure what has happened??? We have more weeds than grass, we have brown spots where we did have grass.
We have this area we call the hill...it has got some trees that have got to be cut down!!! Alot of dead branches that I will be getting rid of this week. I am not sure how I will be doing that but I will do it!!!!
Not to mention that my hosta has just about all died! I have a flower bed beside the deck that used to be full and lush and now is just about bare...everything died?????
I had beautiful, full, lush, hosta plants on the side of my house and they all have died!! I did have beautiful plants on the top of my hill and they are all now dead....:(
I just want to cry,,,hey I have done that and it didn't help!!!
And if that is not enough I have other things I want to get done.....but as long as the yard is hanging over me......I just feel so overwhelmed...:(

Just a Post

2010-11-11T10:06:00.003-05:00

Today is one of those days that I don't like myself. I don't like what this disease has done to my personality....dealing with the pain day in and day out. Holding it in and not showing the pain Everyone says to be positive, show your sunny side....don't talk negative. People get tired of hearing about the negative. You will have a better day if you have a positive outlook on life....
How can I be positive when I am always letting the one I love down? The pain makes me want to isolate myself somedays and trying to explain that to someone you love is very hard. Not being able to show affection some days because you hurt and have become so numb to everything is not fair to my husband. He doesn't understand and no matter how many times I try and explain it doesn't help him. All he feels is the hurt and nothing can get past that.....

There are times I wish I could just go live the rest of my life by myself then I wouldn't have to risk hurting anyone!! Having fibro is not something I chose to have! I am trying the best I can to live as "normal" a life as I can with it. It is the hardest thing I have ever had to do.....it tires me out mores than anyone will ever know. Just to smile sometimes when I really don't want to or when my stomach is in such pain that I want to just roll over an die but I can't so I just smile. Doing that day in and day out really tires you out!!! Physically and mentally.....
In doing all that I don't give the one person the one thing he needs and wants and....I just want to scream because of it!!! It is the one thing I want to give of myself and fibro robs me of everything that I am just trying to survive the day!!!!

This past week has been a hard week for me.....getting started has been taking me longer than I like and that has got to stop!!!! I would much rather be busy in the mornings and go to bed at a "normal" time. I have been falling asleep around 1:00 am lately. I do not like that!!!!!!
Last night when I fell asleep I felt as though I was on a bed acid trip for a few minutes. It really scared me for a bit....
Went to my new pain doctor yesterday ( 2nd visit) and I am starting to like him. He had more of a personality. Really took the time to listen to me...we talked about my right wrist, my back and getting some injections.....yea!! He gave me a prescription to try for IBS, I am kinda nervous about trying it since I googled it and the first thing that popped up was about a court case...
I really think I am going to like him.....
Off to the Y.....

Leaves ( from Jim )

2010-11-08T16:10:00.001-05:00

Hunting Season

Ok I know a few of you may be totally against hunting thing, but please bear with me (no pun intended).

I really enjoy this time of year for a few reasons, one is its hunting season and it’s also the most time I get to spend away from my normal life all year long. I get to sit in the woods and see nature at its best and worst. I was in the woods this morning doing what I normally do which is pray for a deer to come my way, well that lasted about 2 minutes until my mind went to my wife and all that she suffers though with this horrific disease. And as I watch the woods come to life this morning I saw something that I have never truly noticed, well maybe I had but not in this way. We live in the city and we see fall come and go and we see the leaves on the ground and see the chore that it is to keep them clean. But here is my question, have you ever heard a leaf fall, you know just a single leaf falling from 30ft up in the air to the ground? Do they make a noise? Most would say no it is just a leaf it is light and it floats to the ground softly landing. Well it doesn’t it is like fibromyalgia is in my wife’s body it is loud it hits things on the way down causing more and more noise a leaf falling will make so much noise you would think an animal was heading your way. Walk on leaves and you will hear them crackle during the day time but walk on them at night or the wee hours of the morning and it will sound like fireworks going off.

So back to my thoughts this morning, I wonder if normal people actually understand that the nerves in the fibro person are so intense and the pain is loud that its like having leaves falling and then being trampled on, constantly making noise for the brain to try to interpret and being trampled on each time a muscle is moved. Are the medications really doing anything to help other then acting like water on the fallen leaves, making them slippery? They are still there and when the water evaporates the leaves go back to crackling and the pain returns. Us normal people seem to be lucky as when the leaves fall we still have a clear path to walk on and the ability to not hear the leaves hitting the ground. I prayed for my wife today when I was in the woods and a gust of wind came up and it was raining leaves making so much noise an elephant could have snuck up on me, I prayed that maybe today the leaves would fall a little softer, and I prayed that for at least a day let no one trample on the ones that have fallen and that there would be a clear path to travel on for todays journey, and to all of Lynns fibro friends I say that prayer for you also………

The power of positive thinking!!!!

2010-11-08T10:20:00.008-05:00

Just thought I would post some pictures that make me smile....the first one is of my hubby doing yard work. This makes me smile because he really doesn't like yard work but does it because he LOVES ME SOOOOO MUCH!!!! :)

The 2nd picture is of my stepson the day we got married, fooling around with some bows he wanted to put on the car.

The 3rd pictur is of my daughter and Jim. This one makes me smile because Alexx REALLY LOVES her step dad!!

The 4th picture is of me and my friends enjoying some vino...one of them is what I call my bestest buddy

5th picture makes me smile because my daughter is happy and smiling!!

Last picture I am just happy that my husband supports me wanting to do a 5k. I am not able to run them like I used to but on an ok/good day I can walk it. On a really good day I can even jog for a min now and then. My husband is my biggest supporter and without him I couldn't do it!!!

looks can be decieving

2010-11-04T09:23:00.004-04:00

So much for going to bed early.......but today is another day and I am going to try again! By the way it was 1:20 when I finally went to bed.
I am laying here listening to my cat and his breathing is really worrying me. He sounds congested and is sneezing again. Before when he would get like this it would happen after he had been outside. He is such a loving cat, my baby! I am keeping a close eye on him..

Jim said something to me tonight that I just wanted to bring up again. Looks can be deceiving. what I mean by that is.....people see me going to the Y and say to Jim, saw your wife today at the Y and she was looking good. Or someone will see me out and say, you look good. What they don't see is what goes on before I get to the Y or what goes on before I leave the house. They don't see that I was laying in bed until 12 o'clock just trying to get the energy to get up to go to the Y. Laying in bed waiting for my pain meds to kick in and praying that today it would be enough for me to be able to leave the house. They don't see me hobble around the house, hunched over in pain trying to make it to the bathroom or down the stairs.
They don't see that it takes a great portion of my day just to be able to face the day.
If I have something planned for early in the day they don't get up with me extra early just to take my pain meds so that I can be able to get up and take a shower. I also pray that when I wake up early it is not going to be a flare day and that I can actually move. Even if I take my pain meds that doesn't mean I will have the energy to get ready....or that my arms will be strong enough for me to blow dry my hair. There are many a mornings Jim has seen me cry because I can't get ready!!! I never used to wear my hair in a ponytail, now that is how I wear it a good bit. There are days it even hurts to touch my head with my brush.
People don't see all the guts and glory that goes on behind the scenes......so the next time you see me and think I look good, take a moment and wonder what I went thru to get there.....

weather change

2010-11-03T10:27:00.002-04:00

Well I knew it was going to happen no matter how hard I wished for it to stay away. The cold weather! It is here.....and my body is feeling it! The past couple of days have been hard for me to get going and I have been starting my days later and later. I really don't like that. My body is all out of sink. I have been going to bed about
11:30 but not going to sleep until about 1:30 and I have got to stop!!
I know better......winter is the worst time for my fibro and the one time of the year I must take care of myself and force myself to be on a schedule. This is not to say that I can let myself go the rest of the year by no means. Anyone that has fibro must take extra care of themselves I am an example of that. What I mean is........over a year and a half ago I started to gain weight from taking lyrica, I stopped excercising, I stopped walking, I could not get out of bed, my energy level was very low. Actually I had all those symptoms for over 4 years (minus the lyrica) what I am saying is I let myself go and gained 25 pounds and on my short body that is not good!!!! So, with the fibro beating me down having the extra 25 pounds on me only made it worse!!
Last winter my IBS was at an all time bad and again add with that the 25 pounds and then picture how I felt....not good!! There were days I scared myself and Jim....:(
So what I am getting to with all this rambling is, I cannot let these long, cold winter days bring me down!! I have got to get into a better routine and make myself stick to it!
I know alot of people say tanning beds are bad but I am going to be going to one this winter. I will not be going all the time. Just once in awhile. The warmth does make me feel good and when I am feeling really bad or starting to feel bad, 20 minutes in a tanning bed can change my whole day. And my mood.....and my husband is happy when I am in a good mood.
So, with all that being said I am now going to get my butt up and force myself to go to the Y and do some form of movement for 30 minutes....;)

Rubber bands, paperclips, and staples

2010-10-28T12:00:00.001-04:00

Rubber bands, paperclips, and staples
I am in a weird place at this time, I am tired and exhausted and frustrated, and yes I am not the one that actually has the fibro. I have this inside joke with Lynn; we always say we should do a scientific experiment to see if ________ works. Well I think I am doing a life long scientific experiment to see if fibro can rub off on the spouse. I know it sounds corny (or however you spell it). As I have stated in previous posts I do a fair amount of research every week on news and research for the invisible disease and here is what I have decided, I think I am going to send someone a letter in Washington asking them if Fibromyalgia can have its own awareness month. Every time I turn on the TV, I see people talking and raising money for a cure for cancer (as they should it is a horrific disease in its own right) heck every time I fire up the computer the main page this month has some article on cancer, wouldn’t it be great to fire the comp up or turn the TV on and see true information on fibromyalgia? Wouldn’t it be great to have real articles on ways to make the person suffering with this disease better, wouldn’t it be great to have comedy central do a telethon for finding a cure. Instead we search and search for information and if you are lucky after you get past the voodoo doctors selling a cure, and you weed out the guy who just wants to profit from your pain and you are truly lucky you can find one little nugget of information that makes you go hmmm I wonder if this will work to make my wife feel better.

Rubber bandsOk lets be honest here if you’re a man you have done this, if you are a women you may not have but you should try it, take a rubber band and stretch it and then slowly rub your fingernail across it, not hard just apply a bit of pressure, as you do it you see the rubber band slowly start to shred in front of you until there is that remaining last little bit holding it together then snap its broken. I think this is what fibro does to our relationships, let me explain what I mean, it’s the pink elephant in the room it is always there, I want to go to the zoo, so I say hey lets go to the zoo this weekend and I usually get a response of I would love that ( this is where the rubber band is being stretched out), the week passes by and Saturday comes and it’s a bad day so we are staying home (rubber band is slowly being rubbed here) so a few hours later because the pink elephant has reared its head tension has started to creep into every conversation, I am afraid to say anything because I may say something that is wrong (more rubbing) she is tense because she feels bad because once again fibro is dictating what we can and can do (even more rubbing) so by 4pm the awful question is asked what’s for dinner and snap the rubber band is broken and an argument, intellectual disagreement, fussing you name it, it has started and when the conversation is over you look at each other and say what are we arguing over? Why are we arguing over this? Maybe this is a bad analogy but what I seem to have found is that everyday dealing with this disease I see the rubber bands getting stretched, sometimes it’s a quick snap other times it’s a slow rub and it takes a week to snap but it always happens. The hard part is when you stop and realize it isn’t the stupid thing I am upset about it is really that I feel guilty, or hurt or _______ that this disease is actually controlling our day to day lives.

Paper ClipsHere is the problem with paper clips, they hold things together but not nessacarily in the right order, have you ever had a stack of papers and while going through them you move them around and then you have to take care of something so you grab the clip and put it on it? Only to come back 15 minutes, a day or week later and try to figure out how in the world did this get disorganized, where was I in reading this? Well this is the down fall of the paperclip it holds things together but not always in the right order papers can get disheveled, pages get missing, and sometimes when the stack is to big the just pop off.
We do fibromyalgia some days with paperclips, we are battling this today so it goes to the top of the stack, tomorrow we do that so it gets to the top, well lets do this so its on top now, we are arguing with the insurance company trying to get this medication, we are arguing again with insurance for this kind of treatment. Today is this doctor’s appointment, tomorrow it’s a different doctor. Before you know it a week has gone by or a month and all the pages have been moved around and what is supposed to be on the top of the stack which for me is loving and supporting my wife has been spread somewhere else in the pile so if I dig hard enough I may find that page and put it back on top, before you know it you no longer can tell what the proper order is so you try harder to figure it out put them back in order and clip them together, there are so many pages and things to be done that the paperclip just pops off, you cant get it to stay on, this in itself causes us to make a new page a page on how to deal with ourselves when we can no longer keep it together. So what is your paperclip what holds it together for you is it your spouse, is it a friend, what are you relaying on to hold things together for you?

StaplesI love staples here is why, they do the job, they keep things together, you flip to a page but things never get out of order the things that need to be upfront stays up front no matter what it is it will stay in the proper order. I know I am using pages and paper as analogies but what are the pages I mean your spouse, your loved ones, your doctors, your meds, your treatment, your understanding of what the other is dealing with, yard work, special times, and the list goes on. The problem I deal with is that some days instead of using a staple to hold it together I use the paper clip and the rubber band, I lose sight that it isn’t lynns choice some days I lose sight some days that I am supposed to be supportive, I lose track of time that should be spent just enjoying life with my bride, I get consumed with fighting the battle, I get consumed with my selfish desires, I get consumed with frustrations that I cant make my wife better, I get angry that there is no real true help out there for her, well that isn’t true we do have God and each other so there is true help but there doesn’t seem to be relief. I have offered to sell my motorcycle to help pay for treatment, and new meds that the insurance company will not pay for, but in reality that will just make Lynn feel worse. When was the last time you looked at your pages, when was the last time you reorganized what is important, when was the last time you prioritized the pages, when was the last time you honestly sat down and said are my pages in order, are they in the right priority, how do my priorities match up to the needs of the ones I love? I think in the end that is the problem we get so caught up in all the stuff we don’t flip back to the front of the book to remind ourselves and our spouses often enough what that front page says so let me flip it now and read the first page as my parting thought:

Lynn I love you with all that is in me, you are a beautiful, vibrant, sexy, funny, and wonderful women.
I was a blessed man the moment you said you would marry me. I know things are not easy but remember I love you and together we will get thru all of our difficulties.

nothing to show for it????

2010-10-26T22:53:00.005-04:00

Nothing like going to the doctors office and spending $70.00 and having nothing tp show for it. Well it really wasn't a doctors office. It is a place called Integrative Therapy and it is a place that my new pain doctor recommended I go to. Well, my new pain doctor must think my husband and I have a money tree growing in our back yard. This place does not accept my insurance. My insurance will pay 60% but only after I pay my $3000.00 deductable. My consult/evaluation was $70.00 yesterday. But "normally" they charge $100.00 but because my insurance doesn't cover it they will give me a discount. How nice!!!! They offer massage therapy, acupuncture, bio feedback, physical therapy and much more....I really would love to do it but........they want me to come 2 times a week for 2 months and that equals $1120.00. Now that doesn't include any tests. Then I would go once a week the next month. O I forgot to say this is a 3 month program....they specialize in fibro.
I forgot they have a nutrition program too.

My question is....why does everything with fibro have to be so freakin expensive????? My poor husband, I feel like every time we are turning around it is to spend money on my fibro.

I went to a new doctor 2 weeks ago....I am still not sure about him?????
It is very hard to get ahold of them to ask a question. He put me on a new muscle relaxer and it seems to be helping a bit only 1 really big problem and 1 smaller problem. It makes my mouth as dry as the Sahara desert and a rash on my neck. What really sucks here is that my lovely insurance company had their say in my meds. My doctor prescribed a different med first for me, which I really really liked. It was 1 pill that worked 24 hours!!! But because it was expensive and did not come with a generic they would not pay for it. They would however pay for the one I am on now that is working just ok and gives me major cotton mouth. It is also 3 pills a day, just what I wanted....MORE PILLS!!! I cannot continue taking this one....;(

By the way after my eating binge last week I am happy to say.....I am back on track. As of this morning I am 7 pounds away from what I weighed when I started dating Jim.

Driving Home

2010-10-21T20:51:00.004-04:00

I wrote this last Thursday but forgot to post it, so here it is....

Well I drove home from the beach today by myself and it was a looong trip home!!! I think and I feel like I gained 10 pounds because all I did was eat to stay awake. I ate grapes, circus peanuts, boiled peanuts and pretzels and a mini Dairy Queen Blizzard!!! (it was only a 4 hour drive) I even drank 1/4 of a cherry pepsi and I NEVER drink soda!! I did drink 2 bottles of water though. Now keep in mind I also have pms!!!
OK so now I have grossed you out with what I ate on my drive home let me really gross you out with what I ate on Tuesday and part of Wednesday...a ton of candy and 3/4 of a cream cheese cheese cake!!! Yes, I said...3/4 of a cream cheese cheese cake!!

Don't really know why I posted this but I did...:)

Understanding the scarecrow

2010-10-12T16:42:00.003-04:00

I sooo understand how the scarecrow felt in the movie The Wizard Of Oz, if I only had a brain!!!! My memory is getting so bad, it is really beginning to scare me. I am doubting so many things these days. I write everything down. My to do lists are becoming longer just so I can remember the simple things I need to do. I cannot spell some of the most basic words. (thank goodness for spellcheck and Jim) I know I have spoken before about my memory and how it seems to be slipping away it is just that lately it is effecting my everyday life more and more. Jim will say we talked about something and I will swear we didn't and then I will get angry because I don't want to admit to myself that we "might" have discussed it already. See, I still don't want to admit it....hahaha!
My friends have to be thinking I am crazy or just "stupid" or "boring".
I know that Jim gets so frustrated with me and I hate that....I understand why he does but I don't have to like it. He is such a patient man but he has his limits and I know I push them!!! I really don't mean to and I HATE IT!!
I get soooo scared when I can't reach back into my memory and no matter how hard I try, I can't seem to find or remember something. It is almost like I want to tear my insides out and just SCREAM!!!!! LET ME OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

LATELY I FIND MYSELF WANTING TO JUST THROW SOMETHING OUT OF PURE FRUSTRATION!!!!!!!!!
This past Friday I almost threw my hair brush across the room and just yelled at the top of my lungs....I could just feel the rage inside me and it was all because I felt "stupid"!!!! THIS IS JUST ONE MORE THING THAT FIBRO IS TAKING FROM ME! I am trying so hard to fight against this, I am doing what I can to excercise and feel "healthy" but the fibro keeps taking things from me. I have lost most of the weight I wanted hoping that would make me all better...not!!

I mean for goodness sake for 15 years I was in charge of over 15 stores, 86 plus employees, sales volume of over 15 million dollars, I drove all over SC, NC, TENN and GA and part of VA (without a GPS) trained new District managers, was a trainer and now I can't even remember what I wrote in the sentence before this one.

I have thought about about trying to get a part time job for the holidays but am so freaking scared of being fired!!! I honestly don't think I could remember the most basic thing!!! I mean there are days I can be so confident and sound so sure of myself but ask me things and forget it!!! I thought I could be a gift wrapper, that should be pretty easy right???? I am afraid to try that but then that is mostly volunteer and I want to make some extra money...

It is like there is something in my brain that stops things from coming forward....it gets to a certain point then hits a brick wall and BAM!!!!! It actually hurts in a way.....makes my jaw hurt from trying to remember.

Fibromyalgia isn't just a bunch of pain. It is so much more that people don't know about. I see the commercials on tv and they make it look like it is so easy to fix. Yes, I know I have blogged about the commercials before too but I don't think I have said this before. On the commercials all they talk about is the pain, and they make that look like minor pain, but they fail to mention the EXTREME FATIGUE, SEVERE IBS, IC, FIBRO FOG, MYSTERY PAINS, clumsiness, weakness in my hands, eye sight problems, mouth pain, teeth problems.....I think I got everything but I am sure I have "forgotten" something.
That is a list of most of my symptoms.....Maybe I could do a TV commercial????

Tomorrow I am going to my first appointment with a Pain Clinic. I am nervous.....it looks like a pretty serious place!!

Everyone has been saying how good I look lately. I wish they could see me right now, they would be surprised. I look like something the cat dragged in. I am sitting here typing this with my eyes 1/2 closed trying so hard not to fall asleep. My stomach is so bloated I look like I swallowed a beach ball and it feels like it too!!! I need to go take a shower but don't know if I have the energy to climb the stairs plus my hips are freaking killing me. My right hip is so sensitive to the touch right now, if I put the slightest pressure on it I want to scream. Even if I am not touching it, it is hurting. It was hard getting comfortable last night in bed....I am lost when Jim is not in bed with me. I use him as part of my pillows. What I mean is, his arm fits just perfect around me with a pillow and I can snuggle up to him in the perfect position. Only problem is, when he wants to move....I didn't say it was a perfect thing :(
Speaking of going to sleep, I am going to crawl my way up the stairs and do just that! O'yea and we need a smaller house!!!! Anyone want to buy our house???

If I only had a brain

2010-10-11T23:55:00.000-04:00

This song keeps going thru my head.....

Anxious

2010-10-06T10:35:00.002-04:00

What was supposed to be a romantic get a way for me and Jim is turning into an anxious romantic get away weekend.
Let me back up here......Jim and I have been talking for quite some time about going motorcycle camping. Sleeping under the stars, holding each other and just relaxing. Riding and looking at the leaves turning colors, hiking thru the woods and "exploring" nature. I emphasize that it was going to be just me and Jim!!! Now it is the whole MAVERICK group going. Which I am 100% ok with everyone going it just changes my anxious level to 100%. When it is just me and Jim, I don't worry about my hurting or being tired, he understands, loves me, is patient and I am relaxed.
(I am not saying that my friends don't love me)
I am just worried that if I wake up and can't move, will I put a damper on everyone'e mood? Will they understand? This is going to be the first ride that Jim and I have taken together in over a year and I don't want to hold everyone up by stopping along the way due to my pain.
I am trying not to stress over this to much as I don't want to bring on a flare....

The weather the past few days has been wonderful and my body has been enjoying it so much. I really want this winter to be better than the last one. I am trying to do everything I can to feel fit. I finally lost 2 more pounds!!! Yea....I am going to Tai Chi today. It is going to take every once of energy I have to get up to go there but I am going to do it!!! My pain level this week has been up and down but not above a 6, which for me is AWESOME!! My energy level has been ok, just ok. I have been having some spurts of complete energy drain. Where I will be doing just whatever and all of a sudden my whole body goes into limp mode....kinda like right now. My arms feel like they weigh a ton. I have been having what I call fibro pains too. What I mean is pain that there is NO reason for me to be having. My right wrist for about 2 weeks was in major pain and the only thing that helped was a wrap that I kept on tight. The pressure took away the pain. Then Sunday my right upper arm started hurting it was kinda like a muscle hurt and a weakness at the same time. Then yesterday it traveled down to my lower arm and it was more like a bone pain. For awhile I felt like I couldn't hold onto anything, like I had no strength. Weird, huh?? As I said, I just call it Fibro Pain!!!! No rime, no reason!!!!

O'well gotta go to the Y......I can do this!!! I HAVE TO DO THIS!!!!!!!!!!!!!!

2010-10-04T23:07:00.002-04:00

Last week I was watching the weather report and saw that rain was coming and not just a few sprinkles but some serious rain!!! I automatically started to worry about what it meant for me and my pain/energy level! I know that people are affected all the time by the weather, heck some people can even predict the weather....:)by the way their body feels!!!
For me when it rains, I feel like crap to be honest!! My heart goes out to my fibro friends that live in England. Damp, rainy weather all the time...I would be soooo depressed! I woke up this morning about 5:30 (after going to sleep about 1:30) to some really bad hip pain!! I mean the kind that makes me want to scream out load when I barely move, let alone role over on it. I got up, took my pain meds and luckily fell back to sleep. I remember Jim leaving for work about 7:40ish and that my body felt like it had been hit by a Mack truck!!! Let's just say that I didn't get really awake until 9:30ish. If my house had caught on fire I am sure I would have burnt up in it. That is how bad it was!!!!!!!!!!!!!! Even when I woke up about 9:30 it took me about another hour to be able to get out of bed. I am SO SICK AND TIRED OF LAYING IN BED WAITING TO BE ABLE TO START MY DAY!!!! I lose so many hours of my day that I want back!!! I have said a thousand times I hate mornings!!!!

My body hurts so bad in the morning!! Body aches, still tired, hip killing me, burning, every nerve in my body on fire!!! So please don't be upset if you ever call me and I don't answer the phone and say "GOOD MORNING"!!!!

I was supposed to drive to the beach this morning but that got put on hold because my body said....NOT!! So I am going down tomorrow :) I can’t wait to see my baby girl and my parents. I love my family!!! My daughter is the light of my life. My parents are the best…..I love them more than they will ever know!! Originally my friend Michelle was going down with me and this was going to be a last beach trip for the summer but then the rain came to the beach as well and well, it’s not much fun to lay out in the rain.
I used to be sooo afraid to drive by myself to the beach! Well, if truth be told I still get nervous but I PLAN better now. If I get tired, I pull over and take a break. When I start to hurt too badly, I pull over and walk around. I am also going to be wearing a heated back thingy. If I don’t think I can drive then I just don’t do it. I have cancelled trips before. The most important thing is….I HAVE CONFIDENCE IN MYSELF AND MY ABILITY TO DRIVE TO THE BEACH!!

The great part of my day is that Jim and I went to the Y together again tonight! Jim was not able to go at lunch and I was afraid we wouldn’t go but he kept his commitment to me and himself!!! I really want to lose 10 more pounds and more importantly I want to be as active as possible. I am so afraid of winter!!! Last winter was such a dark time in my life……my body does not do well with cold or the rain!! I am really nervous......

I made my trip to the beach and had a great time!! I was able to relax and take it easy so even though the weather caused me pain and to be very tired, it was o.k..
A total of 12 inches of rain at my parents house....WOW!!!

borrowing from someone else...

2010-09-29T11:14:00.002-04:00

I truly hope this person doesn't mind but I am making my post for today someone else's comment. Someone commented on my husband post and I will call him comment # 4 because for the life of me I cannot remember his name and I just looked at it!!!
Anyway, I love what he said but more imprtantly I love that he supports what my husband says!!

I truly truly hate that Jim does not have a support person!! I know we talk about it, my fibro. I say it like it is some terrible thing that I am afraid to say....fibro, fibro, fibro...there I said it!!! But having another husband that is going thru the same emotions and struggles that he is and being able to vent to that person would be so wonderful!!! There has to be better support out there for our spouses!!!! Not only would it help him but it would help us!!!

I am saying all this and am now going to ask you to go and read the 4th comment that someone left on Jim's post Elephnats, Snapping Turtles and Frogs. I am sure I could cut and paste it over to here and I am sure I used to know how to do all that but for the life of me....can't remember how to do.....!!!! It is really great to be me.....

I couldn't read the comment without crying.....

elephants, snapping turtles, and tree frogs

2010-09-24T14:38:00.003-04:00

Elephants, Snapping Turtles and Frogs

From Lynn’s husband

I know what your thinking, Lynn’s blog and two post in as many days what’s going on

Well I find myself having a desire to write something again on Lynn’s Blog. I keep asking myself why and what am I looking for. Well I have come to the conclusion that I am looking for a way to maybe reach either the women with fibro and or there husbands to let them know two things. If you are a women hopefully when you read what a spouse says about his wife and dealing with this I hope you understand that we are by your side each and every step, or lack of steps each day, we don’t always show it as men but we are trying to stay strong for you and for ourselves. And for the husbands because I want you to know that this is a lonely disease, who do we have to talk to? I mean really how many of us can talk to our hunting buddies, work buddies, family, motorcycle friends, heck even a stranger and explain the pain we as spouses go through when you cant even hold your wife, how it feels when you want to do something and you have to hold back because the one you love is in pain, the guilt you feel when you go alone somewhere because you have to get out and do something or have made a commitment days before and you cant truly enjoy yourself because your worried that your wife is at home in bed hurting and when it is all said and done you are helpless…… I was raised by two great parents that taught me that as the man I am to cherish, protect and love my wife, well with fibro some days there is no way to protect her because I cant see the enemy.

I struggle with the idea of Terminal diseases, there is a bunch out there and I won’t pick or name one but think of them, and now think of the invisible disease what is the difference? I can tell you in my opinion which obviously is skewed Fibro is the worst of the bunch, maybe I would feel differently if Lynn had one of those diseases seeing that we own them once we get them. I have read some interesting articles in my research on fibromyalgia, I am an internet surfer, and I spend a few hours a week looking at the old news and new information trying to find links, ideas and maybe a little insight on what can be done to make my wife feel a bit better. The part that is scary is when you start to really delve deep into the research you find two things, there isn’t much out there in the form of new news, and what is out there isn’t very good. Can anyone tell me how much is being spent on Fibromyalgia research? Not drug developments but actual cash being spent to find the cure and the cause. The medical dictionary defines such:
Terminal illness
Etymology: L, terminalis + ON, illr, bad
An advanced stage of a disease with an unfavorable prognosis and no known cure.

If this is a the true medical definition why hasn’t the medical field defined fibromyalgia as a terminal disease after seeing my wife suffer with this disease I can honestly say it isn’t favorable, and there is no cure. So where is the research money?? Somebody please search it and let me know I can’t find that figure anywhere.

Ok now that I have ranted and have lost my direction back to the elephants, snapping turtles and frogs.
Why did I title this post in such a manor after that positive start?

Elephants:

This is the section on memory, fibro fog and just plain forgetting. I was asked to explain fibro fog to a friend so I took him out drinking. After 8 beers I had a deep conversation with him regarding fibromyalgia and what it is like to have a wife with fibromyalgia, I waited 3 days and then asked him some questions about our conversation, he said he thinks he could remember us talking about it but didn’t recall exactly what was said I told him welcome to a glimpse of fibro fog as I understand it. Well after 4 years of dealing with Lynn and her fibro fog I am convinced fibro fog is worse, we have conversations about the same subject 3 or 4 times within 2 hours some days and then she wonders why I become a snapping turtle, obviously she doesn’t listen to me, obviously she doesn’t care what my opinion is, obviously there really is no point in talking to her any more about said subject. I would bet a paycheck and I only get paid once a month that every husband that has a wife with fibro has had at least one of those thoughts after 4 of the same conversations. How many people have either said or heard the words “I am not losing my mind we didn’t discuss that”

Snapping Turtles:

Lynn alluded to the snapping turtles in her most recent post, she is hurting, she is tired she is in pain, and guess who gets snapped at? Well I know it isn’t really her snapping at me it is the frustration with everything and I am the closest thing to her so the turtle rears its head and SNAP. In the mist of the snap I do my best to try to figure quickly if this is a snap I should argue with or just let it go as it is a reaction to the fibromyalgia. I have found that after about 3 days of a constant flare I also have the snapping turtle syndrome, well what do you expect I am selfish and I want and want and when I can’t and I am having to live with the fibro I can become snappy too it isn’t a one way street. It’s only after the snaps that we sometimes stop to realize that it is just frustration and tiredness from not being able to have what people call a normal life any longer. Snapping turtle syndrome is a very dangerous thing to have in our lives as when we snap we usually say the ugliest meanest things and hurts and does the most damage, the old saying of “sticks and stones will break my bones but names will never hurt me” is the biggest lie we tell kids growing up. Bones heal but the names and the snaps are always remembered. As a spouse and as the person with fibro we sometimes forget that it isn’t us they are snapping at it is just a release of anger and it’s a release of anger directed in the wrong direction most times.

FROGS:

I named this frogs because Lynn is petrified of tree frogs, I mean she will run in a heart beat if she see’s one. Why frogs because frogs are normally creatures that are cute to look at but rarely do we want to reach out and carry one in our hands nor does the frog want us to bother with them. I think fibro has a frog mentality to it for both the of us, and here is what I mean there are days when Lynn doesn’t want me to touch her I don’t mean it in the husband wife sorta way I mean in the just plain out and out I don’t want to be touched, I don’t want my clothes touching me I don’t want your hand touching me I don’t want anything touching me…when she gets like this there is no touching I mean not even kisses they hurt the expel of energy hurts. So how does a husband deal with that, I mean its rejection isn’t it? Or is it? I mean I want to touch I want to kiss I want to hold hands, yes its rejection I know this for a fact it is…. I know its rejection but it isn’t a rejection of me it’s a rejection of I hurt and this will cause more pain. I personally struggle the most with frogs because I need and want the touch of Lynn. And Lynn wants the touch of me this is true torment when you can not freely love your partner any longer, it’s always prefaced with how are you feeling, can I hold you, can I get a kiss. The CAN I gets old it gets in the way it takes away the freedom to just love and touch it takes from us. If you and your spouse struggle with this there isn’t much I can say to be positive here other then we haven’t quit trying and you cant let the fibro beat you here I personally think this is one of the areas in which you should fight the hardest, this is the area I can say that most men struggle with the most, the loss of touch the feeling of being wanted is part of what makes a man a man, we are physical creatures its in our DNA.

Parting Shots:
Wasn’t sure where to end this blog and I don’t know how to spell epilogue. So I will end this with a few parting shots.

Elephants , Snapping Turtles, and tree Frogs, are just that they are ways to an end, they help us put into prospective that we all have them, they may be different animals and they may be different situations but if you are fighting Fibromyalgia you will have them the sooner we realize the animals in our zoo the sooner we can find ways to work with them.

I saw a hat on a lady this summer that said cancer survivor, to all the men and women reading this you may not be a survivor yet but you are surviving, may not seem like it today but everyday you can wear that badge of honor not as a survivor but as someone who is surviving……….

For those of you that have spouse and they need or would like to talk with someone who knows what its like to live with a spouse with this disease feel free to let them know and let lynn know. I dont have the answers but i know the life.

Love you spunky

Where has my mind been..... Trying to find myself!!

2010-09-20T17:32:00.008-04:00

Wow, it has been over a month since I last blogged so I warn you this might be and probably will be somewhat lengthy and I am sure all over the place. One of the reasons for me not blogging for so long is that I have had sooooo much on my mind and just not sure how to put it into words. It is hard to start back up again once you stop for awhile, you want to get all your thoughts out at once.....

I am such a strong woman, I never realized how strong I really was until people stared telling me how good I look. What I mean by that is, I have recently lost 20 pounds. (10 more to go to my pre marriage weight :) I have been laying out ,( this is my time of the year, summer) so I have a tan. Plus laying out is so relaxing for me, distresses me, and the only time I can focus enough to read. SO BECAUSE I LOOK GOOD, I MUST FEEL GOOD, RIGHT? WRONG!!!!! That is where being a really strong woman comes in! More and more people have been saying that I hide my pain very well....First that is because when I am in alot of pain, I don't go out! People don't see me wake 2 or 3 hours earlier than I have to just to take my pain meds if I have to be somewhere. Then I still have to pray that my energy level will allow me to leave the house. People don't see that when I first wake up sometimes I can't even tell Jim I love him right away or roll over into his arms because my body is fighting against me and I have to fight back just to get it to move! People see me when I want them to see me, for the most part!!!

I was talking to a friend the other day and he was going on about his leg hurting and something else was hurting and I was giving him a hard time because he is "mr healthy" and he said but it has been like this for about a month now and it is really frustrating him and I just chuckled and said, I love you but I am the wrong one to look to for sympathy on this one. I wasn't being ugly, just said imagine the pain being there 24/7! I AM A STRONG WOMAN!!! I DEAL WITH MY PAIN 24 HOURS A DAY 7 DAYS A WEEK AND PEOPLE DON'T EVEN NOTICE, for the most part!!! There are days where I don't leave the house. There are days I leave the house and if it wasn't for Jim, I would never make it.....

I have been dealing with this pain for many years now and trust me, it has changed me in so many ways. I am definitely not the same woman I was when Jim met me, I am always apologizing to him for that too. Then again I am sooooo blessed to have met him and married him because I could NEVER do this alone! The good Lord knew this was to be my life. Boy, I wish he would have clued me in a little bit though....haha!

My pain has made me such an angry, bitter person with less patience than I used to have. I was never known for being on time but now because of my lovely friend called fibro I really fight against that battle. Which is so unfair for Jim when he has to sit around waiting for me. He is usually great about it. There are times it gets to him but that is to be expected. I used to love to smile and now I have frown lines on my face!! THAT REALLY PISSES ME OFF!!!

Jim, is so the man of my dreams, loving, kind, funny, patient, sexy, my best friend in every way! ( he is not perfect though :) and can drive me crazy!!!) I started falling in love with him the first day I met him..........

I hate that I take my pain out on him!!! I snap at him when he doesn't deserve it! I hate that we are late to places because my pain and energy just STOPPED me from getting ready! I hate that I want him to hold me and he can't sometimes. I hate to see the look of pain in his eyes because he wants to take all this away from me and he can't!!

I hate that we fight because of my fibro....yes, MY fibro because I wouldn't want to give it to anyone else!! I WOULD LOVE to get rid of it though!!!!!

I am so very excited to be starting Tia Chi at the first of October with my husband :) I have heard so many good things about it helping fibro and having Jim with me is an extra bonus. Having Jim working out and encouraging me when I don't want to keep going is what keeps me going.

In the past month I have learnt that people are not who they say they are...:( People want you to think they are one way and they try and put on a front, then boom they show their real colors!! I don't have time for people like that in my life......

In the past month I have learnt that I want my own jeep!!! Jim and I saved enough and got us a 2005 Jeep. At first I was a little unsure about it because I know how Jim loves his trucks but now I am so happy he went with the Jeep. I am calling it my "Harley"! Riding around with the top off, the sun on me and the wind in my hair with the music playing, WOW it is AWESOME!! We got a Jeep parts catalog and to me it is like the old Sears Christmas Wish Book. I got thru it page by page....one day I will have my own. For now, Jim is letting me drive it to the beach next week...:)

This past month I have started getting ready for the winter months, I feel kinda like a bear getting ready for hibernation. Last winter was one of the worst of my life.....and I don't want a repeat!!!

Since my reunion, I have been keeping in touch with everyone and we are planning to get together again next year...:)

My pain level has been up and down as usual...my mornings suck!! I hate them!!! The first 2/3 hours of my day take so much out of me.......Most pain levels are done on a scale of 1 - 10, well mine goes up into the 100's sometimes!! My energy level can be nonexistent!!! I am now losing my hair (I don't have alot to begin with) my right wrist is in constant pain. I still have all the fun pains of my legs, ankles, hips, back, shoulders, neck and my head!!!! My IBS still keeps me weighing an extra 5 pounds every day and looking like I am 6 months pregnant. My IC is always there. So yes, my fibro is still with me and not showing any signs of leaving any time soon! O'yea my memory is getting way worse....spelling forget it!!!! All I can say is thank goodness for spell check!!!! And fibro fog IS REAL and living in my brain!!!

Well I am typing this with my eyes half closed so I say good night and sweet dreams.

Not where I thought I would be?

2010-08-03T10:20:00.004-04:00

Well our vacation ended way much better than it started. When we first got to the beach, I spent the first 2 days laying on the couch in so much pain I just wanted to take extra pain pills, curl up in a ball and wake up 4/5 days later. (just in time for the reunion) The next couple days after that were tough but I survived...it was really tough on Jim! I hate that so much, not only does my life suffer but his does as well and he didn't ask for this. He tries so hard to be patient and understanding (and does an awesome job) but it is still not easy for him!! He wants to go and do things, enjoy the beach and I am laying around....how do I deal with the guilt?
I ended up going to CVS and getting a muscle relaxer filled on top of my pain pills I had brought with me. I even talked to the pharmacist and was asking her for anything that would take away the pain.....it didn't help I just had to wait it all out!

I have friends that I love dearly that live at the beach that I want to see and spend time with but find myself hiding out when I get there. I want to call them and spend time with them so bad but do they really want to come over and spend the day laying around on the couch...I don't always want to talk. I want to see them but how do I explain ALL this to them??? How do I make plans and then have to cancel at the last minute??? They are used to the type A personality times 3!! I worked with some of the most wonderful ladies and love them dearly and consider them lifelong friends but hate that I can't be what they remember....Stephanie, Karen and Heather I love you!! 20 years of friendship...:)

Friday got there and everyone started to arrive for the reunion :) Friends that I have known for 34 years, we went to middle school together. I was lucky enough growing up to be a military BRAT. My father was in the Air Force and was stationed in Holland from 1973 - 1976 (not sure of the year we got there but I know we left in June of 76) While I was lucky enough to live there I was even luckier to make friends for life!!! Donna and Kathy I will always be there for you!! I was looking at every one's faces this past Saturday night and we still look the same.....we were such a close knit group. Not everyone could make it though and we are hoping to do a big reunion in 2013 back in Holland so maybe just maybe everyone can come. I really don't want to wait until then though to get back together with everyone, I think we should make the beach an annual trip...just a thought!!
I was so afraid that my pain and CFS would stop me from enjoying myself and I thank GOD for a very low pain weekend!! My friends know and were understanding of my limitations but I didn't want that to be a "part" of this weekend and it wasn't!! I was even able to go disco dancing for a little bit Saturday night.

I am on the other hand paying for it all now.....have NO energy, laying around doing nothing and I want to do something!!! I want to go to the gym, the grocery store....
My body is saying hahahahaha, not going to happen! You are going to do what I say!!!!
My yard has never looked as bad as is does right now....I walk outside or should I say trudge outside and get even more depressed. I used to be the WEED QUEEN! What I mean is I would be out there pulling weeds everyday just for the fun of it. It is a great for stress and it is so overwhelming to me right now....I used to have a vegetable garden and flower bed now it just looks like crap!!!!!!!!!!!! I used to at least have the energy to work an hour outside and for the past 2 months it just hasn't happened. I am overwhelmed by everything that needs to be done to our house!!! My rose bushes look terrible.....:(

I do find it funny but not funny because I know/believe they are linked together but my stomach is acting up at the same time??? HUUUMMM????I feel like I have a pump in my stomach blowing me up and it just plain ol hurts!! My bladder (IC) is acting up too!! Just my body/fibro saying, ok you had your fun now you are mine again! WELL DAMMIT, I DON'T WANT TO LET IT WIN!!!! I am going to do a little bit each day and slowly get back to feeling a little better. If I can just get myself to the Y for 20 mins on the bike or to a yoga class I know it will help! PLEASE GOD HELP ME!!!! I do know I cannot eat sugar.....fried foods and I did eat both this past week. I knew better but did it anyway. Dunkin Doughnuts was so good!!!

Looking back at the reunion and thinking back to the 70's.....I NEVER THOUGHT I WOULD BE WHO I AM TODAY!!!!!

What do I write about today?

2010-07-20T21:30:00.004-04:00

Do I write about getting a call from our lawyer today about something we thought was all taken care of and come to find out wasn't? That my stress level went thru the roof and my body then went into overload!!!
Do I write about going broke trying to keep me in meds and natural supplements. On the chance and a prayer that if I take them they will help me get thru the day!! I mean come on, someone please tell me why COQ10 is so freakin expensive??? And if it is supposed to help me with energy then how long do I have to wait for it to work?? And is it really going to help me....we will see????? Of course I have to fight the urge to sit around and do nothing!! I have to make my body move....FOR ONCE I WOULD LOVE TO NOT HAVE TO FORCE MYSELF TO MOVE!! I WANT TO BE ABLE TO RUN AROUND AND PLAY....

Jim was just wanting to be playful last night and I just didn't.....just tickle me. I HATE BEING SICK!!!!!!!!!!!!!!!!!!!!!! People just don't get it!!!!

Do I write about crying thru out the day at the drop of a hat? Do I write about how I need a purpose to my days? I wake up and really don't have much to do but then again what can I do? What can I plan to do other than just get thru my day? My purpose right now is to try and be a little bit like the old me every day. Try to be as "normal" as possible.....not even sure I know what that is :)

My thing lately has been not knowing what to do with myself. I hate that I cannot be more productive...

I hate the way my body feel when I wake up in the morning. After a restless nights sleep (usually wake up several times due to pain in my back, hips and my stomach) it feels like every nerve in my body is on fire and hurts! It is really kinda hard to explain but I HATE it!! I almost don't want to get up but I can't stand laying there either!! I know if I do I can take my meds and will start to feel better . What I mean by feel better is, the "funky" feeling will go away!! The first hour, hour and a half of my morning is hell for me!!!

I know this is awful of me to say but there are certain people that I wish would have to live 2 weeks in my shoes!! Just be living their lives and then all of a sudden BOOM.... Just 2 weeks because I wouldn't wish this on anyone for a lifetime...it is a life sentence of pain and life changing fatigue. They talk about me behind my back and don't think I know....act as though they are concerned when really they think I am full of bull and could be working and should be working!! That I let myself get into the situation I am in by choice!!!!!! Don't be fake!!!! I know this person better than they realize I do!!!!

I JUST WANT TO FEEL LIKE THE OLD ME......SOOOO BAD!!!!!!!!

hip pain

2010-07-16T09:36:00.005-04:00

Well I went to my fibro doctor yesterday and now have some new "natural" supplements to try. Nothing exciting but to me anything that will help is a blessing...I am going to be increasing my magnesium milate by 1000 mg and am starting coq10. Something I did not know but my doctor wants me to start taking an aspirin a night before I go to bed, she says it will help with my memory. There is a certain one she told me to take but I will have to post which one it is later because the paper is downstairs and my pain meds have not kicked in yet. My memory has gotten soooo bad!!!!

One thing we talked about while I was there was my hip pain so I got a cortisone shot in my left hip. I am so glad I didn't get one in my right hip like I was going to ask for....because about 1:30 this morning I woke up the pain was so bad!!! I laid there trying to move and not make to much noise ( I didn't want Jim to hear me crying) I finally had to wake Jim up and ask him to get my heating pad out for me. I have not had pain like that since I was a little girl and we lived in England. (if my mom reads this, she will know what i am talking about) It was terrible...my mom just had hip replacement surgery and i only hope and pray that i never have to go thru that. If the pain is anything like it was last night, O my goodness!!! My mom is such a strong woman!!!!

I have got to get motivated!!! I don't know what is going on with me??? I just can't seem to get anything done. Usually I can wash clothes, dry them and put them away in the same day...not anymore it seems. :) I feel lately as though I have no purpose anymore. Since I got sick and had to quit working I have tried to come to terms with all this and still haven't, I wonder if I ever will? I mean how many times can I clean the house? How many times can I work in the yard? And then when I do do those things it takes me all day to do a quarter of what I used to be able to do! Does that make sense??? Then when I do something, after I am done I need to lay down for awhile to recoup some energy to finish my day. I mean a 46 1/2 year old having to take a nap every afternoon, come on now.....I thought I got to stop doing that when I left grade school :)
I don't know lately I have just been wondering what there is out there for me to do? I used to work no less than 50/55 hour work weeks, usually with no less than 10 to 15 hours of travel time included. I was a district manager for 15 years then when I got married to Jim and moved to Greensboro I switched jobs and became a manager. With that job I worked on average 50 hours a week too.
When I first got sick there was NO WAY I would/could even think about working 10 minutes in a day. Now some days I feel as though I could work for an hour here one day then maybe an hour here another day. Not necessarily work, maybe volunteer somewhere. I just want to do something have a purpose. I mean 1 day I feel like I could work 1 hour then the next forget it!! Or if I make plans to do something with someone whether it be the next day or the next week I have to pray that I can do it!! My body changes from one minute to the next on what it will allow me to do!!!! I know I am just rambling on again as I usually do...it's just where my mind has been!

I am starting back to the Y!!! Since I have this time on my hands I am going to use it to get some of my "loose" skin to tightened up. The old fashioned way.....It will probably take me a couple years to do it but I am going to do it.....

Good morning

2010-07-15T08:47:00.002-04:00

I have not blogged in awhile....how do I follow what my husband wrote??

First let me say, I didn't think it was possible to love my husband any more than I did, WRONG!!! I fall more in love with Jim everyday!! Everything he wrote was sooo true. It was a huge eye opener for me and since he wrote it I am happy to report we have danced in the kitchen 3 times and have layed on the SAME couch together several times. :)
Having fibro sucks beyond anything I can imagine and I never thought I would be dealing with a life of pain but God soo blessed me with Jim. I could not do this without him!!!!

I am sorry I am not blogging as much lately as I should be, just not feeling like it. I have become so lazy this past month! I have got to get out of it!! I am gaining weight and I am hating it!! I feel my body getting thick again and I am starting to eat more!!!!!!!!!!!!

I went to my female doctor 2 weeks ago and found out that my testosterone level was wayyyyy low so I am now using a little testosterone gel and I am so afraid that it is what is making me feel thick. When actually it is me not working out, me not walking!! I am being lazy!! I have got to get active!!! I cannot sit around!!! Please someone give me a swift kick in the butt!!!!

OK AS OF RIGHT NOW I AM GOING TO NOT BE LAZY!! I AM GOING TO GET UP AND BE ACTIVE!!! I AM GOING TO DO 30 MINUTES OF EXERCISE A DAY!!!

I worked too hard to loose this weight and have 13/15 pounds more to go and AM going to loose it!!! So NO more excuses.....just because I have CFS, I can still do this!!!! RIGHT???? I am trying to pump myself up....:)
So I am going to get up.....bye

A Husbands Perspective

2010-07-05T10:35:00.002-04:00

A Husbands perspective

I had promised I would write a post a long time ago but really have fought against the whole idea for a few reasons, 1st this is Lynns blog for what she lives with daily, 2nd not sure what or how I will say what I want to say, hard to believe I know seeing that I am never at a loss for words. Recently Lynn has asked my a few times why I never post on her blog or make comments, I usually answer her with its your blog and I just talk to you about it so why write something, yes I know it’s a typical husband answer. So I am writing this for Lynn to all the women with fibro/cfs who follow this maybe it will give you some insight to what your spouse go though,, maybe is the key word there. I am going to try to touch on the psychological, physical, and social, I hope this isn’t to long of a post but should provide an insight

Psychological-
People ask me all the time how Lynn is doing? Lynn touched on this earlier in her blog weeks if not months ago about what do you say to that question, and then I ask myself do I really want people asking me this? How do I answer not that they don’t care but selfishly I don’t want to have to deal with the truth or have to lie to them, usually I say so-so , but is that really a truthful answer? Maybe some days it is but it is now my mantra to people who I don’t see on a daily/regular basis and sometimes to those who I do see daily.
This disease has stressed the family unit beyond belief, we are staying strong, but it is difficult when you try to hold the one you love and you cant touch them because of the pain, you try to talk and you get snapped at for no reason other then they are in pain. Trying to rectify in my mind, is this because of the fibro or is this her? Yes there is a difference between the fibro and her. A typical perfect day would be to come home from work walk in the door, smell dinner cooking, give my wife a kiss, talk about the day or plans for the weekend, you know real communication, maybe even a hug and a slow dance as we would chat. Yes this is real I used to love coming home and dancing in the kitchen joking around with each other. We would eat dinner together and play jeopardy on TV (I always win). We would take the dog for a walk come home share a chair and watch some TV. There was communication, Romance, humor, a passion for our future together. We would go to friend’s houses, they would come to ours. We would go for motorcycle rides and trips,, life was an adventure. Now present day home life, I call say what’s for dinner around 3ish, usually told something good, I get home and Lynn is in bed taking a nap or just laying down because she is hurting, I go down stairs start the dinner (two problems with this, 1st Lynn then feels bad because she isn’t doing it, 2nd I get frustrated because I am having to (I know this sounds unreasonable but I can be selfish as I stated earlier)). Ok dinner is done,, we sorta watch jeopardy as I ask how the day was, bad question because she doesn’t want to complain so she tells me so-so,, there is a lot of so-so’s going around these days, I try to hug or kiss her and I cant or its just a peck because the pain level is to high, she tries to play like nothing is wrong and now I am on pins and needle. We now sit on separate couches and when it’s close to bed time Lynn is in pain so she is up and moving around trying not to focus on the pain, which then leads me to always ask the question,,, can anyone guess?? Nope,, that wasn’t it, it is why do you have the energy to do stuff at the end of the evening and don’t have energy for me,, yes I know I know I am bad for asking, but I think if you ask any husband whose wife has this disease they will tell you we are suffering with the pain along with the wife, we may not feel the physical pain but we deal with the emotional drag it has on our relationship, we have to put our wants and desires on the back burner. I am now afraid to take Lynn on a motorcycle ride because the last time we went I had to keep my arm wrapped around her to make sure when she fell asleep that she wouldn’t fall off,, try riding at 70mph one handed with the occasional twitch of the person behind falling asleep, never thought of it until now but I guess we still do have adventure in our life, so if you ever read in a paper that someone fell of a bike at 70mph call and check on her to make sure it wasn’t her. Just playing we actually make a lot more stops and do shorter stints on the bike when we ride now, sorry Marge and Bill couldn’t resist.

Physical-
What to say here I have no clue at the moment, physically she feels she is a mess no matter how pretty and sexy I say she is she tells me I am wrong, we are in a constant battle to do things, as in she wants to do things but when the time comes the energy or pain out ways the desire. Physically I am what most would call healthy, I am a go getter (most of the time) I am on the move I want to go play. But I now have to fight my desires to do stuff because of the fact that I don’t want Lynn to feel worse then she already does, this usually back fires because she knows I want to go, so then she feels worse because she cant.

Social-
how has life changed socially, we would go to a nice dinner, hang out with friends and do things, now we no longer make commitments, or we make so-so commitments you know the kind,, not the ones where you make it and break it if something better comes along, we don’t do those, we do the kind where we say to the friends yeah we are in for that, “BUT” it will all depend on how Lynn is doing that day. I cant remember a time when we have been early, I know most who know Lynn will say she was never early before she got sick, but the difference is now she wants to be and beats herself up because she cant get her body moving, she needs a 15 minute naps. Yes this is frustrating I have actually once or twice gone on with out her and had her catch up, I’m still trying to figure out if that is the best way to handle a situation like that because I worry about her and stress because she hasn’t made it yet,, or I stay home and get impatient asking how much longer every 2 minutes but I swear it feel like a lifetime when I am waiting. We rarely do friend things like we used to most days are spent at home, being reclusive. It weighs on our friends because they honestly love Lynn unconditionally but they have no clue what its like, they can read and read,, there is a bunch out there about fibro the problem is most of it is hogwash ( like how I refrained from cursing). And because they care we have a bunch of doctors who have solutions,, some are pretty good and I have taken the advice of one and have found that beer does help. Maybe just helps me but then again this is a post of what I live through,,LOL.

Ok to sum it up in no uncertain words, Life with Fibro stinks, but life with Lynn is awesome. We are blessed in more ways then we can even begin to count and that is what we try to stay focused on. Though this disease has taken things from us, God has also used this disease to bring us closer together. If this would have happened when I was younger I can honestly say that as a spouse I am not sure I could have been loving and supportive. I know when people read this they may not understand. And for all the spouses who read this remember one thing and hold tight to this one item please,,,, The women you fell in Love with is still there and I can assure you she wants to be back to who she was, and she is who she was before she got this disease, you may have to remind them of that from time to time.

Last parting words to Lynn when you read this, Please understand that with all that was written above I Love You and you are not Fibro, you are beautiful strong women I will always stand beside you and I will always carry you when you need to be carried. You are an inspiration to many people and a blessing to those who know you. I am honored to call you my wife.

Jim

p.s.
As a famous writer once put it: From there to here, and here to there, funny things are everywhere.

why me??

2010-06-25T19:18:00.002-04:00

We went on vacation last week and I am happy to report that for the most part I was able to do everything that everyone else did. I have already written about this but I have to again to get to what I want to say now. The firs morning, I had to stay behind because I hurt so bad and was so tired while everyone else went out. I started to get a cold on Thursday but that didn't really kick in till we got home. So I am really thankful for no bad fibro flares :)

SO WHY CAN'T I COME HOME AND FEEL OK???? I have almost gotten over my cold. I am so exhausted this week, I have gotten very little done. All I want to do is lay down...Now I am having a small shingles outbreak!!!! (In a very bad spot too) I think my body is trying to pay me back for last week. I could see if it was a wild week but we were in bed early pretty much every night and were pretty laid back. The really hard part is I can't fight it. I am still learning not to do that...it isn't easy though. I want to go, I want to do things with my husband. I hate that I can't do things with him and our friends. Right now he is having drinks and just called and asked me to come up and join them, I had to say no.
Jim just got a call from his best friend from high school. He is in town and he has only seen him once that I know of in about the last 20 years. I feel so bad because he is coming over and I am like O crap!!! Jim is excited to see his friend and I am the fuddy duddy that wants to rain on his parade.....my house is dirty, I have dust everywhere. I have to take a shower!!!!

I used to not be like this!! I HATE THAT THIS STINKING DISEASE HAS CHANGED ME SO MUCH!!!!! I DON'T LIKE WHAT IT HAS DONE TO ME!!!!!!

Back to reality

2010-06-24T08:33:00.002-04:00

MY MOM IS HOME!!!
Wow it is hot outside.....I usually love it when it is hot outside but not this hot and humid! It stops me from doing yard work and I have so much to do. Being gone for so long, everything either died or has just grown over. I wish I could afford to pay someone to just come in and help me get it cleaned up again. I had it looking so good and I just don't think I have the energy or the strength to do it all again. That really depresses me!!! I love my yard looking nice, that is one of my favorite things. I love to be able to pull up to my house and think WOW, that is ours!!! Our yard looks great!!! We also have some work to do on the front of our house, but now that things are getting back to normal hopefully we can get them done. One thing at a time.....
I had so many things on my to do list this week....well that kinda went out the window. I got some of the little things done but as for cleaning my house, ironing and working in the yard, which I really wanted to do. Forget it!! I hate that my body won't let me!!!!
I mean Tuesday I COULDN'T get out of bed until about 1:00. Yes, I said COULDN'T not didn't. Anyone with fibro/cfs knows and understands exactly what I mean by that!!!

I woke up this morning about 4 am and couldn't move my stomach was hurting so bad!! It hurt to breath or even turn. I just layed there...I fell back to sleep but kept waking up...not a good nights sleep. It feels as though my insides are in knots, like my colon is all twisted and if I move it aggravates it. I hate how my stomach controls my whole life!!!!! This is why I have lost weight, I don't want to eat anything!!! Everyone gives me a hard time because I eat certain foods but I know what doesn't bother me!!! I want to eat healthy but at the same time, I don't want to be in pain!!!! I have lost a little over 20 pounds and want to lose another 13.....I CAN DO IT!!!!

My friends that read this that have fibro, please let me know how you deal with the emotional toll this all takes on you??? I mean, I have been thinking about how I have changed personality wise because of this disease, how my memory doesn't work. I used to spell really well and I am now having to ask everyone how to spell words on a daily basis. If I am writing or typing something it takes me twice as long to do because my brain just doesn't focus like it should.
I have just changed so much........not all bad though :)

vacation worth it??

2010-06-22T11:34:00.002-04:00

I am laying here feeling like poopoo, my body feels like dead weight, every muscle aches, my nose is stuffy and my chest is congested. Wait, I have the flu!!! Or a really bad summer cold and it sucks!!!!!!!!!!!
I started feeling sick while on vacation. Thursday of last week I started with a sore throat then it just got worse....BUT, MY VACATION WAS WORTH IT!!!!!!!!!!!!

Laying out in the sun, seeing the sights, eating the food :) drinking the rum and beer :)

My first morning there was kinda tough for me. Everyone got up and went on a 3 hour outing and I had to stay behind because my body just wouldn't allow me to move....that sucked!!!

OK I am tired and just want to lay here.....

thoughts

2010-06-09T09:32:00.002-04:00

I am not sure where I am going to go with this, but I usually don't do I ?? I woke up this morning thinking about this past month (my mom has been in the hosp a month today) and everything that has gone on with my parents. The old saying if I knew then what I know now really applies to my life. I like to THINK I was your typical teenager and did all the things I shouldn't and that my mom and I didn't get along like moms and daughter are not supposed to. Of course I know that is not how I was supposed to be now because my 18 year old daughter and I get along great. She doesn't do 1/2 of the things I used to do. ( i am really praying she doesn't do any of the things I did)
I think back to how my teenage years were between me and my mom and how they have been since I have been an adult and I thank GOD for allowing me to grow up and be alot like my mom. My mom is an awesome woman and I consider it an honor to be like her. This past month I probably could have stayed home in Greensboro more. Actually NO I couldn't have because my mom wanted me here, she asked me to be here and that is where I was going to be!!! I know my dad could handle everything here with my mom. I just needed to know my mom was and is ok. Being 4 hours away is so hard for me to do and with everything being so up and down????? I am sure I have driven my dad crazy being here but yet he has let me come back every time. He does love me...haha.
Actually one of my favorite moments of this past month happened this past week. My dad and I were driving home from the hosp and were talking about all the places he has lived while in the air force, which were his favorite and his least favorite. I did not know my dad lived in Mississippi? I did not know my dad was in the air force twice? I listened to stories about when he lived in Korea and Thailand, it was really cool.
I am leaving to go home tomorrow and am so excited to be going home. For several reasons.....1.MY MOM IS GOING TO BE OK AND I NOW IT!!!! 2. I miss my husband soooo much!! 3. I am going to Porto Rico on Saturday! 4. I can't wait to go back to the Y 5. Want to start walking again and 6. I want to get back into my garden/flowers.
Pain wise yesterday I got alot of rest in and it really helped, my body needed it. This morning when I woke I was actually able to get out of bed and not want to crawl to my meds. Going to get some sun today and that will feel good :)

2010-06-07T19:45:00.002-04:00

Woke this morning feeling like every nerve in my body was on fire and hurt like I have not in awhile. Of course I say that more than I realize don't I? I would love to wake one morning and not have to lay there for the first hour praying for the pain to go away. When everyone else is asleep I am awake wondering how my day is going to be???
I don't remember the last time I had a really good nights sleep. I think when I was taking sleeping pills, which I might see if I can get a presription again for. I lay there with my eyes closed and don't want to move!! I wish I could hire someone to get my meds for me and bring them to me with a drink, that way I didn't have to get up at all. I say all the time that I wouldn't wish this on anyone but at the same I kinda wish some people could just experience it for just a week. People with fibro always hate to hear, BUT YOU DON'T LOOK SICK!! Or people don't say it but you know there are the one's that are thinking it.....just 1 week in my hell!!!!

My mom is doing really good!! I spent the day at the hosp. with my dad. (until 4:00) trying to get info on whether my mom is going to be able to go back up to the 4th floor for rehab or not. Yes, she is but not until tomorrow or Wednesday at the latest. I was really praying for today because she hates the room she is in. It is a place that she just has bad vibes about and has ever since they put her there. My dad has stayed the last 2 night with her and I am going to be staying there tonight, a sleepover :)
I won't forget my meds for sure.

2010-06-06T19:05:00.005-04:00

I wish I knew where to even begin with this.....the past 3 1/2 weeks have been so stressful and so long. In a quick nut shell, my mom's hip surgery turned into her going into the ICU due to heart and breathing problems. (she is doing awesome now) I don't ever want to be that close to losing my mom again!!! She is still in the hosp. and will be for about another week for rehab. You can imagine how weak she is after her surgery and then not moving for 3 weeks, she has not even had a chance to really try out her new hip. While all this has been going on we have found out that my mom has an enlarged heart and that 1/3 of it is not working. Her diabetes has gotten worse and she now has a new doctor that is working on getting her meds under control. I really believe her old doctor just kept medicating her and making her worse. My mom liked the doctor and trusted him, I really don't think he had her best interest at heart. (no pun intended) To make a long story longer, since my mom had her surgery May 12th I have been home to Greensboro a total of maybe 6 days. I am very blessed and love my parents very much. I have written about them several times in my blog and would do anything for either of them. I am here to help /support my mom and dad in any way I can!!

The next part of this I need to make a statement.....as I have said before, this is my blog and I write for me! I write for therapy, to help me when I am in pain, when I need to vent, when I am sad, frustrated or whatever. I deal with severe pain everyday 24/7 and if writing things clears my mind then thats helps a little!!
What I write about next is very personal and about my family...keep in mind, I love my family. (i mean my brothers, here). This has been a very emotional couple weeks for me and weeks that I will not allow to continue or allow to bother me. I have way to many more important things to worry about! My husband, parents, daughter and my heath!!!
I do love my brothers......
There are good and bad things that happen when GOD changes things up like this. My oldest brother, Steve came in from Tenn and he has not been here for several years. Then he came back again this weekend with his wife Claire and it was really really nice. I know there has been alot of distance between my parents and Steve these past years (just life) I AM ALL ABOUT FAMILY and am working on getting Steve to call more often. I know he thinks about my parents it is just picking up the phone to call. Claire is a very unique and special person......watching her talk to my mom today, tend to her hands and feet with pure love, I cannot begin to explain how that made me feel! Claire was all about my mom today and that is all that mattered. A side note....Claire used to be a nurse years ago and after watching her today I would loved to have had her any time!!!! Jim said it best.....she showed her love for my brother in the love she showed my mother!!!!

My other brother Robert came back from Iraq and it has been a kinda hell that I really didn't think I would ever have to deal with. I used to think that Robert and I were close and boy was I way off. Somehow, somewhere thru the years he changed and forgot to tell me. I don't like the way he changed. He has always been quick to temper but when did he become so, I don't know??? can't explain it. He wants to say it was Iraq but it was before that?? I used to look up to Robert, admire him and be so proud to be his sister. When you hear of having family fights that break up brothers and sisters well this is one of those. I need to back up again....my brothers wife and my nephew have lived with my parents since Christmas. Her name is Uliana and she is from Kirghistan (sp) anyway my brother as I said was working in Iraq so she wanted to stay here so my parents could see Eddie. Anyway her and I DO NOT see eye to eye at all and that is being nice. Well things escalated and I will leave it at that!!! What breaks my heart is I promised my mom when she went in the hosp. that I would do my best to get along with Uliana ( she knows how I feel about her) and I couldn't keep that promise. I am not telling my mom anything that happened, she doesn't need to know..... well I am still at my parents house. I have promised my dad that I will take the high road and I am!!
As for my heath it sucks!!!! I have been taking more pain meds daily and am so tired.I have been having headaches on a daily basis too, which I usually only get a couple a month. I have lost a tooth too!!!
I have to find new meds to take, I want my life back....
I could have gone home today but I want to make sure my mom is good with where she goes for rehab. Plus everyone has busy lives, I can visit with her as well as my dad. Tonight I loved staying and watching part of a movie with her and my dad. (my dad is staying the night with her) I was going to leave and my mom asked me to lay in the bed with her and stay awhile....you couldn't get me to leave then!!!

THIS SATURDAY JIM AND I ARE GOING ON VACATION TO PORTO RICO :)

2010-05-26T09:12:00.002-04:00

I am laying here and all I can do is cry and blog right now. I am so mad I can't stand it right now!!! My mom and dad need me and I can't drive to the beach right now! My body won't let me!! My mom is not doing well...it has been 2 weeks since her surgery and she is going backwards now forwards in getting better. I was really scared talking to her on the phone yesterday. She would be talking about stuff that made no sense and then stop talking and I would be yelling to her and she would not answer me...then come back and be making no sense again. This also happened when my dad was at the hosp and it scared him too. He is worried about my mom.
I plan on leaving to go back today to speak with the doctors and find out what is going on...BUT, my dad called me this morning first thing and I heard it in his voice, he is scared. My mom woke up dizzy and her speech is back to like it was yesterday. Something is not right!!!!! I want to leave NOW and I CAN'T!!! MY BODY WON'T LET ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I hurt and I can't get out of bed!!! I need the strength to drive 4 hours and be there for my mom and dad!!!!!! I am so mad............I am also being sad and selfish because there is really no one I can call and talk to about how I am feeling right now...I don't want to bother anyone!!! I called Jim and he is wonderful but he is at work and I don't need to be bothering him....I so love him!!!!
I hate, hate having fibro!!!!!! I want to get up and go right now.......God, please give me strength!!!!

the esland

2010-05-25T10:44:00.002-04:00

People think I am kidding when I say I want to sale everything and move to the beach somewhere with Jim. It has to be a beach in the Caribbean though or the keys....somewhere where it is sunny and warm year round!!!

Right now it is cloudy and dreary outside and I am inside feeling like crap!! I didn't sleep well last night and I have not slept well in about a week. I have no energy, my stomach is hurting for the first time in weeks, and I hurt!!! I have a headache...so what am I going to do???? I am going to make myself get up! Somehow....if I can quit falling asleep :(

You can't tell me I am not strong......try living in my shoes for a month!! Try getting out of bed and living my life when when you don't want to get up....that takes real strength!!!!!

stressful couple weeks

2010-05-24T21:03:00.002-04:00

Anyone that knows anything about fibro knows that stress plays a huge part in how we feel. Well I think I have handled the past week and a half pretty darn well. My mother had hip replacement surgery and I have spent almost a week in Charleston helping my dad and then came back home for a couple days then drove to the beach to help my dad and be with my mom also. Right now my mom is in rehab and working on gaining her strength back. She has had some intestinal problems and that has really caused her some problems. I am going back again this week because I have some other concerns that I am talking to the head nurse about and want to have a conversation with her doctor. They are trying to tell me that it is because she is in the hosp, recovery, blah, blah....I know my mom and I know there is something different. Until I am satisfied with the answers I get, I will not let it drop. I want my mom to be as good as new!!

My body has has been fighting against me the whole time and I won't give in. At least I am trying my best. My legs have been hurting more than usual and my hips are starting to worry me. They wake me up at night when ever I role over on them. It used to be just the right one and now it is both. I am going to see about getting cortisone shots......Just touching them makes me scream....I can't get comfortable when I am sitting for any length of time. I am always moving. My leg pain on a scale of 1 - 10 right now is about a 14 and my hips are about a 15. I am laying here and the slightest move shoots pain!!!!

I have been trying to get into see a skin doctor for over 3 months now....my arms have got what looks like acne all over it...it is not your typical bumps you see on the tops of peoples arms. It started out as just a few and now it is all over my arms, tops and bottoms, all around!! It is now spreading to my chest some....my appointment is not until July but I keep calling to see if they have any cancellations. When I go to the beach this week I am going to try and get into the skin doctor my daughter has been to. I have got to get someone to look at this!!!! I hate for anyone to touch my skin, it is gross and very ugly!!! My skin feels like a brillo pad!!!! I have switched soaps trying to see if that is what it is...??????

Time for bed, can't keep my eyes open...:)

update

2010-05-18T16:01:00.003-04:00

Since my post yesterday I have spoken to my dad and I will be going to the beach to help with my mom. She really doesn't need my help with much but I want to be there to support her and my dad. I want to make sure my dad is taking care of himself...:) I am going to do some cleaning and make sure all her plants are watered! I have promised everyone that I will take my time getting there and that if I can't do it, I won't!!!

The rehab place that my mom is staying at is very nice and my mom likes it there...very sunny and open...

I have also promised that I will not work so much that I pay for it when I get home! I know my limitations...I know my dad worries about my health and for that I love him even more, if that is even possible!!

I hate having fibro!!!! Before I got sick I could have gone home at anytime, cleaned the entire house from top to bottom and still gone out to dinner with friends. Now I have to pray that when I wake up I can move! I hate that the disease rules my life!!! And has robbed me of so much....yet in a strange way it has given me so much.

Please keep me in your prayers....I want to be able to do so much for my parents, they are the best :) and I love them!

why i hate fibro

2010-05-17T20:40:00.003-04:00

Today I discovered another reason I hate having fibro, it stops me from seeing my family at a moments notice! My mother had surgery last Wednesday and Jim and I went down to Charleston to be with her and my dad. I stayed with her until Sunday. Jim came up on Friday night about midnight and then we left on Sunday. My mother is as beautiful as ever. At first I was really worried if I may be honest about my mom, scared really! It took awhile for the anthistesia(sp) to wear off and it was causing my mom to be a little "out of her head" when it came to talking to her. I don't mean that in a bad way!!!!!! She kept nodding off and on and not making any sense when she talked.
When Jim and I left on Sunday it was harder than I thought it would be....I hated to leave my mom. I want to be there to help take care of her and I am really not needed, he has enough help. At least that is what my dad says!!!! Those words hurt more than my dad realizes..

My mom was moved today to a rehab hosp much closer to their home. Instead of being 2 hours away, she is now only 20 minutes from home. I am so happy for both of my parents. At the same time I am feeling completely hurt and unwanted!! To be honest again my dad has my sister in law living at the house with my 4 year old nephew (while my brother is over sea's...non military) and he tells me she can handle everything!! That really sucks to hear..but I won't even go into that on here!!!

This really isn't about my fibro but I needed to vent.....of course the stress is doing wonders for me..:)

Jim is going to Texas on Wednesday and I had actually convinced him that I would be ok driving to the beach by myself to spend the weekend with my dad to help with the house....was told that there is no need for me to be there!! Sometimes just being there is all I want!!! I want to feel like I am being helpful. My parents have always been there for me...I like to help them where I can. Like I said even if it is getting lunch for my mom, washing clothes, bringing her flowers or just making her smile..:) I know I could do this!!!!! Since getting sick just getting up and going is not very easy for me in fact it is darn right scary and very tiring but this I wanted to do!! I felt like I could be a big help even though I am limited in what all I can do. I was excited about BEING able to do this or at least willing to try!! It might have taken me an hour or so longer to get there but I was going to this! I WAS NOT GOING TO LET MY SICKNESS/FIBRO STOP ME FROM BEING THERE TO HELP MY MOM!! Instead my dad told me he didn't need me there. There really wasn't anything for me to do.....I could find alot of things to do that would have made my mom very happy! CLEAN ROOMS, WORK IN THE GARDEN, WATER HER AFRICAN VIOLETS. I know how to clean...I have seen how other people clean, how they pick up....I know my mom would have loved what she came home to....

Can you tell I am hurt? But just as everything else.....O never mind!!!!!!!!!!

water

2010-05-14T08:03:00.002-04:00

All I have to really say is drink lots of water.....it is so hard to keep a normal schedule when your mom is in the hospital and I have been trying but doing a lousy job of it! I am going to walk on the tread mill though as soon as I am done typing this!!

Eating right is such a huge deal for me and I have really been wanting to do just that but again being out of town, mom in the hospital, staying in a hotel it is harder than I thought. Why, STRESS is the #1 reason!!!! But my mom is doing ok and will be able to walk soon with no pain so it will be all worth it!! So what am I complaining about???

I just hate that I feel like crap!!!! But I am not saying anything to my parents, that is what I have my blog for....to vent!!! OOPS, except I know my dad will read this one day.....I love you daddy and would do anything in the world for you and mom!!!!

Well gotta go get ready, I want to see my mom....:)

DRINK WATER...

mornings

2010-05-11T10:12:00.002-04:00

I waste so much of my day just trying to get going!! I wake up and feel worse than when I went to bed....my body feels as though it has been through the ringer!!! I am not being lazy!!! It is not just a matter of...get up, get going!!! I wish it was that easy!!!!
What really makes me mad and actually sick to my stomach is I have so much to do today!! I have to get going and I am still laying here. My body is a dead weight!!!!
People don't see this part of my life.....

When I get back from Charleston I am getting back to a early bedtime. I have been going to bed later and of course I am not sleeping well so the 2 together are not good for me. I wake several times a night either because my stomach is bothering me, my hips are hurting me, my shoulders are hurting or I am just awake....O the joys of fibro!!! Usually when Jim wakes in the morning I am awake enough to stay awake and talk to him. The past week I can't even lift my head when he gets up.....

OK so enough of that......I am setting a goal here to lose 9 pounds in a month!! I don't honestly think I will do it but I am going to try!!!!! I know how hard it will be and am willing to try!!!!! Wish me luck...:)
Just fell asleep for a few minutes....

It is raining, so much for walking outside today!! I have to go to the Y!!!! I have not been the best about that lately because...walking outside is much more fun!!! I am taking my hand weights with me to the hotel and my workout tape ...I have the best intentions!!!

I am going to try and take on my day...I am taking my laptop with me so I will be blogging while my mom is in the hospital. PLEASE INCLUDE MY MOM IN YOUR PRAYERS...AND MY DAD TOO!

What did I eat???

2010-05-10T09:33:00.004-04:00

I am going to weigh less than my goal weight if my stomach problems continue like this....

For about a week or so my stomach has been feeling pretty good!!! Yea, I had almost forgot what that felt like!! I mean as far as my IBS goes, it has gotten a little better. I have really been increasing the amount of fiber I eat. Plus I am taking fiber tabs daily and using Miralax 2 times daily. (trust me, you can put this in water and you really cannot tell it is in there. ) I was putting it in juice but don't need/want the extra calories.

I am back to my stomach hurting and being all bloated!!! I have eaten something within the past week that is just killing me!! The bad part is, it could be something from several days ago and just catching up to me or something from today. But then that would mean it is several things because it has been hurting everyday for about a week. I do know that I am going to stop eating broccoli with a veggie dip, kraft barb q sauce....that is the only thing I can think of that has been really different. I did have maybe 2 bites of KFC fried chicken a week ago today. I just had to taste it but as soon as I started eating it I knew I would regret it!! But that was a week ago. I really think today is from the barb q sauce! I feel as though someone has taken a bike pump and "pumped" me up!! It is no fun and it hurts and it is going no where. I am so tired and really need to walk but so don't want to!! But I know I need to....it would probably help!!!

I find it interesting how my stomach is really bothering me and I am feeling like poopoo!! I am tired, my legs are hurting, my feet hurt....let's put it this way...I don't want to do yard work!!!

That should tell you how bad I am feeling. I love doing yard work, it is my way of distressing and I just love making things look pretty. I always want to do yard work, even if it is just sweeping off the sidewalk....not today though..

Jim and I got to watch a beautiful red cardinal take a bath yesterday while the sprinkler was on....it was GOD at work....we hated when it left...

Just tried eating supper and didn't eat very much because I just don't want to eat alot....I feel like I am about 7 months prego...it was really good though. Jim really liked it which makes me very happy!! He ate a whole plate.......The only good thing is that with me losing 16/17 pounds it helps me not feel as bad as I did with the bloating as I did when the weight was on me. Does that makes sense??? I really want to lose 9 more pounds before we go to Puerto Rico in June. My goal is to loose a total of 15 more pounds!! I know it is going to be hard but I really want to do it!!! What does help is having Jim's support..:)
I am going to be walking 3 miles in the morning, at least I hope I can and will be!!! That would be a great start to my day, help my stomach and get me going....Fibro can and does rule my days!!! I hate to make plans because I hate to brake them.

The past week my mornings have been so fibro mornings!! Waking up to every nerve in my body hurting...I hate to move!! It is like I wake up but it takes me about 2/3 hours to actually become functional. I had about 2 weeks that were pretty good and them BAM!! I HAVE THIS FOR THE REST OF MY LIFE, THERE IS NO CURE!! I WILL BE IN PAIN FOR THE REST OF MY LIFE....I MAY HAVE A FEW GOOD DAYS AND MANY BAD DAYS!! MY LIFE HAS BEEN CHANGED FOREVER...

Tonight my husband made a comment about how I don't like to have fun like I used too, another thing that fibro has taken from me. I don't like ice cold hands on me, my body really doesn't like cold..:( He really wasn't meaning to be ugly, he was playing around but it did hurt)

I am in alot of pain and have pretty much done much of nothing today...with all this said, please say a prayer for my mom. This Wednesday my mom is going into MUSC in Charleston SC for hip replacement surgery. My mother has a few medical problems and I know that everything will be ok but I still would like to know everyone is praying for her. Can never have to any angels....My wish is that my mom will have this surgery and be able to walk without pain!!
I complain about pain and how I am feeling and my mom hardly ever complains. I wish I could be more like her...my wish is for her to be pain free!!! I love my mom!!!!!

Ok I have rambled again and am now done....

Happy Mothers Day

2010-05-09T18:28:00.003-04:00

Happy Mothers Day to all my friends that are mothers!!!! It is one of the hardest if not hardest jobs ever and one of the most under rated jobs there is. When we are little we take our own mothers for granted and the when we grow up we wonder how did they ever do it all???

My own mother and I had some very very rocky years and I thank the good Lord above for how close we are now! I have learned so much from her and am so much like her it can be scary some days.....my mom loves to garden, I love to garden, my mom loves to craft, I love to craft! I mean for years growing up all I ever knew was fabric and fabric stores. My mom can sew just about anything if not she will figure it out. For goodness sake before I got sick I managed a JO-ANN Fabric and Craft store. Me, that is the last place I thought I would ever work! I knew nothing about fabric!!! Trust me I learned!! (they hired me because I can manage, 15 years as a district manager) What is really scary......I liked working there. I learned about crafts I had never heard of, fabric I loved and made a friend for life!! MaryEllen is a very special lady who saw me through some really bad days and is just a good friend!!

I understand my mom soooo much more now....I love you MOM!!!!

*************************************************************************************

This morning I woke up remembering that I have Fibro! I felt like the tv commercial say I should except it was alot worse. I had to make myself get out of bed and practically stumble down the stairs to get my meds and juice. I really wanted to go to church or I would have stayed in bed!! Anytime I want to go anywhere early in the day, I have to get up at least 2/3 hours early to take my meds. Then I hope they work enough for me to function. Like right now, took them this afternoon but am feeling like a vegetable and the only part of my body that I am moving is my fingers. Everything else just kinda wants to sit there!!! I feel like every nerve in my body is on fire and in pain. After church, Jim dropped me off and he took his mom to lunch. I stayed home and layed down...:)
Church service was great today....
I am skipping around here...
That is how my brain works anymore...I can't stand loud noises. I can't spell worth a darn. I used to be able to spell really well and now I would say that I have to check at least several words a day. It is so frustrating!!! Fibro is not only taking my body but my mind as well.....my speech the past several weeks has gotten alot worse. I am slurring really bad some days and can't get words out. It is so frustrating, My words run all over themselves......it actually worries me some days!!!

Tired.........

Anyway, waking up is no fun!! My body feels like it belongs to someone else...it was really frustrating at the beach with our friends, they see me and they think I am fine. Just because on the outside I look o.k.. I could walk around with this sour look on my face and show how much pain I am in but I am so tired of doing that. I just hate that some of my friends don't understand. I know I shouldn't let it bother me or care what other people think but I do. I am on disability and am not proud of it but I do know that I need it!!!!!! If I could work I would!! If I could have more than a couple good days in a row I would happily work!!! The weather is warmer so that is on my side right now and does help a little :) .....when the weather is cold, rainy, damp, humid forget it!!!!!!!!!!!!!!!!!! My body just wants to shut down!! I hurt so bad but am getting so good at not showing it to the outside world. Or it could be because I stopped going into the outside world so much....

Just felt like rambling....

I love my daughter and I thank GOD for allowing me the privalge of being her mom!!! I am so proud of her.....
Thanks to my hubby for making this a special day....

Good days vs Bad days

2010-05-04T09:25:00.002-04:00

This past weekend was a pretty good weekend for me, YEA!! It was kinda sad though....It was our bike weekend and I didn't ride the bike down with my husband. This is the first year I did not ride down, me and my friend Melissa drove down a couple days early. That part was nice because I got to get a few extra days of sun and got to spend some one on one girl time. I can ride the bike for short distances but on anything over 30/45 minutes I fall asleep and I start to really hurt. This breaks my heart because this is one thing that Jim and I love to do together. Our first so called date was on the Harley....we have many happy memories on the bike!!!!

Jim and I have had some pretty tough financial times since this thing called fibromyalgia decided to take over my body. We have had to give up alot and several times he has said he would sale the Harley and I have ALWAYS said NO!! Being able to get on the bike and just ride, there is no way to explain what it does for the soul!! Plus my husband looks so freaking sexy on the bike and in his leathers!! :) Being able to ride the Harley is the best therapy!!! The feeling of the wind and the sun...being able to hold onto my husband. Having him reach down and rub my leg or just wrap his arm around my leg in a possessive way....I may not be able to ride long distances but I can still ride!!!!

I don't care what any doctors say....the weather does make a difference to a person with fibro!!! This past weekend the sun was shining and it was nice and warm, I was feeling pretty good. I woke up extra early ( 5ish) so I could take my meds and that way when everyone else was waking up I would be able to get around. The afternoons I would get tired and want to take a nap, a couple of days my neck, shoulders and feet hurt but I was able to get thru it! The really cool part is.......my IBS was not a problem!!!!! In fact my stomach was wonderful and I was very regular!!!!!! The best it has been in over a year!! ( of course since I have been back home, it is out of whack again)

Got home and the weather on Monday was cloudy and rainy. I felt like crap! I hurt, I wanted to stay in bed ALL day!! It took me all day to just the simplest things......

We need to retire to the beach :)

feeling the pressure - type A personality

2010-04-26T08:31:00.002-04:00

First let me say...anyone that says that the weather does not play a part in how we feel is full of crap...( wait, that's me, hahaha) anyway, yesterday morning the weather was yucky and I felt it!!! Really bad 1/2 of my day!!!

I am feeling the pressure and hate that I am still this way...what am I talking about?? My type A personality!!

I am going out of town tomorrow for the rest of the week for our bike week at the beach...for those that don't know me what I mean it is Harley week not a bicycle week. My dear friends have a beach house at Emerald Isle and me and one other friend are going down 1 day early to get things ready. In a way that sucks because I won't be riding the bike down with my husband....this will be the first! The last time we rode down I kept falling asleep and the thought of me falling off while he is going at fast rate of speed is not something I want to do!! In a way this will be good because me and Melissa can carry everything down, get the house ready and have a night to just relax....:) I WILL BE RIDING ONCE WE ARE AT THE BEACH!

Back to the stressed part....I have 1 day to get sooooo much done before I leave. clean the house, wash clothes, pack my stuff and Jim's, work in the yard, work on my to do list......I feel so tense....I know I should not be blogging but I gave myself until 9:00 to get this done and then I am off to ironing....not a day to let my pain get in the way. I thank you GOD for this morning not being like yesterday morning and afternoon. If it was I would be crying my eyes out and getting NOTHING done!

This morning I was talking to my husband about how fibro makes your body feel...every nerve in your body hurts! I never knew my feet and calves could hurt so bad... It is always fun being out of town with friends and having them see me get up every morning, especially if it is a BAD morning!! Of course I will be at the beach which means I will hopefully have some good days.

Well it is 9:00 gotta go start my day.....of course I say all this and if I get 1 thing done then I am doing good. That is where the stress part really comes in.....having all this stuff I want to get done and knowing that I won't get even a small portion of it done! That is the wonderful world of fibro and cfs!!! I could be fine right now and in 10 minutes laying down because I can't even walk across my bedroom....the story of my life!

But....I am going to enjoy the beach!!! I can just lay there and soak up the sun...:)

Just some more random babbling

2010-04-25T13:20:00.003-04:00

It has been awhile since I have felt like blogging so this might be a little long winded.
First I need to say again how wonderful my husband is.....things have been a little stressed and crazy here at our house, I know what is new? But no matter what is going on in our lives when it comes to me being "in alot of pain" or "feeling really bad", Jim always puts me first. We can be at odds with each other and the world around us but he ALWAYS makes sure I am ok. Every wife if they are completely honest has things they want to change about their husbands, things the don't like, things they complain about, nag about and yes I do ALL those things!! Then I take a step back and I thank GOD for giving me a man that truly loves me....!!!! ok my husband just came to check on me...how sweet and loving but then had to burb after eating garlic guacamole!!!

I just wanted to be able to go to church this morning and be on time. As it was I had to wait until 10 for CVS to open because I had run out of one of my meds and of all mornings to need it, this was one of those mornings. This morning I knew I had fibromyalgia, I woke in a full flare and no amount of being positive, exercise, eating right was going to help. The only thing that was going to help me was medicine!! My mother, who I love and have an awesome relationship with takes I would say at least 20 pills a day, ( I could be off a few but I am close) anyway I always said I didn't want to take alot of pills and sure enough I am up to 12 already. Now keep in mind, I am a person that had a hard time taking my birth control pills because I couldn't swallow them and most women know they are very tiny!! Thank goodness for the patch and IUD...:) Well I made it to church, not looking to good mind you. Rough looking would be putting it mildly and nicely...I had to leave after about 20 minutes, just couldn't do it. I hated to drive home but the thought of sitting there was worse. I love listening to GODS word but I wasn't really hearing it because I hurt and just wanted to curl up and sleep.

Now to the TV commercials...first let me say some have gotten a little better and I mean only a tiny tiny bit better about talking about fibro. Anyway, this morning I was thinking they should use me and they way I look and feel for a real look at how a person with fibro really feels and looks....not working in a dress shop or a bakery.....If my fibro made me feel the way the ladies look in the commercials then maybe I could be more positive......

Ever have a haircut that affects your whole life? Usually it is when you are a child right? A bad perm, a bowl cut??? Not when you are 46 years old.....right??
Well I now considering going super short or just wearing my hair in a messy very short ponytail for the next 6 months!!! Messy ponytail because the layers will only allow that....super short because my hair is so screwed up!!!!!!!!!!!!!! Not what I wanted....I have NO idea what to do with my hair....talk about feeling ugly!! I am going to call my hairdresser and figure this out...I love her to pieces as a person but right now I am just not happy! She is really good at what she does, I don't know where her brain was????? There will be NO pictures of me for awhile....

Still working on this IBS thingy....I do believe that my stomach problems are tied into some of my problems and losing weight could be an extra benefit!!! I am now going no candy...unless it is sugar free!!! My sugar intake has been cut down in half this past month and I don't know the last time I had a soda was. I am going to really be watching MSG...that is going to be a hard one since it is in so much. Wish me luck...

MAY 12 IS NATIONAL FIBROMYALGIA DAY.....

What drives me nuts....yesterday I was able to get up at the crack of dawn and go to an estate sale. I woke up feeling tired, and somewhat achy but it was a complete 360 of this morning! I never know from day to day how I am going to feel...

My life in a nut shell....I just had to call a friend and she new I had left church early. Well she asked how I was feeling and I said well, I am alive so that is a good thing. And then she chuckled and said is it the fibro, ibs, bladder or your back? She was by NO means being ugly!! I was laughing with her...It is amazing how many things are tied into this life changing disease called Fibro.....It is not just 1 thing but at least a handful!!! That is another reason for my taking so many pills.....so many different things!! I hate being in pain, my legs, feet, back, neck, shoulders, my stomach. I used to be such a happy person, loved to do things, go places....now I am such a home body!!

I use to never leave the house without makeup, my hair being done, dressed right now I am lucky if I am not wearing workout clothes when I leave the house. I use to feel so good about my looks!!! I want to feel pretty again!!!!

Ok I am now falling asleep and am getting hungry....wish me luck, I am going in search of something to eat that my stomach can handle...I hope!

short blog

2010-04-19T10:04:00.002-04:00

This is going to be a short blog to just let you know I am alive....my body feels like it has been hit by a truck! My legs are and arms feel very weak and it takes every ounce of energy I have to use them right now. Most of last week I was out of bed by 8 and ready to go, full of energy. HA!!! Not now!!! I am still feeling positive that the magnesium I am taking is going to help....
My legs feel like they are on fire too.....
My IBS is not as bad as it was but it is still pretty bad!!! The magnesium is not working like I was hoping it would....:( :( My stomach is in alot of pain right now...
I have not blogged in a while because I was taking a break from complaining, I am trying to be positive. It is not very easy!!!!
I just REALLY don't like fibro.....i just don't feel good and don't want to do anything!!!
ok i just don't feel like typing so i will do this later...

tired

2010-04-07T20:15:00.005-04:00

I am so tired of feeling like crap, no pun intended either! I am so tired of my life being put on hold because I don't want to be around people! I am so tired of my husband going to bible study without me, living OUR life by himself! I am so tired of the pain, the intense crying, the swollen eyes, swollen stomach, hurt back, no energy, JUST FEELING LIKE S--T!!!!!!!!!!!!

I want my life back!!!! I love the life I have now, I just want to live it and enjoy it!!!!! There are days I just wander, WHY ME???? What did I do to deserve all this pain and misery??? Then I remember, I have a husband who loves me with ALL his heart and I love him with all my heart! I hate what this is doing to him....it is so not fair to him..... I have a daughter who I adore and love with my every breath....I want to be there for her......I don't know what I am saying??? I just know that I am so tired of hurting and not feeling like me! I will have a day here and there and then weeks where...BAMM, it smacks me in the face again and says, hey you....you need to feel like s--t!! You are not supposed to feel good!

I see happy people and you can tell by looking at them that they are feeling ok on the inside....i used to feel like that!!!!

I really want that again!!!!! I am sooooo tired and don't know if I can keep fighting it anymore!!!
I don't get things done like I used too....it is taking me longer and longer to do things. I have a load of laundry that has been in the washer since yesterday and it is still in there.....WHY THE FRIG IS IT STILL IN THERE??????????????? It is just a load of laundry....do it, finish it!!!! I hate myself right about now!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I actually have a rug in my living room that I mooved today to vacuum and clean and it is still turned sideways untouched.....I just walked over it!!!! Never even straightened it or vacuumed......so not like me......

It has to get better, right??????

pain meds???/

2010-04-06T10:18:00.002-04:00

OK so this morning I was not going to take my pain meds but have changed my mind! I am hurting and just not feeling so hot. I wonder though how much of the not feeling hot is from not taking the pain meds? I mean my pain is very very real but the feeling funky is that the lack of pain meds or the firbo? If I take my pain meds in the morning and then not in the afternoon, I don't get that funky feeling. So I don't think it is the lack of pain meds, just the fibro attacking ALL my nerve endings because that is what is bothering me!! Make any sense? Well to me it does......I am also really trying to work on my IBS and I know that my pain meds only make it worse so I am working on putting everything into my body to counteract the meds.....something has to give!!!! Anyone have some super rich fiber idea's for me....?????
My stomach is like one giant gas bubble right now......so much pain!!!

I so wish I had my get up and go back.....I keep saying that I could deal with my pain if I just had the energy back...I got up this morning with Jim about 7;30, ate a few pieces of delicious watermelon (thank you sooooo much Sue) I mean it is the best I have had in years!!! Checked email, even ironed some of Jim's shirts and now I am so freakin worn out!! My arms are even tired and just the thought of walking is wearing me out.....I have so much I want to get done...I want to cry!! I know, you read this and think.....just leave it! It is easier said than done for me. I have given up / changed so much of how I used to be when it comes to cleaning but when my house "feels" dirty to me, I just can't stand it!!! I go to bed at night with the big intentions, my to do list and then the next day comes and BOOM, my body has it's own plans....
I WILL GET MY BEDROOM CLEANED TODAY AND THE SMALL PILE OF IRONING WILL BE GONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I do want to spend and hour laying out in the back yard today also......the good part is...THAT I CAN DO!!!! ( my poor neighbors)

Jim and I went for a walk last night, it was a really really nice walk.....looking forward to many more! The night time walks are so relaxing and I love that we are going to make them longer than we normally walk...ANYONE WANT A 3 YEAR OLD BOXER DOG??? She is beautiful, lovable, great with people.........

Well, I think my meds have started to kick in so I am going to try this day thing all over again!!!
I might blog again tonight, really want to talk about some deep thinking thoughts I have been having.....

Rambling Thoughts

2010-04-05T10:19:00.002-04:00

I have just spent the past 30 minutes reading other peoples blogs.....and have decided that mine is just that....my blog!!
My blog does not have fancy pictures all over it, cool sayings....just my rambling thoughts. (actually, I don't know how to do that kinda stuff...haha) but if I did I still don't think I would have it. I just want to say what is on my mind. By writing, it helps keep me sane most days and is just a great way for me to get my anger, frustrations, sadness, and all the good things I have to say out!!!!!

This weekend had it's ups and downs. Friday was a copperhead snake day in my back yard. Yes....imagine me and a copper head snake having it out...I had a rake...it was so funny! I could have used the shovel I had next to the rake but O no, not my first thought! Anyway the really funny part is, I wrangled it up and got it under a flowerpot. I wasn't going to kill it, that was Jim's job. It is under the flowerpot with firewood stacked all around it and on top of it! I did not want it getting out!! Jim was my hero of course and killed it! Of course it was not a big snake but to me a snake is a snake and that means of course there are bigger snakes around. And I am always digging in the dirt and moving rocks....now I will be a little more careful.
Of course I also did way more than I should have done in the yard but the weather is so nice and there is soooooo much to be done. IT KILLS ME THAT I HAVE TO PACE MYSELF!! Doing just a few things causes me to flare and puts me down for the count!! It really ticks me off!!! (that's being nice)

Saturday was another busy day doing some yard work, Jim and I kept passing each other through out the day.....so much for spending the afternoon together. When he was cutting grass, I had to go somewhere to meet Michelle and then I came home and he had to leave, that kinda day. Like I said, I did get some planting done though...thank you so much hunny for being an awesome hole digger!!! I know you hate yard work....I love you even more for helping me!! P.S. we have ALOT more to do...:) :) :)
But the really nice part of Saturday was that we did something we have not done in forever....went out for dinner after 7:00 pm...YES, we went out after dark!!! We sat outside and split a meal, enjoyed a nice conversation. I think next time, might even come home and try a glass of wine on the back deck???? Just 1 glass though!!!!
Jim got me a beach chair...yea!!! I can lay out in my backyard and get me some sun!!!! Talk about relaxing...OYEA BABY!!!

Sunday had a really rough start for me...I had not been to church in a couple of weeks and was really looking forward to going. I had even picked out my clothes the day before and was so excited. But my fibro and IBS had other plans for me. I have been really trying to loose weight and so far have lost, as of this morning at 7:40 a.m. a total of 14 pounds!!! Of course as soon as I get up and eat that will change. Anyway those of you that have severe IBS will understand when I say it had been over a week for me and I wanted to sceam!!! SO I DID!! My loving and wonderful husband went to church and I told him to save me a seat. I had to find something to wear that did not involve elastic but would be comfortable! Yea, right!!! My body was fighting me in every way possible too!! Why high pain today???? I just wanted to feel good and celebrate Easter and all it stands for! Anyway, I ramble....I made it to church.....a beautiful young lady by the name of Jessica Stegall made my day!! Just by saying a few kind words to me and caring enough to tell me....I am so proud to know you Jessica and love you girl!!
I love my church family, they are such a special group of people and have been so supportive to Jim and I! This has been a year from HELL I think is safe to say and not once has anyone NOT been supportive of us! Been there for us when needed!! Our Pastor Craig Childs is truly a rock for us with his prayers and support!!
We came home and did a few things in the yard again, well I did. I had 3 plants left and wanted to get them in the ground. So many more plants to go.....can't wait to get some from my mom in about a month. Until then will be buying pits and pieces here and there trying to fill in all the empty space.....:) I so love my yard work and it is one of the biggest things I miss doing! I mean I still trudge along and do what I can but it woops my butt and causes me to flare so quick! I hate having to stop. I have so many ideas. I see how I want my yard to be and just can't get it that way.....
We had some very nice people stop by yesterday for a deer meat pick up and it turned out to be a nice couple of hours. Always enjoy good company and good conversation......
Last night we had my awesome in laws and our very dear friends, the Julians over for hamburgers and company. It was great. At first I was dreading it to be honest. I have to explain that.....I wanted everyone here but I had over done it trying to get things done, my back was on fire, I was having a flare, and all I wanted to do was lay down but couldn't!! I wanted the company, I was looking forward to seeing everyone just should have stopped sooner!! I know, I know......of course, once I sat down and my meds kicked in, all was better! My awesome husband picked up the messy kitchen for me!! Thank you sooooo much, I loved that!!!!

Well, it is now Monday morning and I actually have a pretty busy week ahead of me. Well for me it is busy....3 bladder treatments, MRI's, physical therapy and a HAIR CUT AND COLOR!!!!!!! Yea, I am so happy for that!!!!
I am going to be working on getting back into the Y...having my back problems and being sick with the flu and a bad flare up really got me out of whack. I am really trying to build my energy back up.....not push myself to hard to fast but want get back into moving!!! Hoping to start walking every night!!! Great for the butt and thighs...:)

Don"t know where to go??

2010-04-01T22:04:00.002-04:00

Don"t really feel like blogging. Not really sure what to write about. laying here trying not to fall asleep, I am all of a sudden very very tired.....

The steroids seem to be helping my back. I have only taken them for 1 day and my pain is at it's best since this past Saturday. I still cannot stand up straight though. Man, I am tired, have I mentioned that????

Week 1 of my bladder treatments down...2 more to go!!! I love my nurse.....

Had an AWESOME talk with my mother in law tonight.....Thank you, Sue....I Love You!!!!

It was hot today and I loved it....I am going to try and lay out in the backyard for an hour or so tomorrow...scare a few neighbors...
Then do some yard work, plant some plants....clean the patio cushions...busy day. I am praying for a low pain day and some energy. I always have the best intentions and usually get a piece of it done. I WILL NOT OVER DO IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Good night.....

Beautiful Day

2010-03-31T22:08:00.002-04:00

How can anyone have a bad day when the weather is beautiful outside? Today was in the mid 70's, sunny,clear blue skies picture perfect day.

By the way, in case you ever wondered, it is very very hard to type when you are laying on the couch and your cat (who is not small by any means) decides to lay on your chest and sleep. I know I could move him but what kind of cat lover would I be??? I am laying here typing with one hand...his whole body is covering my chest and his head is up under my neck!!! I guess you just need to see it....haha :)

Found an orthopedic doctor that I like today, Dr. Kramer. He actually seemed to care and he listened. I have to tell you how I found him....thru the kindness of a stranger. Yesterday a lady saw how much pain I was in and recommended him. I am glad I listened to her, THANK YOU my stranger friend!!!! Anyway, xrays were taken and everything there looked good. Going to have 2 MRI's done next week. Wants to see what is going on since the pain has been with me for over 12 plus years???? Starting physical therapy next week and a dose of steroids. Never understood how steroids worked to help pain????
I just know that the pain on Sunday was unbearable and my husband was awesome!!!!

I actually got to prune my roses today...looking for something to put down with them. Hosta??Just to cover the empty spaces. I think I will google ideas....any suggestions????? I am so frustrated that I have not been able to dig holes and plant my plants yet.....Jim dug a few holes for me tonight so I got a few in....I know what I am doing tomorrow!!! I wish I had about 1000.00 and I would be set, just want to fill everything in!!! I can visualize it in my head, just wish I could get it the way I want it....does that make sense???
On HGTV they have a couple shows where the come and do peoples yards, why can't they come do mine????

10 pounds.....I have lost 10 pounds!!! That is something I didn't think I would ever be able to say!! Only 20 more to go....I really really want to be able to wear the pair of low rise, button fly jeans I wore when I met Jim...Yes, I still have them hanging in my closet......
At the end of July I am going to a mini reunion at the beach with some friends that I have not seen since 1976.....wanna at least feel 1/2 good about myself. That way, if my pain level is bad I will hopefully at least look ok...:)

This weekend is going to be in the 80's!!!! I cannot wait...I am hoping to at least be able to lay out in the backyard for a couple hours with a book and catch some sun....If I ask real nice, maybe Jim will let me ride on the bike a little with him too. I love how it relaxes him and how sexy he looks on it too!!!! Yummy!!!!

It is going to be a great weekend and a happy one.....beautiful sky's...sunny sky's.....sun does my body good!! No humidity....I love it!!

emergency room

2010-03-29T10:13:00.004-04:00

Ended up in the emergency room last night because I couldn't take the back pain anymore. Jim was having to help me walk, help me sit on the toilet even pull my pants up. I could not get up without crying the pain was that bad. I thought I was going to be sick a couple of times....

So after many hours of this I finally asked Jim to take me, I just couldn't do it any more. Talk about a let down!! I thought going to the emergency room, was supposed to help you not make you feel worse!!! First the funny part....I received my Medicaid Part A card Friday ( for hospital) so was relieved that we had that to use. Gave the person all my info, insurance card, medicaid card and before he walked back to us I looked at Jim and said well poo, I don't think my medicaid starts until April 1.....then the guy comes walking around the corner with this look on his face and I knew what he was going to say.....I was right!!!! APRIL 1!!!!

I had put off going to the emergency room because I knew it would cost money we didn't have or need to spend but I new with the medicaid card it would be better, that is why I decided to finally go then.....of course, APRIL 1st!!!

They gave me a morphine shot in my hip which really didn't help. I left there in almost as much pain as I arrived. I never saw a doctor, just the PA, the doctor couldn't be bothered. All she did was poke at my back, ( which I about came out of my chair and smacked her) no xrays nothing!!! Just told to go home and continue with my pain meds that I have and to call my pain doctor to make an appointment.....I was and am so pissed off!!!! They didn't even come close to meeting their mission statement!!! Did I call and complain, YES I DID!!! Will it do any good, probably not. I am sure the PA that I had last night will take care of someone else tonight and all I can say is that I pray they get better care than I did!!!

Part of yesterday was a bluer to me but I do remember how wonderful my husband was and how wonderful his strong arms felt when he was holding me up. I felt so secure and safe and free of pain when he had me....

Today has been a day of doing much of nothing and it has sucked!!! I am so tired of doing nothing....first fibro and now this...come on now!!!! I was able to make it to my bladder treatment. I had so many people looking at me. The way I was walking and standing. I was shuffling across the parking lot and had to stop mid step. The pain was so intense I couldn't move and didn't know what to do...but I was going to do it!!!

I need to make an appointment for my back, just trying to figure out which doctor to call. My general doctor which I would go to for a referral or my fibro doctor which would take forever to get into????

An alcoholic I will not be!!

2010-03-28T09:55:00.002-04:00

Yesterday was a good day emotionally and I so needed it. I had almost forgotten what it felt like to go thru a day without crying. The past couple of months have been like an emotional roller coaster for Jim and I and we are both ready to get off.

Last night we went over to our friends house and I found a new wine that I really like. Of course I can't remember what it is called right now but I will post later....anyway, I have pretty much taken to not drinking because of the meds I take and I don't really want to risk feeling like crud! So what did I do last night, drank 3 glasses of wine!!!! The first real alcohol in forever....and after glass 3 I wanted to die!!! We came home, Jim helped me into bed, put the trashcan beside me. (didn't need it but I wish I had) So, I am sticking to one glass and being DD!!

To top it all of I threw my back out yesterday. For about the last 15/18 years it has been happening. It is like it gets stuck, I will be walking and all of a sudden it will stop me in my tracks. A pain so sharp it takes my breath away. So for the next couple of days, I will walk funny and bend funny. I have some muscle relaxers but I REALLY DON'T WANT TO TAKE MORE PILLS!!!! I might have gotten 3/4 hours sleep last night because I just couldn't get comfortable or would wake every time I moved. I feel so bad because I kept Jim awake too..:( I am laying here and it hurts so freaking bad.....come on, give me a break!!! Isn't fibro pain, enough????

Week 1 down of my bladder treatments 2 more to go......

am I a weak person?

2010-03-23T22:29:00.003-04:00

Am I a weak person? I don't think so, in fact I like to think I am or used to be one really tough cookie!! I could work circle around most people, never called in sick even if I was sick I would go to work. I was usually the one to help out when needed.

I am asking this because I have had several people lately tell me about people they know that have fibro and are having to just tough it out and keep working. They have no choice but to keep going. What does that make me? I wonder if they have CFS, IC, IBS as well? I know without a shadow of doubt that for the first two and a half years that I had fibro/CFS I could not have worked one single day! If I did not have my wonderful husband I would either be on the streets, living with my parents or God only knows where because I know I could not have worked. I fought day in day out trying to survive! My heart goes out to single people that have families to support..how do they do it?? I mean I don't know how to put into words how hard it was for me to do the daily living functions.....there were many days I didn't take a shower, nights I couldn't cook, I hardly cleaned my house, if at all!!So what do people think of me? I would have given anything to have been able to live my life...to have been able to fight my way to work everyday. In fact I did do that about the last 6 months at my job before I lost it and just walked out one day. I just couldn't do it anymore!! I was having a breakdown from trying to do it! I was soooo tired and hurt so bad!!!

Again I say I used to be a very strong person!!! So what does that make me now?? I know I am very blessed in ways that others with fibro are not. I have a wonderful husband.....who has put up with so much from me!! Because of me not working, I have put us into a financial ruin/disaster. So why didn't I force myself to work, why did I allow this to happen? I swear if I could have worked I would have....I am a proud person, I have always worked hard and taken care of what I had, this is not something I just thought O goodie I don't have to work now!!! I have spent more hours laying around doing nothing because my body just will not move!! I have had more conversations with myself praying for energy!!! The pain is unbearable most days but not having the energy to move is worse!!
I was at a friends house and was talking about being at the beach and they called it a vacation and I said it was not a vacation, I was spending time with my daughter and family during her spring break. Just need some revamp time....went down with a very bad cold, a flare and the weather was yucky!!! Anyway, my friends said it was a vacation because I wasn't working her 60 hour work week. Would I want to switch with her?? Why, yes would love to!!!! My friends or people in general think that because they see me doing stuff that I am fine and why am I not working....sucking it up!! I wake up and never know from day to day how I am going to be! Today I woke up and my feet and legs are hurting about an 8 on a scale of 1-10. I am typing this with my eyes 1/2 closed trying to stay awake. Every step I take I feel like I have 40 pound weights tied to my legs!! But, should I suck it up and force my self to work and mentally go insane trying to do it??? What does that make me because I am not able to do???? I DIDN'T ASK FOR MY LIFE TO BE THIS WAY......I AM A STRONG PERSON!!!
So I guess when people want to think bad about me and want to tell me about people that have fibro and suck it up and work and are looking at me like...why don't you??? Try living a month in my shoes!!!!

The past couple of weeks have been better for me. What I mean by that is.....I am able to get out of bed before 10:00 some days. getting going is another thing though!
It is so sad when the thought of taking a shower just wears me out.....I look at all my friends wearing makeup and have tried wearing it a couple of times this past month......it only took me about an hour and a half to do my makeup and hair....i would get so tired and have to stop. That is sooooo sad!!!!
The warm sunny days do help too.
OK I am tired of rambling........I am going to get my lazy butt up and get going!!!!!!!!!!!

where to begin?

2010-03-22T09:29:00.002-04:00

Back from the beach......
Love my daughter more than I thought possible! I found myself watching her and thinking she is so much like me.....should I be scared?
My parents are so awesome!!!! Played Putt Putt with my dad, Alexx, Ulianna and Eddie (sister in law and nephew) the weather was kinda overcast and a little chilly! Had a great time!!! Didn't really keep score just had fun....and Eddie was very well behaved!!! 3 years old...:)
Friday was the first beautiful day and got to go to the beach for a little over an hour. Could have stayed for a couple more it was that nice....that's ok though, I know I will be going back!!!
I was laying on a towel and my dad layed down beside me and we just had a chat.....it was the best!! No stress....perfect time at the beach :)
In case you can't tell from reading my blog, I love my parents!!

Before I left for the beach I was feeling like crap! I almost didn't go I felt that bad...I think it was the flu???? The week before I had some pretty fantastic days and way way over did it!!! The weather had been beautiful so I was out doing yard work....so imagine having a huge flare up with the flu on top of it. Not fun!! We were supposed to leave Friday after Jim got off work, I just couldn't do it. Saturday morning we were going to leave bright and early but didn't get out until after 1ish. I COULDN'T get out of bed!! As the rest of the story goes....we made it to the beach!!!

Jim and I met Alexx's boyfriend, McKinley. Very nice young man. I love to see her happy....

This is going to be a very busy week just getting back into the swing of things.....I am going to do my best to not over do it!!!! Even when it comes to yard work...:) Thanks to my wonderful husband for the first yard mow of the year. Planting flowers and weeding is not hard work in my book....it is therapy!!!!

So gotta go get started on my week....will blog later....by the way....this morning my pain level is about a 6 and my energy level is a 6 and my stomach is a 40, my mental is, well I am still working on that! haha

Very Long Week......

2010-03-18T22:34:00.003-04:00

First let me start this off by saying to my parents and my daughter I love you all with everything I am! When you are reading this please try to understand where I am coming from and I am going to pray this does not come out all wrong.....

Jim drove me to the beach this past Saturday and left me with no car....:( he didn't really leave me, I just feel totally left and abandoned because I am having to rely on my daughter to get anywhere. Which means she has had to spend every moment of her spring break with me. Let me back up here a minute.....we were down to one car in our family on Saturday so Jim had to bring me down.....Even if we had 2 cars, Jim is not crazy about me driving far distances because I have a tendency to fall asleep while driving. Which is soooo funny because I used to drive all the time as a district manager. I get nervous too....I have just learned to pull over and run around the car a couple of times or stop and take a nap. There have been a few times when I have been so thankful to be home, the drive takes everything out of me. Again, keep in mind when Jim and I were dating, it was nothing for me to hop in the car and drive the 4 hours to see him...There are times at home just driving around town if I am having a bad day or even a good day I can nod off when driving. Have I said how much I hate CFS??? Well I do!!!!!!!

When I came to the beach, I had a very bad cold which didn't help matters. Sunday and Monday were totally wasted days! Tuesday, Alexx and I got out the house and I rode with her while she did some job hunting. Then we went and rented some movies and where in for the night. Back to Monday we did nothing really during the day but did watch some movies. Wednesday we met my dad, sister in law and nephew at Chick Fil A for a kids night thingy then we went back to Pawleys and watched a movie. Today we cleaned up the place in Pawleys and about 3ish we headed to meet my dad, sister in law and nephew to play putt putt. The weather was kinda cloudy, a little chilly just perfect to play. It was nice to actually do something outside this week. I have felt so bad for my daughter....she has gotten to see what little energy her mom has!! I was sooo hoping that my daughter would get some good days out of me...I am not much fun to be around. I am sure she will be fine with me not coming down and her having to stay with me anytime soon. She doesn't really relax around me....I see how tense she is!!! We used to have so much fun...laughing and just being happy. It breaks my heart what I feel I have done to our relationship but yet have had no control over!! I hope that makes sense to someone????? My daughter has seen me cry more this week than all the years she has been alive, that is just not right!!!!

My daughter and I were having lunch today and to have her start crying telling me that I am not how I used to be. I used to laugh and smile. She never knows how I am going to be.....she was not being ugly by any means. We were having a very good conversation and it killed me to hear her say that!!! I am so different......to her!! The truth is, I am so very different!!! I am so much more a loner. I don't like loud noises, bright lights, I don't talk that much....I would say it is safe to say I am a compete 360 of who I used to be! And I HATE IT!!!!!!!!!!!!!

One really bad part of this week has been.....I FORGOT SOME OF MY MEDS!!!!!!!!! I went to CVS and got enough to last me until Wednesday night. I was supposed to go home on Thursday but was having problems getting home!! Have I said I will never be without a car at the beach again??? I will not!! Anyway, since I had already gotten some I could not get anymore...:( My nights and mornings have not been the greatest!

I have wanted to go home so many times this past week just so I could be alone! At home during the day I would say about 90% of the time I am alone...something I have gotten used to. I don't have to worry about anyone seeing me at my worst, seeing me cry when I am sad, seeing me when I don't have the energy to move or hurt to bad to move. I don't have to answer to anyone...so I guess being alone is a good thing for me! Something I have gotten used too! This week being with my daughter 24/7 I have had to work hard on not being alone......don't get me wrong I treasure EVERY second with Alexx!!!! This week has just really reminded how much I HATE being sick!!!! What it has done to my life and how it not only affects me but those I love!!

Tomorrow is my last day here....I am praying for a great one!!!!!! I would love to spend about an hour just laying on the beach reading....keep your fingers crossed XXXXXXXXXX
I am spending tonight and tomorrow night at my parents house which is good.....I love spending time with them!!! I am so blessed in the parent department!!!!!

Sweet dreams to those that are able to sleep..........

Spring Break

2010-03-17T18:20:00.002-04:00

Spending some time with my daughter this week while she is on spring break. I have really hiiiiiiiiiiiiiiiiiiii (ok that was my daughter stopping in the room) as I was saying, I have really missed here since Christmas. This is one of the many times I HATE being sick!!! My energy is not 100%, I have to fake it some days when I don't want to move I have to move though because I am so tired of just doing nothing! It is a crazy circle....my pain level has been tolerable this week...if I could have a massage for about an hour though I would be in heaven! My upper body is so tight and hurts so bad! My neck feels like it is being held together by a 1000 tight knots!

I have been fighting my bladder pain for the past couple of months and have decided that it is a battle I am not going to win. When I get back home, will be making an appointment. I was hoping my IC would not come back but that is not to be the case More milk treatments....yeaha!!! For people that do not know what IC is, please read up on it!!! It is not fun and very very painful...it was the beginning of my life changing journey....

Don't get me wrong, I am loving being with my daughter! Just wish I could go and go with her....:)We have had fun watching movies and eating though......:)

Just wanted to stop in and say hi, will write more when I get home...

Weather????

2010-03-11T21:12:00.002-05:00

There is no way you can not tell me that the weather does not affect my fibro/cfs and everything else that goes with it!!!! My sore scratchy throat, shingles on my arm, very tired, achy all over, just want to sleep...
This past week has been beautiful, warm and sunny and my body felt pretty good. Yesterday it started getting cloudy and I could tell a difference as soon as I saw the first cloud....
this morning with the rain, I am back to feeling bad. Right now I am laying here trying to figure out if I am getting a shingles out break on my other arm....

Good night....

Been awhile

2010-03-09T16:02:00.006-05:00

Well it's been awhile so I thought I would try to write some words today....not sure where I am going to go with this but then again, I usually don't.

The past couple of days have actually been pretty good for me. Except for my stomach....my IBS is killing me! I have lost about 7 pounds (according to my scales) but looking at my stomach, I still look very much pregnant. The pressure is so painful.....oops, I am falling asleep here :) my body seems to be going into coma mode.

Went to the doctors today and hopefully will be able to get some shots on Friday in my hips...that should help with the pain at least for a couple of days. I am trying some pain patches on my hips, can't wait to see if they work???

*************************************************************************************

That was from Tuesday, now it is Wednesday. It was way to pretty out side yesterday to be inside so I stopped typing and went outside right away. :) In our back yard we have this hill so to speak that has needed to be cleaned up for since we moved into the house 5 years ago. We started it this past Sunday, YEA!!!! Jim really helped me get alot done and now I am able to manage it. I needed his help with the big stuff. Kyle wants to run the other way because all he sees is all the bagging he is going to be doing. He swears he will never own a house with a yard just so he doesn't have to do yard work...lol!!
It is going to be slow going but it will get done now. There are more big rocks up there than I knew, they were just covered up in all the growth. It is going to look so nice once I am done with it, I hope. I am not to proud to say I am taking donations of any "plant clippings" or "transplants" anyone wants to donate. I am hoping to get some hosta from some friends for the side of my house. I am going to the beach this week and am going to be working with my mom on flower and bush ideas????? We have really cleaned ALOT away from the top. I am paying for it now but I love looking at it. My vegetable beds are clean and ready for planting too.
Grass seed is going to be a big purchase for us in the very near future with fertilizer. I don't think we have ever had good grass...haha!!
I am so thankful that the past few days, the weather has been sunny and warm it really does makes a huge difference in the way I feel. Of course the down side of that is I have now over done it and am laying here with no energy, sore throat, scratchy cough, shingles break out on my arm , I think it is starting on my back too. Just plain feel like crap!!!

Have I said what an awesome husband I have lately? I know everyone gets sick of hearing about it but Jim really is an awesome man!! Yes, there are days he drives me nuts, days that I want to not even be around him but I will always love him! He is MY soul mate! My life is not complete without him! Jim has such a way of calming me down, letting me know that all will be ok and that GOD is in control. We have to do our part and we will!!! We have each other!!!!!!

I have been having so many down days......I am trying very hard to have no crying days!! I am down to my last pair of contacts so I can't keep crying!!! I used to be a very happy person, full of energy. Over the past couple of years I have fought daily to smile and laugh! Going from a strong type A person with extreme energy to the complete opposite really takes a toll on a person. I used to be a person that loved working, it was such a part of who I was..... These past weeks have been so very dark for me...I have been very scared, I have scared Jim! This disease/illness has totally changed who I am but I can still be happy!!! I am working very hard on getting there again. It is a very hard road to walk......I am not blogging like I used to because I just don't feel like talking about it! But then again I do because it is a way for me to vent...kinda sick and twisted I know..haha
I have not given up blogging, just taking a few days off here and there....have alot going on that Jim and I have to take care of. Our energy is focused on getting our life back on track and where it needs to be....not sure what that direction will be right now?? There are going to be some major changes but we are ready for what ever comes our way, we are going to do our part and the rest is going to be in Gods hands...he has all the plans!
Does anyone have a super duper golf umbrella i can have?? Jim and I have decided that we must have the largest black storm cloud over us ever!!!! THINGS WILL TURN AROUND AND WE HAVE EACH OTHER!!!!!!!!!!!!!!!!!!!!

Have a blessed day and remember that GOD IS GOOD!!!

I can get thru this...right??

2010-02-27T00:50:00.002-05:00

I can do this right???? I am laying here and want to freaking scream!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This morning started out with the usual, my hips in extreme pain, my stomach ready to explode, the pain so bad it hurt to move. It finally stopped hurting and I was feeling pretty ok. I wasn't really hurting, my stomach felt pretty darn good so I got brave about 12ish and ate some chicken soup with some crackers and water. That did ok. For the rest of the day I didn't eat anything, I mean nothing!
Michelle and I had our first bead party of the year and boy was I hungry, I couldn't wait for it to be over so I could try and eat something. I was so afraid to eat in case my stomach decided to swell like a beach ball and be in extreme pain. I wanted to enjoy the kids at the party...:) which I did!!!
Well I decided to eat Chick Fil A because I have never had a problem with their food before. It was always my safe food. NOT ANY MORE!!!! I had a chicken sandwhich, medium unsweet tea and they were giving away FREE samples of their chicken salad. I now look like I am about 7 months pregnant and feel like I am having contractions!!!! I want to loose weight but not this way!!!

If you have heard of restless leg syndrom or have ever suffered from it....try suffering from restless arm!!!! This is something that has just started. Something new to add to the list :(
It is times like this that make me want to scream.....I can't take it anymore!!!!

I want to fall asleep so I am going to try........

Scared

2010-02-26T09:05:00.001-05:00

I write this blog for me and only me. It is a way for me to vent and say what I am thinking. I am sure most people would read this and think it is terrible but then again, I do it for me. Jim always says we should make this into a book...haha! People do not want to read someone being negative all the time. I know that fibro hits people differently...why did it have to knock the shit out of me? O wait, it didn't!!! I can't do that anymore...haha.
Some people with fibro take no meds, can exercise daily, continue to live their lives as though they just hit a small bump in the road. Me on the other hand.....no such luck!!!! Trust me I WANT TO BE POSITIVE, I WANT TO HAVE TO SUNNY DISPOSITION.....I HATE HAVING A BLACK CLOUD OVER MY HEAD!!!

I am soooo ready for spring, can you tell?? Me and cold weather do not do well!!

This has probably been one of the worst weeks for me in a long time, emotionally. I am going to write about somethings and as I do, remember....I am doing this for me!

I have always said how could anyone kill themselves? Nothing is that bad. What about your family? Tomorrow will be better...Think about your husband, children, their graduations, weddings, and grandchildren. I am actually closer to understanding how people can come to that point in their life! I have wanted to just let it all go this week...all it would take is one second and it would be over! I AM NOT GOING TO DO ANYTHING STUPID!! I HAVE WAY TO MUCH TO LIVE FOR!!! I AM SO IN LOVE WITH MY HUSBAND! I LOVE MY BEAUTIFUL DAUGHTER AND AM SO PROUD OF HER...SHE IS GOING TO BE A HUGE SUCCESS AT WHAT EVER SHE DOES WITH HER LIFE! KYLE WITH HIS BIG HEART....:) MY PARENTS WHO HAVE GIVEN SO MUCH FOR ME AND WILL NEVER KNOW HOW MUCH I LOVE THEM!!!
Now that I have said all that......back to being scared. I was very scared this week...for the thought to actually cross my mind. I actually thought about what could I take to make that happen?? To think that I could be pain free! My stomach would not hurt anymore, my body wouldn't hurt, I could wake up and my hips not be in agony, ( my stomach has not stopped hurting for 2 weeks straight, not 1 minute) My stomach felt good for about a week then about a month ago I went thru the same thing... I would feel normal, light on my feet and I don't mean from losing weight either. It is a wellness feeling.

The complete emptiness I felt this week.....

I am so tired of being tired and not feeling well!!! Then I think of people that are ALOT worse than I am. How do they do it???

Being my freind

2010-02-22T16:18:00.002-05:00

Is it hard being my friend? You know how when you call someone, you sometimes ask how you doing? Do you cringe if you accidentally ask me that? Think, lord here she goes again!! Well if it makes you feel any better, I really don't know what to say when you ask me that question. Do I answer with I feel like crap or answer with I feel ok when I don't. I just had a friend call and asked me how I was doing and I had to ask her to hold on. I was trying to get myself under control and not cry. I was sitting here feeling pretty bad and thinking how my emotions are up and down from one minute to the next. How 1 minute I feel great and think I will be "normal" and then wham, guess what I realize I have this SHIT for life!!!! Sorry, just needed to say that!!
Anyway, my friend called and I didn't want her to have to "deal" with me being all emotional so I asked her to hold on a second got my self under control and came back on the line and said....Hey girl what you up to? ( in my usual perky, up beat voice) I wonder what she would have done if I would have just let the tears fall and had a good ol cry like I was feeling at the moment?? I have several woman friends and lately have been thinking alot about them and how they are in my life. How they react to me??? What do they want from me? Where do I really stand with them? Jim and I had a great conversation Sunday about my woman friends and me not working and how hard it is for me not being out and about so to speak....I hope that makes some sort of sense. I mean having a woman friend that understands you NO MATTER what and gets you NO MATTER what is a ONCE in a life time thing. ( ok maybe a 2 times) Having a friend like this when you have fibromyalgia.....that is asking alot, isn't it???
I mean who can I really call when I need a good cry? Who can I call when I need someone to make me feel all better. I know I can call Jim at any time and he is my rock!! But as a woman, we like having that friendship and not having it sometimes can really suck!!

*i know i repeated myself in the previous paragraph just didn't feel like changing it*

On a fun note...March 6th, I am going to see Menopause the Musical with a group of beautiful woman friends and I cannot wait!! We are going to do lunch first and I am just praying and praying that I have a great day!!!!

Bring on the spring....

2010-02-21T17:26:00.004-05:00

Today is just a tease I know but it sure is nice!!

The sun is shining!! There is a certain feeling in the air and the birds are singing. People are outside. It is just a glorious feeling and I am loving it. But you know what I loved more than any of that?? Jim and I worked outside together cleaning up the garage. We have not done that in forever. We were just together....I can't explain what I mean but I loved it!!!

One of my favorite things in the whole wide world (say that 3X fast) is when it is spring time and Jim and I can work in the yard from about 9am till after dark....then grill some supper and have a nice cold beer to finish it off!! Jim laughs at me but he knows I love it when the yard has been edged:) I cannot wait for those days...:) I don't think Jim is in any hurry though. Please pray that I am able to do some yard work this year. Last year was a very bad year, actually since I have been sick my yard has not been the same. I am actually in the process of seeing what I can do to make things easier...starting now. Of course I plant nothing that doesn't come back year after year!!!

My roses were beautiful last year. Kyle bought me my first one, a yellow rose bush that is growing up the side of our garage. Jim is going to be putting up a trellis for that one, can't wait. I love it, every once in awhile Kyle will cut some roses off and bring them in to me :)

My spelling, memory is just in the toilet!! I cannot even add or subtract simple #'s without staring at them and going over it over and over again. My spelling is awful too. I used to be pretty goods and now I can't spell simple words without spell check or Jim's help. My simple memory is getting worse every day and I don't mean just a simple FOG either. Jim and I will be talking and I will have to cut in (which I don't want to) but I will forget what I want to say if I don't. I have started writing more and more things down. As I am writing this, it can take me several tries just to get a sentence written.

Today has been an ok day. I had a rather rough start after last night getting sick. For some reason I decided to get sick, throw up all my food....such fun. The rest of the night I was awake off and on, couldn't get comfortable, hips hurt, shoulders hurt, my loving husbands beautiful snoring, his thrashing of legs and arms. He was so sweet though every time I asked him to move. About 4:00 I fell into a good sleep....:)
Was able to make it to church which was good....

Just heard it is supposed to rain tomorrow.....bummer!!!!! I hope the rain doesn't make me feel like crap....we will see:(