Energizer bunny

Energizer bunny

                How many of us used to have toys when we were kids that ran off of batteries, do you remember when energizers first came to market? I was ecstatic they would just keep going and going and going, the commercial said so, I begged my parents for those batteries so I could drive my remote control car for more then 5 minutes at a time with out having to recharge them or replace them.  Well now I am an adult and I wish they could make some type of batteries to keep my wife from being so fatigued.  I mean she is just like the old toy, we will be talking and all of a sudden I see her eyes start to drop, she fights it and then the speech becomes slow, then the words become slurred. I usually reach over and turn the switch off on her (tell her I love her and that she needs to close her eyes and sleep for a bit) after about 20 minutes her eyes pop open and where ever she was in the conversation she is right back at it never skipping a beat until the charge wears off again. Wonder is they should take fatigue out of CFS and replace it with the word energy.  It’s a learning process to be able to have a deep conversation and be in the middle of making a point to have to turn the egg timer and wait for the recharge, but it’s worth it, no need to get upset or frustrated as even a person in great health needs to recharge the batteries from time to time.  All we can do is hope that one day the energizer bunny will figure out a way to help with energy for all the sufferers of chronic fatigue syndrome.

Torn between two worlds belonging in neither

Torn between two worlds belonging in neither

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

I have concluded many things and still struggle with more concerning the invisible disease, first the spouse still needs to do things they can do, second the spouse can no longer truly enjoy things the way they used to because the experience is tainted with the fact that my wife isn’t here, or she is in pain because she is there, so you make sacrifices change your plans and you don’t do all the things you wanted to just to be together.  It amazes me how people just go and not think twice about it, all the times when Lynn was healthy we did stuff we saw stuff we traveled a few new places, we made plans to visit life long bucket list places, but now we don’t talk of those things anymore not sure if its because I don’t want to worry her that I am missing things that we cant and don’t do anymore or if its because I realize some of those things are no longer with in reach for how life is now.  Lynn doesn’t talk to me about them either due to finances, and I could speculate but it just isn’t talked about.  Let me give you a better idea of what I mean. I was reading my western magazine the other night and the pictures in the magazine are places I went to as a kid camping ( thanks Mom and Dad for letting me see those things), I looked at the pictures and said wouldn’t it be great to take Lynn to those places to see the history and the beauty of it all, well within a few minutes those thoughts were gone because Lynn is having a bad time right now, and the thoughts go to, she wouldn’t be able to sit in a car and travel all day, how would she do with the climate change, I know she doesn’t do good when it rains and you never know when your going to get a desert storm that just pops up. I guess we need to save the camping for close to home.  I haven’t even talked to Lynn about this so when she reads this I am sure she will not feel good and she will apologize that we can’t do those things, which in itself kills me, because as long as we are together it is all that matters.  We know the beach is a good thing for Lynn usually although our last 2 trips to the beach we have found that the fibro is still there and very much alive.  So we pretty much plan our vacations now on one 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 this but, as a spouse ( heck I am going to give it a name I will call it a FIBROMATE,, wonder if that is really a word seeing that spell check isn’t saying I misspelt it) as a fibromate  I think we are stuck and torn between two worlds one of old normalcy and a second of the new normalcy,, and although I am torn between them if it is a choice between regular life with out Lynn and this crazy fibro Life with Lynn, I will go to my grave happy that I am living the fibro life. And just because I do some normal things because Lynn isn’t feeling well and cant at the time, does not mean that my mind and heart are not left at the house with Lynn, and things are never the same with out her by my side. I am just torn between the two worlds I live in now………

another day in fibro land...

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....

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

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

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

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

60 followers

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

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

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

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...

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???

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!

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

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

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

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

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

Short Post

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

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?

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

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

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

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?

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

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..:)

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

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.....

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!!!