Friday, October 19, 2012

We are all so different...

I was struck by something the other day that I have always known but I was reminded of it and it has stuck with me. All of us with Fibro are not the same!! Not one of us has the exact same symptoms. We have alot of the same, some are worse, some are less, but no 2 are exactly alike!!! And you NEVER know who has it! I have been going to this yogurt shop off and on for a couple months now and always talk to the employees, just idle chit chat and they all looked "just fine" to me. Yesterday I wore my fibro t-shirt in the yogurt shop and the young lady ringing me up made a comment about how she had never seen a fibro shirt before. I asked her how she was familiar with fibro and she told me she has had it for about the past 4 years. I was very surprised to say the least. I didn't want to ask her her age but I would say she is no older than 24ish???? I asked her how bad she had it and she told me as long as she takes her medicine she can function pretty well and live her life. (boy am I jealous) She asked me how long I have had it and about me, I told her it has been 5 years this month and that I live day to day...yesterday just happened to be about a 7 on a scale of 1-10 (10 being the worst) I looked terrible!!!! It took everything I had to just get out of the house and I had to get out of the house, I was going to go crazy!! The young lady looked all perky and not sick at all...of course I would never say that to her, I know better!!! haha
The bottoms of my feet were on fire, my ankles felt as though they could snap at any minute, my hips, I can't really explain the pain but my left one is the worst and lets just say it can make me want to snap sometimes! My energy was in the toilet and I am sure if  you were to take one look at me you would say, wow she looks rough!!!!

Just a small side note, I really wish they would take the Lyrica commercials off the TV, I think they do us more damage than good! People that don't have fibro see these and think that we should be able to take a pill and start to feel better, it is not that easy!!! I wish it was....They don't realize everything else that goes / comes along with it.

This weekend is a big daughter is turning 21! Wow, I feel old...I am praying that my body cooperates and allows me to really enjoy it. My husband and I are driving to the beach (my daughter is going to college there and living with my parents) and we are taking her and her boyfriend and family out to an awesome German restaurant, Bodos to celebrate...:-) yummy!!!


Tuesday, August 14, 2012

another day...

Hi world it is me again...I know it seems that all I ever do is complain on my blog lately and I'm sorry for that. I am sure some people that read this are looking for a pick me up, something positive. I promise I will write one very soon...:-) but until then.......

This past Friday I was so excited, I just new it was going to be a good weekend and I even told Jim that it was going to be a good one. I just wanted to go for a long walk with our dog, hold hands and just be romantic. (didn't happen) Saturday we had a wedding to go to and I was looking forward to doing some dancing and just having fun. (didn't happen) I got dressed and felt like a fat cow in my dress. I would stand sideways and just look at how big I am, hard to feel good that way. I of course had a full blown sweat fest before we got there. I so hate hot flashes and had about 6 that day!!!!! I sweat so bad that I look like I have just run a full marathon, it's not pretty. I even have sweat fest when I am moving with a bit of speed, faster than a turtle. I wonder is it from my meds, part of fibro or menopause?

We got to the reception and what happens? My legs start to hurt and the pain just gets worse as the day goes on, Jim is having a good time and wants to dance, I sat and smiled as I watched him from my seat. When it came time to leave I was so ready to just go home and lay down. (what I do well) I could tell Jim was disappointed but he didn't say anything. I love him so very much! Once home the rest of my body just decided to fail me as well....:-(

Sunday I woke up and just couldn't go to church. I felt like I had been hit by that famous mack truck! Not only did I hurt from head to toe, I have a UTI now from a bladder treatment I had done last week, I also had zero energy. I was really bummed when I found out we had alot of visitors at church too.
My dear sweet friend Melissa called me after church and said that Jim had told her how bad I was feeling. Melissa knows that I love to lay out and get some sun so she invited me to the pool. I actually wasn't sure if I wanted to go  ( that is sooo not me) Melissa is one of my dearest friends and understands me like no one else does. Melissa has MS and has some other health issues so we use each other as a sounding board and use each others shoulders when we need to cry or just vent....there are days I don't think I would have made it without her!

Today is now Tuesday and I am still pretty much just laying around watching my butt get bigger! This morning when I woke up my lower back was in soooo much pain I begged for it to go away! It was so bad I almost asked Jim to take me to the emergency room. After about 2 hrs it finally went from a pain level of off the charts to about a 5....:-) Pretty sad when a 5 makes me smile!!!!

Today I did go outside and spray paint my frog planter. I also drove to Kyles doctors office to pick up his subscription, that took all my energy and if I am honest with myself I should not have driven at all. When I am hurting and tired I scare myself.
After that quick trip I came home and went back to laying down.....and that has pretty much been my day! Our church started our bowling league tonight and I couldn't do it so I had to have a sub....thank you so much Mark! (that's Melissa's husband)

I was supposed to leave yesterday for Tenn to visit with my sister in law, Claire. That of course didn't happen!!! I am so upset over that, she is such a sweet lady and her and I have become very close. Claire has colon cancer and is going thru chemo. I so wanted to be there for her today (had a treatment) my brother Steve travels with his job and had to leave today...I am so heart broken!!! I am not giving up yet! I'm coming Claire!!!

This has been a really hard flare for me. I try so hard to stay positive but this time it's not working....

My heart aches for my husband. He is such a good man and I am not the woman he thought he was marring. We had such big plans and all those have been put on hold...Jim is so patient with me and loving. I know I test that sometimes but he is always there for me. I know he gets tired of seeing me lay around but never says anything. I try my best to keep the house picked up, it might have some dust here and there but it is kept picked up. I was such an energetic person when we married now I don't where that woman is??? I also think my lack of energy has affected Jim as well...when you have a wife that never wants to do anything you have a tendency to not want to do things either.

I am going to get out of this funk!!!! My mother told me tonight about a friend of mine whose wife has fibro and she was admitted to a hospital because she has been talking about wanting to die, She can't take the pain anymore!!!

I always say I could handle this stupid thing called fibro if I just had some energy and didn't have this extra weight on me!!!!
Tomorrow is another day.....

Monday, July 23, 2012

This is getting old.....

This morning is one of those where I just want to throw things and yell!! I am sooooo tired of feeling like crud...last Friday I had a massive flare and since then have been struggling. I feel like a total waste of a person and I know I'm not it is just that day after day after day for over 5 years NEVER feeling 100% or feeling like you remember in your mind  I'm allowed to have some bad days!!!!

I could say it frustrates me but honestly it makes me a bit angry when people tell me if I was just positive, things would be better!!! Let them deal with this EVERY day and see if they are positive too!!! Don't get me wrong I do have positive days and I do realize how blessed I am!!!

I just really wish people would take the time to get to know what my life is really like before they decide to judge me or Jim for that matter. The reason I say Jim is because this effects him as well.
Today is Wednesday and since Friday I have spent the majority of my time inside the house either sitting or laying down. I have gone a few places but it has been for about an hour and then I come home and am back down again. Yard work which I soooooo want to get my hands into, I am now paying a nice young man to help me out. I went outside yesterday and did some very low key work and after about an hour back inside. Last night it took everything I had just to walk a few steps and I could have easily gone to bed by 9:00 but wanted to spend some time with my hubby.

Jim is such an awesome man!! We don't always get along and he can make me angry in a minute ( I can do the same to him,hahaha)  but I would be lost without him. He is my best friend and the love of my life. I believe with everything that is in me that GOD brought us together and that this is his plan!

Monday, July 16, 2012

This is insane....

It is 4:30pm and all I have done today is worked out in the yard for about an hour, NO MORE. I putted around the house for about an hour, made myself go to the pool and that lasted for a whole 30 minutes because I just couldn't take the heat!! I am so tired and body feels like it weighs a ton!!
It takes everything I have just to get up off the bed and walk.
My husband and I are supposed to go to dinner tonight with friends and a ballgame and I am so afraid I can't do it!!!! Or will he be mad when I need to extra time to get ready??? He is ALWAYS so patient with me but is there going to be that one time where he won't be?

What's even worse is that one of the couples we are going to dinner / game with really don't understand my fibro???? I don't want to upset anyone......:-(

This is one of those days where I just want to get thru it!!!!!!!

Stop this madness!

Fist let me say that I ate 10 maybe more homemade chocolate chip cookies this weekend!!! Kind of like AA, admitting you have a problem is the first step...haha
I usually don't have cookies in my house for just this reason. I think if they had not been homemade it would have been easier to stay away...hahahahahaha My friend Melissa made them for our Vacation Bible School and what was left over I brought home to take to church for our Juice Java Jesus (coffee and snacks before service) . I sent her a text an told her that her cookies were evil, hahaha......ANYWAY, NO MORE FREAKIN COOKIES!!!!!!!!!!!!!!!!!!!!!!

***since I wrote the previous paragraph I have eaten another 10 more cookies and now there are NONE!!***

I don't know if it is the menopause or the hormones I am taking but I have gained about 7 pounds and I am miserable!!! I used to have will power and now I don't have any.. the harder I tell myself not to eat something  I do...!!!!! I sit around with NO energy but I find the energy to wallow into the kitchen....

This past week I started physical therapy on my arms. They have been getting weaker and weaker and I have a hard time some days even opening a jar. My shoulders give me a fit too if I use them a certain way...I think of all the boxes I used to lift over my head and fixtures I used to lift and move and I feel so useless some days! The tingling in my fingers still comes and goes. I have promised my mom that I would get the circulation in my legs checked and that is a promise I plan to keep,,(within the year)
This past week I had my monthly appt. with my pain doctor and it was I think one of the best ones in along time. Really talked to me and was really listening to me. I was with him for about 20 minutes and that is along time for a doctors visit. That did not include getting the shots in my hips either. The pain is not actually in my hips, well to me not what I call hips but they hurts like all get out!!!! When I sleep at night the pain wakes me up when I move or I will find myself sleeping in the same position all night and then when I wake up it hurts so bad to move, can't win! If I sit in position for long or just wrong.....ouch!

Wow, this might be to much info but then again it is my blog and I can say what I want....I had my first period in 5 months! Yaa Hoo.....I am not crazy!!! I was having all the symptoms uuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuu
I mean it really wasn't a big deal, the cramps and the headaches were the worst part. I would say the bloating was bad, which it was but I can't blame that in my period!


This past Friday I decided to go outside and so some yard work, (1 hour at the most) which I soooo love to do and miss doing!!! I used to spend 8 or more hours a day out there on the weekends and you can tell I don't anymore. Jim does a really good job with the grass and the edging but he has never been one to like all the frufru stuff...:-) I never thought I would say this but our next house will have very little yard and very low maintenance. I just can't handle the stress. Yes, I said stress..I know it sounds crazy but my yard stresses me out looking at it!!!! I just want it to be done with once and for all!!! 

Friday night I had a flare that came out of no where and it was off the charts!! I was feeling ok, not good not bad, my usual self and then I went up stairs to lay down and it just started..slowly creaping up on me! My entire body hurt, it hurt to lay down and have the sheets touch my skin, it hurt to stand up, it hurt to sit up, it hurt to just lay on the bed! It hurt to be awake.....It hurt to breath......
Jim had gone to the movies with a friend so it was just me and the pets. Thank goodness Daisy was being a doll baby and not jumping up and down she was sleeping in the bed with me but I knew it was just a matter if time before she would want down....I was sooo on edge. Then the doorbell rings and someone starts to come in the house, it freaks me out!, Daisy gets hyper and my body goes into overdrive in pain trying to get her down off the bed. It was Kyle coming to stay the night....(his dad had forgot to tell me) and it was a true blessing to me, I was so happy to see him even though I don't think I saw him for more than 10 seconds that night. I was upstairs he was downstairs and of course Daisy ran downstairs to him....:-) I asked Kyle to watch her and I went back to bed and I don't really remember much until Jim got home. I do remember sorta begging Jim to get me another pain pill (which I have only done about 5/6 times before) what I mean is I took extra out of my schedule. I also remember snapping at Jim not to touch the bed....the rest of the night is sort of a blur until about 3am and then BOOM, wide awake!!!!!! My pain level had gone from off the charts to about a 6...

Saturday was a pretty laid back day.....a wasted day!!!! I ate of course, that is one thing I am getting to be good at!! My energy level was in the toilet as well as Sunday.
My husband was so loving and tried so hard to be understanding and a great job he did. Being the husband of someone that has fibro has got to be sooooooo hard, I often wonder could I do what he does for me if the roles where reversed? I know how trying I can be!!!! I snap at him when I am in pain and I don't mean to....I do know how lucky I am!!!!

I am in such a rut right now and have got to get out of it!!!!!!!!!!!! I hate that I have no energy and no motivation to do my mind I plan all these to do and just can't get my body to move. My bladder / IC is acting up again...I wonder if that has anything to do with how I am feeling?

My mind never shuts down.....I am always thinking about how I feel and how I want to look like I used too!! I am sooooooooo unhappy with how I look!!! And the bad part is all I have to do is quit eating sooo much and start exercising....sounds sooooo easy right? WELL THEN WHY CAN'T I FREAKIN DO IT???????

Lord my left hip is killing me right now.....but I am going to get up and go to the Y.....even if it is just for 20 minutes!!
My husband wrote a post and asked the question, what are peoples pet peeves? Mine is the same as I'm sure most people with fibro have....when people see me they think just because I look fine, I feel fine! I wish more people would realize that I have been dealing with this pain for about 5 years now and I don't always show it but I AM ALWAYS HURTING!!!


Monday, July 9, 2012

Pet Peeve

ok i hijacked Lynn's blog again, but wanted to have a bit of fun with it this time around. I was reading an article on Pet Peeves and how they effect you, so here is the question for the 82 followers of this will require you all to do a comment on this post, please dont just hit and run, actually comment please for i think it will be interesting to see what everyone says.  Here is the deal Lynn has been struggling with stuff concerning her Fibro and I want to hear what everyone who reads this post biggest PET PEEEVE!!!!!! i mean what is your biggest one concerning the invisible disease, is it memory loss, is it how friends treat you, is it the lack of energy,,,,, please tell me your biggest pet peeve and then list a second one that has nothing to do with Fibro..........this is for spouse too who dont have the disease but lives with it to post also.
and i will start with my biggest on fibro is Lynn's memory loss, she wont remember something and she will get frustrated becuase she doesnt and i think this causes more issues with spouses then almost any other and has to rank in the top 3
peorsonal pet peeve would be to be lied to...

ok i know short post but we are still alive just dealing with the daily grind that is fibro, Lynn keeps wanting to post but draws a blank when its time to type,, so encourage her and comment on this post show her people are reading this and it matters..................


Tuesday, April 17, 2012

Another wasted day!

Well this has been a wasted day and I really hate that!!! I have always been a doer and a task master and having a body that won't let me do things makes me crazy! I go to bed with such high hopes for the next day and then the morning comes and I know that my body needs a few hours to get going but it is now 6:06pm and my body is still not going. It is so hard to explain but here goes.......I feel soooo run down, like I have worked a 60 hr work week. I mean I walk from the kitchen to the living room and I plop on the couch because I'm tired...I had such high hopes of getting our bathroom done today. I promised Jim it would be done and I don't like not being able to do what I said I would....I DON'T LIKE NOT BEING ABLE TO CONTROL MY BODY AND I DON'T LIKE WASTING MY DAYS!!!!! I'm supposed to be getting in the shower right now but the thought of standing up is exhausting me. This is also one of the times I hate it for Jim.....what I mean is lets say he comes home from work and wants to go somewhere together....that won't happen. Or worse yet Jim comes home from work and what does he see but his wife laying around being "lazy".  He says he understands and trust me when I say that I have been soooo blessed with him for a husband but it is still hard not being able to be the wife I want to be for him when he comes home from work....(get your mind out of the gutter, haha) what I mean is having supper cooking or just being up moving around.                                                                                                                                                                                                                  
My friends don't see this part of fibro......they are getting on with their lives today and they think that I am too.....haha boy are they fooled!

Ok so I now have to get up and get in the shower, Jim's daughter just went into labor and have to go to the hospital. I'll be ready when Jim gets home....

Monday, April 16, 2012

Trying something new

I have not been posting as much as I would like to because I have sooo much on my mind but getting it out is a whole nother what I am going to try is to just post short little blip its about how I was feeling the day before or that day and what I did or didn't do.

Yesterday was actually a pretty good day except I had NO energy and feel like I wasted a whole day away! I mean I did things like went to church but them came home and crashed on the bed for a couple hours. ( i had plans to work outside or to paint my bathroom, which my bathroom is now on week 6 of not being done) I went to youth at church about 5:30 and then came and pretty much that was my day....I hate the fatigue that comes with fibro!!!!!!!!!!! That is still one of the hardest things for me to accept...:(

Today has been a better day so far....I have a very dear dear friend that has MS and her and I have decided that every Monday morning we would try to do an exercise class at the Y. Now keep in mind, neither one of us is a morning person and by that I mean we don't get going until at least 11:00 on a normal day so for us to do this class is huge!! This was our second Monday and it felt good. I do what I can and modify if needed but I am doing it!! After last weeks class I hurt in places I hadn't hurt in years and it felt good....yes, it was a good pain for once!!! I so want to get my body back in shape...
My friends Melissa is such a life saver to me some days....she understands me more than anyone (except for Jim) and there have been many days where we have just talked and cried for each other. Melissa deals with alot of leg pain and I pray everyday that it it taken away!! She is such a support person for me and always there for me and she knows that I would do anything for her!!
Now the next challenge for me is to do a class with my friend Michelle....that scares me! What I mean by that is, Michelle is in such awesome shape and told me that this class kicks her might just kill me then...hahahahahaha

So if this is my last post come look for my body at the will be laying dead in the exercise room!!!!!!

I am just hoping and praying that I can continue to do this...I wonder if my insurance will cover my membership since my doctor told me that I have to do this??????

Tuesday, March 13, 2012

Love the sunshine and the smell of cut grass....:)

It has been awhile since I wrote, I mean to everyday but just don't. The funny part is, with as much laying around as I do you would think I would write everyday. I think the reason is because it takes me sooooo long to just write one sentence!! I have to reread what I wrote about 10 times to check for grammar and just to see if it makes sense???? I drive Jim nuts when I'm writing and I ask him 20 times does this sound right??? I used to be such a good writer....

Some random things: I have finally given in and agreed to getting a new car. My car will be paid off in about a year and off course once it hit 100,000 miles it started needing repairs of sorts. I think we have spent about 2500.00 in the last 8 months and this past week we spent LOTS of money and it still needs about another 3000.00. Did I tell you I drive a BMW, as Jim calls it breaking my wallet? I kept saying lets pay the 3000.00 or so and pay off my car and that is still cheaper than buying a new car, but I am going for the new car...:) What is a car payment??? At least we won't have a Harley payment and the Jeep will be payed off in about 6 months....

Went to the beach last Monday....had all these plans and ended up not leaving the house until Thursday! I had a serious case of IBS....what I mean by that is I felt like someone had kicked me in the stomach 100 times and that my intestines where tied into a huge knot. My lower back was in pain and to top it off my fibro was rearing its ugly head!!!! I woke up every morning with the intention of riding my daughters bike hoping that would help but that went know where......
Friday was a better day and my hubby came to town to get knowing I would see him made me feel better...:) Friday night my daughters boyfriends band, BELOW THE BASELINE, was the opening band at the House Of Blues, they were AWESOME!!!!!
Saturday we came home....

It was so nice to come home and find Kyle here, he cooked wings for dinner. He is amazing me everyday...he is turning into such a fine young man!!!

Yesterday started out rough but turned out better than I thought....the weather was PERFECT!!!! It took me 2 days to unpack but finally got it all done! I have sooooo much I want to do this week and really want to accomplish it!! I am praying my body will love the 70 plus weather and work with me!!!

Last night Jim told me something that really bothers me and it is one of those things that if I say something to someone they will be like O, no big deal. Why is that? Since I have known Jim we have always hung around with 3 other couples and we have sorta been nicknamed the Mavericks. (All the couples ride Harley's) Well when we started our small groups at church Jim and I could not go to the one that the 3 other couple go to because we were leading up the youth from church and that was when they were meeting for their small group. Jim and I went to another small group. Yesterday Jim told me that the small group our friends go to are going to call themselves the Mavericks. This is really bothering me....there is more to this but not going to get into it here....I just hate feeling as though we are the afterthought. I'm sorry Jim for writing about this but it really is bothering me....

I really enjoyed yesterday....after Jim got home from work he went in the back yard and was throwing the ball to Daisy and watching her run around and play was if we only had some grass...hahahahahahaha
Daisy also got to go for 2 walks yesterday. I think her new nickname is chunk chunk, kinda like her mom....hahaha

I have really got to work on my will power!!!!!!!!!!!!!! I am so tired of going in circles with this weight and I want it off!!!!!!!!!!!!!!!! I want to be in shape!!!!! If I am going to live my life with fibro and ALL the other lovely ailments it brings, then I want to be in shape dag nab it!!!!!!!!!!!!

So on that note, I am off to clean and paint my bathroom.....I hope!!!!!!!!!  

Tuesday, February 21, 2012

Good timing......

So much for any plans I had made for this past weekend, such a spackling the downstairs bathroom, painting some trim on the outside of the house and working in the yard....:(
Jim started painting the trim above the garage and some of the trim around the windows and around lunch time on Saturday he came in the house to lay down "just for a few minutes" and didn't get up until he went up stairs to crawl into bed. I am not sure what Jim got but whatever it was it got him good this time. Just a couple of weeks ago he was sick with some sort of bug and was down for a couple of days. That was unusual in itself but to get sick twice so soon that is just not Jim!!!!! Especially as sick as he was this time.....I think from Saturday afternoon until early Sunday evening Jim might have spoken 20 words to me...Jim didn't go to work on Monday and for him to do that I KNOW HE FEELS BAD! He never misses work! My hubby is the kind of man that can't shut work off. We are on vacation and he is still working....when he is at home he is still is Tuesday morning and he is still feeling a bit sluggish but he is up and at work and I am praying he is ok!! I am just hoping that whatever he had has run it's course and is long gone!!

The REAL BLESSING in this past weekend.............I felt really good and was able to take care of my hubby..:) And to top it off....Daisy was such a good girl....:)

We had a beautiful snow fall Sunday night.....:) Yea, we are having a winter!!! Of course it was mostly gone by Monday evening and it is going to be in the mid 60's by Friday. But we had winter for a day....:)

Friday, February 17, 2012

Beautiful day.....

This is going to be a quick post because the one I started on Valentines day has ended up in cyber space????  I just want to say a few things.....I love the time of day between 7:00 and 8:00 pm. Why? Because that is the time of day when Jim and I watch Family Feud together and talk and laugh. It can be a bad day for both of us but when that comes everything stops and it is just us....I know some of you will probably say it is a lame show but we usually get a chuckle out of it and it is "us" time!!!!!
Second I have come to really like the bar area in our kitchen...Why? Because after Jim comes home from work and changes clothes alot of time when he doesn't have something to do he will come and sit and talk to me while I am cooking. (this is on the days I am up for cooking) sometimes he will even help me by chopping things but mostly it is the conversation I love.....
Third thing, if I am having a really bad day and am laying on the bed when he comes home from work he will come lay down with me and take 20 - 30 minutes or so and just talk to me about his day....:)

Valentines day is all about love and is one day a year well I get to celebrate loving my husband every day of the year.....Now don't get me wrong there are days where I don't like him and there are days where I just want to be left alone but on those days I am still madly in love with him! (and i know there are days he doesn't like me too)
Having fibro is enough to test any relationship and it has made ours stronger.....
I just want to say.....I love you Jim!!!

Friday, February 10, 2012

It never gets any easier, does it?

In case I wanted to forget what a full fledged flare feels like I had one slam right into last night!!! My week has been up and down with pain and being tired and I tried fighting it....I also tried being a good girl and didn't do very much, hahahaha not that I could if I wanted too! Yesterday of course I had plans to go to the Y and take Daisy for a walk neither of which were done. I think if I had someone to do either with it would have been easier just for the moral support. Of course it would have been at a slow pace but of course everyone is busy with their own lives.
I am so blessed to have an awesome mother in law. I needed to take this lamp that I got from my mother (that she got when we lived in Holland and it was hand made in 1920 to 1930 in Belgium, not sure??) to a store downtown and she went with me and she drove.....:) It is not really a lamp but a chandelier of sorts, hand carved out of wood that needs to be wired and basically made ready for electricity. I can't wait to hang it up in my dining room I will post a picture when I get it up. Anyway, when we left there we went to a place called Daisy's and I of course drooled over everything. It is a place that has booths set up with different peoples wares for sale....:) I found the cutest doggie outfit for my Daisy, it is a sundress...hahahaha
It was great to get out of the house. As soon as I got home, it was straight to the couch for me and that is where I stayed pretty much the rest of the day....:(

We were supposed to go to the 2nd Fibromyalgia support group meeting last night. I was looking forward to going because I had met a friend last time and was looking forward to talking to her plus I told her I would be there. We actually got in the car and drove a bit down the road and I asked Jim to take me home. I just couldn't do it. I wasn't going to be able to sit thru it...I was so sad. We went home and I went back to the couch. I could feel my body slowly go into a dark painful hole! Kyle came by to visit and I didn't even get up I just layed there and eventually fell asleep. I remember trying not to move and that my body was going in to a full blown flare! When I woke up I wanted to crawl into a hole and die that is how bad I felt. 
Jim is such an AWESOME husband!!!!!!!!!!  I just wanted to throw that in....
Crawled up staires and then remembered that I didn't have any sheets on the bed...ugh! I was going to wash them and since I had not been up stairs forgot all about dear sweet husband didn't fuss just took to making the bed. I wanted to cry, I felt like such a bad wife! I barely remember crawling into it and falling asleep but I do remember waking up all through the night because of my pain. It was off the charts!!!!I didn't think morning would ever come but then again I wasn't sure if I wanted it too because my pain seems worse in the day. Finally I couldn't take it anymore and I got up and took my major pain pill about 5 a.m.
I am the one who gets up with Daisy and takes her potty and feeds her and Gizzy while Jim gets ready for work. I take my pain meds then me and Daisy usually go back to bed for a bit. This morning I couldn't do it.....I hate that Jim had to do it!!! I don't like feeling useless as a wife or as a person!!

The good news is I am starting to feel better....:) Of course I have been laying down all morning doing pretty much nothing......

Talk about feeling useless...for the last 3 years I have been in charge of something at our church called J J J , Juice, Java, Jesus, starting at 9:30 for our visitors we have coffee, pastries and fruit.
What I would do is ask members of our church to bring things each Sunday, well I am not doing that any more. The past couple weeks it has been hit or miss on our table and people that say they would bring things forget or just don't bother. Well, that reflects bad on me sooooo I have decided to pass this on to someone else. It is church and I can't say anything to the people that "forget" so it just looks like I am being slack! When I told the person in charge of this area that I was stepping down I thing she was relieved!!! I wanted to cry!!!! There was no, why???? Just an ok, I will find someone else to do it, I know you don't need the stress!!! I CAN DO THINGS PEOPLE!!!!! I AM NOT USELESS!!!!! I ACTUALLY USED TO BE A VERY IMPORTANT BUSINESS WOMAN!! I COULD MULTI TASK WITH THE BEST OF THEM!! I HAVE A BRAIN....IT REALLY BOTHERS ME THAT PEOPLE THINK I AM AN INCOMPETENT PERSON, SOMEONE THAT CANNOT BE TRUSTED TO DO WHAT THEY SAY THEY WILL!!
Yes I am ALOT slower than I used to be! Yes I might have to ask questions more than usual, but I am sensitive and I do realize that people wonder if I am capable of doing things and the answer is yes I can!!!


Boxes and Secret filing places

Boxes and Secret filing places,

                I know I know here he goes again writing about some crazy analogy  that makes no sense,, but ponder it with me and give me a little lee-way and it may all come together in a paragraph or two.

Have you ever seen Indiana Jones Raiders of the Lost Arc? At the end of the movie they take the arc and put it in a box in a warehouse  with what looks like a million other boxes with what  looks like only one person knows where it was placed, he drives off for it to never be seen again.  I wonder if this is what Fibro does to people it boxes things up and store them some place we just can’t seem to find. We wonder the maze trying to find, our old spunk, the joy in life, the sense of humor we had, our out going social personalities, the energy we had, the enjoyment we had in that one hobby that we can no longer do.  The list goes on and on, and I did say we, as I truly believe I am going through this with Lynn.  We wonder the mazes of the boxes hoping that we can unlock one.  We see a box labeled long rides on the motorcycle, we wiggle and giggle the lock but it wont open and we long for those old days, we move on to the box of playful fun and conversations and it is locked tighter then the other box.  I can go on and on how each of the boxes wont open or will be locked loose enough that we can peer inside and get a small taste of what it was like, you hear a song and it takes back to that place, you smell a smell and you are in the middle of the Caribbean ocean soaking up the sun.   

                But what I am finding is that occasionally a box will be left unlocked for us, may be for a few hours and it may be for a few days, it is on those days that I hold tight for it is for those days that I look forward to.  We don’t know day to day if a box will be unlocked or if we will just be peering into it.  But I do know that I cherish walking hand and hand with you Lynn, looking for the day we meet the guy that holds all the keys and he unlocks those boxes for us forever. And until that day understand I am holding you tight and am happy to be on this journey only because you are with me…………….

Thursday, February 9, 2012

Clear blue water and warm sand between my toes..

I am laying in bed right now and looking out my window and I see a beautiful blue sky, now all I need is to be sitting on a beach chair looking at crystal clear blue water and feeling the warm sand between my fingers as I put my hand down beside my chair....:)
Then maybe just maybe I wouldn't be hurting so much!!!!!! I don't honestly know what it is about the beach but for some reason I don't hurt as bad when I am there. To feel the sun beating down on me it just seems to suck all of my pain away...I know it sounds corny but it is sooooo true!!! I mean I have had some bad days at the beach and come to think of it I have had some bad weeks at the beach but that being said a bad day at the beach is still a good day.

Well I didn't walk yesterday but I did make it to the Y and ride the bike. I don't know what is going on, well yes I do FIBRO and all the garbage that goes with it!!!!!!! I have had no energy lately! What people don't understand when they see me is what it takes for me to get up and go. I have to MAKE my body get up!!! It is sooo hard to explain and the only way I know how is the flu explanation....imagine you have the worst flu ever and you have NO energy and your body just doesn't want to move. That is how I feel EVERY day and I HAVE to make my body move which means I am fighting against the urge to lay down or sit down all the time. That is enough to make anyone tired, hahaha! People see me and they have NO clue what I am dealing with on the inside!!!!! That is the most frustrating thing about fibro!!!! I have got to fight this!!! I cry every day that I don't exercise! I don't want this body! I know it is wrong but I am so jealous that it is sooo easy for all my friends to stay healthy...I am sure people think that because I don't work I should be able to stay in shape with no problem....ha!!!!! I would not wish this on anyone!!!!

I have noticed that my hands are getting weaker....:( I am having a hard time opening things which I never did before????? If my arms are tired, forget being able to write. I actually had to have a friend write something for me the other day because I just couldn't do it! I wanted to cry but didn't want my friend to see me. I don't think she would have understood....this sounds bad but I don't like to cry and have someone look at me like I am weak!

I had an awesome massage last night!!! I will be asking for the same lady next time.....she knew exactly how much pressure to apply and used a lavender wrap on my face to relax me and o did it work!! Loved it!! Jim took me and while waiting to pick me up he went to this mexican rest for a drink and while there he discovered this young man singing, he taped him so I could hear him and he is really good. He sings songs from the 70's and the 80's which we both love! Sounds like a date night to me...:)

I know I am complaining about all my pain and being tired and it really sucks that I hate my body! I hate that I don't feel healthy.....I will have a few good days then have a bunch of bad days that wipe out my few good days....I could handle being in pain, I could handle being tired if only I felt healthy in this body!! I look in the mirror and don't like what I see....

I am  sooooo very blessed to have an AWESOME husband!!! I thank God every day for him and want to be the wife that he deserves. I want to be the wife he fell in love with!!! Jim is my hero, my best friend, my life, my love!!!
Fibro doesn't just affect me it affects Jim in soooo many ways and is just as hard on him as it is on me. People do not realize this and do not realize what stress it can put on him too. I am so sorry babe!!! I never meant for this to happen!!!
I pray every day that you will find someone that you can talk to about this. Another husband perhaps over a beer once a week....:) I know how much good this would do for you...know one ever asks how you are doing???
 I am just tired of feeling bad and am ready for this slump to be over!! I want this weight off sooo bad and want to get back to working out but when I have a body that fights against me it makes me so frustrated! When I rode the bike yesterday for 30 minutes it took every ounce of my being to do it!!! The highest I went up to was a 4....come on, that is chump change and that killed me!!  I AM OVER THIS!!!!!!!!!!! If people could only see inside of me I am not fine!!!

Ok I am going to end this because I am done and am going to focus on getting in the shower....that could take about 2 hours.....hahahahaha                                                                                                    

Wednesday, February 8, 2012

Best part of the day...

O well I didn't take Daisy for a walk yesterday. My friend got stuck at work.......but then again I ask myself why didn't I just take Daisy for a walk by myself? I need someone to motivate me, get me going! Well today if my friend can't walk I will take Daisy for a walk, it won't be as long but it will be a walk though....:)

I did have a bright spot to my day was a brief period in time where I would swear time had gone back 8 years. Jim came home for lunch and before he left to go back to work we had a moment and it reminded me of when I was feeling good!! I laughed and giggled and it was over something silly, Jim was playing with my face making silly noises. Trust me it was a moment and I can't get it out of my just made me smile and laugh and it made Jim smile....I will take it!!!!!!!!!!!

Today is going to be a good day.....I just hope to get past this major hip pain!! It has been waking me up but today is the worst yet. Both hips are a 10 on the pain scale........maybe a massage is calling my name....:)

Tuesday, February 7, 2012

Good news.......

I am happy to report that Social Security has seen fit to continue my disability......:) with the right to come back and review my case again??? I am very happy, relieved and yet sad at the same time. I NEVER thought in a million years I would be this person I have become.
I was on fb last night and was talking to a young lady that used to work with me when I was a district manager for Claires. I started thinking about the old me and how much fibro has changed me. I have really been missing the old me alot lately!!! I was a district manager for 15 years, I worked hard, I worked alot and I was good! I can honestly say I had some of the best managers thru the years and was proud to see them grow....I worked along side some of the best district mgrs and some of my best friends.....I will love them forever!!!

This past weekend I woke up and just wanted to role over and snuggle with my hubby but my body was not cooperating with usual! I am sooooooo tired of waking up and it taking me about 2 hrs to get my body and my mind going. There is a commercial on tv and it shows this couple and they are eating breakfast in bed and they look at the alarm clock and they playfully roll around in the bed....every time I see that I think about when I was healthy and Jim and I would wake up and start our day with laughter and smiles too! I sooo miss the old me and I know Jim does as well!!! When I wake up it takes me about 2 hours max to become at least some what human..:(
Then once I am human it can take me a bit longer to get going...I move so slow these days, my body movements are slow and I HATE IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyone that knew me 8 plus years ago knows that I could run circles around anyone and I could look good doing it...haha!

Sooooo I am going to try my best to do what I can to make myself feel better...I had lost 30 pounds a couple years ago after being on Lyrica and was feeling pretty wonderful. I think if a person feels good about themselves and likes what they see in the mirror it can really help with all the pain and all the other garbage we deal with! I have put 10 pounds back on and with my short body it feels like 40 pounds. (include a bad case of IBS and feeling terrible in the middle and I feel like I have a 40 pound brick in my stomach to boot) I keep seeing these ladies on tv or in a magazine and I can remember feeling the way they look. Does that make sense? I have a skinny person (ok a somewhat skinny) trying to get out of my body..SO WHY CAN'T I STOP EATING SUGAR? I hate that my will power is in the toilet!! I will talk to myself everyday! Tell myself don't do it and then I do it anyway! Is it my
pain? I have got to get off of this rollercoaster ride once and for all...summer is coming and I do not want to wear a one piece bathing suit! I have a membership to the YMCA, so why can't I make it there everyday? I know that my energy level is in the toilet but if I could just get on the bike.....I mean being able to sit and pedal....what more could I ask for? But I am going to be taking Daisy for a 2 mile walk today...:) probably all I will do today. Thank you Jennifer and Bella...:)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      

Thursday, January 5, 2012

Happy New Year

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 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?????