Now I know that most people will read this and say that they get like this some days and it is just part of getting older and then laugh it off. Trust me it is not the same on soooo many levels! I can't explain it here but for those of us that suffer with fibro, fibro fog and CFS, we get it!!!
January 7th*************************************************************************
The reason I am writing after sooo long is that I am totally blown away by our social security - disability system. Did you know that they think fibromyalgia can be cured??? Well they do and I am proof that they do. I was approved for disability a couple years ago and then I received a letter in the mail about 2 months ago saying that they are reevaluating my case to see if my symptoms have gone away. Not the exact words but the words they used did state to see if I was cured!! As usual I had to fill out a bunch of paper work, Jim had to fill out paperwork and now they have me going to see a doctor that they have appointed. The doctor is at a walk in clinic....I did ask if he knew about fibro????I am curious what he does know??? Disability is saying that they need his medical opinion in order to help make their decision!!!! How can a doctor that meets with me for a short time that has never met me make such an important decision???
They don't see me on a daily basis....they don't see me laying in bed for 1/2 the day, they don't see me jump when my husband just gently rubs his hand on my skin, they don't see me take daisy for her first walk in the park then come home and go to bed for 3 hrs, they don't see me wander around the house because I don't know what to do with myself from hurting so bad, they don't see inside my body when I have to JUST get out of the house so I run a few errands and the pain in my ankles is so bad it feels like they could snap! I hurt sooo bad but I need to move because sitting still or laying down just kills me. They don't see me hobble down stairs to take my pain meds in the morning (o how i am learning to hate the stairs in my house) there are many mornings where Jim has to get my meds for me.....when I go down stairs I have these 2 very precious animals that want to be fed and 1 that needs to be let out to go potty...I hobble outside and all the while praying that daisy will make it quick. They don't see me after I have taken my meds (if I was able to go down stairs) go back up stairs and crawl back into bed and stay until at least 10:00 / 11:00 depending on how bad I feel. If while in bed I have to go potty well then I am in trouble because I am more likely not going to get up. I am so blessed because daisy has gotten into the habit of coming back up stairs with me and crawling into bed with me...YEA!!!!! They don't see the pain in my hips. I have had shots twice in both within a year. As I am typing this I keep moving my legs because the pain and the burning in my hips is so intense!! They don't see me when my hands, arms and shoulders hurt so bad that sometimes I can't even hold things....My hands get so weak, the tinging feeling that I get in my hands...... They don't see me not take a shower for 2 or 3 days because I am hurting so bad or just thinking about the energy I will have to use to take a shower....My standard wardrobe is workout pants and t-shirt. They don't see me get out of bed about 10 - 11, roam around the house for a bit ( I am usually hurting but can't stand being in bed anymore) Jim will come home for lunch and then I will try and go to the YMCA. Sometimes that happens and sometimes it doesn't.....:(
They DON'T see the PAIN that's in my body 24 HOURS a day, it may be a 3 or a 10 but trust me it is there!!! Right now as I am typing this my pain is about a 7! My legs, necks, arms and my ankles are killing me!!
I could keep typing and typing about how much I hurt every day but you still can't see it!!!
I can talk about how I don't remember things from moment to moment but unless you live it you really won't get it! It is not like a "normal person" forgetting something! I will be talking about something and then all of a sudden a brick wall will go up in my brain and NOTHING / NO thought is going to get thru!!
My body crashes are happening more frequently. I am on a new medicine that is supposed to be helping me stay awake. In a way it is helping, by that I mean I am not taking as many afternoon naps but my body still shuts down thru out the day without notice. The really bad part to this is when I am driving!! I really have to pull over when this happens!!! When I say I can't keep my eyes open I mean it....I can be walking and this happens. This has been happening for the past couple years just more and more....hahahahahaha.....I was talking to Jim for a second just now and in the middle of me talking to Jim my words start to slur and I slow down and start to sound like a recording that is going bad....like the battery is dying. Then my eyes start to slowly close and then that is all she wrote and I am out for a bit!!! I can go days with out this happening I think. I really need to start writing this down to see if there is a pattern?????
I can keep typing about my life and unless this doctor that is going to see me today or the people at disability live it they will NEVER get it!!!
I do have good days but my good days are never as good as their good days are....
When I first started blogging I wrote about wanting to be able to wake up, jump out of bed and have a spring in my step.....I am still waiting for that to happen!!!!
I am now going to be all over the board.....it is a rainy yucky day outside and I have pretty much been in bed all day. I have a huge pile of clean unfolded clothes beside me that I keep looking at....maybe I will fold????? My sweet daisy has been such a doll today...I know she wants to go outside and she has been so patient with me today...
I am going to end this here and my next post will be more positive.....here is hoping!!
I have high hopes for you! I will keep you in prayer and know that I am thinking of you!
ReplyDeleteI hope you take a copy of this to the doctor for him/her to read. It's from the heart and the same daily routine so many of us take. Best of luck to you.
ReplyDeleteHey, Lynn, I cannot believe they are reevaluating your case! If this specific doctor is worth his salt, he will know, as most expert medical professionals know, THERE IS NO CURE and I would challenge his conclusion if he deemed it so!
ReplyDeleteIt is a slap in the face to even doubt your condition! I realize, as well they should, if they review your history, you would give anything to be back in the work force! I keep you in my prayers, Lynn, and on days of reflection,thank God for Alexx becoming part of our family, you brought up a wonderful lady and I am proud of her every bit as much as I am proud of McKinley. Be patient, as much as possible!Things have a way of working out and I feel the correct decision will be made with your case. Of all of the fibro people I know, disability has been approved. Take care and God bless you and your family.
By the by, this is Leigh!
Filing for SSDI for fibro, CFS and similar diseases is an uphill battle. Just because the symptoms can't be seen on scans doesn't mean it's any less debilitating. But there are lawyers who specialize in helping individuals with their cases in filing for disability, and they do make the process easier. How are things with your SSD now?
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