Saturday, August 20, 2011

It's Just the Way Fibro Is

I was shocked when I saw that it had been ten days since I wrote the last post!  I’m not sure why I was shocked because the last ten days have been the usual fibromyalgia ups and downs.  My pain has been higher than normal at a Level 8  instead of my usual Level 4 or 5.  I’ve been trying to pinpoint something that I did that may have started this flare so that I can avoid that in the future.  In true fibro fashion, there is nothing that I can think of that caused it.  It’s just the way fibro is.

I have got so much that I need to be getting done and just don’t have the energy for it.  I’ve said lately that being chronically ill is like having a job.  I just got a certified letter from my Long Term Disability carrier saying that my benefits are only approved till October 28.  While they admit that I cannot go back to my job as a paralegal, they are reviewing my file to see if there is any other job that I can hold.  It apparently doesn’t matter if the job is nothing remotely like what I’ve done before or doesn’t even pay what my benefit it. If that wasn’t enough to make me nervous, my doctors haven’t sent them the requested records.  So Monday morning, I’ll be on the phone begging the docs to send my records in. When the adjustor told me how my former employer had the policy set up, I felt like once again the company was pulling the rug out from under my feet.  One of these days, I’m going to write about my last year at work.  I will always feel that my supervisor had decided that I didn’t “fit” with the rest of the department and used my illness to get rid of me.  Since I have my appointment with the Social Security Disability doctors August 30, I hope I’ll have my SSD approved before they try to pull my LTD benefit check.  Without either my LTD benefit or a SSD check, we will lose our house. My illness has already forced us into the Home Affordability Program.  If you miss a payment when you are in the program, they start foreclosure.  I see no way around that.  Where we will go or what we will do is something that I refuse to think about.  I prefer to pray for God’s direction and His blessings that if my LTD benefit stops, my SSD will start.  All of this emotional and financial strain is just the way fibro is.

Financial problems are nothing new to those of us who are disabled by our Fibromyalgia.  Each day, some of us have to decide if they will have their pain pills refilled or buy groceries.  Some of us who are still working way beyond the time that they should have stopped, has to decide if they can go on for another day, week or month.  Some of us have our bodies make that decision for us when we literally can no longer put one foot in front of the other.  I don't understand how Social Security Disability can justify not having a category for Fibromyalgia.  They have to see how many people are effected by it based on the applications that they receive.  We've worked and paid in to the Social Security system. Why do they make it so difficult for us to get the financial help we are due.  Most of us live a two paycheck life.  When one of us looses that paycheck, it sends our whole world into a tailspin.  Facing the financial unknown causes so much stress that our pain skyrockets.  How do you make responsible decisions that need to be made right now when your pain is off the charts? It’s just the way fibro is.

Mr. Supportive and I have tried to explain fibromyalgia to an older family member many times.  This person believes that I am in pain.  At the same time, they don’t understand that the pain is always there, sometimes better, sometimes worse.  Whenever we talk and I say that I’m more tired than usual or the pain is a little worse, they want to know why.  They ask if I went to bed on time, what I did do make it hurt more.  For several years, I tried explaining it each time.  I no longer have the energy for that.  Now I say “It’s just the way fibro is.”

3 comments:

  1. I like it when you post in the large font please - easier to read and easier is what we all need. thanks.

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  2. I like this as I too am sick of explaining chronic pain; i will use it "just the way that fibro is" (found you on F Bloggers Directory)

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  3. I ALSO SUFFER FROM FIBROMYALSIA, CHRONIC FATIGUE SYNDROM, DEGENERATIVE DISC DISEASE, AND ARTHRITIS. I WENT TO MY SSI HEARING YESTERDAY. AND I WON. IM SO RELIEVED, AND HAPPY WORDS JUST CANT EVEN SAY.ITS BEEN 2 1/2 YEARS.THE JUDGE MADE THE DECISION ON THE SPOT . ANOTHER GREAT RELIEF.BUT I HAVE TO TELL YOU, I WAS VERY SURPRISED AT EVERYBODYS REACTION TO FIBROMYALSIA THROUGH THE WHOLE PROCCESS.SO MANY PEOPLE, INCLUDING DR.'S WHO BLOW IT OFF LIKE IT ISNT NOTHING.I WISH FOR JUST ONE WEEK THEY COULD GO THROUGH WHAT I GO THROUGH AND THEN SAY ITS ALL IN YOUR HEAD. NO,...MY PAIN IS THROUGH OUT MY WHOLE BODY. NOT MY HEAD. ALONG WITH ALL THE OTHER SYMPTOMS OF FM.AND THERE ARE PLENTY. I WAS JUST SO SHOCKED AT HOW LITTLE PEOPLE KNOW ABOUT IT. INCLUDING DRS.THEY DONT EVEN RECOGNIZE THE SYMPTOMS.TRUE FM PAIN AND SYMPTOMS ARE VERY REAL.THE WHOLE WORLD NEEDS TO WAKE UP AND BE EDUCATED ABOUT IT.THE APPROVAL DECISION IN MY CASE WAS ACTIALLY SEALED BY THE ARTHRITIS IN MY HANDS .WHICH CAN BE VISABLY SEEN.I THINK I MIGHT HAVE BEEN APPROVED WITH JUST FM BECAUSE OF MY WORK HISTORY AND THE FACT I HAD TO LEAVE A VERY GOOD JOB.BUT IM NOT POSITTIVE OF THAT.ALTHOUGH, FM PRESENTS A MUCH MUCH WORSE PROBLEM FOR ME THAN ARTHRITIS.IT CAUSES ME MUCH MORE PROBLEMS.ITS TIME EVERYBODY COMES AROUND TO THE FACT THAT FM IS VERY REAL. AND ADDRESS THE ISSUE AND TRY TO GET UD A CURE OR AT LEAST, SOME RELIEF THAT DOESNT COME WITH AWFUL SIDE AFFECTS

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