Fibro Flare..ugh

 

 

This is getting so old..and it’s depressing.  I try to put on a brave face for the most part, but I am just tired.  Tired of this fibromyalgia and all that goes with it.  For some reason I have this syndrome..did I do something in my earlier life to deserve this…no…no one gets this because they deserve it.  I guess I got it because God must think I can handle it.  And I can.  Most days.  Today, not so much.

It’s hard to explain a ‘flare’.  I get really achy, like a flu achy.  No fever, just achy..then my feet hurt.  Well they hurt most days, but when I get a flare, they really hurt…they burn like they are on fire from the inside out.  Meds, supposed to help, really don’t.  Pain pills, supposed to help, really don’t.  When I have a flare, not much helps.  And sleep escapes me..most nights.

On the bright side, a flare lasts a few days and don’t happen in any regular way..sometimes I can predict one, as we have been real busy and I haven’t had enough sleep.  Other times, they hit me like a ton of bricks.

I don’t want anyone to feel sorry for me, I am just venting.  This will pass..it always does..

National Fibromyalgia Awareness Day, May 12

 

I am doing a blog post for this special day..it helps me to know I am not alone in this daily battle with Fibromyalgia.  For some good information, check out this website:

National Fibromyalgia Awareness Day

As tired as I am of having this syndrome, I fear I am at the beginning of a very long illness..my most recent issues, aside from the body pain, has been the pain in my feet.  It’s called neuralgia and my feet feel like they are on fire.  I don’t know how else to describe it..Oh I wish I could just put on my walking shoes and take a nice long walk..thank goodness I do have days the pain is not as bad, but the bad days really hurt.  This has been a life changer, no doubt.

I am also at a crossroads with my Social Security Disability case..as most of you know, the judge denied my claim after my hearing in late January.  After all that wait of two+ months, DENIED.  Can I tell you how disheartening that was.  I wish these people in charge could walk in my shoes for a few days, it would be clear to them the limitations most of us have.  So I have a couple choices..My attorney rep is going to file an appeal..However, after waiting for another 12-18 months, the appeal hearing would be before the same judge.  I can’t even guess as to what the point of that is, but it is what it is…basically he would be hearing my claim against his decision.  That can’t be a good outcome at all.  The other option I have is filing a new claim, start from scratch and hope with the documentation that I have, an approval would be given.  I am considering changing attorneys and having one here in CA to start the new claim..I don’t relish the thought of starting over, but I almost see no other option..regardless of what I do, the appeal will go forward, as I have nothing to lose and an approval to gain.  I am leaning towards doing the appeal and hiring a CA attorney and file from scratch here in CA.

Anyway, this is what is happening…I have gotten over my ‘mad’ at the judge and at this point just feel overwhelming disappointment and sadness at his decision.  If only the folks at Social Security could spend a few days in my shoes.

My hope for all Fibromyalgia sufferer’s would be pain free days and nights..I don’t think that is too much to ask, is it?  And my wish would be for others to become informed about Fibromyalgia and be more understanding when I can’t do something.  I am blessed with a husband who ‘gets’ it, along with a few good friends who understand..that’s a lot more than some Fibro sufferers.

Make it a great day…

Fibromyalgia

Quick!  Tell me what you know about Fibromyalgia?  Well, I learn more about it all the time…I don’t like what I find and I like less that there isn’t much I can do about it.  I especially dislike that I am unable to work and what I have to do to try and get social security disability.  Honest, if I could work, I would.  I always worked up until 7 years ago and even after I first got sick, I still tried to work.  This seems to be a progressive disease.  As it is progressing. 

Went to my rheumatologist yesterday and I just came out of there as confused as when I went in.  “Well, we could try this, we could try that” meaning different medications to treat the pain.  Nothing will cure this.  On top of the fibro, I had a couple of irregular blood test results.  Don’t think I am going to kick the bucket, but probably adds to my discomfort.

The worst part for me, and has been for a long time is the lack of sleep.  Oh I am tired.  REAL tired.  Exhausted, actually.  Most of the time.  I can’t think real straight and I can’t even go to the mall and walk around, I conk out and the pain kicks in. 

I found this article on Fibro on the Mayo Clinic Website.  Anyone interested in learning a little more please read..it’s probably the best explanation I have found.

Mayo Clinic – Fibromyalgia

So..I will take my medications, and try to do stretching and what exercising I can.  But my social life is a disaster, and travel is tough.  And working is out of the question.  Now if Social Security could just help me along a bit..we are hoping for a hearing in the next couple months.  I could REALLY use some prayers as some days I get very discouraged.  I paid into Social Security for many years..honestly I miss working and the companionship and especially the feeling of being useful.

Thanks for listening and getting a little education today…I am not alone in this hideous syndrome, that’s for sure.

I am linking up  with Amanda at Serenity Now Weekend Bloggy Reading List.  Head on over and see what fellow bloggers are writing about!  And Link UP!

My Invisible Illness Story..

If I haven’t ‘lost’ you by now, humor me by letting me tell you a bit about me and my illness.

My life was pretty normal.  Until November, 2002.  I am pretty sure this point in time getting ill with Epstein Barr virus triggered the ugliness to follow.  Glad I didn’t know it at the time, not sure I would still be around if I had known how downhill my health would have gone.

Continuing, I missed about 4 months of work, during which time Carl nearly had a nervous breakdown, lets call it what it was, I almost lost him.  He was having issues at work, was totally in charge of his mom’s financial affairs, and God rest her soul, it was a mess that took us MONTHS to figure out. I got so ill.  The kicker was the passing of our 11 year old Dalmatian, Daisy.  She was his best friend.

 

We had lost our greyhound Casey the previous Mother’s Day and were still mourning her and reeling from that when Daisy passed and it was almost too much for both of us.  I was ill and did not have the busy-ness of my work to help me this time:(

Carl was hospitalized for over a week we thought it was his heart.  It was his heart, it was just HEAVY.  We talked it over and decided it was past time for him to retire.  the boys were grown, and he had put in 31 GOOD years.  He was a hard and honest worker and thinking back we probably could have sued the company for harassment, but we are not that type.  Anyway, we decided he needed to retire.  We got scared.  How could we afford our home if he retired and I could not work.  We decided to sell our HOME

 

Long story, we sold it very quickly, bought a new home, and this started the moving nightmare that lasted from 2003-2009.  We both lament the fact that we sold our HOME.  But you can’t undo what was done and we tried to move on.  Literally!

Fast forward to Fall, 2007.  Aside from lingering fatigue and tiredness from the recurrent Epstein Barr symptoms, I started getting clumsier than usual.  I take at least 3 tumbles down Scott’s stairs.  Not a big fall, but enough to skin my knees and elbows a couple times.  Ok, not great.  then the pain starts. and progressively gets worse.  I was diagnosed officially this past month with FIBROMYALGIA and MAJOR DEPRESSION.  Uh duh.

I have been trying to get Social Security disability since 2 years ago.  I am not lazy.  I have always worked at least part time.  I would like to work and bring some extra income in to this household.  I don’t feel I no longer have skills to bring to society.  I just HURT.  Everyday.  I am waiting for a hearing hopefully after the new year..Prayers are always appreciated.

My doctor has started me on some new pain meds and something called Neurontin for the nerve pain.  I have an extremely hard time walking, especially in the morning.  A trip out of town wipes me out for days. 

Blogging has saved me.  There are others out there like me!

Here is a link to a website to help you understand Invisible Illness.  Please check it out.  I hope most of my friends and family understand.  If you don’t hear from me for awhile, its not because I don’t care or love you, it’s because I am not feeling well.

Invisible Illness Week

I am so excited to be flying to Chicago and staying with my sis and brother in law at their sweet farmhouse for a week or two or three, leaving next Tuesday.  I am so looking forward to the fall colors of Illinois and Iowa.  I will miss my sweet hubby but he knows I need to go visit my sissy.

I love to hear from you all.  I understand if my illness is off putting to you..maybe you don’t know what to say or do, but I am the same Barb just in a different body.  I still like to laugh at the same things, I still like baseball, I still love my husband, sons, daughter in love, family and friends.  It’s just my body and health that has changed. 

Please read about Invisible Illness.  And I love you all:)