Not me ~ but just in case.


“I am NOT going to end up on disability”

“I will do everything in my power to keep that from happening”

These are two quotes you will hear me say.  I do not wish to offend anyone on disability.

I have a lot of friends that are on it and well deserved so.
I do know it is not anyone’s choice to be so sick and in so much pain that they can no longer work.
I do know those on disability would rather be well and working.

If you know me or have been reading my blog you know that I am a planner.

I currently read approx. 7 online support group pages.  There is not a week maybe even a day that goes by that the topic of disability is brought up. Often it is about being denied or needing more documentation. I know absolutely nothing about applying for disability, the requirements and what that means once denied or approved.

The one thing I do know is that I need to have a well documented health history.  I decided that I would begin to keep a very detailed medical log not only for myself but to create a family history for my daughter.

                                               How do I plan on organizing all of this data?

I think most people would mean to start keeping track of their medical history over just the past few years and forward.

Not me, I filled out the medical release forms going back to 1995 from my GP, dentist, chiropractor, hospital, and 2 Rheumatologists.

I read each and every page, noted important dates and made a timeline.

As I went back in time, I saw all of these symptoms that I had complaining about for such a long time.  There were so many signs that I had something wrong for most of my adult life.

purple folderI bought a thick 3 ringbinder(purple)  and added our Warrior emblem.  If I am going to do this it’s going to be blinged.

Each specialist has their own tab with their business card/contact information.

The first page states date, current diagnosis, & medication.  The second page is my family history.  The third page is a very simple timeline showing when I started seeing doctors for each symptom and when I was diagnosed.  I am going to create a summary page showing the medication, dosage, the doctor who prescribed it and for what symptom was it treating.

I began to really struggle with sheer exhaustion. Not the typical tiredness. This was much more.   I was sent to a Neurologist.

I felt so prepared to answer all of the typical appointment questions.  She started firing questions at me and I had all of the answers right there in my purple folder.

“What meds are you on?”, “Why are you here?”, “What have you been doing?”, “How long have you been diagnosed with each illness?”, “Do you have any family members with this or with that?”

She decided to send me to the lab for an entire “blood work-up”.

The results arrived in the mail and as I read them I saw some results that showed certain levels high.  I looked back in my binder and saw that all past blood tests showed the same results and every time that they have checked – the Doctors always mark high but state they are fine.

I googled what that could mean.  It could mean that I am anemic (low b) or experiencing liver problems.  Are these things that can be ignored?   How any times have lab results been sent to me and I just read the top of the results that said everything is within range without even knowing what all of the data means?

No matter what is found.  I felt better having my life’s health history in a 3 ring binder.  I had documented proof of my symptoms.

I was sitting here thinking ~ I am so organized and prepared.

How should I conclude this blog?  I can’t. Not yet.

It struck me.  How many of my fellow Fibromites who have just been diagnosed have any idea what to records to keep.  What they should be doing to prepare for doctor visits?  Have to organize their files? What about what to do when it becomes difficult to keep working?  How do you prepare for the future?

I have my medical records highly organized and I still know nothing about disability, the requirements, what happens if denied or if awarded.

I need to educate myself.  I want to understand so that I can help others when they post their disability questions.   It is going to take a lot of time and reading to understand.  I need to add this information and more helpful sites to our page. I found a few sites that will give all of us a good start.  If you know of any good sites to help others log their information and help in their research.  Please post here as a comment and I will add to our page tabs.

It is my hope that the work of organizing the past, researching  &  preparing for a future fight for disability be a complete waste of time.

I will continue to be an educated, prepared ~  Fibro Warrior ~ Living Life!!
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5 thoughts on “Not me ~ but just in case.”

  1. Just an FYI.. Disability requirements differ from organization to organization.. from country to country.. and even within the country, different levels of disability & their requirements exist..

  2. It’s helpful to keep track of work absences. The days, symptoms, what you were unable to do. Ultimately, to determine Disability, the Courts want to determine your capabilities. With FM so variable, it helps to show details of what those symptoms mean in terms of the job. No one does this so don’t dig up history, but it will be powerful moving forward.

  3. I want to thank you for this post..I was just diagnosed in June..and was thinking I need to keep a journal..but now I realize..I need to do more…thanks so much

  4. I am going to start a journal as well. I have been waiting 15mos for disability. When I started the process, I had no idea how difficult it is to remember all the details. Unfortunately, it sometimes depends on the states docs, who see u for 10mins.. but the journal is a good way to track the good and bad days.. Thx, Mel

  5. Sheila is so right. Tracking how this stuff effects your ability to work is really the most important aspect of the disability claim. And not just that, but also how your FM — and other co-occurring problems — effect your daily activities. I would suggest that you look at or even print out the application and look at the questions they ask to get a better idea of this. Keep in mind also that SSA just modified or rather expanded the requirements for FM to include evidence of co-occurring problems such as fatigue, insomnia, TMJ, and other stuff. I just had my hearing after 2 denials. I have an attorney (which I highly recommend). Your post is very helpful to me… I only wish I had this suggestion 30 months ago when I first applied for disability. Thank you for all your work to help other FM warriors!

Looking forward to hearing your comments!