The struggles of fibromyalgia.  I have been able to creatively structure my life to get necessary things done.  I have been able to structure my work to get certain parts done.  That has been going on for a long time.  It feels like all of a sudden I could not do my job.

I mean I know I have been gradually doing less and less.  Up until June 2014 of last year I could pull it together and do whatever I needed to do.  It was a shock in March 2015 when I realized that was over.  I could not do a certain things that I had to do and I could not hide it.

I started hiring someone to help me occasionally and renting a manual chair.  I still do the vast majority of my job.  I love helping families.  I just need to and want to help them in a larger of variety of ways.  That was when I decided one of the things that would help was to get a scooter.

Well now I plan to get a wheelchair for reasons I mentioned in a blog before this one.  I am just surprised that in 9 short months I went from feeling ok about what I could do to sheer panic.   My friend told me it was not as quick as I feel.  On the one hand I know she is right but on the other the transition from ok to now ok still felt abrupt and quick.  

Equipment Evaluations

I have done several evaluations towards getting the wheelchair now.  I let the guy who wanted to do the office evaluation come to my job.  He was very thorough.  He was very kind.  I cried any way.  It is so upsetting to realize how much help you need.

One of the up sides was that he was able too see and suggest so many different types of equipment which would and will make work easier and healthier.  There is a special office chair.  A specially designed key board and mouse.  

Then using the key board will position me farther from the desk so an adjustable arm and longer key board.  He suggested a pen that could record sound.  There is also a small stool so I can raise the leg that has the vascular problems.

I had to travel all the way to Ruston for the wheel chair evaluation and the transportation evaluation.   That was a 4 hour trip one way.  I opted to spend the night before in Ruston at a hotel.  It was exhausting any way.  I was away from my CPAP machine.  I also did not get to sleep on my couch at the right angle.

The team did prove to me that a scooter was not the best choice.  It is difficult to turn.  I felt bad.  I realized that I would not be able to take apart a scooter either.  The person who did the transportation evaluation did have an idea of a type of lift would work for my car.  My car is an older model.  It depended on keeping the weight of the device down.  Again the wheel chair was light enough to do .  it. 

Then we had to go through the whole packet.  That part took for ever.  They asked questions and luckily made suggestions.  I got to choose and say what I wanted.  But truthfully I went with their suggestions the majority of the time.  

Then I still had that 4 hour drive home.  I was hurting and exhausted for days.  All I did was go to work and sleep.  They all let me know when they had done their reports.  I believe the last report was finished and sent in last week.  I need to call the LRS (Vocational Rehabilation) Counselor to figure out the next step.  

Waiting

It is soo slow. I of course am ready for a motorized scooter or wheelchair today. But government agencies do not work that quickly. I finally called the doctor's office. I of course asked about the scooter. The nurse kept talking about sending the doctor's notes. I need to remember the agency I am working with Louisiana Rehabilitation Services (LRS) for a few years has been under the Workforce Commission. The Workforce Commission is what they used to call the Unemployment office. I guess it is more efficient to have employment related agencies under one roof. Any way LRS is what is called Vocational Rehabilitation in other states. Back to my story, the Workforce Commission (ie LRS) asks for the doctor's notes first to see if they can find a diagnosis. Then they ask for a diagnosis/prognosis directly. I am still in the first stage of seeing if I qualify for services at all. I guess I am concerned because I got so many of my diagnosis while my children were still young and long before this doctor. Although I consider Fibromyalgia my primary diagnosis I have many others, sleep apnea, RLS, a metal pin in my arm, among others. That is all I know at this point.