I Ain't Right Story

I know I never blog about my experience with fibromyalgia often enough.  I post on Facebook more often but not enough their either.  I always believe I will and try to do better but life gets in the way.  And pain.  Pain gets in the way.

Anyway, here is my latest story.  The setup is a little religious but the story is not really.  

I like to watch a religious channel on Saturday evenings.   They have gospel and Christian music.  Afterwards they have an hour where there is someone featured.  Usually a single musician performs but sometimes a comedian.  

There is one in particular that talks about his life and how crazy it is every day.  Then he will say "I ain't right.  And God loves me anyway."  So here is my "I ain't right story".  

I have been having a particularly rough week pain-wise.  Just like everyone else with fibromyalgia I hurt all the time but there are times it is worse.  I still work so it is a struggle every day to get up and get going.  This day was particularly rough.

I usually take my medicine and wait for about 5 minutes for the pain pills to kick in so I can get dressed.  This particular morning I kept waiting and waiting.  I finally had to text my boss and tell her I was going to be late.  

My dog was whining at me.  I was trying to figure out how to get my dog her medicine.  Sometimes the simplest tasks seem so complicated.  At that point I realized I still had my pain medication and my blood pressure medication in my hand.  

I had been sitting there for over thirty minutes waiting for my medicine to kick in.  I ain't right.  FibroFog is a wonderful thing - NOT.  Fibromyalgia does things to my mind and my body.  

I hope I made you laugh a little.  Humor is a good thing.  It is healing.  What funny stories do you have?

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.  

Pushing Myself

Sometimes I push myself.  I suppose everyone with Fibromyalgia does at times.  I push and I hurt.  I push to get things done.  I also push because I feel like I am getting weaker. My muscles are getting weaker.  It would seem that using my body more would make me stronger.  Like exercising a muscle.

It does not seem to work that way though.  I push and I am down for sometimes days.  Sleep is my main relief.  But if I have to stay in bed because of pushing myself, did I really accomplish anything?  I am conflicted about this.  If I used my body and felt better like I did as a young woman the choices would be much clearer.

I had already decided to speak to the doctor about Physical Therapy to try to keep my strength.  It will have to be after the wheel chair things are finished.  I hate this weak feeling.  I hate Fibromyalgia.

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.  

Vocational Rehabilitation Approval

I have made it through the first part of the process to get a wheelchair for work. I had to be approved for services at Louisiana Rehabilitation Service. LRS is my state's Vocational Rehabilitation agency. I am surprised that this part went so smoothly.

I guess I had the right information and combination of diagnosis for this to work. Fibromyalgia, sleep apnea, RLS, obesity, and a metal plate (rod) in my arm. I do not remember what else. I also rented a manual wheelchair to see if I could do that.

 I was not very good at it but I was able to wheel it a little bit. Unfortunately my shoulder was the problem. Years ago the doctor and therapists had told me the metal plate in my elbow area would affect either the joint above it or below it.

 I am waiting to hear from someone about the next step. This seems like such a slow process. Especially considering that I am still trying to figure out how to do what I need to do at work. Hopefully I will not lose my job before this all comes together.

I Am Not Lazy

Sometimes people have real interesting views on my fibromyalgia. More accurately they have interesting views on what I can and cannot do. I do not do very many social activities. I also do not do a lot of physical activities at work. I thought I was making up for that by doing other things. Apparently that is not what other people think or more accurately see. I need a lot of down time. Even when I am not having a painful day, I still have some pain. My body does not do the things other people seem to do easily. Pain is a good marker to watch. At least for me it is. I stopped feeling like I needed to explain or apologize for what I am doing. At some point I was tired of hearing myself explain, once again, why I could not do something. I am re-thinking that because I do not want to hurt people’s feelings or give the impression I do not want to do my share. I do the things I do to stay as healthy and as active as I can. I do not want to stay home many days. I used to like going to resource fairs for work. But if I want to work at a job I love and spend time with children and grandchildren I must stay home some days. I do not want friends to be upset with me or co-workers to feel put upon. My health is a priority for me though. Pain teaches a person a lot. People cannot always see that though. I need to remember that people need to know I still am interested in them and enjoy them and want to help. What is true for me is not necessarily true for them. I do hope and pray that everyone learns to do and ask for what they need to stay healthy.

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.

More Wheelchair Business

I had the next appointment at our state's Vocational Rehabilitation. The meeting went better than I thought. The counselor at least seems open to helping me. I am still going through the process. It was just exhausting. I guess I had not thought about all the diagnoses I have. The most upsetting part was how they feed into each other. I was exhausted after the one and a half hour meeting. The counselor was very thorough. The next step is the counselor is sending a release and request for information to my doctor. My doctor has already said she would help. I will post more as I learn more.

I have not posted in a very long time again. I guess I need to write some more about what is happening to me I find it hard to write about myself. I can write about the adult children with autism easier. Well all the adult children.n I am finally at the point that having Fibromyalgia is affecting my work in a large way. I am forgetting appointments on a regular basis. The joys of fibrofog. I am also not able to get places I need to be for meetings. I need a wheelchair. The one that would fit my weight is expensive though. At least expensive for me. I also do not have any way to get another vehicle so it needs to be one I can take apart. I have found one but the expense... I have insurance with the Affordable Heath Care Act. But as close as I understand they only pay for part of it. I made an appointment with our state's vocational rehabilitation to see if they can help. I will post more as I know more. Do you have any experience on trying to get a wheelchair? It would definitely be simpler if I could pay for it myself.