I called the doc's office today about not being able to manipulate the wheelchair because of my shoulder and spine, not being able to get it in andout of the house or in and out of the car. They were really nice this time but said that probably the only way that they would do anything more for me is if I am considered too disabled to even drive any more.
I can drive. I just can't lift that chair. I couldn't if I didn't have RA. But that's the only way to get ramps in place, get an electric chair. That means I have to call for a ride for anywhere that I have to go which means a lot of waiting and always planning days in advance.
I love to drive. I used to go on long road trips with my kids just for adventure and fun. I grew up in New Mexico where going a 100 miles to see your aunt was no consideration. Or, 200 miles to see your grandparents. I love the going up and around the mountains, flat across the desert, seeing some new place.
I like spur of the moment, just go. I haven't had that for awhile and it looks like it will be gone forever. I guess they will be taking my driver's license away.
When I get better, I'll probably have to fight to get any of it back.
I DON'T WANT TO GIVE UP DRIVING. Why must I do this? It's because they have made me too poor now to afford anything. If the insurance doesn't pay for it of some other organization, then this is my only choice.
Today, I hate RA and all the multiple illnesses I have. I'm going to pout and cry for awhile and then find some cruise for wheelchair people. I'll roll back and forth on some ship and see the ocean and every port that I can go to.
Deanna, hang tough, for God sake do not give up driving. It'd make you very unhappy. Fight like h..l! I think they try to make it easy for themselves. Fight for your rights and needs. Get very angry! They have no rights to tell you to give up driving. You are capable of driving and just need help with ... whatever help you need! Fight girl! sorry for sounding angry and I'm angry ....! Fight for your independance!
That is a wonderful idea. A cruise for wheelchair users.
Deanna, This can't be right. They cannot ask you to give up driving. That is your only independence. I gave up driving and it depresses me every day. I keep hoping I will be able to drive again. This is all wrong. I would call doctor's office back and say that is ridiculous and then try charities to get your car to accomodate your wheelchair and get a proper wheelchair. This sounds crazy. There has to be a way out of this.
I slept 8 hours during the day yesterday. This stuff exhausts you - I know. Don't give up babe - get another doctor or get your physical therapist to brainstorm with you. LOVE
Dear Deanna.... Why do you have to give up driving? I have a motorized chair since my shoulders and wrists are badly damaged and I can only walk for maybe 200 feet with a platform walker. I got my chair last November (took a while to get it). I bought a handicapped van the same month. I can operate the ramp myself, I drive up the ramp, go into where the passenger seat was (I can put it back in anytime), transfer into the driver's seat (if you can do a toilet...).
I could also take out the driver's seat and drive from my wheelchair. The van company taught me how to drive it and would have done more, but it isn't any different from my old car, and I had no trouble.
I don't know why you have to give up driving - find out! Nobody ever asked me if I intended to drive. I go anywhere I want and do anything I want. (Private homes are a problem, but I just got a portable ramp that works fine for my daughter's and son's houses.)
Don't give up, honey... Kathy
I don't understand this either. But the doctor's office said that is the only way the insurance would pay for ramps and an electric chair. Then I am supposed to use their drivers to get around. But I have to plan everything from a day to 3 days in advance. I've watched my daughter go through this. In AZ, this can mean waiting in 115 degree weather for over an hour. Plus, you cannot plan more than one office visit in a day.
I did talk with the Senior Center. They believe that they can get me ramps, a safety inspection with includes bar for the bathroom, a shower seat and housekeeping services. They were also surprised at what I had been told. Unfortunately, the last couple of days, I have been extremely weak and not up to calling all the possible numbers that I've been given.
I was definitely told by my doctor's office that I would have to completely unable to drive in order to get an electric chair. This doesn't seem reasonable to me either.
Kathy, how did you go about getting your chair and your van. Did you private pay for them or did you have some other resource.
The whole idea in getting a chair was to increase my mobility, not trap me within my place. I don't really understand it at all. It's like living in the middle ages. And this chair hurts my shoulder something fierce. That should be enough reason.
I'll fight for all this still, but I'm getting weaker. The treatment for the bone marrow problems is making me really sick.
If you have ideas, please let me know. I read up on what Hillhoney sent, but that talked about out of pocket expenses which I have to way of paying until I get disability.
I have a list of disability organizations and advocates. I am going to go through that list. But it has been a matter of energy. I had no idea I would get this sick from going off the MTX. I think I was just really sick from the anemia and didn't realize it. Since I have got that diagnosis, I haven't felt this terrible sense of urgency in finding answers that I did before. It's like it clicked. It made sense.
I'm not done fighting. But it's very good to hear everyone's opinion on giving up driving.
Thanks.
Deanna,
I started on getting my motorized chair through my local hospital when I had my hip replaced. I needed a motor chair because both my shoulders' rotator cuff are completely shot - 3 of 4 tendons torn off and my left bicep torn off. If I reach back with my left arm to push a wheelchair, my shoulder dislocates.
First, I had to have an occupational therapist (must be an OT) evaluate me for a chair. They decide a regular obne won't do. We had all the papers filled out and then I went into the hospital; with sepsis in my hip and had to have the hip and knee removed (disaster!).
At the University they again evaluated me for a chair and decided I had to have a motor chair, but I couldn't actually get it until I was released from the hosptial, and then it took a while because it is built for you. The insurance company paid for every cent (over ,000).
I sold my car - which was paid for - and bought my van myself. I'm retired and I get SSDI and and the small widow's Social Security (less than 0) and a small pension from work. I'm praying you feel better soon so you can fight to get what you need!
Kathy, I have asked for an Occupational Therapist. They won't cover it because I am over the age of 21. That's it. That's the rule.
They just dumped this chair on my doorstep to get me off their backs.
I have no assets, no income. I can't provide this for myself.
My shoulder is not as bad as yours, but it is hurting it to try and wheel the chair around. And, my hands are in bad shape. Only, they don't seem to want to recognize the weakness there because I don't have the deformity.
They don't want to give it me because they have this list of arcane rules that need to be changed.
I'm sorry to hear you had to go through the horror of sepsis. From what I understand, we are lucky you are still alive. You have definitely been through it.
I go this morning to fight again.