Doc and I duked it out today. I actually saw the doctor, not the NP. Both the doctor and the neurologist do not want me to go into the wheelchair because they are afraid that I will be much worse off in 6 months if I do. He wants more time to work this problem out.
He wants me to stay out of the chair as much as possible so that I don't lose joint mobility. Of course, I wanted to know how am I supposed to do this with my shoulder and spine problems.
They already have me scheduled for PT which I start right after Christmas. But he is giving me the time released morphine because I need more pain control. I gave in on it. And, I can use Vicodin for break through pain. My RA, in his opinion is just that bad.
Also, he doesn't see how I could have MS and RA. I know several people do. So, he is thinking it is Neuropathy.
He marked all my concerns down in his laptop including seeing a Hematologist and the concerns of the Opthmalogist.
You know if I got the opportunity to work this hard at being a health nut, I would be formidable.
So, I gave in for the time being on these two subjects because the doctor did take the time to explain, which he said I did deserve an explanation.
I certainly don't want to permanently reside in a wheelchair if I don't have to. But he still doesn't get what it is like when you cannot do the simplest of tasks.
But this guy held his own with me and that's saying something.
My mom said I probably scared his NP. Hee-hee, I just love that thought, man running out of room afraid of little crippled patient.
My RD has a grudging respect for my intellect and holding my own with him. Sounds like this guy reacts to you the same. Good for you. Once you start a more effective pain control you won't have to use the chair as much, if at all. Gotta keep it moving, girl. I keep telling myself that all the time. All in all this is good news. PT starts, more effective pain control, and a doc that's listening.
i was on crutches for awhile untill wrists and shoulders went bad and i couldn't use wheelchair by myself. i made myself walk again, it hurts but i had no other means to afford a power chair without insurance.i hope pt can help u get around better and as far as things u do daily just do what u can. i have learned to do things differently at home but i know its hard still to adapt.when i get my ssd i will get a lift chair to help me get up. i know about ssd too its been 24 long months for me and after seeing their judge he found me disabbled,now i'm waiting for them to contact me about payments. hope u do get ssd soon and lawyers can help with that. hugs deanna. and take careI am willing to work my way back out. But I do not want to fall and break something in the meantime.
Alf, your story is far too familar and it really scares me because 24 months seems to be a common story. How did you survive the financial burden of that? It's only been since August since I filed. The thought of living like this for the next 1 1/2 seems impossible.
I do understand Deanna as I can go out very little and only with hubby. My doc and I settled on something in between a wheelchair and a walker called a walkabout. It is a very stable walker with great handles but turns into a seat that can be pushed by someone and has a basket too. It is not meant for the patient to push themselves as my hands and shoulders cannot do that. I could never do many things with my family but this will keep me moving, which I know I need, and I can sit when needed as well or in long lines it becomes my own chair. It folds up for transport and insurance/medicare should pay for it, about 0.I wouldn't mind a walkabout. I spent 5 weeks for a request for a walker and finally changed the request to a powered chair. They literally just dumped it on my doorstep.
I wonder if I could handle that though. Standing is a big issue. Knee surgery coming up. But I like the idea of being able to sit if I need to and the fact that they have a place for you to put stuff.
Maybe I could ask about that.
Deanna, I don't mean to scare u about ssd, maybe in your case it will be faster but in mine they never saw me but sent me to a state doc that said i could work.that was over a year and ahalf ago but after judge saw me and records and how bad i was he gave me ssd from nov 2004.to live i had to sell land that was willed to me and beg borrow money from family. seems like they try to starve us into working even if we cannot do it.i have seen some on ssd that can do anything and not sure how they ever got it at all.i know its hard and depressing waiting for them to do anything,i'm still waiting for them to call and start my money.for awhile i just laid around feeling bad for myself then i got mad and made myself get up and move around untill i could walk again.i pray that u will get ssd faster then i did and hope u get better soon. another reason they gave me was i was under 50 and they don't like to give ssd under that.Isn't that ridiculous that age is the determination of disability. I am worried about how long this could drag out. But the point is that no matter what I still cannot work. I kept working and hurting myself to the point I was becoming afraid that if I continued I would not even be able to take care of myself. All my income was going to medical bills so that there was no cushion to live off of when I quit working.
Yes, they do try and starve people out. And, they financially ruin them. It is horrible what happened to you. I cannot believe this is how we as a country choose to treat those who fall ill. It's not like Social Security is some big financial prize like the lotto. You are essentially trapped in poverty unless you can find a way off of it again.
If you already got a ruling in your favor, then you should call and ask them when your benefits start.
I cannot get any kind of answer out of them regarding my case, only that it is in process. I have seen a doctor for a mental evaluation. I have years of medical documentation including lots of xrays and MRIs, cardio tests, pulmonary tests. And, now I need to update it all again.
It is depressing and exhausting. I don't feel up to fighting. But what other choice do I have? I do feel very angry about so many things and that I wish was different.
But I've tried to explain to friends what this like and just like they don't understand RA, they don't understand the humilation of the process we must go through.
Hang in there because you've made it to a major milestone. But I know it was at such a terrible cost. It shouldn't be like that.