I'm seeing my doc on Thursday regarding all the problems I have been having. I've been seeing him for 6 years now. But this last week, when I couldn't get his attention to my hurting my knee or answering any questions about my meds or flare, I am a bit frustrated.
I am particularly concerned about whether I am going to get the same treatment when I go in to see him. I don't think the Enbrel is working for me and I can't go back on the Remicade because it's not covered on my insurance. What else could he try next?
I talked him into raising the MTX back up to 8 tabs a week which I start doing tonight. But he won't let me increase the prednisone and I really don't blame him for that.
My right shoulder is increasing in pain just like my left. It's like all my joints are going haywire at the same time. Actually, my ankles also hurt, but they are so far down on the list of pain, I almost forget about them. They look like a couple of spare tires, and my feet are red and swollen. But they certainly are not as bad as some people's.
My real worry is that I want to know if he will support my going on disability, even though I am not quite sure about that decision yet.
Almost, Roxy, I wish I had someone to tell me to just quit working because I know I'm doing very poorly but don't want to quit. One day, I am sure I should. The next, I feel a bit better or more financially insecure, and I think I can wait a bit longer. This is such a hard decision.
Strangely, my fatigue is less. Or maybe it's just the pain and the Vicodin keep me awake. I can't hardly sit still or lay down. But then I can't do much else. Walking is really impossible.
Deanna, It never hurts to get a second opinion. Do you have another RD on your insurance plan you can just go to for one? You have been having so many problems lately, that maybe your Dr just isn't "hearing" you anymore...I don't know. I'm sure there is. But all the best rheumys in town seem to work for the same group. I think he has been swamped. But that's not a very good excuse.
If I don't get a good answer and a better plan, I guess that is what I will have to do next. He may be thinking that I am not being good in the fact that I am not completely working from home.
But he can't have it both ways. If he thinks I can't work, then he needs to be willing to support me regarding that. If he thinks I can work, then he needs to provide treatment that will allow this. But every time I've seen him for the last two years, he has mentioned how I should only be working 20 hours a week and only at home.
Well, that gets me nowhere. Now, with the surgeon saying I can't even do the work I'm doing any more, it kind of throws out the work at home.
I feel a bit boxed in. I wish I was brave enough to just quit, file for disability and see what happens. I really need his support on this. I just have to make that clear. Even if I wait to stop working a bit longer, I have to know he is going to support that.
Plus, I still wish he could make me better. Why don't my joints work right?
Deanna, I wish I could give you an answer about your joints.... I don't think there is an answer for any of us! Deanna, I'd like to tell you not to be afraid to say enough, but I don't know enough about your individual circumstances to say so.[QUOTE=crunchy]The answer is clear...you cant do the job that you have with your current course of treatment. period. [/QUOTE]
That is the answer. There is a risk in changing doctors at this point as far as filing for SS is concerned. I want this doctor's support. I think I'm on my 3rd file with him and each of them are about 3 inches thick. If he believes I'm at the point of disabled, I need that because it is a very strong statement.
If I do file, and I lose my insurance, I will have to try and use the state program which I don't believe my doctor uses. I already know which doctor that I will try and use then. My daughter goes to him and I like him.
If I don't get good answers on Thursday, though, I will go ahead and see if I can get a second opinion.
And Crunchy, I am sad, just like Roxy is because I am losing what I have done and loved for more than 25 years. I'm a really good designer and I hate to give that up. I've dreamed of having my own freelance business again for many, many years. And, I know I can't do that now.
I also tired of fighting battles. That's all I've done for years for myself and mostly for my daughter. I don't want to fight this battle so that I can be impoverished, not that my medical bills don't pretty much do that already. I am just plain tired. Even old warriors need R&R.
Deanna, they do. Take some time this week to get some rest if you can. Tell your boss you HAVE to work from home. You and I are a lot alike in that we will go to the wall for our loved ones and those we care about and be damned about us. It's time, my dear, to start thinking of your own self, finding some way to financially manage. Let me think about it, and I'll see what I can brainstorm... There has to be something you can do that won't incapacitate you as your current job is doing.You know the sad thing is that when we are kids we think that love makes the world go round (and a wise person here once said that it was chocolate that makes the world go round) but the truth is that money is really what does it. If money werent the issue...picture now in your mind if you had access to endless ammts of money...imagine how different your life with RA would be. You could take care of yourself in ways unimmagined. Rest and relaxation, therapy....
It sadly is all about the money...and you almost have to brink on poverty before you can get any help.
Crunchy, it is really hard to face the possibities that come with disability. But I've been crunching (sorry) my numbers and examining my possibilities. I've been thinking about what I can do to bring in a bit of money here and there and not break the "rules." I could do some paintings or craft things. I seem to do better when I change what I do on a constant basis. Also, I'm going to start a garden, small and manageable, to grow some of my own food. I've been wanting to do this forever. I grew up on a farm and my grandparents were wonderful gardeners. I miss having lots of growing plants. The place where I live has lots of space for all kinds of wonderful plants and the water is free. It just takes time and care. I ordered my first groceries online today. They should be delivered any minute. Now, I can't complain about not being able to grocery shop. And, it feels good to do something positive. As soon as I talk to the doctor, then I'm going to see the disability lawyer. That way I'll know what I can do and not do. I need a different life than I have and that is with or without RA. Deanna, I'm so sorry that you are feeling this bad. I really don't know you but I feel like I've known you for years. You are so great on here helping others ( me included) and giving such good advice. Crunchy is right. It sounds to me like you should be able to get total disability for yourself. If your RD isn't willing to give you help, then I would be looking for another, if my insurance allowed. Sometimes we fall into a rut with our DR'S. and they just DON'T hear what we are saying to them. They begin to fell like THEY know us so well. You hang in there honey. Trisha Deanna: I'm truly sorry that you've come to this point. Giving up what one loves is just about the most difficult thing. I gave my job up willingly in April, 2005 when I realized that my job was suffering because I was suffering and at that time I didn't see any hope. I resigned. You might want to let them either lay you off or replace you within the confines of their human resource policies and the state regs. That way you can apply for unemployment. Secondly, most insurance companies will pay for a drug that isn't on the formulary list if the drugs that are on their formulary (ones they pay for) don't work for you. If Enbrel (formulary list drug) isn't working and Remicade (non formulary drug) did work they will probably authorize Remicade's use if your Dr. appeals with a letter showing medical necessity. Your Dr. needs to be strong in the appeals letter. If you haven't already I'd fight for Remicade. If doesn't fall under experimental treatment and should be authorized after an appeal is completed. As far as SSD, consider strongly applying with the benefit of a disability attorney. They will walk you through all the steps. It sounds like you've looked at all your options and I know that whatever decision you make will be the right one for you. You'll know more after your exam. Take care.
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