I want to update this blog more. I really do. I have 17 saved entries that I never finished. Why?
Because I get halfway through and think no one wants to read this! With RSD, the bad days outweigh the good sometimes and as someone who has an obsessive need to put a positive spin on things, that gives me little writing material.
But this isn't supposed to be a blog about just the good side of CRPS/RSD and SCSes. It is about the entire thing. The downs as well as the ups.
So, to catch everyone up to today. I have continued to get worse, the CRPS is not in my entire upper body and my left thigh and knee as of today. I will get to that more later.
I had my psych evaluation. It was awful. The doctor's bedside manner was terrible and he was extremely rude and condescending. My doctor later said he was one of the top pain psychologists, but it was very obvious he did not understand RSD. He told me my "bad coping skills" were having a service dog, being part of online message boards, having seen so many doctors (ignoring the fact that I was referred by those doctors) and having the disease as a central part of my life. Needless to say, I was denied until I had either intense counseling or go to a comprehensive program (including physical and occupational therapy, which my doctor has said will do nothing but make me worse). We decided on the counseling and are awaiting the referral. This is likely to be at least a 4-6 month process at LEAST. Unfortunately, there is nothing we can do in the interim for pain relief besides the methadone I'm currently on.
In the time since I've last wrote, I've gotten substantially worse. In my upper body, there is really no "worse" side any more. My right and left sides are pretty much equal. I'm using speech to text software for most things now, since typing is painful. Two-ish weeks ago while I was taking a bath/shower my left thigh started hurting in the same way my upper body did. Dixie (my retired service dog) alerted my brother and he went and got my parents, who helped me get back to bed. I attempted to use a cane or walker but found that it was too painful. Right now I am in a manual wheelchair, but that is little better than the walker. Fortunately, my doctor wrote me a prescription for an electric one, so we are working on getting one now. We have some wonderful friends who are building a wheelchair ramp out of our front door and over our front porch so I don't have to get out of the wheel chair to get out of the house and risk a fall down brick stairs.
Dixie has retired as a service dog for a variety of reasons (you can read her blog for more info) and I am applying for a new dog from a program. I will update on that journey both here and on Dixie and Lola's blog.