Hi everyone

I was writing a summary of my symptoms from my pain journal and noticed that the one year anniversary of my diagnosis with "suspected" RSD is coming up - June 23rd. It's been over 31 months since I hurt myself carrying a workbag loaded with too many workpapers and tore my rotator cuff (the woman I was working with that day was pregnant and I didn't want her to have to carry anything). Some things you never forget.

I've had 2 surgeries, approx 25 trigger point injections in my upper shoulder, neck and the back of my head that caused my RSD to spread, 7 SGB, over 150 units of PT, and probably 15 different meds. I initially lost 30 pounds, but have since gained about 10 back (the Topamax has cost me about 5 pounds, and so has Methadone!!).

I've been to 2 different RI PM docs (neither one of them very good), a great Boston doc from a small hospital with limited resources who referred me for ketamine at the Beth Israel, and just recently, the Beth Israel hospital in Boston with a downright nasty doc where I was told that I wasn't ready for their ketamine program. (The next day Kathy Provizanno, a manager of some sort at the Arnold Pain Clinic, told me they had decided to close the ketamine progam to new patients - is that really the truth?? I doubt it.) The problem is I still look too good, work FT, and can walk, even though the ankle and bottom of my right leg gets very swollen some days and hurts horribly. The doc I saw actually accused me of having a sprained ankle and varicose veins (I sprained it in Sept of 2000, the veins are from carrying a 9 lb baby boy in 1994).

Talk about battles. Those of us with RSD have had to develop the nerve and tenacity to fight for just about everything we need to maintain even a smidgeon of a normal life. And a lot of the time we don't even KNOW what we need. We often start out having no clue what is wrong, just hurting badly and knowing that something is definitely not right, and then (unless we're REALLY lucky) we end up in the office of a small town doc who has no clue either. By the time we get to where we need to be we've been messed up somehow - inappropriate procedures, surgeries, time wasted, etc.

In the end, we survive by getting as educated as we possibly can and from the support of others. I have learned a lot from you guys. And I have support from my family and friends. I walk a LOT. My PT has kept my arm at almost full ROM and has helped me solve a lot of problems. I also have the parents of a child with RSD that are always there when I reach out to them. But I am far from well, and I am so sad that a whole year has gone by and I'm sicker than I was then. It's just not fair.

Amazingly enough, the Beth Israel doc I saw wants to INCREASE my Topamax and add a strong muscle relaxer - Skelactin (sp?) to what I already take. YUK! She also suggested much more intensive PT, not considering what the corresponding increases in pain would do to my FT work schedule or my participation in the household. Having harshly criticized my current meds and PT, she went on about other stuff, including the absence of testing that had been performed by my RI docs on my autoimmune system, after telling me she had trained both of them (!!). BTW, they are all the same nationality - from India. All of her criticism was aimed at my husband and me, as if it were OUR fault that the docs in RI are so screwed up. She also commented on another patient she had seen from our poor dumb state earlier in the day - apparently their doctor referred them to Boston with the promise of ketamine also - just WHAT are WE THINKING?! It's for HER to have, not us sick people....

I wrote a letter, and requested another doc for my future visits (if any, I have to think about it). I also spoke to the manager. But I still feel rotten about how I was treated.

So - I am having a pity party this week. I try to keep in mind that things could be worse, but this still really stinks. I did see one pyschologist about a month ago, but the time committment is a problem right now and frankly, she wasn't that smart. So you guys are my shrink this week (hope you don't mind....) And sorry this is so long.

XOXOXO Sandy