New Wrist Brace

Today started my new schedule with OT and PT. I spent a whole hour in the pool today and I am SORE. But sore in a good way. I'm hoping I learn enough excercises in PT to keep supporting my sloppy joints after my visits run out for the year.

At OT I was fitted with a new wrist brace (finger splints should be arriving in the next 2 weeks). The new brace supports the distal head of my ulna and there is a secondary strap to force my thumb into flexion at the MCP joint. We learned today that my left thumb hyperextends and locks if not supported. This is kind of new for me, but it's been a while since my thumb was really worked on/looked at. Here's a couple pictures:

Back of wrist:

Palm (as best I can):

My wrist is REALLY sore this evening, but I'm assuming that was from 1.5 hours of therapy and a new brace that doesn't act as an immobilizer. We shall see how I feel tomorrow. New PCP told me to avoid taking NSAIDS and other anti-inflammatories. I think I'm due for one tonight. ;)

It's Been A Good Week

This week really has been good! I have "hired" a new primary care physician whom I REALLY like(she spent an hour talking with me... an HOUR), I was approved by my insurance for my silver ring splints, the OT is actually ORDERING my silver ring splints (yesterday, actually), I will be spending more time with my PT in the pool as of Friday, my car should be fixed by Saturday (Monday at the latest), my OT is also making me a custom splint for my L wrist so I can ditch this stinky dirty old brace - it will support my EUC, hold the distal head of my ulna down, and give me more mobility.

Heck yeah, a good week!

With the good must always come a twinge of bad. Last night I couldn't sleep as my hips, knees and ankles hurt so bad. It was pretty awful. But I'll gladly take all the good things that happened this week if I've only had one kinda poopy issue. The good FAR outweighs the bad. :D

Pool Therapy

Today I went to OT and discussed silver ring slints for my fingers. The therapist was more than enthusiastic about it and got me sized for 4 fingers. She said she would discuss it with my other therapist and get them ordered for me. I think I'll have them measure my pink fingers on Monday. They sized my ring and middle fingers. We shall see Monday what the other therapist says. If insurance doesnt cover it, they are $81 per knuckle.

All I had to do was ask.

All this time I haven't been advocaing for my own health. All this time I haven't been complaining because I just figured it was "normal" to be in pain... in pain to the point I don't feel it anymore. Not good. And I hate being the center of attention. I didn't want

But I'm on the right track. I am not accepting the rheumatologists "there's nothing I can do for you" to mean this is the end of the road... it just means hypermobility disorders are out of his wheelhouse and I need to look into a second opinion, or find someone who knows more specifically about hypermobility. Someone who won't just shrug and say "you're skin isn't stretchy, can't be Ehlers-Danlos." My physical therapist was encouraging me to really push for more information/answers and not to accept "Sorry, nothing I can do" as a final answer. I told her I didn't even know finger splints existed until I saw her hands and a lightbulb went off in my head. She seemed genuinely pleased that I asked for them in OT.

Finally. Some people on my side.