Good news, I’m working with my OT to relearn how to knit with braces on so that it doesnt hurt! Whoot! I miss knitting. I’m a hardcore knitter, too. I bought a knitting loom for simpler projects, but I love doing lacework and cabling. OT really has been so helpful in the adaptation process. I bring in different things that I want to be able to do again, and we try to figure out the best way to do it. I have a foamy tube for my drawing utensils and paintbrushes. I wrapped some other utensils with Cabon/VetWrap to make it squishy and easier to hold on to. My silver finger splints came in. They are the Murphy brand. They don’t quite do the job. See, I have thin fingers but HUGE knuckles. We think that if we widen the splints a little so that there is a bigger angle, it will do what it is supposed to, as well as still fitting. We will see next week how it goes.
I’ve been in a lot more pain lately. PT is still really hard. We were working on some ankle strengthening stuff and I was ok at the time, but afterwards my ankle was screaming. We are talking about getting new ASOs for my ankles. The one’s I have aren’t doing the job. We are looking at the Malleo-Loc
, which is a lot more supportive. It’s solid and formed to my ankle. Maybe having my ankles in better position will help my knees and hips a bit. My left leg is rotating inward when i step, and the right swings. Fun stuff. I’m also having a lot of neck pain, may look into a soft cervical collar for doing things at home and car rides. Not use it all the time though. Just when I need it. I am seeing a new pain clinic on wednesday. I am looking forward to it. I told PT and she knows the dr’s there and is looking forward to what they have to say. I need to start making a list of things I want to discus with them. Hopefully they will be able to offer something to help.
OH! I almost forgot. I talked to the reviewer guy that’s dealing with my SSDI application and he said that it’s in medical review and that if I get a mental status report from my Psychiatrist I don’t have to go to theirs, which would be awesome. I also had an updated report sent from my geneticist to him and one for my medical binder. Hopefully that will get an answer soon!
In other non-medical related stuff, I am going to be submitting an essay/short story to a book to be published. The book is about troubled teens. I’m going to write about the stuff I had to deal with as a teen. Some pretty heavy stuff. When it’s done and you want to read it yourself you can email me and I will send you a copy. I’ll keep you all updated on that. I don’t want it available to anyone. What would be the point of being published? haha. I also want to start putting together a book on dealing with EDS. I have an outline made out. If anyone would like to contribute to it, feel free to email me. I wont be starting that project till after the first one is done.
I can’t think of much more to write at the moment… so, I’m off to relax and finish watching Empire Strikes Back. Whoot