Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: October 2008

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

It’s been a couple of weeks since my last post.  So Sorry everyone (well, those that actually read this… haha).  As usual things for me are hectic.  Doctors appointments, Occupational and Physical Therapy, Weddings… sigh.  Soooo….. UPDATES!

When I went to my rheumy appt I brought up the dry eyes and dry mouth issues and mentioned that the optho told me I have practically no tear film and to ask about Sjogrens.  Well, he agrees.  Awesome.  Bring. It. On.  I use Biotene mouthwash and toothpaste, Systane drops through out the day, and Systane Gel at nighttime while I am sleeping.  Systane = Love.
I had a re-evalutation with OT, and I haven’t gotten any better.  It’s been 2.5monts.  We decided that our time may be better spent working on adaptive techniques.  I got a foamy tube to put on my paintbrushes, pencils, and other writing utensils.  Using vetrap or coban to build up others.  Will be getting an awesome knift that is T shaped and rocks (and coincidently looks like a ninja weapon… rock on).  My finger splints should be in soon, those are going to make such a difference, at least I hope so.  
PT, however, I feel is pushing me too hard.  OT gets that EDS is degenerative and that a lot of things are very day to day.  PT says that I am going to have to push through some of the pain… sure, I do get that, but sometimes I am in just TOO much pain.  Other times I sublux something from pushing too hard.  My left leg is now rotating inward when I put weight on it, clearly I’m not getting any better.  Sigh…  
I see a new pain specialist on the 22nd.  This place is actually around the  corner from me.  Whoot!  Hopefully they will have some advice for me.  Or a decent treatment plan… something.
Fun stuff!  I finally finished the Twilight Saga.  I have to say, I’m not sure I enjoyed the last book as much as the first three.  Maybe because I knew it was the end… or that it was really predictable.  I don’t know.  I still enjoyed it though.  I am also starting my Christmas Presents.  Yea, I know it’s still October, but if I don’t start now, they will never get done.  I’m making most, if not all, my presents this year.  I don’t have a lot of money, but I do have a lot of fabric/yarn/embroidery stuff.  I’m working on a crewel embroidery project right now, and it’s so much fun.  It’s easy to do and not too hard on my hands.  Definitely a plus.  
So, that’s it for now.