16 March 2010

Extra Stuff

Wow, I actually made it to the Occupational Therapist yesterday.  I was so surprised at all the things that had for me.

First, they were able to give me special braces for each of my fingers.  They are funny looking rings to help keep the joints from dislocating.  They also made a cast like splint for my right hand to keep my thumb in place.  I am also getting 2 neoprene braces for each hand...those had to be ordered.

I was totally amazed at all the things that were ordered for me.....a number of assistive devices.  It is awesome.  I am going to be getting a parafin bath.....the heat from it is suppose to help with the pain in my hands.  It is also going to make them nice and soft, just like going to the spa.

The guy ordered an automatic jar opener...it is huge...guess it is worth it.  I have lost a bit of use of my right hand.  I am also getting a nifty little tool that will open soda cans, pop bottles, and cans.   I am getting a number of spongy things for pens and pencils to make them bigger for me to hold.  I also got some tubing type stuff to put onto silverware to make it thicker.

A hair dryer holder....it is suppose to hold up my hair dryer so I don't have to use my arms to do it.  Might be nice on my shoulder....we will see how it works.

Some sort of device to hold books open while I read...that way I am not stressing my thumbs.

A strange looking thing that slides across the counter so I don'.t have to lift full pots to get them to the sink.

Thicker tweezers and nail clippers.

I am sure there is more, but I cannot think of all of it right now.

Yeah, someone is at least helping my situation be easier....not better, but easier.


  1. Hi, I stumbled on your blog using Google (don't you love it?) as I try to find out more about this condition. I was diagnosed a couple months ago, had an echo done and learned I have a bit of MVP and regurgitation, but otherwise I have no idea where to go from here. I've read a bit about your life and your journey to understand this condition, particularly as a mom. Currently that's my biggest struggle--I have two young boys, and I just want to be able to be active with them. I am so frustrated with how limited my body is--how I can't pick up a bag without messing up my thumb, walk without significant pain, sit on the floor without affecting my hips...basically I have to think about everything, all the time. Not that I'm discouraged. I mean, at least I know what this is now! But learning to live with this is a process.

    I've been reading about your OT and braces, etc. What form of EDS do you have? Did you go through your primary physician for referral to OT and such? My PCP isn't familiar with EDS, though he does treat a family with Marfan's, so I think I need to know what to ask about, KWIM?

    It's nice to feel connected to others. Thank you for blogging about this!

    I'll check back soon to see if you've had the opportunity to respond. Thanks!

  2. I can totally feel your pain. I am there with you in so many ways. I have to think about every move I make, especially when it comes to playing with my kids.
    My primary care doc did not know much either. I had to educate most of the people in my chain of care. I highly recommend asking your primary about seeing an OT...I tried PT and it did more harm than good. An OT who understands hands is better than any other. The ring braces are awesome. I did not even think about my fingers today as I went through the day.
    I would also recommend asking about seeing a genetisist.

  3. I can feel your pain and know about this pain a lot because i have seen my uncle in law suffer from the same pain and it's really bad pain and uncontrollable too.

  4. Thank you. I saw a geneticist for my diagnosis, but she doesn't really provide care. I plan to talk to my primary about who I would need to see to be evaluated for braces and such, and about OT and/or PT from there. My boys have the same primary doc, and we'll have the baby in for a well check this week, so I might just mention it to him then to see what he thinks.

    I appreciate your blog! Hope the shoulder gets to feeling better (to whatever extent is possible) ASAP.