Tuesday, June 24, 2008

Misc Updates

I am finally out of the splint for my thumb! Yay, just in time for the release of Final Fantasy Tactics A2. The original FFTA was the first game I bought for my Gameboy Advance and was a game I sunk well over 200 hours into, mostly as I recovered from my various surgeries. I expect FFTA2 to be firmly entrenched in my DS for a good long while.

Yesterday I went to Stitch DC in the district to try to take an introductory knitting class. After sitting in traffic for about 2 hours (coming from work in Dulles) and standing out in the rain/storms for 30 minutes, the class was cancelled, as the instructor seemed to be MIA. The only good thing to come out of yesterday was that I got to see a really cool double rainbow, which other DC-area people took photos of (pictures at The Capital Weather Gang's site). I, unfortunately, was on 395 at the time, so there was no stopping on the side of the road to take pictures. I'll have to rely on those taken by others (which are quite good).

Kottke has linked to a very interesting article about itching and perception. [Edited to add] I must confess, this link caught my eye because of my experiences with itching in an area where I have had a nerve removed. [end Edit] Since having a portion of my sural nerve removed in 2004, if I have any itch in my ankle and try to scratch it, I don't get any relief from the scratching. I've found slapping works better, oddly enough. The article is quite interesting, I highly recommend it. [Added] This article talks more about perception as it relates to itching, and gives a bit of a history of a patient with a persistent itch problem. It also discusses various related disorders, treatments, and a bit of history about the research into itching (and scratching, and also the related perception, tickling).

Monday, June 09, 2008

Ehlers-Danlos Follow-Up

On Thursday night as I drove home from the gym, I got a call from the genetic clinic at Hopkins. It was the call I've been expecting for awhile, the call from the genetic counselor. She asked me a few questions, including:
- Explain your hypermobility (which joints, how do you know they're hypermobile, etc)
- Has anybody in your family ever died suddenly?
- Do you bruise easily?

The 2nd and 3rd were easy to answer (not that I know of and not that I've ever noticed). The first was a little trickier, as I know my shoulders are hypermobile, and I'm pretty sure my ankle would be considered hypermobile, but for the rest of my joints, I can only go on what doctors and physical therapists have said, which is that most of my joints move too much. Of course, instead of saying that, I talked about how my shoulders have had non-traumatic dislocations and subluxations, even after stabilization surgery, and how my ankle didn't take 3 surgeries with good surgeons, requiring my eventual fusion.

So now I have an appointment set with the connective tissue group at Hopkins for September 16th. The appointment will start with an echocardiogram (ultrasound of the heart), which is a little scary. Not that echocardiogram's are scary, I mean, but that there really could be something wrong with my heart. The more I read about EDS, the more...nervous I guess I am, but I'm trying not to read too much and trying not to self-diagnose. Come Sept. 16th, I'll hopefully know a lot more, and stop playing the guessing game. I guess we'll see.

Sunday, June 08, 2008

Roz Rows Across the Pacific

Thanks to TWiT, I found out about this amazing woman, Roz Savage, who is attempting to row solo across the Pacific Ocean. That's solo, as in, without even a follow/support boat in case things get really bad.

Maybe I'm just a sucker for things like this, watching people do things I can't even fathom. Or maybe it's that I feel a sort of kinship with people like this, even though my adventurous life has been slowed down a bit by injury and my career (I'll fully admit I'm not brave enough to quit my job and just do something like this). She's already rowed across the Atlantic Ocean in 2006.

Anyway, I've been following along on her blog and on Twitter, and listening to the podcasts that are being recorded when Leo Laporte (chief TWiT) calls her 3 times a week. I thought others here might be interested.

Blog: http://rozsavage.com/blog/
Twitter: http://twitter.com/rozsavage
TWiT page (podcasts available here, recorded live Tuesdays, Thursdays, Saturdays at 10 a.m. PT/1 p.m. ET): http://twit.tv/roz
Podcasts also availble on iTunes, if you search for "Roz Rows The Pacific."

Monday, June 02, 2008

Yep, It's Sprained

Or at least, the doctor thinks it is. It's hard to tell how severe a sprain is with me, but more on that in a minute. For now, my left thumb/wrist is in a splint similar to this one. It's kind of annoying, because I don't like the wrist constriction, but the doc is playing it safe, and I can't say I blame him. I'll be splinted for 2 weeks.

Ok, so the reason that it's hard to tell how severe a sprain is on me is because the doctor thinks I may have Ehlers-Danlos Syndrome. Let me back up. 3 Advil 3 times a day was helping my hip feel better, but as soon as the Advil wore off, I was back in pain, so I ended up going back to the orthpod a few weeks ago. He wanted to give me a cortisone shot, but I was a little concerned about getting one, because I've heard from another orthopaedist that cortisone shots can lead to deterioration of the ligaments and tendons in the joint, and I've got a history of rather loose ligaments and bad quality ligaments and tendons. He assured me it would be OK, as it was just 1 injection, so we did it, and my hip's feeling close to 100% now. Sometimes, it twinges with certain things at the gym, but all in all it's good.

That's when he asked about my joints. You see, I've had 2 shoulder surgeries (1 on each shoulder) and 4 ankle surgeries. The shoulders were for repeated dislocations, even though I never had a traumatic dislocation. The ankle was for torn ligaments (torn playing soccer), and because none of the first 3 surgeries worked, I had to have it fused in the 4th. Since those surgeries, I've had one more non-traumatic subluxation of my shoulder (last November). That's when the doc suggested I might have something called Ehlers-Danlos Syndrome, and mentioned I should get tested.

According to Wikipedia, Ehlers-Danlos is, "a group of rare genetic disorders affecting humans and domestic animals caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. There is no known cure. Treatment is supportive." One of the classic symptoms of this is having hypermobile joints, which my doctors all agree I do. There are other symptoms, but that's the big one.

Needless to say, I think that there's a good chance I do have it. It would certainly help explain why I've had so many joint issues. It would also help explain why my first 3 ankle surgeries, performed by good surgeons, didn't work properly. So, at the moment, I'm waiting for the Genetic Medicine group at Hopkins to give me a call back. I've done the preliminary call, now I need for a genetic counselor to call me, take a history, and determine which doctor I should see.

So that's that. Knowing I have generally "bad" ligaments, I try to treat my injuries with kid gloves, and it seems my doc is doing the same. He thinks I've only got a fairly mild sprain, but my right thumb joint is also very "loose" so it's hard to tell the extent of the sprain. If it still hurts in 2 weeks (which I doubt it will), I'll go back. Fun times. Have I mentioned that I love my joints?