My Journey with Ehlers-Danlos Syndrome

"On the girl's brown legs there were many small white scars. I was thinking, do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."

- Little Bee by Chris Cleave

Thursday, April 7, 2011

Cleveland Update

We went to Cleveland today, and all is well. My knee (bone-osteotomy wise) is healing as it should be and looks really good. My need is tracking clinically well and is not hyper-mobile. My surgeon thinks I'm not going to have any problems with either knee down the road. Since the majority of my reconstruction was boney work it will stay permanently, where as soft tissue reconstruction combined with my EDS will overtime loosen up and often need re-worked. He doesn't think that will be the case. We're going to be realistically optimistic about my knees in hoping that this will be the end of reconstructions, knee wise that is.

The goal is to be able to start being more physically active this summer, or at least as much as the rest of my body allows me to. Once I get to the point where I'm able to do more physically it's going to be extremely important for me to maintain that to avoid other issues down the road. Hopefully, I'll be able to start biking as my main source of exercise. That's something which is safe for my knees and hips, but will also not flare up my shoulders and hopefully not my back either. Swimming is another option, but that causes problems with my shoulders, so I'll most likely have to avoid that. My shoulders aren't a huge problem yet, but they defiantly have major instability which I would like to avoid increasing for as long as possible.

So, the goal for this summer is to be able to bike on a regular basis.

Wednesday, April 6, 2011

Physical Therapy Update

I went to PT again today (I'm doing twice a week now). It seems like I'm starting to plateau and having trouble gain quad strength.

This week I've been noticing some clicking/popping when I'm walking, but I don't notice it when I'm doing non-weight bearing exercises. Since I only notice it when I'm walking, it's not something to be too concerned about.

Today I got an electrotherapy machine (stim unit) to use at home. The goal with this is to try to turn on my quad, and in the end, gain more strength. I have some exercise that I'm going to use it with, as well as normal quad sets, so we'll see if it helps me gain more strength.

I'm going to start pushing flexion more since my incision is almost completely closed up now. My incision troubles have defiantly set me back. Hopefully, with the stim unit and focusing on gaining my range of motion I'll start to see more progress again.

I'm going to Cleveland tomorrow for a check-up. I'll get new x-rays to make sure my knee (bone work especially) is healing as it should be. They'll also look at my incision and make sure it's continuing to make progress and closing up nicely.

Saturday, April 2, 2011

No More Brace.

No more brace, well at least not 100% of the time anymore. I stopped wearing the brace around the house and now I'm allowed to go out without it on. It's nice because my knee brace is gigantic and after almost 7 weeks of it, I'm sick of it. Since I haven't been walking much without my brace, I think I'm going to wear it at school for the next few days just until I feel more stable and until I can walk a little better. I walk much slower without my brace on. Also, wearing the brace is not only good for me, but reminds everyone around me of my knee. So I think it would be smart to keep it on for longer walking trips or more crowded areas, like school. I've come this far, and I'm not going to let not wearing my brace make me take steps back.

Good news PT wise. This past week I went to PT two days in a row, just because that's how scheduling worked out. I think it really helped, weather it was the fact I went two days back to back or if it's just a coincidence. My right (operative side) quad and left glute are really sore. Now, I imagine the majority who are reading this are thinking that's not a good thing. You're right, it's a great thing. Having sore muscles means that they're finally turning back on, it means that the new exercises I've been working on are actually targeting the correct muscle groups. It's a good step in the right direction.

Friday, April 1, 2011

Incision and Physical Therapy Update

My incision is looking much better, about half the size it was last week. I still have a couple more days on the antibiotics, which I'm looking forward to finishing because they make me very nauseous whenever I eat anything. I'm still going to continue my wet-dry dressing twice a day. I'm going to have it checked again next Thursday and if it looks better either stop the dressings completely, or go down to only once a day.

Until my incision closes up more, PT is a little difficult because I'm trying to avoid flexion. I was having pain under my patella (kneecap) when I did long arc quads (extending my leg up from sitting, bent position with a weight) and even slight discomfort with a regular quad set. Although I would be perfectly fine working through the pain, I have to be really careful not to. Pain under the patella, is essentially pain from the osteotomy to deepen the grove my patella sits in. If I were to push through that then I would most likely be destructing that reconstruction and causing even more issues. So, that's going to be avoided.

The challenge in PT right now is to figure out how to isolate my quad and glutes (mostly on the left side; non-operative side) and work on strengthening. There are many many exercises which target those muscles, but because of how my body is I'm always compensating. So, we have to find one where I can't cheat and where I can work until those muscles fatigue, as opposed to every other muscle and joint around.