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

Friday, August 13, 2010

I've been in North Carolina this week, I go every year with my dad. He has a summer staff meeting here and I tag along and we have a pretty good time. I wasn't sure if I was going to be able to go this year, but here I am.

We're in the mountains, and although I'm not quite ready to go on a hike, walking around here even just on the streets is still a bit hilly and defiantly a workout. It feels good though. My right hip is doing really great, much better than last year when I was here. I can walk more and it just overall feels much better.

My right SI joint (lower back) has been bothering me more. It doesn't seem to be effected by the amount of activity I do, which is good and bad. Good because it means I can keep doing what I'm doing activity wise, but bad because it means I can't really control or expect what it is going to feel like. I often plan my life around how I can expect to feel after an activity. For example, if I'm doing something really rigorous then the day before and the day after I'll try to rest and give my body a beak since it's more work for my body than it would be for someone else's.

Hopefully if I can strengthen my gluteus and core I'll get some relief in my back, as well as improve my hip and make it more stable. So I'm going to, as always, continue to work on my exercises and really focus on PT and getting stronger.

Wednesday, August 11, 2010

Knee Check-Up

I saw my knee guy in Cleveland last week and he thought my knees looked very good. If it wasn't for my hips and everything else that was going on I would be completely cleared and ready to do pretty much whatever I wanted physically.

Left knee wise (operated on in Dec), I'm doing good and really can't complain about anything. Right knee wise, I'm beginning to feel a little bit more unstable but it's not enough that I need to do anything yet. I'm going to continue to watch it, but I'm not too worried about it right now.

Friday, August 6, 2010

Physical Therapy

I went to PT on Wednesday. It seems like I'm making progress hip wise, but my back has been killing me. I'm going back to land based therapy for now and we're going to see how that goes.

Right now I'm really working on my core and gluts. When I activate my gluts it makes my back a little better, so hopefully strengthening them with improve that. On Monday I have PT again and I'm going to use a bio feedback for my pelvis. It's like a belt and it beeps at you when you're pelvis isn't in a neutral position. I tend to always want to lock everything out when I'm doing exercises, especially my back. The idea is that using the bio feedback will prevent me from locking out my back and force my muscles to do their job. It's going to be a lot of work because I have to re-train my body, and my muscles the correct way to work since they've been compensating for my hip issues for so long.

My therapist is also going to video tape my gait and compare it to my pre-op videos. I think that will be pretty cool because my gait always looks better, so I'm excited to see it side by side.

Monday, August 2, 2010

Long Time No See

I've been on vacation at the cottage on Lake Erie this past week, so I unfortunately haven't been able to give an update.

Before I had surgery I wasn't sure if I was going to be able to go to the cottage or even if I was going to be able to walk by then, which was going to put a damper on the trip. It ended up being much better than expected. I could do pretty much everything I wanted.


Going to the beach was no problem. I would take my crutches down to the beach and walk with them a little, just for added support. I think walking in the water ended up being really good for me. Not only did I have the resistance of the water, but the waves too.

My right hip continues to feel better and better. My right lower back, SI joint, has been bothering me more however, but I'll take what I can get. Overall I think I'm still in less pain than I was pre-op and for the past 4 years even with more back pain, so that's something I can't complain about :)