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, February 20, 2014

Six Week Visit

Today I saw my surgeon for my six week post-op visit. Technically six weeks is tomorrow, but close enough. I had some new scans taken to get an idea as to how my pelvis has been healing. After looking over things, I don't have quite enough bone healing to progress any weight bearing. The correction that my surgeon made was on the larger side, so that means that there is more surface area of bone that needs to heal and grow in. There is already some bone growth going on, just not enough to support weight bearing exercises at this time.

The plan is to assess my progress over the next two weeks and I will likely be able to slowly start weight bearing at week 8 post-op. This process will start slowly, and I'll do so with my physical therapist. Hopefully over the corse of a month I can slowly progress the amount of weight through my right leg. The goal is that by around week 12 or 13 I will be getting around fairly well.

I will continue with water therapy for the next several weeks (at the very least for the next two weeks). As I can bear more weight I will transition to land therapy more. I'm mainly using my SmartCrutches and trying to stay out of the wheelchair as much as possible. I left the wheelchair at home for my appointment today! Using crutches is doable for smaller trips, but I still need to be cautious of my left leg and my shoulder to avoid any other injury. The SmartCrutches take a lot of the stress off of my shoulders so I'm able to do more with them then I would be traditional crutches or walkers.

Wednesday, February 19, 2014

The real work begins

Last week I was in for PT for the first time since surgery. I basically just had an evaluation with my therapist to get an idea of how my activation was and what range of motion I had. As expected, my right leg is very atrophied, but I was still able to turn on everything well (I had been working on activation exercises pre-op). My right knee seems to be a little angry. We're optimistic that once I can get things moving and get some strength back it will settle down. 

I started in the water the begging of this week. We'll just be easing into things to get my right leg back to working again. I think the pool is going to be really great and hopefully help me get stronger. Once I'm a little more confident in the water I'll plan to go to our indoor pool on my off days with PT. 

As I've started more exercises I've been able to move around a lot easier at home. I'm able to use my SmartCrutches around the house. I can almost get dressed without help; getting that right sock on it's the real challenge. All in all, I am getting so much better each day. I have an appointment tomorrow with my surgeon for my 6 week visit. If everything goes well I will be able to start some weight-bearing! 

Thursday, February 6, 2014

Bye bye nasty drugs. Hello sitting up.

Today was a pretty good day for me, and definitely a big one at that! I am off the OxyContin (pain med). I'm done with Lovenox injections (for blood clots). I skipped Percocet (pain med) for the day. My goal is to only take it at night, and then likely after PT once I start. (Almost) No more nasty drugs!

Just in case that wasn't enough excitement for one day, I also sat up for quite some time in my wheelchair today. The first successful time I've been able to sit up since before surgery.

I'm still using the bedside commode, but hopefully I'll be able to make it to the real bathroom soon. We'll need to get a little creative because there's not support in the bathroom (hand rail, etc) and it's just about the smallest bathroom ever, so there's not much room for someone to help me get in and out. We'll save that victory for another day.

This has definitely been a slow recovery, lots of baby steps. I'm used to that with EDS, as unexpected  things come up because of complications. But, it's nice to have some measurable progress now. It gives me more motivation and definitely comes at the right time. I'm starting to get a little stir crazy as these past four weeks have been spent solely in bed and watching tv; my only time out of the house was coming home from the hospital and a post-op visit to my surgeon. I need to be able to master sitting up a little bit more before I can go out to do something (and the snow will need to melt quite a bit), but I'm heading in that direction!