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

Wednesday, January 29, 2014

Here we go week three!

This Friday will be my third week post-op!

Last Friday, I had a wound check with my surgeon's PA (physician assistant). Everything looks good with my incision. It's staying nice and closed (which can be a problem with my EDS skin) and there's still no drainage of any kind, both very good things. My surgeon stepped in to see me because he's awesome. He was concerned with how uncomfortable and increased my pain meds. I was wishfully hoping to be able to back down soon, but I'm not quite there yet. He was hopeful that in the next couple of weeks I would turn the corner and be more comfortable.

After being on the increased meds for almost a week I'm more comfortable than I was before just laying in bed. It seems easier to get situated in bed with the many many pillows we have. I think I've finally found the most comfortable position for my leg, so that helps a lot too. The increased meds mean even less of an appetite than I had before. My family has gotten pretty creative and we're trying to find things I can eat, but somedays it can be a bit challenging. As long as I eat at least a gram cracker with my meds I don't get sick, so I'll be keeping that up.

Getting up is still a big task for me. I'm not allowed to abduct (laterally move my leg away from my body) at all, so someone has to pick up my leg as I scoot to the side of my bed- that will be necessary until 6-8 weeks post-op. It puts more pressure on my hip to move in my bed in order to get up. Then once I'm vertical, well it's just a totally different feeling than laying down of course. One I'm just not quite used to yet. I can't make it all the way to the bathroom yet. I think I could probably get there, but our downstairs bathroom is the size of a matchbox and not very accommodating. I need something to hold onto while I sit down, that's not available in the bathroom for the amount of support I would need. So, it's still the bedside commode for now. I would much rather be more stable and safer, then struggle just to use the real bathroom.

I'm cleared to start water PT at the end of this week. I'm scheduled to start im two weeks with my physical therapist. I'm excited to be able to do some kind of activity so that I don't get too weak.

Monday, January 20, 2014

Post-op Update

Six giant screws later, a little extra blood, a couple IVs later, surgery went very well. My surgeon is very pleased with the coverage he was able to give to my hip joint.

I spent six somewhat eventful days in the hospital after surgery. I had an epidural for the first three days, I'm very thankful for that because it made pain control slightly easier. I had a reaction to the dressing from the epidural (nothing we didn't expect) so it was taken out a day earlier than planned. I had a blood transfusion, of my own blood that I donated pre-op, a couples days after surgery. Then things got a little interesting. I had a big drop in blood pressure (90/30) and we couldn't figure out what was going on. Since pain meds can lower blood pressure, the only option was to greatly drecress them until it went up a little bit. My body wasn't exactly a fan of that and then spiked a fever in the middle of the night, which made my doctors uneasy. By about the next day, my blood pressure went back up, still not my normal but more stable.

I was able to a slowly progress with PT while in the hospital. We started with just sitting on the side of the bed, and then by about day four I could walk to the doorway with my new fancy SmartCrutches. They are special crutches which are designed to take the stress off of your shoulders and wrists. They're great.


By day five I was ready to go home and have been resting appease here since then. We moved my bed downstairs (our usual post-op plan) in the family room so that I can be more comfortable. Sitting up is still pretty uncomfortable and I only do so when I'm going to the bathroom. I'm still on all my pain meds around the clock, but will hopefully be able to back down shortly.