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

Tuesday, May 13, 2014

Find the Silver Lining

I've been off the web these past weeks for a couple reasons.

First, because I was bound and determined to work as hard as I could to get back on my own two feet. I have never only had to recovery and it really has been great to only have that one responsibility. It's allowed me to put all of my energy into doing just that, and that's exactly what my body needed me to do.

Secondly, because I was definitely having some mixed emotions toward the middle of rehab. Like I said above, it's been a lot of work. More work then I've ever had to or been able to put into recovering and with more physical work comes a little more emotional work. I am proud of EDS. I am proud of what it has taught me. I am proud of who it has made me become, but sometimes I need a little remind of those things.

So I dedicated these past almost 12 weeks to just that.

I've come a long way physically. I'm now walking (almost) aid free (with the exception of an ankle brace and some knee tape)! Being on my own two feet again feels wonderful. I'm not back 100% yet, but I'm getting closer each day.

I've also grown a lot mentally and emotionally with this recovery, more than I could have expected or even wished. Today I was speaking with a close friend and I had a little reminder of all the things that EDS has brought to my life positively. At times over these past weeks I've been a little discouraged about not being in school and taking this time off. I never grew up dreaming of becoming a nurse. I knew I wanted to go into medicine, but I didn't exactly know where I belonged or what my purpose was in the medical field. EDS changed all of that for me. When I started thinking about going to college I started reflecting on my journey with EDS. The thing that stuck out to me time after time was how much my nurses had touched me in a way that no other medical professional had. I quickly realized how much of an honor it would be to share times with patients while they were at their weakest points, just like all my nurses had done for me. So, how can I be mad at EDS and the modifications I need to make in my life? Without EDS I wouldn't have been given the privilege to realize what was important to me and what I was most passionate about; patient care. That's something that I will always hold closely.

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!

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.

Sunday, December 8, 2013

Almost... Ready to Roll

I officially have my surgery date- January 10th.

The crutches are on their way. Physical therapy is set. Blood is getting drawn.

It's always comforting to feel like things are falling into place. It can be a little nerve racking to wonder if you're doing the right thing, luckily my hip has been telling me that this is exactly what I need to do with a little misplacement the other day. I think that most people would see that as a complete negative sign, for me, it's oddly comforting. It tells me that there is no question that my hip needs a little, or a big, tune up and now is the time. I'm ready for this.

Starting this week I'll be pumping myself full of Gatorade and Cream of Wheat in order to prepare to give blood this weekend. Gatorade works miracles for me pre and post-op, we've found out first hand. The theory is that since my BP is so dependent on my blood volume, adding rich fluids (like Gatorade) helps to keep that regulated and hopefully prevent passing out post-op (or after giving blood). I'll be doing two auto blood donations to have on hand post-op in the event that I need a transfusion.

My crutches that are on their way are hopefully going to be the perfect solution for my EDS body, and specifically unstable shoulders. The goal is to be able to use them, with PT before I go into surgery so that we can have some ground work done and hopefully have a slightly smoother recovery post-op.

Until January 10th, I'll be making the most of walking freely on my own two feet!