Answers and More Questions

Well, I had my appointment with the HO expert yesterday.  I was impressed that she seemed to know what she was talking about, but I was not enthused about what she told me.  She confirmed that my condition will continue to get worse unless I stop over-stretching my hip muscles.  Unfortunately, normal activities like getting in bed, or sitting my wheelchair overstretch those muscles.  Overstretching leads to micro-tearing, and that leads to more calcium formation and increased stiffness and decreased range of motion.

She said the fix for the problem is surgery.  It's a pretty invasive surgery, and I may have to go back to rehab afterward.  Also, normally they won't perform the surgery until 12-18 months after the onset of the HO to let it mature.  However, she got me a consultation with an orthopedic surgeon to discuss whether they would consider doing the surgery on me early because it's interfering with my ability to live.

The fact that there is an apparent path through this nightmare gives me hope, but the remaining unknowns and my decreasing ability to function on my own scare me to death.  If I wake up one morning and can't sit up or get out of bed, what do I do then?  I hope I'm worried about nothing, but my experience so far seems to indicate that that's where this may be headed.

What to Write

It was another relatively uneventful day in my apartment.  I want to write something on the blog, but I don't know what.  I didn't really do anything today.  A nurse stopped by to draw some blood and tell me to drink more water, and my physical therapist was here for a while, but he's scared to do too much to me until we find out what we're doing about the HO.  Today my big accomplishment was brushing my teeth.  Other than that, I watched some tv on my computer.

I tried to take care of some paperwork, but it's pretty overwhelming.  My friend, Julie, came over for dinner last night and helped me figure out some of my insurance paperwork, so that was productive.

I wish I felt flexible enough to take my chair outside by myself.  I want to go check my mail and take some trash out.  I hope they tell me something useful at this doctor's appoint tomorrow.  I'm tired of not knowing what I'm supposed to do.

So Hard

Sorry I haven't written in so long.  Moving out of the hospital has been 20 times harder than I expected.  I'm soooo glad my sister was here to help me.  She left last night, and today is my first full day alone in the apartment.  I also don't have any therapy today so I really am on my own.

I don't think the move would have been nearly so hard if not for the heterotopic ossification.  I can feel it decreasing my flexibility day by day, and I already can't put shoes or socks on.  My occupational therapist showed me how to put pants on with my reaching claw, so at least I can do that now.

The HO honestly has me scared out of my mind about what the future holds for me.  I can no longer reach my feet because my hips are so tight, so I already can't do a lot of the things I could do when I was in rehab.  I'm very scared what else I'm going to lose.  The therapists at UNC have been working on it for me though, and I'm extremely happy that I've been offered an appointment with an HO expert on Friday.  Now I just have to find transportation to and from UNC for the appointment.  That is non-trivial.

What has been a huge help and comfort since I've been out has been my sister and my friends.  My sister really was instrumental in getting the boxes unpacked here and helping me go through my stuff and getting rid of everything I don't need.  My friends have visited almost every night and brought food and a break from worry.  They have also continued to surprise and delight me by offering much more help than I could ever have imagined.

I want to write more, but I don't have time.  There's so much to do besides blogging.  Paying bills, changing my address, therapy, researching HO, organizing my stuff, etc.  It seems like the pile of todos is unending, but I'll try to blog more often now.

Wish me luck.

Heterotopic Ossification Part 2

So it turns out I do have the HO, and they are starting medicine immediately.  I'm glad about that, but I'm pretty bummed to be going home with another medical problem.  This one is going to restrict my hip flexibility on a permanent basis.  Unfortunately, I need that to do things like put on shoes.  I might be able to improve it temporarily with stretching, but I'm expecting that to be a constant struggle.  Like I need another one of those.

I could go home right now, but the apartment isn't ready, so I decided not to leave tonight.  I'll leave tomorrow morning.  I expect my Saturday will be full with getting my apartment ready to live in, and on Sunday, I expect most of the day to be full of visits from nurses and home health providers.  I suspect people are thinking about visiting me this weekend, but I would suggest you should at least call first.  I don't think I'm going to have a relaxing weekend.

Heterotopic Ossification

When they x-rayed me the other day, the doctors found something they think is a problem.  It's called heterotopic ossification.  What it means is that due to some trauma below my sensation line, they believe they have found a place in my hips where bone is forming inside my muscles.  It occurs in 15% of spinal injury patients, and it looks like I may have gotten lucky.  Today they need to run a "bone scan" to confirm their diagnosis and to see if there are any other locations they need to worry about.

Treatment consists of 12 weeks of drugs which should stop the formation of bone, but may also make me nauseous.  I can't wait.  I'm still hoping they read the x-ray wrong, but HO would explain some of the lack of flexibility in my hips.

Excitement and Disappointment

Tomorrow morning I go home.  I've finally gotten to the point where I'm more excited than afraid, but I'm still pretty apprehensive.  The last two nights in the transitional apartment have been relatively uneventful, but at the same time have been very eye-opening about what it's going to be like doing everything without a nurse on call.

I'm going to miss this...

... because it brings one of these

But overall, I'm excited to go home to my new apartment, and I'm excited to spend some time with my sister, and I'm excited to check out my new neighborhood, and I'm excited to be closer to my friends, and I'm excited to not have to eat cafeteria food every meal.

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Unfortunately, I wrote that earlier today.  Then they checked my x-ray from yesterday, and they may have found a problem.  So they want to keep me through most of tomorrow to run some more scans.  I'll be lucky if I can get out tomorrow evening.  It sounds like it's more likely I'll be released on Saturday now.

I didn't know how much I was looking forward to my release until they took it away.  They're doing it for my own good, but mentally, I have checked out.  Now it looks like I may have to go take a half-hearted stab at some more therapy tomorrow while I wait for bone scan results.

I don't handle disappointment well, and this is a pretty major disappointment for me.

This kid again

Inspiration

Since I started this blog, a surprising number of people have written me to tell me that I am an inspiration, but it's rare that they say exactly what I have inspired them to do.  I hope I have not inspired anyone to crash a motorcycle.  It can be very exciting, but I don't want to be responsible for the consequences.

In general, I assume this is not what they mean.  I suspect they mean that I am inspirational in a general sense, and that they have not actually been inspired to do anything.  That's ok.  I'll accept that compliment.

It's unfortunate that I had to hurt myself to inspire people, but if I'm going to be an inspiration, I would prefer to actually inspire people to action, and to make some sort of change in their life.  Here are some things I'd love to inspire you to do:

• To smile when life doesn't go your way
• To learn the names of the people that you meet and remember them
• To write about something that interests you
• To treat your friends and family better: you never know when you're going to need them
• To be nice to the people that serve you: It's surprising how many people aren't
• To take time to appreciate what you have
• To help somebody who needs help
• To live your life without fear

What would you like to inspire someone to do?