The Big Update

I think the better I feel, the less I feel like posting on this blog.  Therefore, you could take my long absence to mean that I'm doing pretty good.  In fact, I think I AM doing pretty well.  I'm getting out more, and I'm in less pain than I had been.  I still have plenty of issues to work on, but overall, I'm feeling pretty good.

Now, I think it's fair to tell you some of the stuff I've been up to.

Shortly after Emily went home, Mike and Sue invited me to go to a Railhawks soccer game with them.  We were playing the LA Galaxy (who did not bring their best players), but nonetheless, the Railhawks won in exciting fashion, and I had a very enjoyable evening out.

Me and Sue and Mike

I have continued to experiment with transferring into cars.  I have learned more about the challenges that will be be involved in driving a car.  Here's a list.

• When I transfer into or out of a car seat, often my pants fall down.  This is especially true if the car seat is cloth.  Since I cannot pull my pants up myself, this is a problem.
• Dis-assembly of the wheelchair once in the car does a fair amount of damage to the chair.  I'm not sure what to do about this yet.
• My wheelchair is pretty large, and very difficult to pass into the car once disassembled.  Especially while learning, I anticipate doing a lot of damage to whatever car I'm using.
• I do not have the flexibility to transfer in to any car.  Gus's 2000 Honda Civic, for instance, has a seat height that is too low, and a door opening that is too small for me to transfer in or out.
• There isn't a lot of room in a modern automobile to put your legs if you don't plan to use the pedals.
• If my legs have a spasm while driving, I could kick the pedals, or worse, get a foot stuck under the brake pedal.  I could use my hands to move my foot to a safe location except that both hands are in constant use when driving with hand controls.

Given these facts, my tentative plan is to get an inexpensive car that I can damage without consequence.  Cullen is selling his old 97 Camry, and if the price is right, this may be a good choice for a temporary car while I learn to drive.  I know I can get in and out, but I will have to get some leather seat covers, and devise a plan to restrain my feet in the event of spasms.  It will also be good to have an inexpensive car while learning to use hand controls in case I drive into something.

Last weekend, my brother came for a visit.  On Friday, we took a road trip up to my sister's house in Virginia where I got to see my niece and nephew for the first time in quite a while.  I was worried they wouldn't remember me, but they did.  I really enjoyed seeing the kids, and they seemed to enjoy showing off their couch gymnastics.

We stayed the night, and then on Saturday, we went to the track where Cullen was doing his first motorcycle race.  No matter how many track days you do, your first race is always exciting, and I wanted to be there to see it.  It was my first time being at a track since my accident, and it felt good to be back.  I was also happy because a lot of my friends were there.  Cullen obviously, and his wife Caitlin, my brother Jonathan, my brother-in-law Jon, Gus, and my friend Bert.  Bert took a bunch of pictures, and here are some of them.

It was the longest I have been outdoors since the accident, so it was fortunate that the weather was great.  It was fun to be outside, but it was very revealing about what it's really like to operate a wheelchair in the real world.  I was able to watch the races, but only from one spot on the track.  The rest of the viewing areas would have required me to negotiate rough terrain which simply isn't worth the effort.  It's highly doubtful I could do it myself, and even with help it would be a pretty big challenge.

At one point, I needed to urinate, and therefore needed to use the one handicap accessible stall in the bathroom.  Of course, somebody (not handicapped) was taking a dump, so I had to wait 10 minutes to take a leak in an otherwise empty bathroom.  I can't really criticize as I've enjoyed the luxury of the handicap stall, but this is how I expect things to be from now on.  Extreme inconvenience all the time.

Jonathan and I came directly home from the track after the races.  In the morning, Jonathan had put some compression socks on me so I could use shoes at the track instead of the ridiculous boot things I have been wearing.  When we got home, Jonathan removed the socks to discover that the toenail that was damaged in the crash a year ago had been torn off, probably when the socks were put on that morning.  Jonathan described it as looking like a movie effect designed for maximum shock value.

We didn't know what to do about it, but it seemed like we should do SOMETHING, and it was Jonathan's idea to call Bert's wife Ashley (a doctor) for advice.  Without seeing it, she said we could trim, clean, disinfect, and bandage it until we could get it dealt with by a professional on Monday.  So we spent the next few hours trying to figure out how to do that.  It didn't help that we were both pretty freaked out by the sheer goriness of the situation.  I was grateful I couldn't feel it, but my foot spasms indicated that it probably would have hurt pretty bad.

If your curiosity is greater than your fear of disgusting wounds, you may want to look at these pictures we took.  You can also relive a lot of the experience we had trying to squeamishly decide what to do about it in these videos.

Video1
Video2
Video3

What we ended up doing was soaking it in soapy water, putting some iodine on it, and bandaging it up with the nail intact.  Then we left it that way until Monday when I got an appointment with a podiatrist who pulled it off like it wasn't a big deal.

The other worrisome problem I'm dealing with is a weird problem with my right thumb.  For the last two weeks, I've had a problem where I get this intense pain in my wrist when I move my thumb certain ways.  The weird thing about it is that it seems to be aggravated when I DON'T move the thumb for a while.  It is worst when I first wake up in the morning, but any time I don't move my hand for any length of time, when I go to move again, it starts to pop.  It feels like a muscle attached to my thumb catches on something in my wrist and twangs like a guitar string as it moves back and forth over the obstruction, but then gets better as it moves.  It seems like a weird problem, but it's at least a little bit sore all the time now.  Since I have to use that hand for literally everything now, I'm worried it could become a very serious problem.  I've been waiting to see if it got better on its own, but I have an appointment with the rehab doctor on Monday, and I'll bring it up.  Maybe she'll send me to a hand specialist.  Stay tuned.

Emily's Visit

Emily left Sunday afternoon after staying 5 days.  This was the first time she had been here when I was feeling good enough to go out and do stuff, and as predicted, I had a really good time.  Here's what we did.

Emily arrived Wednesday afternoon.

Thursday, Emily drove me to UNC to see Dr. Dahners and get my staples removed.  We also picked up some x-rays and visited Raheleh up in rehab.  I haven't been up to rehab in a long time, and it was nice to go say hi.

Here's one of the x-rays of my hips after the first surgery, but before the second surgery.  You can compare the amount of bone in the left side to the right side to get an idea of what they removed.  It's a lot.

A lot of bone

We went to the lunch buffet at Tower Indian near my house.  We agreed it was some of the best Indian food we have had.  It's nice to discover good restaurants close by that you didn't know about.

We also discovered La Rancherita.  It's a Mexican place near my apartment that has unusually good food.  I got the Burrito Ranchero with chicken and chorizo.  It was covered in avacado slices and some spicy and savory sauces that were delicious.  Emily got chicken flautas that also had some very unique sauces.  It was definitely way better than average Mexican food.

We also tried the sushi at Neo Asia.  It was delicious, but I had never been there, and I'm really excited to go back and try some of their other menu items.  We saw them bring one lady a pile of fried rice the size of half a football.

Sushi!

Saturday morning, we went to the Raleigh Flea Market where we spent half the day.  We had some delicious hot dogs, and I got to see Julie, and talk to her friend Jen, whose son recently had a spinal cord injury.  They live nearby, so I may see more of them in the future.


Of course Emily had never been to Tribeca, so we had to go there for a burger.  We were there with her friend, Sarah, and I got to try 3 different burgers.

Sunday morning, Emily took me to Carmax to look at cars and see if there were any that seemed easier or harder to get into.  I didn't actually transfer into any of them, but I was able to identify a few that seemed a little better than the others.


I finally got to watch Bellflower, which is a movie I have been saving a long time to watch with Emily.  It was okay, but I'm glad I finally saw it.

I'm sure I'm forgetting a few things that we did, but we did a lot.  Mostly, we ate really really well, and discovered some really good restaurants that are very close by.  I'm looking forward to going back to them although for the time being, I really need to take a break from food.  I've been eating way too much for my mostly sedentary lifestyle.  I need to dial it back a couple notches and maybe have a salad or two.  Prepare for Emily's next visit.

So far this week, I have mostly been trying to recover from last week.  By the time Emily left, I was exhausted.  That's the most time I've spent up and in the wheelchair since I got out of rehab.  It was fun, but now I need to recover.  I could write more, but on that note, I'm going to bed.  I'll try to write again later this week.

Busy

First off, my recovery from surgery is going about as well as could be expected.  My left hip feels great, and I'm pretty happy with the range of motion.  I get the staples out tomorrow.

25 Staples

The right hip still hurts more than I want it to, but it's back to the level it was before surgery.

I'm very grateful to my mom for her help with the first week of my recovery.  It can be stressful having my parents around, but I really don't know how I could have gotten through that first week without her.  I was pretty broken.

It was nice while she was here because Gus's parents have been in town to help Gus build a new deck, so I got to introduce Gus's parents to my mom.  They got along quite famously.  We had several meals together including one at Gus's house where his mom made Runzas.  They're like German HotPockets.  You dip them in mustard.  Very delicious.

Gus's awesome new deck

The last week or so, I've been feeling really good.  I can actually lean forward in the wheelchair slightly.  Not as much as I think I need to, but it's enough that I can do some important things that I haven't been able to do.  Like spit in the sink when brushing my teeth.  I think I can now retire my spit cup.

I think I also might be able to get into a regular car now.  I haven't tried it yet, but I'm optimistic.  That means I might be able to drive soon.  I'm not going to rush it, but that would be pretty awesome.

I don't know how it's possible, but I have felt very busy since my mom left.  I've had several visitors.  Ben came for dinner and to watch Star Trek, Amy brought me delicious food, Cullen came by for dinner and a movie, I took a trip up to see Titus and Brittany and tour Titus's new shop, and yesterday my friend Adam stopped by with his new wife, Caroline, while on their honeymoon.  It's been a whirlwind of visitors reminiscent of when I was in rehab.

Tonight, my friend Emily is arriving for a 5-day stay, so the fun continues.  I'm really looking forward to it because I'm feeling good enough to get out and do some stuff, and I'll have Emily around to make it happen.  Should be fun.

Post Surgery

Surgery number 2 is in the books.  I got home from the hospital yesterday.  My stay at the hospital wasn't much fun, but it was better than last time.  This time we actually got to stay in rooms with walls and doors, so that was nice.

An uneventful picture of me before surgery

The surgeon said the surgery went pretty well.  He said they were able to remove a lot of bone.  More than last time.  They said I lost a lot of blood.  More than last time.  I definitely felt weak afterwards.

Day 2 after surgery

The good news is that my left hip didn't hurt at all after surgery.  I just don't think I can feel my left hip.  My right hip, on the other hand, which they didn't touch, hurt a LOT after surgery.  Of course it hurt before surgery, and it still hurts now.  It also feels like it has less range of motion than before the surgery.  It's all very weird, and I'm hoping it gets better as I heal, but I'll just have to wait and see.

If you don't want your body to do very strange things, don't break your spine.

They are sending me PT and OT to help me at home here, so we'll see how that goes.

I'm still loving my new mattress.  I was fantasizing about it the entire time I was in the hospital.  Those hospital beds are not comfortable, and it was bliss when I could get into my own bed and use a pillow that was not covered in plastic.  I slept about 14 hours last night.

I wish I had something else interesting to say, but I don't.  Right now, I'm just concentrating on resting and feeling better.

Surgery #2 and Bedding

It's almost time.  My second hip surgery is this Wednesday.  My mom arrives Tuesday morning, and will stay until the 15th.  I'm excited that the surgery is happening, and I'm looking forward to seeing my mom.  I haven't had an overnight guest in a while.

I'm hoping that my recovery will be quick, but I'll just have to wait and see.

In other news, I finally got my new mattress.  I'm very glad I got it in time to do my surgery recovery on it.

I did a whole lot of research before buying this mattress (after buying 2 other mattresses that were less comfortable than my 9-year-old metal spring mattress).  This is a 10" latex foam mattress that I got from a place called sleepez.com.

My mattress pieces before assembly

It's considered a "kit" mattress, and it arrives in pieces that you have to assemble.  There are 6 slabs of latex foam, each 3 inches thick, with different softness ratings.  You stack three on each side of a zip-up cover that holds it all together.  Then you can rearrange layers until you get the feel you want.

Looks kinda like this

I ordered XFirm, Medium, Soft for the side I sleep on, and Firm, Firm, Medium to put on the other side and use to experiment with if I wanted to swap out layers.  Fortunately, the XFirm, Medium, Soft feels really good.  So good that the only other arrangement I want to try is Firm, Medium, Soft.  So I have to exchange one of my Firm layers for a Soft, and then I can try both arrangements side by side.  They'll let me exchange layers really cheap for the first 90 days.

I don't know which of those two arrangements I will prefer, but the one I have now feels really good.  It's supportive, but soft.  I can sleep comfortably on my side or my back, or even on my front.  I've never experienced a mattress this comfortable.

Latex is nice because doesn't form lasting impressions like memory foam does.  That's important because I would have a hard time transferring out of an impression.

Also the mattress works perfectly on my electric adjustable frame.  I never thought I'd want one of these, but I've used it a couple days now, and I have to say, it's really nice to be able to sit up in bed comfortably, and work on my laptop like I'm doing right now.  I can even sleep with my feet elevated which I've wanted to do since I came home from rehab, but have been unable.

In conclusion, I wish I had bought this mattress a long time ago.  Years ago really.  But it took months of research to figure out what I wanted.  This one wasn't exactly cheap, but it has a 20-year warranty and should last longer than that.  If you're thinking about buying a mattress, you should try mine out.  I couldn't be happier with it.

Pending Surgery

This morning, I had my pre-op appointment with Dr. Dahners to talk about my next hip surgery.  The appointment was uneventful, and the surgery is next week.  I have to admit I'm a little bit nervous.

I guess it's normal to get nervous whenever anybody cuts a huge hole in your body.  I got the impression today that they cut the bone out with a hammer and chisel, so that sounds violent.  I hope I'm not in too much pain afterwards.

I'm also apprehensive because after the surgery, I have to start doing therapy again.  I'm supposed to start working on advanced wheelchair skills, and things like floor transfers and driving a car.  I'm excited to try that stuff, but I'm also pretty sure it's going to put me on a timer to go back to work. 

My feelings about return to work are mixed.  I'm looking forward to getting back to a sense of normalcy, and I'm also really looking forward to the social aspect of it.  It would be nice to get out of the apartment on my own, and see friends and coworkers every day.

At the same time, I'm worried they might force me out there before I'm really ready.  If that were to happen, I might find myself in situations I don't know how to deal with, or I might find myself injuring myself just by spending too much time out of the house.

So that's what I'm thinking about right now.  I don't know if I have any reason to worry, but it's my nature.  Hopefully my fears are unfounded, and I'm worried about nothing.  The next step is just to worry about getting through the surgery.

In other news, I ordered a new mattress this week which should arrive tomorrow or the next day.  It should arrive tomorrow or Saturday, and I'm optimistic that it will be really comfortable.  So I'm really excited about that.  Hopefully it will help with some of my butt pain by relieving pressure when I sleep.

I also got to the wheelchair store this week to try out some different seat cushions.  I borrowed one that seems a lot better.  It's filled entirely with air, so it's very comfortable, but it's much harder to transfer onto and off of.  It's called a Roho, and I may have to get one.  I might use it temporarily until my butt feels better and then switch back.  I'm not sure yet, but it's nice to have options.

A Roho air cushion.

Healing Heel

The wound on my heel is healing nicely.  I could try to tell you about it, but instead, I'm just going to share the slide show of all the pictures Gus has taken of it.  He takes the pictures so we have a record, but also (mostly) because I can't actually see it myself.  I'm not flexible enough to see the bottom of my heel.

Heel Pics

The other thing I want to do is quickly talk about my butt.  I have a major pain in my butt.  I know many of you are confused because I AM a major pain in the butt, but try to stay with me.

Questions from many of my recent visitors indicate to me that I haven't done an adequate job of explaining the pain in my butt.  My spinal injury is what's known as "incomplete".  To me, that sounds like I didn't do a proper job of injuring myself, but what it means is that my spinal cord was not completely severed, and that some signals are still making it through from the paralyzed part of my body to my brain.

For some people, an incomplete spinal injury results in partial control of the muscles in their lower extremities.  For me, it means that I have no control, but some sensation.  I can't feel anything that happens to the exterior of my body.  If I pinch myself or slap myself, or cut myself, I don't feel it.  I can't feel the horrible wound on my heel.  However, I do feel most of the pain that originates from inside my body.  So I would feel a muscle injury or from a deep bruise.  If I broke a bone, I suspect I would feel that.

It feels like there is a very deep bruise inside my butt cheeks, originating near my pelvic bones, right where my weight goes when I sit.  This pain has been getting worse over time, and it's now at a point where it's all I can think about when I'm sitting up.  I think dealing with this pain, and whatever actual injury may be associated with it will likely be the biggest challenge to getting on with my life post-injury.