Stuck

It's been a long time, hasn't it.  I have been trying to figure out what to write for a month and a half now.  I've even started writing a couple times.  I wrote about a few good things that happened in October.  The Martinsville guys came for a visit, my sister came down with the kids to go to the fair, and I got a root canal so I can chew pain-free for the first time in years.  But writing about that would imply that I'm doing okay.

I like writing about things when they are going well.  I like writing about successes and improvements.  I haven't had any of that in a while.  I don't like to write about my problems because it sounds like complaining.  The people who know me best know that I'm a complainer by nature.  Complaining doesn't make you any friends, so I try really hard not to do it, but when I'm not feeling good, it's hard.

But if I'm going to update my status, I'm probably going to have to complain a little.  If you don't want to hear me do that, stop reading.

Back before I had my first HO surgery, my right hip hurt a lot, so whenever I sat upright, I put all my weight on my left side to try to relieve the pain.  Over time, I began to suspect that I was damaging the soft tissue inside my left butt cheek around the left butt bone.  The medical term is "ischial tuberosity".  I didn't think I had any choice but to do that.  I could have chosen to get in bed and keep weight off it until my surgery, but I had a lot of stuff I wanted to do, and lying in bed is boring and unproductive.

Fast forward 16 months, and the pain in my ischial is almost unbearable, and still seems to be getting worse every day.  For the last month, I have gotten out of bed to eat and go to the bathroom, and I stay up if I have a visitor, but otherwise, I'm in bed.  I've spent the last month trying to think of a way to elaborately explain on the blog what it feels like, but that's probably a waste of time.  I'll just say it feels like the bone is tearing through the muscle.  That's what it feels like, and that's what I think is actually happening.

Some days it hurts more than others.  Sometimes after getting up for a while to eat, I get back in bed and curse into my pillow for a couple hours while waiting for the pain to subside to the point where I can sleep.  Occasionally I have a day when it barely hurts at all, and I usually use those days to try to do things that I need to do around the apartment, like laundry and cooking.  I'm pretty sure I'm doing more damage on those days because the next day, the pain is invariably worse than ever.

Even lying on my back or my left side in bed is very painful.  That leaves my right side or my stomach.  I can't do anything but sleep on my stomach, so I've been spending a lot of time on my right side.  I'm starting to worry I might be risking damage to my right hip from lying on it so much.  Right now, I'm lying on my right side with my laptop propped on its side resting against my knee so I can use both hands to type.  It's awkward and uncomfortable, and it's one reason I haven't posted in so long.

I get asked a lot, "Why don't you use some pain meds?"  I don't ever like to use pain meds, but I'll consider it when I don't think the pain is useful.  In this case, I believe the pain reminds me to stay off my butt.  If pain meds worked on this pain, which I think is doubtful, I would be encouraged to spend more time sitting up, and would probably make the problem even worse.  As it is, the pain reminds me to do pressure relief when I'm up, and it reminds me get back in bed at my earliest opportunity.  I think that's a good thing.

Being stuck in bed is keeping me from getting on with my life.  I can't do any rehab or work on driving, or exercise or anything.  Apart from this pain, I actually feel pretty good.  My right hip isn't pain-free, but it feels better than it did, and I would really like to get out and try to do something, but instead I'm just lying here getting fatter and weaker. 

I finally called my doctor this week to see if she had any advice.  She agreed that staying off it is the only thing I can do, although she did suggest I should eat more protein, so that's something I can try to work on.  I have been trying to cut down on my calorie intake because I'm getting too fat, but that has probably cut my protein below what it should be.  I have to eat more protein than a normal person because it helps heal wounds and prevent pressure sores.  Unfortunately, low-fat protein sources don't taste very good, and the more of them I eat, the less room there will be for things I enjoy.  If anyone has any ideas on that, I'd love to hear them, but keep in mind that I can't do a lot of prep work.  My brother helped me prepare a variation on these when he was here that I have really been enjoying.  Supposedly animal protein is the best, and eggs are good for 6 grams each.  I also just ordered a few cases of these in different flavors.  They have 20 grams apiece so hopefully I can choke them down.

My brother came to visit over Thanksgiving, and I enjoyed the visit a lot, but I definitely sat up too much and made my ischial worse.   I was supposed to go with him up to VA to visit my sister and my parents, but Thursday morning, my battery died, and we couldn't get the van started.  It sucks because I was looking forward to the trip, but I think it's best I didn't go because it would have been very bad for my ischial.  As it was, Gus and his family invited me over for dinner.  I enjoyed dinner at Gus's very much, and Gus makes the best turkey I've ever had by a wide margin, but even eating over there was more sitting than I probably should have done.

I haven't seen very much of Gus lately.  He's been busy, and I think he's getting tired of coming over all the time anyway.  That's fine.  I'm pretty sure he'd come if I had an emergency, and I don't really need as much help as I used to on a daily basis.  Tobi has been helping with showers and grocery shopping on occasion, for which I am profoundly grateful, but most days I'm alone all day.  That might be for the best since I feel pressured to get up when people are over.  But I'd be lying if I said it wasn't kinda lonely.  I cannot imagine how people dealt with these sort of long-term situations before smart phones.

One bright spot in all this has been the Free Food Fairy.  Occasionally, my friend Brian sneaks in on his way to work and leaves leftovers his wife Kelly made in my fridge and then leaves without waking me up.  And then I don't have to worry about dinner for a few days.  It's really one of my favorite things, and it really means a lot to me.  Kelly's sister, Amy also still brings me food sometimes.  She doesn't deliver it with a B&E, but it is no less appreciated.

There's a lot more I could write about, but I think this post is long enough, don't you?  I don't know when I might want to write again.  I don't want this blog to lose its generally positive tone, but it's hard to stay positive when you don't have any idea when things might get better.

Just the Facts

It's been a long time, hasn't it?

Sometimes this blog feels like work, and this is one of those times.  Here's what happened.  I had an experience that really deserved a thorough write-up on the blog, so I wanted to wait until I could really write it up properly.  I wanted to have time to get my ideas organized, and then make it entertaining, and then edit it until it felt good.  But before I got around to it, something else happened that also deserved a detailed retelling.  And then I was putting off twice as much work when the next thing happened, and now I find that I have about 5 or 6 things that I want to write about in detail, and there is no way that's going to happen.

So I'm just going to hit the bullet points so I can get caught up.  I'm short-changing my readers, but as Evelyn says, "You get what you get and you don't throw a fit."

New Friend

A couple weeks ago, I met a guy who lives about 45 minutes north of here, who has almost the same exact injury that I have.  He was injured falling off a ladder less than a month after I had my injury (on my birthday no less).  He also has HO, and we have talked on Skype a couple times, and we also met in person at the SCI BBQ.

His name is Jarrad, and it's nice to know someone in such a similar situation.

Cripple Picnic

The North Carolina Spinal Cord Injury Association had their annual Fall BBQ on Saturday, October 5th.  Gus and Uyen were able to take me.  It was a lot of fun.  It was the first time I was able to go to one of their events since I was in rehab.  I met a bunch of people with different levels of injury, including Jarrad.  There was one 24-year-old guy there who was a quad, and had very little use of his hands, but he was still pushing a manual wheelchair, and was able to drive, and was working full-time, and made me feel generally pretty bad about what I'm not yet able to do.

Before the BBQ

When we arrived, and before the BBQ started, Uyen wanted me to pose for a picture.  I thought that was silly, but I obliged.  I figured I'd take a bunch of pictures once the party started.  As it happens, I forgot to take any pictures, so it's good I have that one.

Another thing I learned is that, in spite of what I had been told (repeatedly and recently), I do have to go to the DMV and get an endorsement on my license to drive with hand controls.

Egg Project

I spent a couple hours one day making 6 omelets to freeze.  It's important for me to eat enough protein to avoid skin breakdown, and they tell me eggs are the best source.  I learned how to make them when my mom was here, and I learned that they freeze and reheat pretty well.

Finished product

The mess

I'm really delighted with how they turned out, and I'm looking forward to a week of delicious breakfasts.

Hand Cycle Clinic

The NCSCIA held their biannual hand cycle clinic last Friday.  I've been wanting to try out hand cycling again for a long time, and I finally got to try it out.  It was challenging to find a ride, and I almost didn't get to go, but Brittany was able to come pick me up and take me.  It was a lot of fun, but I'm definitely not in shape to do much of it.  I rode for maybe 10 or 15 minutes, and when I was done, I thought I was going to die.  It didn't help that I tried to get cute on the first of my 2 laps and did it in a higher gear than maybe I should have.  I almost couldn't finish the second lap.  I looked really good on that first lap though.

The only (terrible) picture I took at the clinic

What I learned about hand cycles is that they are extremely hard to pedal, even harder to steer, and if you get up any speed, they'll tip over in a heartbeat.  I didn't crash one, but it seemed pretty obvious to me that they aren't terribly stable in a turn.  Still, I may end up with one of these one day.  There aren't a lot of ways for a paraplegic to do cardio.

Visit With Titus and Brittany

After the clinic, I did some shopping with Brittany, and then I had dinner with her and Titus up in my old neighborhood.  I hadn't seen those guys in a while, and I got an extremely pleasant surprise.  Titus's brother David, and his wife Brianna, who are also friends of mine, just moved back to Raleigh from Texas, so they came to dinner, and now I have more friends in the area.  Hooray!

New Heel Sore

I've been dealing with a pressure sore on my heel since my last surgery.  It hasn't been fun.  On Monday, I discovered that I've got another one right next to the first one on the same heel.  I got this one just from sleeping.  I've been wearing the boots to protect my heels, but apparently they don't work properly in the position I like to sleep in.  It's very upsetting.  As easy as it is to get these things, and as long as it takes them to heal, I'm thinking that I will always have them for the rest of my life. 

My bones trying to escape

New Haircut

Uyen's sister, Dianne, has been in town for a week or so, and she is a cosmetologist, so she came over last week and gave me a haircut.  It's a good haircut, and it was free, so I'm happy.  My hair is dirty most of the time, and the longer it is, the nastier that feels, so it's really nice to have short hair right now.

Surgery Recovery

I guess I'm just about recovered from that last surgery.  I definitely have a lot more range of motion than I had before the surgery.  I'm not sure I have as much as I want though.  I haven't really done any testing of my range of motion because the surgeon told me not to.  They don't know for sure, but they suspect that stretching may encourage HO to regrow, especially in the weeks after surgery.

So I've been trying to baby my right hip.  Just from daily use, I know it bends farther, but it still hurts to bend it very far, so I'm not sure what to do about that.

I'm supposed to do some outpatient rehab on it, but I really need to start driving because nobody I know is going to be able to give me rides for all the rehab I need to do.  So I'm not entirely sure how we're going to proceed on that front.  There has been some talk of getting a PT to come to my apartment and help me work on car transfers.  That would be a good start.  I should probably try to start that sooner rather than later.

The End

And now I'm going to bed.  I have to wake up early tomorrow to go to the wheelchair store and get some new brakes installed on my chair.  My old brakes barely work anymore, and I'm hoping these new brakes make my life a lot easier.  We'll see.

Lap Tray

I write this blog mostly for my friends and family to keep them updated on my progress so I don't have to field constant questions from everyone I know.  I do it because I'm lazy.

But recently, I've been contacted by a couple paras who are interested in things I might know.  And in the year and a half that I've been doing this, I've learned a few things that might be helpful to other people, so from time to time I'm going to write about them.  If you know me, you already know about most of this stuff, so feel free to skip these if you want.  You won't miss much.

When I was in rehab, my OT (Raheleh, if you're a long-time reader) was pretty adamant that I should avoid using tools whenever possible.  I think her attitude was that if I learn to do something by using a tool, it will be very difficult to ever learn to do that thing without that tool.  The less tools you need, the more independent you'll be.

I think that's a good theory, and I agree with it in principle, but tool use is what separates us from the animals, and our entire society is built on the use of tools, so why shouldn't we participate?  We should, and I do.

The tool I use far more than any other is my lap tray.  I literally do not know how I could survive without it.  I suspect I would starve to death.

The reality of being in a manual wheelchair is that you need both hands to move.  If you're holding something in one hand, the most you can hope to do is go in a circle.  Realistically, you can't even go a few feet holding one thing.  If that thing is easily spillable, or if, God forbid, you have TWO things, you're completely stuck.  And don't even get me started about slight inclines.

So if you want to move anything from one place to another, you have to put it in the only place available to you: your lap.  This is okay if the thing you're transporting is not easily spilled.  A closed water bottle can be braced between your thighs, but remember that you cannot use your thighs to squeeze the item, nor can you feel when it starts to fall over, so this can still be tricky.  And what if the item is hot and spillable?  This would be extremely dangerous with an open mug of hot coffee.

What if you want to move a plate of food?  You might be able to balance the plate on one of your thighs, but that's going to be pretty precarious, and your thigh is pretty slippery.  What if the plate is hot?  What if your thighs aren't level?

Depending on how you sit in your wheelchair, your thighs may slope forward or back.  Due to my HO, for a long time I couldn't sit upright in my chair, and I was slouched down.  My thighs sloped down toward the knee fairly dramatically, so anything I put on my lap would slide immediately onto the floor.

These are very serious problems that you never think about until you get yourself paralyzed.  So how do we solve it?  My solution is a lap tray.

I developed my solution over several months with help from Gus.  I will spare you the design progression.  I think it's interesting, but this post is already pretty long.  I'm not sure the tray is perfect yet, but it's pretty good.

The finished product

I wanted something with sides that were tall to help prevent things from falling off, and that could contain a small spill if one occurred in transit.  I found a tray I liked at Target, but the top surface was slippery, and anything I put on it would slide all over the place.  Because my lap was sloped downward, that meant it would slide to the front of the tray and cause the tray to fall off my lap.  The bottom of the tray was also quite slippery, so the whole tray slid off my lap quite easily.

To solve the first problem, I sanded the top surface of the tray with 400 grit sandpaper and then sprayed it with a product called Plasti Dip.  It's a rubberized coating that you spray on tool handles to protect them and make them grippy.  You can get it at the hardware store near the spray paint I believe.  This created a nice smooth grippy surface that dishes won't slide on.  It's also pretty easy to wipe up.

Some of the things I used to modify my lap tray

Next, I needed to level the tray on my lap.  I did this with shim sticks.  Gus actually made them for me.  At most major hardware stores, you can buy fancy poplar boards 2-1/2" inches wide in a variety of thicknesses from 1/4" up to 1".  Gus used these to create a selection of shim sticks for me so I can change them out to adjust the angle of the tray.  This was especially important when the HO was bad because I slouched down in the chair a different amount on different days.  We cut the boards 15" long, and made them out of poplar because it's lightweight.  Gus sanded them and put a couple coats of polyurethane on them to keep me from getting splinters.  He also stained them to make them look pretty.

I only really use the first 3 or 4 sizes between 1/4" and 1" thick

The finished boards will level the tray, but they are still pretty slippery, so I used some self-adhesive rubber weather stripping to create a grip strip on each board that won't slide on my leg.  I don't trust the adhesive on the strips so I also hit each strip with a staple gun to make sure it can't fall off.

I attach the boards to the bottom of the tray using industrial strength Velcro.  I used to use this stuff to attach my lap timer to my race motorcycle, and it is STRONG.  You can get it at a hardware store or probably Walmart.

Put the soft side of the velcro on the tray so it doesn't stick to your pants if you don't use a shim stick

The only thing I'm not crazy about on the tray is the Plasti Dip coating on the inside.  It nicks easily and will start to peel off in sections.  It's really not much of a problem, and when it gets bad enough, you can just peel the rest off and respray.  It peels off pretty easily if you pick at it.  I would prefer a more permanent solution, but this works well enough until I think of something better.

So that's my tray.  It's how I get food from the kitchen to the dining room every day.  I love it and I honestly don't know what I'd do without it.

Fat and Happy

I'm getting fat.  If you've seen me in the last 6 months, this is not news to you.  I haven't had much to do for the last year besides sleep 'til noon, eat, poop, eat some more, and go back to sleep.  On the days that I cry incessantly for no reason, I am exactly like an infant.

Being fat is not helpful.  The extra weight complicates transfers, and the belly reduces the size of my lap which is really my only work surface.  Anything I want to move from one place to another has to balance on my lap because I need both hands to push the chair.  At some point, the belly can also interfere with hip flexion.  So far that isn't one of my problems.

You may see my added size only as a negative, but you're overlooking all the positive aspects.  I like to think that the extra volume increases my visibility when I'm out in the street.  When a driver sees me in a crosswalk, they think, "If I run over that gigantic wheeled invalid, I will undoubtedly break my car!"  Also, the extra weight increases my stability in turns probably.

At this point, you're obviously wondering, "How has he achieved these incredible benefits to his health and well-being?"  There's no one simple answer to that question, but I will share one important contributor.  Fresh baked cookies.

I use my toaster oven every day, and I don't know how I ever lived without one, but recently I realized I could use it to bake small batches of cookies.

I went to the store and got some pre-cut cookie dough.

I prefer these to the Nestle

 And I got some toaster-oven sized cookie sheets from Farberware.

I cut a silicone baking sheet to fit

And I bake it in the toaster oven for 11 minutes.

Preheats in 45 seconds

And then I have fresh baked cookies for dessert!

Yum!

This is just one of the ways that I keep myself squeezably soft!

Stairway to Awesome

Yesterday I felt incredible.  Very little pain and lot of energy.  Best I've felt since rehab.  Gus came over and we did a practice car transfer, and it was effortless.

Today I don't feel great.  Lots more pain.  We did a car transfer, and it went quite badly.  Sigh.

Gus has been busy the last couple weeks with a project he's been doing for a neighbor.  He does these sort of jobs for his neighbors sometimes, and I think he's kinda proud of this one so I thought I'd share some before and after pictures of it.

Gus's stairs

They look so good, I'm thinking about having him put some in my apartment.

Football

I wouldn't say I'm 100%, but I'm feeling much better.

My hip feels a lot better.  I think the pain is less than before surgery.  Some days it is anyway.  There are still painful days, but generally, I think things are getting better.  I'm not testing my range of motion much yet, but I think it's already better than before.  Everything isn't perfect.  I've still got to wear the boots because of this thing on my heel, and I have pain in my butt from sitting, and pain in my back from the hardware, but I have stopped bleeding, and I'm feeling pretty good overall.  And just in time too.  It's time for football.

There's so much football going on right now, it's almost overwhelming.  The Ravens don't look like they are going to be very good this year after losing so many players in the off season so I'm not too excited about that.  It looks like the Eagles' new coach is going to have them playing some interesting football this year, so I'm looking forward to see what they do.  They may not win a lot, but their games should be interesting, win or lose.

It's crazy how much football they can cram into a single weekend.  If you try to watch just the good college games on Saturday, and then all of the NFL games on Sunday, it takes the whole weekend.  Fortunately I have nothing better to do right now.

The Woods

I think I'm out of the woods now, but it was pretty hairy there for a while.

After the meds finally wore off, the pain came back, and the hip hurt like hell.  Besides that, the low blood count kept me feeling extremely weak and woozy for several more days.  All I wanted to do was sleep, but I still had to wake up every 4 hours to pee.

Sunday, almost a week after surgery, was the first day I finally felt like I had a reasonable amount of energy, and I felt like a lot of the pain had subsided.  Sunday afternoon I decided it was time to take a shower.  For the surgery, they put compression socks on my feet and lower legs to squeeze the blood back up toward my heart.  When my mom them off, she noticed that the pressure sore on my right heel had returned.

I was pretty upset about it because it means I have to go back in the boots.  The contracture boots keep my heels from making contact with anything, but they are not fun to wear.  The last time I had this pressure sore, I had to wear them for 6 months.  I don't know what they weigh, but I think it's 3 or 4 pounds each.  They make transfers harder, and they make it difficult to spend much time outside.  I view it as a huge setback.

So when my mom discovered the sore, I attempted to pull my foot in for a closer look so I could render my disgust more directly.  When I did so, I heard a noise come from the vicinity of my hip.  It was sort of a quick "fffffft".  When I looked down at my thigh, there was a massive amount of blood coming out from under the bandage.  It was more of my own blood than I'd ever seen before.  I'm not sure myself, but my mom thought it was about 1/4 cup.  Beyond that, blood was still flowing from a cut about half an inch beyond the end of my incision.

We both took a moment to freak out a little, and then we paged the orthopedic resident to get some advice.  They advised us that the dark color meant the blood was from a hematoma.  Basically the area of the surgery had continued to bleed internally, and when I bent my leg, it squeezed the pocket like a huge pimple until it burst.  They insisted I come to the hospital so they could take a look at it.  So I spent a big chunk of my Sunday afternoon at the hospital getting poked on by doctors.  They tried to squeeze as much blood out as they could by really laying into the site of the surgery with their full weight.  It didn't hurt much when they were doing it, but it hurt a ton the next day.  When they were done, it was still oozing blood at a pretty good clip.

Every few hours

So for the next couple days, we had to change the bandage every few hours and it still ruined several pieces of clothing.  It continued leaking for 4 more days although it slowed each day.

Between the blood and the pain, we thought it would be best if my mom stayed another couple days.  Fortunately Southwest is really nice about letting you change tickets so she left Wednesday instead of Monday.  By Wednesday, I was much more under control.  The pain was tolerable, and the blood flow was under control.

So I think I'm out of the woods.  I'm certainly not done recovering.  Not by a long shot.  But I think I'm done with the worst of it.  It should get easier from here.

Morphine

Recovery from this surgery has been the worst by far.

The last few days since I left the hospital have been really tough.  They gave me a slow-release morphine pill when I was in the hospital to help with the pain.  I was never quite sure how much it was doing, but I felt pretty good on Wednesday when I left.  On the way home, I felt good enough to eat at my favorite restaurant (Firebirds Grill) while we waited for CVS to fill my prescription order.

When I got home, I took some of the new pain drugs we just got, which should be the same ones I was taking at the hospital, and I went to bed for 4 hours.  When I got up, I thought I was dying.  My mouth was so aggressively dry that it almost unendurable.  I know what you're thinking: "His mouth was a little dry?  That doesn't sound so bad."  Have you ever heard of the cinnamon challenge.  It feels roughly like that.

So I drank some water and calmed down, and then I transferred to the wheelchair so I could go pee.  That went okay, but by the time I was ready to transfer back into bed, I felt so weak and light-headed, I didn't think I could continue sitting up, and I definitely didn't trust myself to do the transfer into bed.  We ended up using a slide board to do the transfer so I didn't have to support my weight.  I haven't used that since rehab over a year ago.

When I got in bed, I felt completely terrible.  Weak and light-headed and just awful.  I wasn't sure what my blood pressure was, but I felt it might be dangerously low.  I couldn't find my pulse which has never been a problem.  Eventually, I decided to call the paramedics to come measure my blood pressure.

While I was waiting for the paramedics, I decided to use my fancy adjustable bed to elevate my feet, and my mom had the idea to use my fancy air-pumped leg squeezers to try to squeeze blood up toward my heard.  I think that worked, and by the time the medics arrived, I was feeling a lot better.  When they measured my BP, it was in a pretty good range, but I would love to know what it had been.

The paramedics said that both the dry-mouth and the weird feeling could be caused by the morphine, so I decided to stop it cold-turkey.  The pain would be better than the side-effects.  So I stopped all pain meds on Wednesday night.

The problem with slow-release pain meds is that they don't leave your system just because you stopped taking them. It is now Friday evening, and I think I'm still feeling some of the after effects of the morphine.  I think I have a morphine hangover.  I haven't been out of bed in two whole days, and the dry-mouth, while improving, is still a problem.  The lightheaded feeling is better, but still present, and the pain has slowly been returning.  Turns out the morphine was doing a lot about the pain.  In general, I feel horrible, but I don't regret stopping the morphine... yet.

I'm so glad my mom has been here.  I don't think I could do this without her.  She has allowed me to stay in bed by bringing me everything I need when I need it.  Without her, I would have had to transfer out of bed every 4 hours at least to pee.  I don't think I could have done it.

In the next hour or so, I'm going to attempt to get out of bed and into the wheelchair.  I have no idea how it's going to go, but I'm looking forward to trying it.  I think the pain is going to be a problem, but I also think I'm going to have to either suck it up or go back on the morphine.  It would have to be incredibly bad for that to happen.  I don't ever want to take morphine again.

Surgery Report

HO Surgery number 3 is in the books, and I got to keep the leg.  As I lay here in my hospital bed the day after surgery, I feel like I should post an update.

I was able to talk to Dr. Dahners before the surgery, and explain my concerns about what I wanted to remove.  We agreed that he would try to get all the pieces.

The last 2 HO surgeries have caused relatively little pain for me, but I think I have been steadily regaining a small amount of sensation in my right hip.  It's what has allowed me to feel pain from the HO, and after this surgery, I was in agony.  A day after surgery, I'm still very reluctant to try to move this hip at all.  I doubt it will damage anything, but it hurts really really bad.

I talked to Dr. Dahners this morning, and he told me he thinks he was able to remove all of the bone we talked about.  I had been wondering since the first surgery what sort of tools he uses to cut bone, so I asked him.  Hammer and chisel is the answer.  That would explain the pain.  I wish I could get another CT scan to confirm the results, but he says he tested the range on the OR table and it was in the 125-130 degree range.  That's all I could ask for.

I lost a lot of blood in the operation.  When he removed the piece attached to the femur, it cut a lot of blood vessels.  I ended up losing 900cc of blood which is about a quart.  So twice what you would give to the Red Cross.  They wanted to avoid giving me a transfusion because it increases the risk of complications, so I've been very tired today.  My blood pressure has been coming up slowly over the last day.  Right after surgery, it was at about 84/43.  It's now up to around 89/47, but that's still really low.  So I get light-headed whenever I exert myself at all, but the pain has been keeping me from exerting myself.

I know they are going to send me a physical therapist tomorrow morning to evaluate my strength and mobility.  I'm expecting to go home tomorrow, but it will be interesting to see how that happens.

If this post seems a little loopy, it's because I have been taking the narcotics this time.  The past two surgeries, I was able to avoid the good stuff, but this time, I'm taking whatever they offer me.  So far it has been Oxycodone and a slow release morphine pill.  The morphine particularly helps, but it makes me a little loopy.  Tired mostly.

Mom and I are getting pretty good at this surgery thing.  We have gotten really good at packing for these short hospital stays, and really good at remembering what to ask for and when.  If you ever need to go in for a surgery that will result in a night or 2 in the hospital, I can help you out.  For instance, bring ear plugs.  It can make all the difference in letting you sleep at night.  Also, bring your own pillow.  Hospital pillows are made of plastic for easy cleanup, but that makes them as uncomfortable and sweaty as they could possibly be.

I'll probably be going home tomorrow, but it will be interesting to see how active I'll be when I get there.  I'm taking some of these drugs home with me, and I may end up sleeping the rest of the week.  I guess it just all depends on how quickly the pain subsides.

CT Scan

I got my hands on the CT scan on Friday, and it's pretty fascinating.  If you come over, you should ask to see it.  Anyway, here is the picture that is most relevant to what we're doing with this surgery today.  It is from the side.

CT scan

So the part circled in red is in front of my pelvic bone, and the part circled in green is attached to the front of my femur.  When I bend my hip, those pieces of bone approach each other and crush all the muscle that is between them.

Dr. Dahners believes the part in green is what is causing the bulk of my problems, but it's deep inside and near a big artery so it will be dangrous to go after.  I think he's willing to try it, but if he messes up, I could end up losing the leg.  I hope that doesn't happen, but I think it's worth the risk

Adventure Time

I have surgery this coming Monday to remove some bone in my right hip that Dr. Dahners thinks may be impacting my range of motion.

In recent days, I have been thinking that range of motion is not my only problem in that hip.  I also have a lot of pain, and it's possible that the pain is not caused by the same bone that is causing the range of motion issues.  Unfortunately, I don't know what is actually going on in there because when I met with Dr. Dahners a week ago, I failed to ask to see the CT scan myself.  Before they cut on me for the 3rd time, I'd like to ask an intelligent question or two about what they are going to cut and what they will leave.  But I can't do that unless I can see the CT scan.

I can get a copy of the CT scan at the hospital.  I just have to get there.  I don't know many people who can help me during a work day.  Tobi was at orientation for a college course she is starting, Gus was helping a neighbor with something all day yesterday so I found myself with an entire day to kill and only one thing I really wanted to do.

I have car I can drive.  There isn't a step in the process I haven't done before.  The more I thought about it, the more excited I got.  Eventually I realized that if I didn't try it, I would regret it.  And so I decided it was time to have an adventure.

First I had to plan.  What are the steps in the plan, and what can go wrong?

1.) Transfer into the car in my parking garage.  First I have to get to the car.  As long as my neighbor is at work, I should be able to get to the driver's door.  I've done a ton of car transfers.  They aren't the easiest, but I think I'm getting pretty good at them by now.  I have to get the wheelchair parts in.  I've proven a couple times that I can do it.  It's really hard, and one of the pieces could roll away where I can't reach it.  If that happens, I'll have to call somebody to come fetch it.  I don't really think that will happen, but I have the number of the Palmisanos across the hall.  They're elderly, but they could probably come wrangle a wheel if I screw up badly enough.  I will also need to check the fuel level.  As long as it's more than a quarter of a tank, I should be fine, but I'm not going to want to take it to a gas station.  That would require an extra pair of car transfers, and I'm not even sure I have the skills to pump gas yet.  That would be a deal breaker.

2.) Drive to the hospital.  It's about a half-hour on the road.  It's the middle of the day so there shouldn't be much traffic.  After trying them out, I'm not really worried about the hand controls.  They are pretty easy to use and pretty intuitive.  I'm slightly concerned that I still have Cullen's license plate on the car, but I can put my new tag in my backpack in case there is a problem.  But there shouldn't be a problem.

3.) Park at the hospital.  There is a handicapped parking lot right in front of the hospital, but I don't think most of the parking spaces have access reserved on the sides of the car.  That makes it fairly useless for me so I'll probably have to park in the parking garage.  The handicapped parking spaces in the garage should be level so transferring out of the car should be about as easy as it gets.  And there are always a ton of people around so if I get in trouble, I can probably flag down a pedestrian.

4.) Roll into the hospital.  I've been in the hospital many times so the only obstacle I'm worried about is the bridge from the garage to the hospital.  It is sloped, and while getting down it is easy, it might be too steep to get back up.  But again, there are always a ton of people around, and people who are generally sympathetic to people in wheelchairs, so I bet somebody will offer help before I get desperate enough to ask.

5.) Return home.  The return trip should just be the reverse of what I've already done.

6.) Park at home.  Depending on what time I get home, my neighbor could be home from work with his car occupying the parking space that I need to use to disembark.  But if that happens, there are some handicapped spaces near the building that I can use.  That shouldn't be a problem.

Once I broke it down into steps, it seemed even more doable.  I knew I would get physically tired from the car transfers, but there should only be 4 of them and I had all day to do them.  When I got home, I could sleep for the rest of the day.

By the time I had formulated my plan and packed up the pills and supplies I might need for a long outing, it was 11:00.  Still plenty of time.  The weather was excellent, and I was excited to get started.  It was the most exciting thing I'd done in a long time.

When I got to the parking garage, I was relieved to see that my neighbor's car was gone so I could access the door.

I put the keys and my phone in the map pocket on the door as I usually do when getting into a car, and I tossed my backpack in.  The transfer into the driver's seat went fine.  Once I got in, I started the car to check the fuel level.  It was less than 1/8th of a tank.  Not nearly enough to make the trip.  But I had spent too much time mentally preparing for an adventure, and I'm a problem solver.  I wasn't ready for the adventure to end before it started.

So I came up with a plan.  I would ask Mr. Palmisano, my elderly neighbor, to ride with me to the gas station across the street and pump my gas.  I'm not even sure the Palmisanos are home, and this request seems like something best explained in person, so I decided to just roll back upstairs and knock on the door.

So I transferred back to the wheelchair.  Midway through the transfer, I realized something wasn't right.  I had lost momentum halfway between the car seat and the chair seat, and found myself stopped directly in between.  I tried again to muscle myself at least partway onto the wheelchair seat which is how a lot of my sloppier transfers end, but for some reason I couldn't get any closer.  I looked down to see if I could figure out what was hanging me up, and... shit.  My left knee was hopelessly jammed in between the front legs of the wheelchair.  I tried to go backwards into the car, but the hand holds I had chosen meant I couldn't push that direction.  I couldn't go forward, and I couldn't go back. It took me a long moment to accept it, but I was going down.

Since my injury over a year ago, I have never fallen out of the wheelchair.  That's good because I don't have the skills or the strength to transfer off the floor.  I haven't even tried it since rehab.  I had always assumed that my first fall would be in my apartment, but that would not be the case.

I was still dangling, mid-transfer, between the car and the chair, but I knew I couldn't stay there for long.  My strength was going to give out any second, and I thought I should probably try to lower myself as gently as possible before weakness dictated an uglier landing.  My biggest concern was the awkward position of my left leg.  I was going to end up sitting on it while it was tangled up in the wheelchair.  I was hoping the position wouldn't be so awkward that I would injure it when my weight came down, but there wasn't really anything I could do about it so I just tried to make sure it happened slowly.

When I got to the ground, it seemed like my left leg wasn't too awkward underneath me, but I was still sitting on my bare ankle which was directly on some very abrasive concrete.  My right foot was still in the car which was probably more awkward than the left leg.  Fortunately I had saved enough strength that I was able to wiggle myself out of the chair and get my right foot free of the car.

If you're looking for something unpleasant to do, try rolling around on the ground in a parking lot.  At least the concrete was dry and relatively clean.  It would have been really unpleasant in a McDonald's lot.  Imagine if there was broken glass or a spilled milk shake.

After all my struggling, I found myself seated on the ground next to my car.  This scenario was not something I had planned for.  I was not supposed to screw up a simple car transfer.

The parking garage was empty.  Fortunately the map pocket where I put my phone was within reach, so I could call for help, but who to call?  I needed was somebody who could physically lift me up and put me in the wheelchair.  The Palmisanos were never going to manage it.  Pretty much everyone I know was at work, and even if I could find somebody to come get me, it would probably take them at least 15 minutes to arrive, and that's if they could drop what they were doing.  Mosquitoes swarm in my building's parking deck, and I wondered if I would have any blood left by the time someone got to me.

Then I had an epiphany.  I recently made friends with the maintenance guy that works in the complex.  He's friendly and strong, and he has a golf cart so he can get here quickly.  So I called Katie at the front office and explained the situation, and she radioed Brett, and he arrived in seconds.

So my adventure did not end the way I had hoped, but if you know how it's going to turn out, it's not really an adventure, is it?  I don't regret it at all.  What did I get out of it, you ask?

• Excitement!  It felt really good to be really excited about something.  And when things didn't go right, that was exciting too.
• Pride.  I'm pretty proud of myself for figuring out a solution to my problem.
• Knowledge.  I learned that I'm not quite ready to drive on my own.  I learned a good way to really screw up a car transfer, and I doubt I'll make that same mistake again.
• Confidence.  It seems counter-intuitive, but I tried something, it went very wrong, and I survived.  Maybe I should try more stuff.
• Interesting stuff to write about.  Usually I have to force myself to write a blog entry.  I wrote this one at 5:30 AM when I really should be sleeping.

What I did not get out of the experience is the CT scan that I wanted from the hospital.  Anybody want to take me on Friday?  Update: I have located a ride to the hospital on Friday.  Thanks, Brittany!

More Surgery

It is once again time to throw some text at my blog and see what sticks.  Here we go.

I went to see Dr. Dahners last week.  I got a new CT scan of my hips, and he thinks he can see some bone in my right hip that it should help to remove.  Therefore, we have scheduled more surgery for August 26th.  My mom will once again be visiting to help me in the first week of recovery.  I hope it helps with my range of motion, but I really hope it helps with the pain.  My right hip hurts a lot lately.  I'm encouraged that the area he suggested cutting on is close to where most of the pain is, so I'll keep my fingers crossed.

I've been seeing an Occupational Therapist on a weekly basis for my thumb/wrist.  I think it's a little better, but still a concern.  I'm also dealing with pain in my back where they put the metal rods near my spine.  Since I've been moving my back around more and arching my back when sleeping on my front, I can feel the rods poking me more.  It does not feel good.  Just another thing to try to figure out.

My van is back in operation.  It was down for several weeks, and it's fortunate that it died at a time when I had enough flexibility to get into a car.  It's also fortunate that Cullen had a car I could use in the meantime.  We have started calling that car The Raspberry, and I'm currently working on buying it from Cullen.  Oh, and look what I did with it today.

I just did a few laps around the parking lot, and I still need to figure some things out to make it safe in traffic.  I also need a lot of practice with car transfers and getting the chair in and out of the car, but overall, things went really well.  I hope to own this car by the end of the week and be menacing the highways of North Carolina within the next month.  Maybe sooner.

You Get What You Get

I guess it's time to update my blog so here goes.

Overall I'm doing pretty well.  I think my flexibility has pretty much stabilized.  It's okay I guess, but not where I'd really like it to be.  I have an appointment with Dr. Dahners this week, and I rather expect it to result in more surgery to free up my right hip a little more.  I really don't like the idea of more surgery, but if there's something in there he can remove that will make me more flexible, I think it's important we get it out.

In the last couple weeks, I have been experimenting with sleeping on my stomach.  It's a real pain to get rolled over and comfortable, but it really helps to rest my butt and lets me sit up in the wheelchair comfortably for longer during the day.  Pain in my butt from sitting up continues to be a substantial problem for me, but this definitely helps.  I do worry about my arms falling asleep while sleeping on my stomach.  That is something that has happened to me in the past (pre-injury) where I would wake up with no feeling in either arm.  In the past, I could use my legs to roll around and restore circulation, but if it happened now, I'm pretty sure I'd be stuck there until someone eventually broke into my apartment and found me?  I'm going to try to avoid finding out.

Lately a couple things have happened to me that were pretty disappointing.  My van died several weeks ago (2 or 3), and is still in the shop.  My mechanic has had a hard time finding the problem.  He thinks it is an electrical short somewhere, and those can be murder to track down.  So for several weeks I have been denied the use of my van.  Fortunately, I have had the use of my friend Cullen's old '97 Camry.  I have enough flexibility now to transfer into the passenger seat but my transfers are not elegant or confident so every trip takes a lot of time loading and unloading.

Further complicating my transportation situation, Gus has been busy with family obligations for the last 2 weeks, and will be most of the next week at least.  I've been extremely lucky to have his nearly constant assistance for the last year, but I've come to rely on him heavily.  In his absence, it has been a lot more stressful trying to get to appointments and the grocery store, however when dealing with disappointment I remember some advice I got from Evelyn.

Feel free to use that.  I think it's brilliant. 

Fortunately, my friend Tobi has been taking up a lot of the slack while Gus is gone.  She has taken me to several appointments already and is signed up for 2 more this week.  I'm very grateful to her and her family for making that happen.

I've been seeing a therapist to help me with the tendonitis in my thumb and wrist.  So far it doesn't seem to be helping, and I think it's actually getting worse.  That's just another fun thing I get to deal with.  It's still a serious problem for me, and I don't know what's going to happen with that, but as Evelyn says, "You get what you get and you don't throw a fit."

Anyway, in more positive news, I have had some fun the last couple weeks.  I got to have some meals with some people, and yesterday, I went to see a movie with Cullen and Mike and Sue.  It was an older theater, and the wheelchair seating was in the very front and would have been very uncomfortable.  We decided it would be better to sit up in the seats so Cullen and Mike relocated me.

Flattering

It's good to have friends.

My Art

When I first moved into my apartment, my sister bought me some supplies and an instructional video so I could learn how to make balloon art.  She thought it would be something fun I could do to entertain kids.  I thought it was a nice idea, but that I'd probably never do it.

Then this week, I got bored.

My Art

So now I know how to make your basic animals.  Dogs of several types, giraffes, swords in 2 varieties, love birds kissing inside a heart, and a teddy bear holding a tulip.  I'm particularly proud of the kissing birds inside the heart.

These are some other things that I think I can make, but I haven't really practiced.  A pig, a T-Rex, a bunny, a couple types of hats.  I can also make a big flower and a tiny mouse.

I enjoy making the sculptures more than I thought I would, and kids seem to like them.  Evelyn asks for one pretty much every day now.

It wasn't really that hard to learn.  There's really only 3 or 4 basic structures.  There are more complicated sculptures than the ones I know, but even those are really just elaborate combinations the few basic steps.  The hardest thing about it is figuring out how much of the balloon to leave uninflated.  Every time you do a twist, it pushes the air down, so the more twists you want to put in a balloon, the less air you can put in it.  If you put too much, it will pop, and not enough will leave a tail at the end.  I've discovered that some small children really don't like it when you pop a balloon loudly.

So that's what I've been doing with my time this week.  I guess now I'm available for parties.

Exciting News!

If you know me well, then you know how exciting the following news is to me.  There is a new building going up right across Davis Drive from my apartment with the following sign out front.

Yo Quiero Taco Bell

So excited.

Look What I Did

Today I figured out how to do something I haven't been able to do for a year.

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.

April 21

It's hard to believe, but it has been exactly one year since my injury, so I want to take a look back at what I've learned, and review what I'm looking forward to in the year to come.  I want to write a structured review of everything I've been through, and where I am, and what I'm expecting from the future.  That's what I WANT to do.

Unfortunately, when I try to write that post, that's not what comes out.  I've started to write this post five times, but everything I write sounds meaningless to me.  I don't want to read it myself, and I don't want you to read it.  So instead of the structured, polished overview I wanted to write, I'm going to write what my heart tells me I need to write.

After a year, I am still blown away by the fact that I have survived almost entirely on the support of my friends.  I know I've talked about it before, but my heart tells me I need to repeat it.  When I left the hospital in June of last year, I was terrified I wouldn't be able to survive on my own.  I have never wanted to rely on anyone for anything, and I have never had to.  Now I have to rely on someone for almost everything, and I did not think there was anyone in my life that would be able to give me the amount of help I needed.

All of my friends have done so much to help me through this, and I can't say enough about that, but a lot of the people who have done the done the most, and who have visited me the most consistently are people I would never have suspected a year ago.

David Eads was a guy from work.  We used to discuss automotive repairs and occasionally woodworking.  I think I visited his house once, and I think he came to my house once to help change a wheel bearing on my truck.  For most of the last year, he has brought his wife, Kristen, and small daughter, Lydia, to my apartment every three weeks along with a delicious home-cooked meal.  The Eads' live over 30 minutes away, and I don't know why they are willing to do it, but I really look forward to their company (and food).

Titus and Brittany Bulzan were my next door neighbors before I got hurt.  They are the best neighbors I've ever had, and I still love that they have always just referred to me as "Neighbor".  We've been friends since they moved in, but I never would have guessed they cared about me as much as they do.  A year ago, I would have guessed they would stop visiting after a few months.  They also live about 30 minutes away, but between dinner visits, taking me to doctor appointments, and giving me haircuts, I've seen more of them than just about anybody since my injury.  One of my biggest regrets about getting hurt is that I had to move so far away from them.  When I lived next door, I didn't see them every day, and now I wish I could.

Jimmy and Tobi Nguyen are old friends and former roommates, but we haven't seen much of each other since I moved to North Raleigh 9 years ago.  They are very busy with two very time-consuming little girls, but they have made it their business to help me any way they can, and to make it clear to me that I can count on them for anything I need.  Sometimes they bring me food after the girls have gone to bed, sometimes they take me up to visit the farmer's market, they've taken me to a couple doctor's appointments, and they have helped me with daily living when my regular helpers are away.  Maybe I shouldn't be surprised about the amount of help they've given me, but I guess I assumed they had better things to do with their time.  I'm incredibly grateful for the time they spend with me though.

Gus and Uyen Carey were barely acquaintances a year ago.  I had only met Uyen a couple times, and Gus was primarily the neighbor of a friend.  An improbably nice guy who let us borrow his truck to go to the racetrack, and with whom I had spent a few days at the track, but who I would not have considered a close friend.  We certainly got along, but all we really knew about each other is that we both liked riding motorcycles on the racetrack.

Now, a year later, I can't imagine my life without the Careys.  Gus and Evelyn still come over here at least 5 days a week, often 6.  They treat me better than most people treat their families.  They have done so much for me in the past year that there's no way for me to express my gratitude.  When I think about what they have done for me, it makes my heart hurt.

The greatest gift they Careys have given me is they have taken my fear away.  When they first started taking care of me, I assumed they couldn't possibly keep doing it for a month, or two months.  Now it's almost a year, and they aren't showing signs of stopping.  They're so nonchalant about it, in fact, that it almost makes it easy to take them for granted.  I caught myself starting to think that way this week, and I actually had to remind myself how preposterously lucky I am to have them.  As many problems as I still have, I still think I may be the luckiest paraplegic on earth.

Looks like I didn't finish writing this in time to publish on the 21st, but I guess that's what I felt like I needed to write about.  I know I didn't mention everybody who's helped me, and I didn't mention everybody who has visited me, but these are the people who I would never have guessed a year ago would become as important to me as they are now.

Life is funny, isn't it?