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.