Oh, Hello

Oh, hi.  I didn't see you there.

Come on in.  It's been a while, hasn't it?  Too long.  How've you been?  How are the kids?  Good, good.

How've I been?  Oh, you know, same old, same old.  Takin' it a day at a time.  Blah blah blah.

You don't care about details, do you?  It's all boring.  Oh, you do?  Well, if you insist, here are the highlights from the last few months.


In September, I reacquainted myself with my old friend, candy corn.   Turns out I really like candy corn.  Like really a lot.  Too much, if I'm honest.  Fun fact: Jelly Belly candy corn isn't nearly as good as Brachs.

Dangerously affordable

I went to the State Fair with Gus's family and my sister and her kids.  We ate a bunch of food, and the kids got to ride some rides.  The weather was great, and I felt pretty good, so it was a really good time.

Georgia and Evelyn were incredibly cute together

 The Martinsville guys stopped by for a visit.  We had a lot of fun, and made a lot of noise, and probably irritated my neighbors.  I had been thinking that paralysis is like a full-time job except that you don't get to go home, and you never get a vacation.  This is as close to a vacation as I ever get.

I went over to Cullen and Caitlin's house for dinner and to carve pumpkins prior to Halloween. 

Mine is the sad, mentally challenged one on the end

I took a trip with Gus out to Greensboro to buy an interesting new piece of equipment.  I wanted it because it's supposed to be good for your overall health.  It can also provide you with some useful capabilities though there are some limitations.

The other big news is that I have been experimenting with driving the van with mixed results.  The actual driving isn't difficult since I installed a chest strap so I can't fall out of the seat.  I've taken a couple solo trips without a chaperone, and they went about as well as could reasonably be expected except that I've discovered that sitting in the driver seat messes up my back really badly.  On one 5 minute trip, it triggered my sciatica to the point that I was essentially stuck in bed for the next 2 weeks, and it took a month to get the pain back to the level it had been.

I'm continuing to play with it, but I'm reluctant to try anything longer than a 5 minute drive in case my back gives out.  I can feel the pain starting as soon as I get in the seat, but it usually takes a few minutes to become a serious problem.  I've done a couple trips with my neighbor to the grocery store.  It's a good arrangement because she can't drive due to epilepsy, and I can't reach the top shelf at the store or carry a lot of groceries back to my apartment.  I've been hoping for a long time that we could work together on this, and our two trips so far have worked out great.

So I guess I've been making very slow progress.  Pain is still the main thing holding me back, and it's still a huge problem, but at least I'm learning what to expect from it, and I've been able to do some fun things in spite of it.

Core

Here's something that happened recently.  I didn't notice it until late last week.  It's not terribly useful at the moment, but it's definitely interesting.

Voodoo

The last time I posted to this blog, I was in a LOT of pain.  My lower back hurt, and was spasming uncontrollably.  The pain in my posterior was the worst it had ever been, and it felt like someone was electrocuting my leg continually.  It was the most pain I have ever experienced, and I was not particularly happy.  I had just started seeing a new physical therapist, Jon Weinberg at Team Care, for my back pain, and I was cautiously pessimistic about whether he could do anything about the butt pain that has kept me in bed for the last year.

Skip ahead a few weeks, and I'm feeling a LOT better.

I think physical therapy is voodoo.  This is the second time that a PT has told me that a terrible pain was actually coming from a nerve problem in a completely different location.

At some point in the first year of my injury, after I began sleeping on my stomach, I began waking up with extreme pain in my elbows.  It was bad enough that I could barely use my arms to sit up in the morning.  I tried everything I could think of to take pressure off my elbows while I was sleeping, but nothing seemed to work.  When I finally told a PT about it, she said, "Oh yeah, there's a nerve in your armpit that is causing that.  Find a sleeping position that takes strain off your shoulder, and it should clear right up."  She was dead right.  My shoulder and armpit weren't bothering me at all, but that was the source of the problem, and once I took pressure off it, my elbow pain went away as if by magic.

For a year, my butt has been getting worse and worse, and nothing I did seemed to make it better.  Jon comes along and tells me I need to stretch my back to make my butt better.  I told him I didn't think that would help, but that I'd try anything.  He's got me doing these twists to try to straighten out the disks between my vertebrae.  The theory is that I've got multiple bulging disks bulging in different directions, and it will require a variety of weird stretches to improve the problem.  It has already helped tremendously.

The problem I have is that with my engineering background, I tend to think in terms of problems and solutions, and I like to solve my own problems.  I've been very successful when it comes to improvising mechanical solutions to problems, but when it comes to problems with my body, I'm missing key knowledge about how things work.  If a problem isn't caused by the thing that hurts, you can work on that thing forever without making any progress.  It's that detailed knowledge of how things work that makes PTs so effective.  I guess I can't solve ALL of my problems myself.

I'm certainly not pain free, and I have to take frequent breaks to get in bed and do my stretches or else the pain comes back, but the progress I've made in the last couple weeks is nothing short of amazing.  I'm feeling better than I have in over a year, and I'm  able to spend a lot more time up in my chair.  I'm already thinking in terms of doing more stuff, although I don't want to get ahead of myself.  I need to get the pain control a little more consistent than it is right now before I try to go too far from home.  It still fluctuates quite a bit from day to day.

It doesn't help that I need assistance to really do this stretch properly.  Gus helped me rig a strap around my bed to help me do it myself as best I can, but I don't think it's as effective as getting someone to help me do it.  Ideally, I'm supposed to do it every two hours, so if you want to stop by and give me a hand, here's the procedure.

I don't know where we go from here, but the fact that there has been any improvement is both unexpected, and very exciting.

Food Fairy

Two posts in two days?!?!?  I KNOW!!!

Brian and Kelly, dropped off more food this morning.  They have given me a ton of food the last couple weeks, and  I can't even express how much I have appreciated having it when the pain has been so bad.  It has been so great not to have to prepare anything when I get up, and to be able to get back in bed as quickly as possible.  It doesn't hurt that it's all amazing.

2 weeks ago: ravioli, chicken, roasted veggies, meatballs with glazed pineapples and onions

Today: Italian pasta salad, chicken and crispy onion sliders with chipotle honey, ginger sesame chicken salad, honey mustard pretzel chicken, broccoli pasta salad, jalapeno corn slaw

Between this and a couple Taco Bell runs, I have been well fed for the last couple weeks, and will have a hard time getting through this before my mom arrives in a week.

Dinner tonight including cauliflower, Brussels sprouts, gnocchi, pistachios, probably some other stuff.  Delicious!

I can't believe I have friends who do this for me.  I'm still the luckiest cripple I know.

Physical Therapy

It's not one of the things I promised to write about, but I thought I should throw a quick update.  I went to see a physical therapist on Thursday, and he was able to help with the back pain a little.  He also thinks he might be able to help with the butt pain.  That was an unexpected development.  I'm not convinced he's right, but it would be irresponsible not to pursue this line of inquiry until I'm 100% sure he's wrong.  I really hope he's right.  You could say I'm cautiously pessimistic.  He thinks it's related to sciatica and caused by the same lower back problem I went to see him about.  We'll see I guess.

Tobi has agreed to take me to 2 appointments this week, and my mom will be in town next week and should be able to take me to 2 more.  I probably need to go to at least 2 more appointments the following week which I know Tobi can't do, but I guess I'll cross that bridge when I come to it.

Jimmy took me last week to get an MRI on my spine, and Tobi is also taking me next week back to talk to the doctor about the MRI.  Either this week or next, I'm going in to get my wheelchair adjusted to help with my posture.  I have a couple options for rides for that, and it just depends on when they can schedule me.

So after many months of nothing happening, there's lots of stuff going on.  Hopefully some of it helps.

If anybody wants to sign up to take me to a mid-day appointment the week of August 18th, let me know.  If they can actually make significant improvements in the next couple weeks, I might try to drive myself, but we'll just have to see how I feel.

Still Broken

July is rapidly coming to a close, and it's time for me to confirm, for the five remaining readers of this blog, that I'm still alive and kicking (so to speak).  I was sitting here thinking about all the things I have to write about from the last month and feeling a bit overwhelmed, so instead of doing one long comprehensive post about everything I've done (besides sleep), I'm going to try to ration it out in a series of shorter posts.  The way blogs are supposed to be.  The question is whether the pain will allow me to do that.  We'll see.

The last couple weeks, I've been spending a little more time up in my chair.  Not much, but a little.  I've been trying to tell myself that my butt has been feeling a little bit better.  That may or may not actually be true.  It's possible I'm just telling myself that to have an excuse to get out of bed.  I can only take so much lying down.

So while I was sitting up a couple weeks ago, I started to notice a stabbing pain in my lower back, well below my line of injury.  It felt like somebody was stabbing me directly in the spine with an ice pick, and it forced me back into bed.  The pain went away after a couple days, but it came back a week later.  Again, it lasted about 2 days, but this time it returned sooner.  Now it's almost every day.

My butt has been bothering me a lot less since it started, but I think that's just because whatever hurts the most is the only thing I can feel at any given time, and the back problem hurts a LOT.  It was suggested that it might be a herniated disk, and that sounds plausible to me.

Tobi took me to the doctor, and Gus took me for x-rays.  This week, I'm going for some PT, and to get an MRI.  Finding rides to doctor appointments is still one of my most difficult problems, but I'm very fortunate that Tobi is out of school the the next few weeks, and can drive me around to all of these.  Hopefully one of them helps.

I'm still trying to spend time out of bed every day, but it's hard.  I've been icing my back every day, and taking pain meds.  They do help, once again, lying in bed is the only real relief I get, so I need to find a more permanent solution to this problem.  A lot of times, like right now, the pain is relatively little as long as I don't move, but all the spine movement associated with pushing the wheelchair around is very problematic.  It's challenging just to move around my apartment; going outside to check the mail seems unrealistic.

So that's what's wrong with me THIS month, and is probably the most important update, but it's not the only thing going on in my life.  Now that we've gotten the negative stuff out of the way, hopefully I'll be able to write about the better stuff in the near future.  Stay tuned.

May and June

I guess its been a while since I wrote anything about myself in this blog. I suppose it's time. The last two months have been quite a contrast.

May

Driving the Van

I felt pretty good for most of May, and I got to do a lot of fun stuff. I finally got to experiment with driving my van. 

Gus removed the passenger seat, and we rigged it so I could transfer to the driver's seat, and I took an exploratory trip around the parking lot. 

And I did some practice transfers . 

Later, I went out on the road and drove to Gus's house for dinner. Gus accompanied me as a chaperone, but I did all the transferring and driving unassisted.

We uncovered some possible challenges during this excursion . Notably, if I make a sharp turn to the left, I tend to fall out of the seat to the right. Overall, however, the experiment was a great success , and it gave me a lot of confidence that I will end up menacing public roads eventually.

Willie Nelson

Back in March, I learned that Willie Nelson was coming to play a show in Cary with Alison Krauss, and I thought it would be a good excursion if I could find some friends to go with me. I invited Cullen and Caitlin, and we bought tickets for the May 5th show. The show ended up being postponed until May 19th, and Gus and Uyen were given tickets, so they came too. 

Fun times

Who invited him?

The weather was perfect, and I felt really good.  We all had a great time. It was nice to get out of my apartment for an evening, and the show was fun. I always enjoy Alison Krauss, but the reason I wanted to see the show was to see Willie Nelson before he dies. I always wanted to see Johnny Cash, but I never got to. 

Willie is the blur to the left

It turned out Willie Nelson doesn't really sing anymore so much as stand in front of a band and recite lyrics, but the man is a legend and I guess he can do what he wants.

Memorial Day Cookout
 In the month of May, I made friends with a couple here in my apartment building. On Memorial Day weekend, they invited me to grill some fish with them on the communal grill down by the playground. Philip is from Florida, and knows something about seafood. He picked up some red snapper at Whole Foods, and prepared it with some marinade. He grilled it whole with the head and skin on.  I had never had fish prepared like that, but it was some of the best fish I have ever had. 

The next day, we grilled hamburgers. They were made with special corn fed ground beef from whole foods, and they were the most flavorful hamburgers I have ever had . 
 

Phillip and me down by the grill

It was really nice to have some friends in the building here, but unfortunately Philip and Wendy purchased a house and moved away in early June. It might actually be for the best from a weight gain standpoint.

 Amy and Joe's Party
My friends Amy and Joe threw a big party Memorial Day weekend, and I decided to go. Gus and Uyen were nice enough to transport me, and the party was in the driveway so I didn't have to worry about getting inside their house. They did a pig pickin', and there was tons and tons of food. 

The weather was great, and a lot of my friends were there. It was another had a really great time.

 June

To Bed

In May, I had a lot of fun, and I spent a lot of time out doing stuff. Too much time I think.

The pain in my butt when I sit on it had been worsening all through May, and by early June it was unbearable. I could not sit up for any length of time, and I couldn't imagine sitting on a car seat when the fancy air cushion on my wheelchair was so painful. I decided I had to stay in bed until it got better. So that's been my June.

It's really frustrating because I felt like I made actual progress in May, and this feels like a big step backwards.  I feel like I'm just laying here watching my life pass by, powerless to do anything about it.  Fortunately I like sleeping, so its not all bad.

Not sitting up means it's almost impossible to type which makes it very difficult to post to the blog which is the main reason I haven't posted anything in so long. Right now I'm lying on my stomach, using Google's (awful) voice recognition software to painstakingly piece this post together.  I'm fixing all the mistakes with one finger. It's excruciating.  I've been working 4 hours and counting.

The good news is my butt is definitely improving, but very very slowly. I have no idea how much longer I'm going to have to stay off it, but I'm going to try to let it heal as much as possible. I don't want to have to do this again. 

I think the cause of the problem is twofold. I think I injured my butt sitting on it too much, but I also think I got a little more feeling back in my lower extremities. When I say that to people they always ask if that isn't a good thing, but I think it's a very bad thing. All paraplegics have pressure issues with their butts, but they can't feel it so it's easy to live with. If they could feel it, they would be miserable all the time.

I've been wondering if there are any surgeries to disconnect your spine since I think I would be a lot happier if mine had been broken properly, but I doubt anyone will do that.

So that's what's going on with me. I'll write again when I feel better and can sit at a keyboard. Now I'm going back to sleep.