This skill will be a HUGE help to me. Previously I had to get in bed to put on socks or shoes, or to take them off. It hurts my right hip, but I think it's a fair trade. I suspect I'll get more flexible and better at it as I continue to do it, but I'm already pretty pleased with myself.
Sunday, March 16, 2014
One, Two, Buckle My Shoe
I know I said I wouldn't be writing again for a while, but something happened that I wanted to share. I just did this for the first time yesterday, and here, I have captured for posterity the 4th time I have ever done it.
This skill will be a HUGE help to me. Previously I had to get in bed to put on socks or shoes, or to take them off. It hurts my right hip, but I think it's a fair trade. I suspect I'll get more flexible and better at it as I continue to do it, but I'm already pretty pleased with myself.
This skill will be a HUGE help to me. Previously I had to get in bed to put on socks or shoes, or to take them off. It hurts my right hip, but I think it's a fair trade. I suspect I'll get more flexible and better at it as I continue to do it, but I'm already pretty pleased with myself.
Sunday, March 9, 2014
Monthly Update
It looks like monthly is about how often I can manage to write these posts so for the few of you who will read it, here's the one for March.
Things continue to improve around here. I've been taking all sorts of showers. Showers in the morning, showers in the evening, showers at suppertime! I haven't been this clean in forever.
I'm still dealing with this pain in the butt, and pain in my hip, and something new. For the last couple weeks, the ring-toe on my left foot (the little piggy that had no roast beef), has been doing something weird and uncomfortable. For a week, it felt vividly like it was broken and twisted straight back at a horrible angle. It didn't look abnormal. I don't think I bonked it on anything. It just felt like that for a week. Then my pinky toe felt like somebody was squeezing it really hard in a pair of pliers for a couple days, and now it's kinda gone to the middle toe where it has started to twinge. It feels like it's spasming violently. Like it's having a bad cramp. Again, nothing looks weird. If I touch the toe, it actually seems to hurt worse, so I've been avoiding that. I think there is a nerve somewhere that's trying to reconnect, and currently has a loose connection. It's really annoying, and I hope it will stop soon. I said from day one that I have no interest in getting any feeling back because all I'm likely to feel is pain. I hate it when I'm right.
Apart from that, lots of good things have been happening. The food fairy came this week.
I also met one of my neighbors on my hall this week. I invited him over for beers last night, and he said he and his wife were going to invite me for dinner sometime. We'll see how that goes. I'm optimistic.
The other thing that's happening is that I've started doing something that has interested me for many years, but I just haven't had the ability to pursue it until now. I'm not going to talk about it too much right now, but it has been holding my interest, and adding some much needed excitement to my life. It gives me something to look forward to every morning.
Last month I worked with a physical therapist to practice my car transfers, and they went pretty well. I got pretty confident getting into and out of the car, and my procedure for getting the wheelchair in and out improved quite a bit too. By the end, I was able to get in the car in under 5 minutes, and the same for getting out. The biggest problem I still have with that is that my pants fall down every time I transfer in or out. Since I can't pull my pants up without getting in bed, that's a big problem. I might be able to fix that problem with some different pants, or possibly some suspenders. I'm going to need somebody to take me shopping.
Also of note, my friend Emily is coming to visit in early April for almost a week. I'm hoping I will feel good enough to go out and do some stuff when she's here, so that could be a bunch of fun. Maybe she'll take me shopping.
Martinsville is also coming up at the end of March, so I'm hoping to get another visit from the guys. That's always fun.
I have plans to do a post where I talk about some of the modifications I've made to my apartment that make my life easier, but I'm not quite ready for that yet. Soon I think. Unless I get that going in the next couple weeks, I'll probably talk to you again in April. If you want an update sooner than that, come buy me dinner, and I'll tell you whatever you want to know. :)
Things continue to improve around here. I've been taking all sorts of showers. Showers in the morning, showers in the evening, showers at suppertime! I haven't been this clean in forever.
I'm still dealing with this pain in the butt, and pain in my hip, and something new. For the last couple weeks, the ring-toe on my left foot (the little piggy that had no roast beef), has been doing something weird and uncomfortable. For a week, it felt vividly like it was broken and twisted straight back at a horrible angle. It didn't look abnormal. I don't think I bonked it on anything. It just felt like that for a week. Then my pinky toe felt like somebody was squeezing it really hard in a pair of pliers for a couple days, and now it's kinda gone to the middle toe where it has started to twinge. It feels like it's spasming violently. Like it's having a bad cramp. Again, nothing looks weird. If I touch the toe, it actually seems to hurt worse, so I've been avoiding that. I think there is a nerve somewhere that's trying to reconnect, and currently has a loose connection. It's really annoying, and I hope it will stop soon. I said from day one that I have no interest in getting any feeling back because all I'm likely to feel is pain. I hate it when I'm right.
Apart from that, lots of good things have been happening. The food fairy came this week.
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| Chicken lemon basil pasta, cheesy smoked sausage and pasta, dorito chicken casserole, and zucchini tomato bake |
The other thing that's happening is that I've started doing something that has interested me for many years, but I just haven't had the ability to pursue it until now. I'm not going to talk about it too much right now, but it has been holding my interest, and adding some much needed excitement to my life. It gives me something to look forward to every morning.
Last month I worked with a physical therapist to practice my car transfers, and they went pretty well. I got pretty confident getting into and out of the car, and my procedure for getting the wheelchair in and out improved quite a bit too. By the end, I was able to get in the car in under 5 minutes, and the same for getting out. The biggest problem I still have with that is that my pants fall down every time I transfer in or out. Since I can't pull my pants up without getting in bed, that's a big problem. I might be able to fix that problem with some different pants, or possibly some suspenders. I'm going to need somebody to take me shopping.
Also of note, my friend Emily is coming to visit in early April for almost a week. I'm hoping I will feel good enough to go out and do some stuff when she's here, so that could be a bunch of fun. Maybe she'll take me shopping.
Martinsville is also coming up at the end of March, so I'm hoping to get another visit from the guys. That's always fun.
I have plans to do a post where I talk about some of the modifications I've made to my apartment that make my life easier, but I'm not quite ready for that yet. Soon I think. Unless I get that going in the next couple weeks, I'll probably talk to you again in April. If you want an update sooner than that, come buy me dinner, and I'll tell you whatever you want to know. :)
Saturday, February 8, 2014
About Time
Has it already been another month? I guess it has. It doesn't seem like that long.
The last month has been interesting. My strategy of spending all my time in bed made a noticeable improvement in my butt pain. In the last couple weeks, I actually had a few days that were almost pain free. As a result, I spent too much time sitting up in my chair, and the pain has started to return. It's not quite as bad as it was, but at least it's proof that I'm doing the right thing. It's also an indication that I'm not just going to be able to heal up and be fine. I'm probably going to have to deal with this problem for the rest of my life. So it's a bit of a mixed bag, but overall, really good.
I did something really exciting just in the last week or so. I have taken 2 (two) separate showers with no assistance or supervision whatsoever. I've finally got the flexibility to reach my feet and take my boots off and put them back on. I'm also finally able to reach my feet in the shower and wash them somewhat. I can't remember the last time I was able to do that, so that's really exciting.
I will say that using my flexibility is very painful. When I move my right hip, it hurts an awful lot. I just finished one of those showers, and I'm lying in bed with my hip just throbbing. I think this is also something that I'm probably going to have to live with. I hope the pain doesn't mean the HO might be returning. So far it doesn't seem like the flexibility is decreasing by using it, but it's something I'll have to keep an eye on. I really don't want to do any more surgery.
For the last month, I've also had a physical therapist coming twice a week to help me work on my car transfers. It's the first step to learning to drive again. We worked on getting into and out of the car, and also breaking down the wheelchair and getting it into and out of the car. So far my best time was under 5 minutes to get in and under 5 minutes to get out. I don't feel entirely confident enough to do it in public yet without supervision, but I'm getting there. One problem I have is that my pants fall down pretty much any time I transfer in or out, and I can't pull them up without getting into a bed. That's kindof a major problem, and I don't know how to solve it. It may require wearing different pants, but I only own one type of pants that fits me.
With all the time I've spent in bed, I've gotten really weak. When I first moved here, I used to go for walks where I'd push myself around the 3 little blocks here in my neighborhood, and I'd barely be tired. The last few weeks, I've been trying to push myself around just one block, and I'm completely worn out. I'd like to do it more often, but the weather hasn't been very cooperative lately. I need it to be over 45 degrees and dry before I'm going to try it. I'm definitely not going to do it in the snow, which I believe they are calling for more of this week.
In conclusion, it's been a pretty good month. I've got a lot more challenges ahead, but overall, things are looking up.
The last month has been interesting. My strategy of spending all my time in bed made a noticeable improvement in my butt pain. In the last couple weeks, I actually had a few days that were almost pain free. As a result, I spent too much time sitting up in my chair, and the pain has started to return. It's not quite as bad as it was, but at least it's proof that I'm doing the right thing. It's also an indication that I'm not just going to be able to heal up and be fine. I'm probably going to have to deal with this problem for the rest of my life. So it's a bit of a mixed bag, but overall, really good.
I did something really exciting just in the last week or so. I have taken 2 (two) separate showers with no assistance or supervision whatsoever. I've finally got the flexibility to reach my feet and take my boots off and put them back on. I'm also finally able to reach my feet in the shower and wash them somewhat. I can't remember the last time I was able to do that, so that's really exciting.
I will say that using my flexibility is very painful. When I move my right hip, it hurts an awful lot. I just finished one of those showers, and I'm lying in bed with my hip just throbbing. I think this is also something that I'm probably going to have to live with. I hope the pain doesn't mean the HO might be returning. So far it doesn't seem like the flexibility is decreasing by using it, but it's something I'll have to keep an eye on. I really don't want to do any more surgery.
For the last month, I've also had a physical therapist coming twice a week to help me work on my car transfers. It's the first step to learning to drive again. We worked on getting into and out of the car, and also breaking down the wheelchair and getting it into and out of the car. So far my best time was under 5 minutes to get in and under 5 minutes to get out. I don't feel entirely confident enough to do it in public yet without supervision, but I'm getting there. One problem I have is that my pants fall down pretty much any time I transfer in or out, and I can't pull them up without getting into a bed. That's kindof a major problem, and I don't know how to solve it. It may require wearing different pants, but I only own one type of pants that fits me.
With all the time I've spent in bed, I've gotten really weak. When I first moved here, I used to go for walks where I'd push myself around the 3 little blocks here in my neighborhood, and I'd barely be tired. The last few weeks, I've been trying to push myself around just one block, and I'm completely worn out. I'd like to do it more often, but the weather hasn't been very cooperative lately. I need it to be over 45 degrees and dry before I'm going to try it. I'm definitely not going to do it in the snow, which I believe they are calling for more of this week.
In conclusion, it's been a pretty good month. I've got a lot more challenges ahead, but overall, things are looking up.
Thursday, January 2, 2014
Holidays
A couple days after my last post, I started to see evidence of pressure sores on my right buttock. That was extremely discouraging. I had been spending a lot of time lying on my right side because in that position, I could still use the computer and watch videos somewhat easily. I had to switch to lying exclusively on my stomach to keep pressure entirely off my butt, and I had to continue spending almost all my time in bed.
The good news is it seems like that has actually been helping. I did as much of it as I could, and it seemed like the pain in my rear end slowly improved. The marks on my butt went away, and by the time Christmas arrived, I could get out of bed with almost no pain for half an hour or more. It had been months since it felt that good.
For Christmas, just like last year, my parents and my brother came and stayed for a few days. It was a really nice visit, and I enjoyed it a lot. I especially enjoyed spending time with my brother. We got to watch Troll 2 together, which is a classically terrible movie. If you like bad movies, do yourself a favor and check it out. Interesting fact about Troll 2 - there are no trolls in the movie; only goblins.
For Christmas, my brother and I got my sister a membership to a fruit of the month club, and since the fruit wouldn't be available on Christmas, Jonathan wrote a poem, and we recorded ourselves performing it and sent that to Jessica on Christmas day. That was pretty fun.
My mom brought a lot of awesome food, and that was great. On Christmas eve, Gus's family came over, and we all had Maryland crab cakes from Timbuktu. They are so good. They are what Maryland crab cakes are supposed to be: full of crab meat. On Christmas day, we had a beef tenderloin roast with horseradish cream sauce. That was also fantastic.
As I expected, when my family was here, I spent too much time sitting up, and my butt paid the price. By the time they left, I think my pain was almost back to where it had been before all the time I spent in bed. It's hard to tell. I still had better days and worse days, but it seems like maybe the bad days weren't quite as bad.
Anyway, I stayed in bed as much as I could until New Year's Eve yesterday. My college friends, Bobby and Justin, came to spend New Year's here. We used to live together in college, and it doesn't matter how long we're apart, when we get together, it's like we never left. I don't know if you have any friends like that, but it's really special. I think the last time I saw Bobby was a year and a half ago when I was in rehab.
Anyway, Bobby used to do all of our cooking in college, and he brought me so much food it barely fit in my freezer. Justin brought his old NES with Double Dragon 2 that we used to play endlessly in college, and we went out to dinner and played Double Dragon all night until 3AM. I can't think of anything I'd rather do than exactly that with those guys. It was really the best New Year's I can imagine.
Justin and Bobby stayed over, and this morning, Bobby made some cajun chicken etoufee. We had it for lunch, and then we packed up another gallon of it in my freezer. I have so much food right now. It's a good problem to have.
My butt hurt a lot yesterday, but I sucked it up because I wanted to hang out with Justin and Bobby while they were here. I expected to be incapacitated today, but it actually didn't feel as bad as I expected, so maybe that's encouraging. I'm still taking it a day at a time, but things might be looking up.
The good news is it seems like that has actually been helping. I did as much of it as I could, and it seemed like the pain in my rear end slowly improved. The marks on my butt went away, and by the time Christmas arrived, I could get out of bed with almost no pain for half an hour or more. It had been months since it felt that good.
For Christmas, just like last year, my parents and my brother came and stayed for a few days. It was a really nice visit, and I enjoyed it a lot. I especially enjoyed spending time with my brother. We got to watch Troll 2 together, which is a classically terrible movie. If you like bad movies, do yourself a favor and check it out. Interesting fact about Troll 2 - there are no trolls in the movie; only goblins.
For Christmas, my brother and I got my sister a membership to a fruit of the month club, and since the fruit wouldn't be available on Christmas, Jonathan wrote a poem, and we recorded ourselves performing it and sent that to Jessica on Christmas day. That was pretty fun.
My mom brought a lot of awesome food, and that was great. On Christmas eve, Gus's family came over, and we all had Maryland crab cakes from Timbuktu. They are so good. They are what Maryland crab cakes are supposed to be: full of crab meat. On Christmas day, we had a beef tenderloin roast with horseradish cream sauce. That was also fantastic.
As I expected, when my family was here, I spent too much time sitting up, and my butt paid the price. By the time they left, I think my pain was almost back to where it had been before all the time I spent in bed. It's hard to tell. I still had better days and worse days, but it seems like maybe the bad days weren't quite as bad.
Anyway, I stayed in bed as much as I could until New Year's Eve yesterday. My college friends, Bobby and Justin, came to spend New Year's here. We used to live together in college, and it doesn't matter how long we're apart, when we get together, it's like we never left. I don't know if you have any friends like that, but it's really special. I think the last time I saw Bobby was a year and a half ago when I was in rehab.
Anyway, Bobby used to do all of our cooking in college, and he brought me so much food it barely fit in my freezer. Justin brought his old NES with Double Dragon 2 that we used to play endlessly in college, and we went out to dinner and played Double Dragon all night until 3AM. I can't think of anything I'd rather do than exactly that with those guys. It was really the best New Year's I can imagine.
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| Justin, me, and Bobby at Firebird Grill |
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| Bobby trying some of my whiskey |
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| Bobby and me playing Double Dragon, the best video game 1988 had to offer |
Justin and Bobby stayed over, and this morning, Bobby made some cajun chicken etoufee. We had it for lunch, and then we packed up another gallon of it in my freezer. I have so much food right now. It's a good problem to have.
 |
| Bobby and Justin eating etoufee |
My butt hurt a lot yesterday, but I sucked it up because I wanted to hang out with Justin and Bobby while they were here. I expected to be incapacitated today, but it actually didn't feel as bad as I expected, so maybe that's encouraging. I'm still taking it a day at a time, but things might be looking up.
Wednesday, December 4, 2013
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.
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.
Wednesday, October 16, 2013
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."
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.
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.
I'm really delighted with how they turned out, and I'm looking forward to a week of delicious breakfasts.
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.
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.
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 |
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 |
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 |
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.Tuesday, October 1, 2013
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.
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.
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.
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.
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.
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.
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