I am a complainer. I know this about myself, and anyone who has had the misfortune to live with me for any length of time knows it quite well. It's the thing I dislike about myself the most, and it's the biggest reason I'm surprised I have as many friends as I do.
I try hard to avoid complaining because I know it's off-putting, and I can't afford to drive people away these days. Unfortunately, I can't always help myself. It's who I am. In the context of this blog however, it's easier to censor myself.
In this blog, I've been reluctant to share all the things that have gone wrong for me. They're not fun to talk about, and some of them are fairly embarrassing. The fact is, since I left the hospital, every time something has gotten even slightly better, within a day or two, something else has gotten much worse. I like to talk about the things that get better, but I avoid talking about the other stuff because I don't want to complain. In most cases, it wouldn't do any good anyway.
The last week provides a good example. A week ago, my hip was still in a fair amount of pain, but it seemed to be steadily improving. So I was busy starting to feel encouraged by that when the nurse came for a visit and discovered the beginnings of pressure sores on my heels.
The term "pressure sore" seems fairly innocuous, but it describes something that is actually really horrible. There are points on your body, and your heel is one, where the bone puts a lot of pressure on the inside of your skin. If you don't shift position often enough, like when you're sleeping, the pressure of the bone will squeeze out all the blood from the muscle and skin, and then the tissue will start to deteriorate from the inside. If left alone, the bone will eventually auger it's way all the way through the skin, forming a horrible open wound with exposed bone. The bone also ensures that it is very difficult to heal these wounds because any time it touches anything, the bone will tear it larger.
On one of my visits to UNC rehab after I left, I met a guy who had got a pressure sore on his butt, and had to spend 2 years in bed on his stomach to let it heal. Pressure sores are no joke, and they can form surprisingly quickly.
Anyway, I had a stage 1 pressure sore on my left heel and a stage 2 pressure sore on my right heel. Those are not to the point of skin breakage (they go to stage 4), but the stage 2 in particular is definitely serious.
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Stage 1 pressure sore |
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Stage 2 pressure sore |
Horrible? You betcha. The stage 2 one was actually a huge blood blister caused by the wound leaking blood into the outer layer of my skin. And I can't feel or see any of this, so it's a fairly dangerous situation. So the nurse called the doctor, and he insisted that I had to stop wearing the compression socks I had been wearing because they put pressure on the wounds, and I also had to start wearing prefo boots when I sleep.
Prefo boots are designed so that your heel doesn't contact anything when you wear them, so they're ideal for helping to heal this sort of wound, but they're big and ugly and heavy and impractical. I'm not required to wear them when I'm out of bed, but I can't reach my feet so I can't take them off or put them on myself. Therefore, I have to wear them all the time.
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Prefo boots with custom duct tape toe cups |
So I have to wear the boots all the time with no socks. The boots actually expose my ankles to the air, and my toes as well. Gus helped me fabricate some duct tape toe cups to cover my toes, but they are still not very practical to use outdoors, especially in the cold.
I'll probably have to wear the boots for at least 3 weeks. They make it much more difficult to get into or out of bed, and they make it impossible to put on or remove pants by myself. That complicates the bowel program. And without the compression socks, my feet have swollen up to about double their normal size. I'd show you, but I can't take the boots off.
This isn't even the worst thing that has happened to me in the last few months, but I try not to talk about this sort of thing on the blog because I don't want to complain. I think it's a legitimate thing to complain about, but I just don't like being a complainer. I've just been feeling like the blog doesn't paint an accurate picture of how I'm really doing, and that was never my intent.
The fact of the matter is though, in spite of the complications caused by the pressure sores, the boots haven't been as bad as they might have been. Gus made me a pair of basketball tearaway pants by cutting up some of my larger pants and riveting snaps up the sides. It's hard, but I can get them on and off myself if I really need to. And I've been able to get by without taking my pants all the way off except occasionally. And Gus has provided the extra help I've needed to make it through the last week. I've survived this way for a week now, and I've only had to call him over for one boot-related emergency in that time.
That's another thing that makes me not want to complain. As long as I've got Gus helping me out, it feels like I can get through any of this.
I've wanted to write this post for a week now, but I've been lazy. And now that I've finally gotten around to writing about how bad things are, some of the other things that have been bothering me are actually starting to show signs of improvement. For instance, my hip pain continues to improve. It's a little early to declare any sort of victory, and I'm still waiting to see what else gets worse, but right now I'm feeling more optimistic than I have in months. Hopefully I can write about that soon.