There's a concept that Melissa and I invented between ourselves once we learned that I was never going to be undisabled again. If I couldn't be better, then I would have to settle for better. I know. Come again? Better is pronounced with the reverence you see most often when a kid talks about Santa Claus. Instead of depending on such nuance, we refer to regaining all of my health or close enough as "Big B Better." Little b better is some improvement in the margins that makes a little better to live.
When I posted about soul tearing pain, I had no idea how I would cope with it through the next hour let alone the two weeks until my pain doc appointment. The good news is that the problem unraveled for me. First, there was the ungodly stress. I cannot begin to describe the strain I was under from the end of May road trip to see the New York family until the last week of July or so. All I can do is describe the effects the stress had on me. I've mentioned them before but I am almost certain that I understand them for what they are now. That makes a big difference.
The pain in my teeth has been a reoccurring thing. In several place, it appears that my teeth are partially torn from my jaw. I'll leave how painful that was to your imagination. It had been happening to me when I really needed a vacation since I was disabled. We took one in 2005 and in 2012. Both times, I went in with severe tooth pain and came home without it. No, I'm certain that I did not take better care of them in any meaningful way either time.
I was convinced several times that this was some sort of recurring infection. When my PCP told me that there were no lymph nodes or glands in the swollen areas and nothing to get infected where my jaw hurt, I gained a terror of bone cancer. Each time, she gave me antibiotics and the problem went away. Antibiotics and orders to rest without taking on a lot of stress seemed to do the trick. In fact, those times included neck pain that was so awful I could hardly cope minute to minute with it.
Those are the symptoms in reverse order of how they worked. Something would cause me great stress and I carried the tension in my face. I would clench up from pain and stress in my neck. I would grit my teeth from the pain and from trying to hold the pain in without yelling. My jaw would set in a few different ways from stress, pain and because the neck muscles controlling it were clenched already. The whole thing took on a life of its own. Once the teeth were sore from being gritted, they became sensitive to just about everything. The fastest cure for them is to chew on something very chewy like taffy chewy. Oragel worked but it took too long.
I found no sure cure for the jaw pain. Narcotics aren't really meant to work on muscle pain as I was told by an urgent care doctor once during a previous flareup. Cold worked some of the time but not others. It isn't easy to get something both cold enough to help and soft enough not to hurt. I have a big old soft gel back we keep wrapped in a dish towel in the freezer. It worked best but it always seemed as if the thing was warming up by the time the cold seeped into my skin deeply enough to help.
The neck was toughest to diagnose because it sent out so many false clues. One of the first things I noticed years ago was that it helped my teeth to lie on my side with my cheek on a soft pillow. Unfortunately, the pain seemed very affected by gravity. The pain would sink to that side of my jaw and I thought of terrible infections. The neck pain would follow as well. Recently, I discovered that the neck pain seemed to worsen if slept in my broken recliner because my head would lean too far back or rest forward on my chest. Both of these things are true but they are mostly results. My neck had to be cramped up from the stress in the first place.
Before this sounds like the plot of Catch-22, remember the title of the post. First, the stressed eased off and then went away. It went back to my normal stress levels which I think might stun the average hippo but I'm used to them. I spent more time in bed sleeping until I started to approach normal numbers of hours spent asleep but with my schedule reversed. The phone calls full of threats and tension ceased so I stopped staying half awake just to enjoy them. My sleep became better again. I devised a jerry rigged neck brace for my poor recliner so that I didn't have to stress about falling asleep there. I started using the cold pack on my neck regularly for a while.
It seems that I have pulled ahead in the battle to be rid of the extra pain. Stressful events remain but concluding them should lead to what will have to pass for a vacation. My arthritis has chosen the middle of summer to act up so that's a bit disconcerting. I still get my agonizing bouts where the headaches exceed what I can ignore for a couple of hours each day and any storm in the area will torture me. If I were looking to become Big B Better, these things would bother me more. Instead, I'm pleased with myself for managing to find improvement. I'm little b better than I was.
Friday, August 9, 2013
Friday, August 2, 2013
Hopelessly Restless
My schedule is reversed again so I must have appointments coming up. Right now, it's 6:30am and I'm feeling hopelessly restless. I thought about some random writing project that's been waiting in the wings forever and so I started it last night. It doesn't feel right but I kept writing with some breaks for playing an old computer game that I've had for years. I'd play for a little while then feel the need to write. It was almost a compulsion. Next, I'd feel an equal compulsion to get back to the game. Rinse, repeat.
I realized that I hadn't taken my meds from bedtime last night which probably has a lot to do with the inability to relax my mind. Both of my pain meds with psychoactive ingredients are to be taken at bedtime. One calms me and keeps me from twitching as badly as I would otherwise. The other inhibits the re-uptake of some neurotransmitters that regulate pain tolerance (and mood) so I've been trying to be better about taking that one. The problem has been how similar it looks to the medicine for fibromyalgia control. I take that one three times a day instead of once at bedtime so I can't keep them in the same container. It took me years to find the solution of keeping the bedtime only pill with my breakthrough pain meds. Since I always - except last night - need the breakthrough meds late at night, they go well together.
Sometimes I can't help but mourn the things I've lost over the years. One thing that used to charge me up more than most things was a good political debate. Now, the hostility just wears me down. I'll still do my easy activism (things that require a mouse click or a short local phone call at most) but I can't handle extended personal debate anymore. Everything seems to be very personal anymore except when it matters very little to me. Don't hassle me about the Affordable Care Act (Obamacare) because it does very little and those who oppose it seem to be purely vindictive. My former employer (several jobs ago back when I was healthy enough to work), Papa John's made a stink about how each pizza will cost a nickle more so I've been sure to tip the driver an extra nickle per pizza asking them to mention it to management. If you can afford delivery pizza, you can afford to pay an extra nickle! The ACA takes us in the right direction so that is a good thing. If you don't like it, threaten to reveal where the aliens told you they buried Jimmy Hoffa!
Ah, that felt good but that's because no one was hitting back. The return shots used to be fuel for me but now they just hurt. How can anyone complain about something that moves us toward a more compassionate society? I had one nutty doctor tell me that it would destroy the health care system despite it not affecting the currently insured at all. This was when I was already moaning in pain. Apparently, Australia has flaws in their health care system so the United States can't do better. Call me an arrogant American but that makes me cry foul. She didn't have to force me into a debate while attaching electrodes to my head. She forced me by expressing disagreement, of course. Just put a gun to my head next time! Then again, there were a lot of helpful things she did that she didn't have to do. I am very fond of my doctors including ones like her whom I may never see again. Thanks to her, I believe I have one fewer diagnosis in my chart. No sleep apnea! Woo!
Life with greatly reduced stress has been nice. It can't last so I should be stockpiling sleep for those later times. Of course, the doctors tell me you can't stockpile sleep or make up hours missed. I should sleep when I can because I need more sleep than most people get instead of less. It's a brain damage thing. I have two issues with sleeping that cause the most trouble. One is something I like to call "the frantics." It amounts to a phobic level of discomfort at the thought of missing something fun while not in severe pain. If I waste time tossing and turning when I could be doing something fun, I get angry about it. There's just too much time when I'm stuck doing something pointless or I'm in too much pain to concentrate on anything. If I am so tired that I can't stay awake, I get the ten second dreams where I find myself in some stressful situation like driving without a license. Sometimes, it's a dream about the past when I could drive legally and I'm trying to stay awake long enough to pull over safely. Dreaming about frantic attempts to stay away is not conducive to sleep.
The other side of the coin comes when I get into a deep sleep. I don't want to wake up. It doesn't matter what I'm missing. Sleep is just too comfortable unless I'm having nightmares but even they don't get me out of bed. I find myself lying there half asleep trying to get back to total sleep until I realize something. I'm lying there in severe discomfort from having a post nasal drip but I know it will be much worse when I go completely awake. That's when the gagging will start. It's been a long time since I have actually thrown up from this but I tend to feel helpless to avoid it for at least half an hour unless I'm actively drinking a carbonated beverage. Diet Pepsi, or Diet Cherry Pepsi to be even more specific, is my drink of choice during these times. That might be why I'm afraid of lying down to sleep now around my usual time. We don't have anything in the house and I have no problems using Brand X especially when guzzling to clear my throat. We have water and some milk that is most likely spoiled but that's it until Melissa comes home from work. It's not a money thing but she wasn't feeling well on her day off and didn't bring anything home the next day.
We could pass the potato chip test these days. I used to have an economic theory based on potato chips. You could ask someone a theoretical question. "You wanted potato chips and did not buy them. Why?" If the answer was something about rent or a car payment, the person had to be in over their head financially. If the answer was about willpower and a desire to be healthier, they might just be okay. We've had money for potato chips for as long as I can remember so that's a good thing. When we don't have them, it's something to do with an attempt at improved health or it's about willpower. It might also be about the principle of waiting 48 hours to get a much better price but it has nothing to do with a lack of under two dollars.
Don't ask me about being able to spend $2000. That's where my problems come in but divide by one thousand and all is good. Divide by 100 and we could still do it if it were the only addition. This is a little like what the frantics feel like on a good day. I'm all disjointed and pacing back and forth in my mind. It could be worse.
I realized that I hadn't taken my meds from bedtime last night which probably has a lot to do with the inability to relax my mind. Both of my pain meds with psychoactive ingredients are to be taken at bedtime. One calms me and keeps me from twitching as badly as I would otherwise. The other inhibits the re-uptake of some neurotransmitters that regulate pain tolerance (and mood) so I've been trying to be better about taking that one. The problem has been how similar it looks to the medicine for fibromyalgia control. I take that one three times a day instead of once at bedtime so I can't keep them in the same container. It took me years to find the solution of keeping the bedtime only pill with my breakthrough pain meds. Since I always - except last night - need the breakthrough meds late at night, they go well together.
Sometimes I can't help but mourn the things I've lost over the years. One thing that used to charge me up more than most things was a good political debate. Now, the hostility just wears me down. I'll still do my easy activism (things that require a mouse click or a short local phone call at most) but I can't handle extended personal debate anymore. Everything seems to be very personal anymore except when it matters very little to me. Don't hassle me about the Affordable Care Act (Obamacare) because it does very little and those who oppose it seem to be purely vindictive. My former employer (several jobs ago back when I was healthy enough to work), Papa John's made a stink about how each pizza will cost a nickle more so I've been sure to tip the driver an extra nickle per pizza asking them to mention it to management. If you can afford delivery pizza, you can afford to pay an extra nickle! The ACA takes us in the right direction so that is a good thing. If you don't like it, threaten to reveal where the aliens told you they buried Jimmy Hoffa!
Ah, that felt good but that's because no one was hitting back. The return shots used to be fuel for me but now they just hurt. How can anyone complain about something that moves us toward a more compassionate society? I had one nutty doctor tell me that it would destroy the health care system despite it not affecting the currently insured at all. This was when I was already moaning in pain. Apparently, Australia has flaws in their health care system so the United States can't do better. Call me an arrogant American but that makes me cry foul. She didn't have to force me into a debate while attaching electrodes to my head. She forced me by expressing disagreement, of course. Just put a gun to my head next time! Then again, there were a lot of helpful things she did that she didn't have to do. I am very fond of my doctors including ones like her whom I may never see again. Thanks to her, I believe I have one fewer diagnosis in my chart. No sleep apnea! Woo!
Life with greatly reduced stress has been nice. It can't last so I should be stockpiling sleep for those later times. Of course, the doctors tell me you can't stockpile sleep or make up hours missed. I should sleep when I can because I need more sleep than most people get instead of less. It's a brain damage thing. I have two issues with sleeping that cause the most trouble. One is something I like to call "the frantics." It amounts to a phobic level of discomfort at the thought of missing something fun while not in severe pain. If I waste time tossing and turning when I could be doing something fun, I get angry about it. There's just too much time when I'm stuck doing something pointless or I'm in too much pain to concentrate on anything. If I am so tired that I can't stay awake, I get the ten second dreams where I find myself in some stressful situation like driving without a license. Sometimes, it's a dream about the past when I could drive legally and I'm trying to stay awake long enough to pull over safely. Dreaming about frantic attempts to stay away is not conducive to sleep.
The other side of the coin comes when I get into a deep sleep. I don't want to wake up. It doesn't matter what I'm missing. Sleep is just too comfortable unless I'm having nightmares but even they don't get me out of bed. I find myself lying there half asleep trying to get back to total sleep until I realize something. I'm lying there in severe discomfort from having a post nasal drip but I know it will be much worse when I go completely awake. That's when the gagging will start. It's been a long time since I have actually thrown up from this but I tend to feel helpless to avoid it for at least half an hour unless I'm actively drinking a carbonated beverage. Diet Pepsi, or Diet Cherry Pepsi to be even more specific, is my drink of choice during these times. That might be why I'm afraid of lying down to sleep now around my usual time. We don't have anything in the house and I have no problems using Brand X especially when guzzling to clear my throat. We have water and some milk that is most likely spoiled but that's it until Melissa comes home from work. It's not a money thing but she wasn't feeling well on her day off and didn't bring anything home the next day.
We could pass the potato chip test these days. I used to have an economic theory based on potato chips. You could ask someone a theoretical question. "You wanted potato chips and did not buy them. Why?" If the answer was something about rent or a car payment, the person had to be in over their head financially. If the answer was about willpower and a desire to be healthier, they might just be okay. We've had money for potato chips for as long as I can remember so that's a good thing. When we don't have them, it's something to do with an attempt at improved health or it's about willpower. It might also be about the principle of waiting 48 hours to get a much better price but it has nothing to do with a lack of under two dollars.
Don't ask me about being able to spend $2000. That's where my problems come in but divide by one thousand and all is good. Divide by 100 and we could still do it if it were the only addition. This is a little like what the frantics feel like on a good day. I'm all disjointed and pacing back and forth in my mind. It could be worse.
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