I believe it was yesterday when I started thinking about what a failure this blog project has become. I've hardly posted at all and haven't had all that much new to say. I thought that I might as well quit when I remembered something I like to call The Expectations Game. Last week, I made a special effort to do all the housework I could handle knowing that it wouldn't be that much by ordinary standards. Soon enough, I found myself asleep for much of two days straight and I hadn't done nearly what I'd expected.
Was I an actual failure? No. This was just the Expectations Game trying to take a big bite out of my ass. Anticipation can be a good thing but expectations are almost never good. If you learned to set your sights high like I did, the best you can do is meet expectations. More often, you're going to fall short. Is it because of some great failing in you? No! The Expectations Game is evil and even dangerous.
For someone suffering from chronic pain, you can get bitten both ways if you try to play the game. Set your expectations too high and nothing is enjoyable enough to be worth the price you paid for it in pain. Set those expectations too low and then there's no point in trying. Things are what they are. There will be a lot of days when I'll be in too much pain to write so I don't promise any particular posting quota. I don't expect the big concert in May to be equal to the great Pearl Jam show of 2009 but I do know there will be things to enjoy.
At first, I tried to eliminate all expectations from my life but it didn't work. I'm a planner and part of planning is knowing or having an idea of what you might face. It's not enough to be a pessimist and assume that everything will go wrong. What if something goes right and you're unprepared for it? The point is to keep your expectations neutral. If you suffer from chronic pain, you can try to find ways to minimize its effects. If you have a ration of pain pills for breakthrough pain, try to save up a safe but effective amount of the medicine for pain related to the exercise or noise you might face. Without the extra pain, the treat activity might be even better. The same thing applies to the "weird and wonderful" symptoms we Chiarians face on a regular basis.
Don't go overboard expecting the worst to happen. Once you've done all that you can to prepare for it, there's no point in extra dread. Have the most fun you can and don't blame yourself if something goes wrong. That was something that had a terrible effect on me when I was younger. Bad things happen and they don't have to be your fault. Take responsibility for your preparation and for how you react. The actual bad event is neutral.
Sometimes, you might end up kicking yourself anyway. When you're done, you have two main choices. You can kick yourself for having the setback of kicking yourself or you can let it go. These expectations can be habits formed over a lifetime so it can take a long time to be done with them. There's an overriding rule here for both good and bad events: "This too shall pass." Try to appreciate the good times and enjoy the here and now because it will end. The same thing applies for the bad times. There's nothing wrong with enjoying any good that gets mixed in with the bad but even truly horrid events will end. When it's over, try to let it go.
Monday, March 26, 2012
Tuesday, March 20, 2012
Sleep or Lack of Sleep (Part One)
I've been meaning to write about sleep for a few days now but the task daunted me. How could I write about such a complex and frustrating topic when I know I'm only beginning to understand it myself? I could write a book on the subject and not get anywhere! That's when I remembered that this is a blog. It's a blog written by a person who openly admits to being sick and having trouble with daily life much less adding in the extras.
This is going to be a running topic like pain control methods. As with most running topics, I believe I should start as close to the beginning as I can. From what I can remember, I've always had trouble getting to sleep. The reasons for that are unknown and the guesses are a little controversial. Therefore, I'm going to concentrate on the effects of sleep or the lack of it.
When I was still healthy, I functioned best on between five and six hours of sleep each night. If I got more than that, I wanted nothing more than to sleep off into infinity. Getting less than that meant fighting to stay awake all day. Because memories fade over time, I'm only including high school until I got sick or, roughly, September 1988 to December 1999 as my healthy time.
Sometimes, I think getting too much sleep is worse than not getting enough. I have allergies and so I suffer from a post-nasal drip while I sleep in bed. A post-nasal drip is essentially a backwards runny nose. Instead of running outward where it can be wiped, it drips down the back of my throat. Without taking this digusting problem into account, I already have an exaggerated gag reflex. My PCP has a blast trying to look down my throat but we both keep a sense of humor about it.
Let's enter in factor number two. I use my CPAP machine when I sleep in bed. It keeps my airway open from my nose to my lungs with the strange side effect of me not swallowing the entire time. I drool an awful lot and I don't swallow the whole time. (For future reference, do not take the term "night" literally. It's rare that I sleep at night but it is tough to avoid using expressions I hear constantly about "a night's sleep.") When I wake up and take off the mask, I tend to have this awful urge to vomit. It's the gag reflex kicking in for the start of my fun.
I have to rush into the bathroom because I am incontinent and I have to cough up everything that's in my throat. Coughing plus a full bladder plus already wearing the Depends for the whole "night" adds up to a fun scenario. Therefore, I try not to cough until I hit the bathroom and I'm ready. After I cough up everything that can be coughed up, I'm left with more that is likely just irritation/imagination. The best thing for dealing with that is a carbonated drink of some sort. There's no endorsement deal or anything but this household prefers Diet Pepsi when it goes on a good sale. Otherwise it's store brand or nothing like this past week when we ran out of money.
That's not some sort of backhanded plea for help. We spent the money and had fun with some of it. In addition, tomorrow (Wednesday) is payday. We will make it yet again. That's what I have to remember after spending an extended time asleep in bed. There's part of me that is convinced dying would have to be better than this trauma of waking up. Once again, don't worry. There's no part of me that will "do something about it." I know that the misery will pass like any other moment of panic.
This is probably a good place to stop. If I go on, I will get into lack of sleep which is a different topic.
This is going to be a running topic like pain control methods. As with most running topics, I believe I should start as close to the beginning as I can. From what I can remember, I've always had trouble getting to sleep. The reasons for that are unknown and the guesses are a little controversial. Therefore, I'm going to concentrate on the effects of sleep or the lack of it.
When I was still healthy, I functioned best on between five and six hours of sleep each night. If I got more than that, I wanted nothing more than to sleep off into infinity. Getting less than that meant fighting to stay awake all day. Because memories fade over time, I'm only including high school until I got sick or, roughly, September 1988 to December 1999 as my healthy time.
Sometimes, I think getting too much sleep is worse than not getting enough. I have allergies and so I suffer from a post-nasal drip while I sleep in bed. A post-nasal drip is essentially a backwards runny nose. Instead of running outward where it can be wiped, it drips down the back of my throat. Without taking this digusting problem into account, I already have an exaggerated gag reflex. My PCP has a blast trying to look down my throat but we both keep a sense of humor about it.
Let's enter in factor number two. I use my CPAP machine when I sleep in bed. It keeps my airway open from my nose to my lungs with the strange side effect of me not swallowing the entire time. I drool an awful lot and I don't swallow the whole time. (For future reference, do not take the term "night" literally. It's rare that I sleep at night but it is tough to avoid using expressions I hear constantly about "a night's sleep.") When I wake up and take off the mask, I tend to have this awful urge to vomit. It's the gag reflex kicking in for the start of my fun.
I have to rush into the bathroom because I am incontinent and I have to cough up everything that's in my throat. Coughing plus a full bladder plus already wearing the Depends for the whole "night" adds up to a fun scenario. Therefore, I try not to cough until I hit the bathroom and I'm ready. After I cough up everything that can be coughed up, I'm left with more that is likely just irritation/imagination. The best thing for dealing with that is a carbonated drink of some sort. There's no endorsement deal or anything but this household prefers Diet Pepsi when it goes on a good sale. Otherwise it's store brand or nothing like this past week when we ran out of money.
That's not some sort of backhanded plea for help. We spent the money and had fun with some of it. In addition, tomorrow (Wednesday) is payday. We will make it yet again. That's what I have to remember after spending an extended time asleep in bed. There's part of me that is convinced dying would have to be better than this trauma of waking up. Once again, don't worry. There's no part of me that will "do something about it." I know that the misery will pass like any other moment of panic.
This is probably a good place to stop. If I go on, I will get into lack of sleep which is a different topic.
Friday, March 16, 2012
My First Chiari Surgery Anniversary
On March 15, 2000, I went in for my first Chiari surgery with a local neurosurgeon. We'll leave aside what a big mistake it was not going with an expert and write about the experience as I saw it 12 years ago. First of all, I remember not having the luxury of being scared. My in-laws were staying with Melissa to help her through the experience and my parents were also involved. With all that fear and concern around me, I had to play it very cool and nonchalant. That catch phrase for the experience was, "I'm ready to go home now."
The most annoying part of the whole process was the fact that I was forbidden water after midnight the night before the surgery. They tell you this for good reason and I would have griped a lot less if someone had bothered to explain it to me. When you go under general anesthesia, your autonomic functions cease. You cannot breathe on your own but they intubate you to deal with that. More dangerously, your esophagus also ceases to function. If you have food or water in your system, there is a chance that it will reflux back up into your throat and then interfere with the intubation. You can die from this complication so it's better to be thirsty even when going through that dry mouth you can get from panic. I like to buck the rules but this is one to follow.
I had the first surgery slot of the day at 8am but that's a good thing. They tell everyone not to eat or drink after 8am because they will move people up to fill any unused OR time. So, you might think your surgery is at noon but it could end up being 8am with almost no notice. Mine was at 8am and I arrived in plenty of time. The first thing they made me do was change into one of those miserable hospital gowns. Part of me believes that the design of those gowns is meant to take away your dignity. Without your dignity, you're more likely to obey hospital rules no matter how stupid and pointless they are. In my case, I committed the unthinkable sin of leaving my underwear on because they help keep the Depends in place. One nurse started to raise hell about it until I reminded her that I was incontinent and that the hospital might want to pay attention to such details. She backed down and my underwear was removed while I was unconscious in the OR without further comment.
Don't worry. That wasn't really a major argument. The first real unpleasantness came when an IV nurse came to give me my arterial IV. The only warning was that it might hurt a bit. As a newlywed, I was still trying to be brave in front of my wife so she was shocked when I let out a loud yell. That was one of the single most painful things I've ever experienced. This set the tone for the next what seemed like a few hours. They took my watch away from me with the rest of my clothes so I was left to wait in a pre-op ward with no clock.
After that shocking pain of that shot, I was becoming unnerved. The creeping panic that led a six year old me to beg my father not to let them take me away was setting in. (Yes, I've given him a few scars, too.) Melissa stayed with me to the last minute when I assumed I was headed into the OR. It was the pre-op ward instead. The first good news was that they wheeled in two patients after me. Both of them were more scared than I was willing to show. I gained strength by helping talk them through it and yelling for a nurse when one of the women had been asking for help to use the bathroom for at least ten minutes with no result. Nurses had gone in and out with no response. After a pair helped her into the bathroom, I heard one of them muttering about me on the way out. "I see he's the group captain."
They had better believe it. I wasn't putting up with a single unnecessary discomfort in me or in anyone I could help. Eventually, I was by myself again until my anesthesiologist came in. He introduced himself and listened to me complain a bit before telling me that I needed another arterial IV. He assured me that he wasn't a sadist who would put one of those in without using a local first. Sadist was his word not mine. Evil IV nurse from 2000, you were a sadist! It went better with the comparatively slight pain of the local.
Eventually, I made it to the OR and was surrounded by people in masks. I have a real problem with people putting things over my face. It triggers a panic reaction and my panic was on a hair trigger at this point. Someone must have seen this because the mask went out of my sight and the OR people reintroduced myself. My first surgeon, his OR nurse and the anesthesiologist should have all been familiar but the masks plus whatever I already had in my system made things fuzzy. In any case, I was calm enough to let them put the mask on and they told me to count back from 100.
My greatest fear out of everything was that I would wake up paralyzed but able to feel pain during the surgery. My first surgeon noted that he's never seen more people scared by one "60 Minutes" piece. He promised that they had technology to prevent that now. I closed my eyes, counted 99 and then opened them to see Melissa in the recovery room. To me, no time had passed but others remarked that it had been something like six hours. With my beloved's face before me, I just had to say it. "I'm ready to go home now."
That's when the pain hit. A nurse appeared with a syringe and I asked her what was in it with the intent of refusing any unnecessary medication. She put the needle in my IV, pressed the plunger down, then said, "Morphine." I lost consciousness again and was transported to the ICU.
I am withholding the names of some people, others I've forgotten yet Patrick must be given his just due. I am a fat guy and I don't pretend otherwise. I had to be moved to avoid bed sores and to check the wound on the back of my head. Moving me required two women nurses or Patrick. When he moved me, it hurt a lot less. Wednesday night and Thursday disappeared into a fog of extreme pain and blurriness of morphine. Did I mention that I was lying on the back of my head where the surgical area went from the top of my head to down just between my shoulders? It hurt to the point where I was terrified before my second surgery but that's another story. As they started stepping down my morphine doses, I learned to meditate a little just to survive. If I did so, it felt as if the pain was in someone else's head.
On Friday, they moved me to a regular room and I discovered just how much stronger I was. When my first surgeon came to see me on rounds, I made sure I was already on my feet. Standing was the most difficult thing to do so I did that while he was still out of sight. Hospital life had already used up all of my patience. I essentially missed a dose of painkillers due to a nursing shift change, I had to eat bad tuna for lunch and I felt nothing wrong but pain and embarrassment. When I went to use the bathroom, a nurse insisted that I wait for her "help." I was much closer to the door than she was so it was locked before she arrived.
I had already suffered through a wheelchair ride over divided carpets that felt like riding over potholes in a car. I had dealt with the drawing of blood and other checks every two hours. It was all I could do not to bite someone. I had been handling my own medication since age 4 so having someone hand me a cup of pills and telling me to take them was too much. Tell me what each one does and why you expect me to take it. Several got returned because I disagreed with the need for them.
Thus, my first surgeon arrived and I put on a show for him to send me home that day. Melissa was livid because she had a crew of friends scheduled to help her move furniture the next day. She didn't want me there and trying to help. Thus, a three way negotiation took place resulting in a tenative return home date of Monday. It was actually the best I thought I could do so I agreed.
By around midnight, I was bored and miserable. I couldn't stay in that room. When I was in bed and on IV pain meds, it was easy to sleep or just drift. When I was able to get around, the old insomnia came back. The nurses made a deal with me. They told me in advance when they wanted me to be in my bed for medication and I obliged them. The rest of the time was spent exploring and getting my strength back including once being lost enough to be seconds away from having to show someone my wristband and accept an escort back. Luckily, I saw a familiar landmark in time.
Around midnight, I fell in love. Oh, it was a short lived and completely one-sided affair but I met my dream nurse. She caught me out of my bed reading a newspaper in the hall shortly after midnight. I couldn't evade her so I sat there for my scolding. Instead, she offered me a spot at the nurse's station where fellow insomniac patients were playing cards and drinking coffee. When it was time for my checkup, I was asleep but this beautiful nurse didn't have to wake me up all the way and she didn't.
I started hanging out with my insomniac crew and our leader (when she was working) over the weekend. That's when a strange and horrifying thought hit me. My needs were taken care of, I had friends to help me stay busy and the food wasn't that bad. I didn't mind hospital life all that much. It was something akin to Stockholm Syndrome where hostages had formed bonds with their captors. I was making the best of it. On the inside, I went into a rage. There was no way that I was staying prisoner in that place a day longer than necessary!
Monday arrived and they let me go. I don't even remember how the great battle over the wheelchair went. I do remember how painful the car ride was. This was pre-brace so I had no neck support and the pain was just ungodly. We got home and I went up to the apartment in delight. I had escaped before I had accepted the hospital as my place.
It saddened me that one woman from my crew was going to be there for months at a minimum. She was a nice elderly lady with a great sense of humor but she had a brain tumor or something similar. I believe she most likely died in there but she had truly adapted for good reason. I wish I remembered her name.
The most annoying part of the whole process was the fact that I was forbidden water after midnight the night before the surgery. They tell you this for good reason and I would have griped a lot less if someone had bothered to explain it to me. When you go under general anesthesia, your autonomic functions cease. You cannot breathe on your own but they intubate you to deal with that. More dangerously, your esophagus also ceases to function. If you have food or water in your system, there is a chance that it will reflux back up into your throat and then interfere with the intubation. You can die from this complication so it's better to be thirsty even when going through that dry mouth you can get from panic. I like to buck the rules but this is one to follow.
I had the first surgery slot of the day at 8am but that's a good thing. They tell everyone not to eat or drink after 8am because they will move people up to fill any unused OR time. So, you might think your surgery is at noon but it could end up being 8am with almost no notice. Mine was at 8am and I arrived in plenty of time. The first thing they made me do was change into one of those miserable hospital gowns. Part of me believes that the design of those gowns is meant to take away your dignity. Without your dignity, you're more likely to obey hospital rules no matter how stupid and pointless they are. In my case, I committed the unthinkable sin of leaving my underwear on because they help keep the Depends in place. One nurse started to raise hell about it until I reminded her that I was incontinent and that the hospital might want to pay attention to such details. She backed down and my underwear was removed while I was unconscious in the OR without further comment.
Don't worry. That wasn't really a major argument. The first real unpleasantness came when an IV nurse came to give me my arterial IV. The only warning was that it might hurt a bit. As a newlywed, I was still trying to be brave in front of my wife so she was shocked when I let out a loud yell. That was one of the single most painful things I've ever experienced. This set the tone for the next what seemed like a few hours. They took my watch away from me with the rest of my clothes so I was left to wait in a pre-op ward with no clock.
After that shocking pain of that shot, I was becoming unnerved. The creeping panic that led a six year old me to beg my father not to let them take me away was setting in. (Yes, I've given him a few scars, too.) Melissa stayed with me to the last minute when I assumed I was headed into the OR. It was the pre-op ward instead. The first good news was that they wheeled in two patients after me. Both of them were more scared than I was willing to show. I gained strength by helping talk them through it and yelling for a nurse when one of the women had been asking for help to use the bathroom for at least ten minutes with no result. Nurses had gone in and out with no response. After a pair helped her into the bathroom, I heard one of them muttering about me on the way out. "I see he's the group captain."
They had better believe it. I wasn't putting up with a single unnecessary discomfort in me or in anyone I could help. Eventually, I was by myself again until my anesthesiologist came in. He introduced himself and listened to me complain a bit before telling me that I needed another arterial IV. He assured me that he wasn't a sadist who would put one of those in without using a local first. Sadist was his word not mine. Evil IV nurse from 2000, you were a sadist! It went better with the comparatively slight pain of the local.
Eventually, I made it to the OR and was surrounded by people in masks. I have a real problem with people putting things over my face. It triggers a panic reaction and my panic was on a hair trigger at this point. Someone must have seen this because the mask went out of my sight and the OR people reintroduced myself. My first surgeon, his OR nurse and the anesthesiologist should have all been familiar but the masks plus whatever I already had in my system made things fuzzy. In any case, I was calm enough to let them put the mask on and they told me to count back from 100.
My greatest fear out of everything was that I would wake up paralyzed but able to feel pain during the surgery. My first surgeon noted that he's never seen more people scared by one "60 Minutes" piece. He promised that they had technology to prevent that now. I closed my eyes, counted 99 and then opened them to see Melissa in the recovery room. To me, no time had passed but others remarked that it had been something like six hours. With my beloved's face before me, I just had to say it. "I'm ready to go home now."
That's when the pain hit. A nurse appeared with a syringe and I asked her what was in it with the intent of refusing any unnecessary medication. She put the needle in my IV, pressed the plunger down, then said, "Morphine." I lost consciousness again and was transported to the ICU.
I am withholding the names of some people, others I've forgotten yet Patrick must be given his just due. I am a fat guy and I don't pretend otherwise. I had to be moved to avoid bed sores and to check the wound on the back of my head. Moving me required two women nurses or Patrick. When he moved me, it hurt a lot less. Wednesday night and Thursday disappeared into a fog of extreme pain and blurriness of morphine. Did I mention that I was lying on the back of my head where the surgical area went from the top of my head to down just between my shoulders? It hurt to the point where I was terrified before my second surgery but that's another story. As they started stepping down my morphine doses, I learned to meditate a little just to survive. If I did so, it felt as if the pain was in someone else's head.
On Friday, they moved me to a regular room and I discovered just how much stronger I was. When my first surgeon came to see me on rounds, I made sure I was already on my feet. Standing was the most difficult thing to do so I did that while he was still out of sight. Hospital life had already used up all of my patience. I essentially missed a dose of painkillers due to a nursing shift change, I had to eat bad tuna for lunch and I felt nothing wrong but pain and embarrassment. When I went to use the bathroom, a nurse insisted that I wait for her "help." I was much closer to the door than she was so it was locked before she arrived.
I had already suffered through a wheelchair ride over divided carpets that felt like riding over potholes in a car. I had dealt with the drawing of blood and other checks every two hours. It was all I could do not to bite someone. I had been handling my own medication since age 4 so having someone hand me a cup of pills and telling me to take them was too much. Tell me what each one does and why you expect me to take it. Several got returned because I disagreed with the need for them.
Thus, my first surgeon arrived and I put on a show for him to send me home that day. Melissa was livid because she had a crew of friends scheduled to help her move furniture the next day. She didn't want me there and trying to help. Thus, a three way negotiation took place resulting in a tenative return home date of Monday. It was actually the best I thought I could do so I agreed.
By around midnight, I was bored and miserable. I couldn't stay in that room. When I was in bed and on IV pain meds, it was easy to sleep or just drift. When I was able to get around, the old insomnia came back. The nurses made a deal with me. They told me in advance when they wanted me to be in my bed for medication and I obliged them. The rest of the time was spent exploring and getting my strength back including once being lost enough to be seconds away from having to show someone my wristband and accept an escort back. Luckily, I saw a familiar landmark in time.
Around midnight, I fell in love. Oh, it was a short lived and completely one-sided affair but I met my dream nurse. She caught me out of my bed reading a newspaper in the hall shortly after midnight. I couldn't evade her so I sat there for my scolding. Instead, she offered me a spot at the nurse's station where fellow insomniac patients were playing cards and drinking coffee. When it was time for my checkup, I was asleep but this beautiful nurse didn't have to wake me up all the way and she didn't.
I started hanging out with my insomniac crew and our leader (when she was working) over the weekend. That's when a strange and horrifying thought hit me. My needs were taken care of, I had friends to help me stay busy and the food wasn't that bad. I didn't mind hospital life all that much. It was something akin to Stockholm Syndrome where hostages had formed bonds with their captors. I was making the best of it. On the inside, I went into a rage. There was no way that I was staying prisoner in that place a day longer than necessary!
Monday arrived and they let me go. I don't even remember how the great battle over the wheelchair went. I do remember how painful the car ride was. This was pre-brace so I had no neck support and the pain was just ungodly. We got home and I went up to the apartment in delight. I had escaped before I had accepted the hospital as my place.
It saddened me that one woman from my crew was going to be there for months at a minimum. She was a nice elderly lady with a great sense of humor but she had a brain tumor or something similar. I believe she most likely died in there but she had truly adapted for good reason. I wish I remembered her name.
Tuesday, March 13, 2012
PDD: March 2012 (Part Two)
The reason why I had to split this post into two is that I was exhausted enough to have trouble spelling "the." I was tired going in to the appointment after sleeping some the night before and I have been on a run of headache days. The appointments tend to be enough to wear me out on their own even when they are so mild. Sometimes, I can hardly walk on my way out the door. I was happy that it waited until I got into the car this time.
By the time we made it home, I was happy to take my meds and pass out. We had a nice lunch from Wawa as we do when we're not broke on Pain Doc Day. This is a leftover tradition from the times when we needed to pack a picnic lunch and dinner to make it through the day. In any case, I was in bad shape when we got home and I drifted in and out of consciousness for a while. Eventually, Melissa got the urge to go browse the local thrift shop and I'm sure she told me about it before she left.
I just know that the phone woke me up when it rang and that a couple of hours had passed minimum. It was Melissa's boss on the phone and I'm glad she knows me. Otherwise, admitting that I had no idea if Melissa was home or asleep or what might have been embarrassing. As soon as we hung up the phone, I went right back to sleep until Melissa came home. I have no idea what happened through most of the night because I had just enough time to tell her about the boss calling before the headache hit and smashed me.
As I'm sure most people with chronic pain know, the idea is to medicate before the headache reaches that level but I was asleep. The good news was that I had started this blog so I had sound procedures for dealing with extreme pain on the brain. I took my breakthrough pain meds and then went into a nice trance. The headache felt as if it belonged to someone else and I was just snooping around in that poor person's head. Melissa informed me that there was wet weather moving in and that's enough to make for a miserable time. I tried to respond to her and remembered the bad news.
I don't know about other people but I can't speak or do anything requiring active thought in my trances. I can't even sing along to the songs on the radio. Ouch! Happily, I let her know this and it took almost no time to slip back into the trance. I couldn't read or write in my head or anything. The happy side of this was that the local firehouse siren didn't hurt nor did I get startled when Melissa coughed and the cats exploded out of our laps. I was possibly more aware than usual but couldn't do anything with the awareness.
Boredom set in and I kept "peeking" out of the trance to see if the pain was still waiting. I have no idea how long it took but the meds did take effect and I was able to "wake up" without agony. In fact, I was able to do as much or more than I can "normally" for a brief time before I got so tired that I couldn't spell at all. I went downstairs and got into my chair for the night and I actually slept some more. At least five hours went by this time while I slept and then got startled by the fact that I didn't recognize the TV show in front of me.
Wow! I just checked my blood sugar meter because I usually test in the middle of the night. That's usually the middle of my day or bedtime so it's not unusual for me. It is more accurate than trying to wake up in the middle of the afternoon to test on most days. After all, you're not supposed to wake up in the middle of your fast to test. Bedtime and wakeup time are two of the times when I might test. I'm supposed to do so twice a day out of seven times that reflect when I've eaten and my activity level.
You won't learn much about diabetes from me. Normally, I treat it like it's a big secret due to growing up with people who threatened me with it as if it were a punishment. (If you smoke, you will get cancer. If you overeat, you will get diabetes.) Diet is a contributing factor in becoming a diabetic but so is genetics. I don't talk or write about it much because it's one of my triggers. Once I get going on it, you're likely to see a lengthy tirade. This time, I'm just amazed that I slept through the night.
Well, it's rained overnight or early this morning so it's likely to be a bad pain day. I'm used to being so sleep deprived that I conk out on days like this but I might have to try something different. Maddie has been taking outrageous advantage of all the lap time time. If I'm the slightest bit sleepy and tell her to get off my lap, she will get up, stretch, curl up into a tighter ball and go back to sleep. I tend to follow within a minute or two.
Okay. This is going to be a painful day.
By the time we made it home, I was happy to take my meds and pass out. We had a nice lunch from Wawa as we do when we're not broke on Pain Doc Day. This is a leftover tradition from the times when we needed to pack a picnic lunch and dinner to make it through the day. In any case, I was in bad shape when we got home and I drifted in and out of consciousness for a while. Eventually, Melissa got the urge to go browse the local thrift shop and I'm sure she told me about it before she left.
I just know that the phone woke me up when it rang and that a couple of hours had passed minimum. It was Melissa's boss on the phone and I'm glad she knows me. Otherwise, admitting that I had no idea if Melissa was home or asleep or what might have been embarrassing. As soon as we hung up the phone, I went right back to sleep until Melissa came home. I have no idea what happened through most of the night because I had just enough time to tell her about the boss calling before the headache hit and smashed me.
As I'm sure most people with chronic pain know, the idea is to medicate before the headache reaches that level but I was asleep. The good news was that I had started this blog so I had sound procedures for dealing with extreme pain on the brain. I took my breakthrough pain meds and then went into a nice trance. The headache felt as if it belonged to someone else and I was just snooping around in that poor person's head. Melissa informed me that there was wet weather moving in and that's enough to make for a miserable time. I tried to respond to her and remembered the bad news.
I don't know about other people but I can't speak or do anything requiring active thought in my trances. I can't even sing along to the songs on the radio. Ouch! Happily, I let her know this and it took almost no time to slip back into the trance. I couldn't read or write in my head or anything. The happy side of this was that the local firehouse siren didn't hurt nor did I get startled when Melissa coughed and the cats exploded out of our laps. I was possibly more aware than usual but couldn't do anything with the awareness.
Boredom set in and I kept "peeking" out of the trance to see if the pain was still waiting. I have no idea how long it took but the meds did take effect and I was able to "wake up" without agony. In fact, I was able to do as much or more than I can "normally" for a brief time before I got so tired that I couldn't spell at all. I went downstairs and got into my chair for the night and I actually slept some more. At least five hours went by this time while I slept and then got startled by the fact that I didn't recognize the TV show in front of me.
Wow! I just checked my blood sugar meter because I usually test in the middle of the night. That's usually the middle of my day or bedtime so it's not unusual for me. It is more accurate than trying to wake up in the middle of the afternoon to test on most days. After all, you're not supposed to wake up in the middle of your fast to test. Bedtime and wakeup time are two of the times when I might test. I'm supposed to do so twice a day out of seven times that reflect when I've eaten and my activity level.
You won't learn much about diabetes from me. Normally, I treat it like it's a big secret due to growing up with people who threatened me with it as if it were a punishment. (If you smoke, you will get cancer. If you overeat, you will get diabetes.) Diet is a contributing factor in becoming a diabetic but so is genetics. I don't talk or write about it much because it's one of my triggers. Once I get going on it, you're likely to see a lengthy tirade. This time, I'm just amazed that I slept through the night.
Well, it's rained overnight or early this morning so it's likely to be a bad pain day. I'm used to being so sleep deprived that I conk out on days like this but I might have to try something different. Maddie has been taking outrageous advantage of all the lap time time. If I'm the slightest bit sleepy and tell her to get off my lap, she will get up, stretch, curl up into a tighter ball and go back to sleep. I tend to follow within a minute or two.
Okay. This is going to be a painful day.
Monday, March 12, 2012
Pain Doc Day - March 2012
I'll probably end up abbreviating these posts as PDD: Date but I figured it would make more sense to write it out at least once. Days when I see the pain doc can be days that fill me with purposeful rage in response to a perceived insult or new hope because of an idea that came up during the appointment. I plan on doing a narrative style post about the experience followed by later posts on specific topics. There isn't much of a narrative concerning today's appointment so I'll give you an overview of my history.
I have "worked my way" into the pain doc's new pain clinic. It's for stable patients who are at the maintenance level of treatment. From the patient's point of view, it's a lot like what skipping the security line at the airport and doing what little waiting you have to do in the first class lounge. I arrived a little earlier than usual for my appointment and Melissa noted that we left about three minutes after the appointment had been scheduled to start. Unfortunately, this is not the typical patient experience at the pain doc's office. It's a good news/bad news sort of thing. I've already told you the good news. The bad news is that I've been a patient at the practice for about ten years or so.
The typical patient experience from my point of view involves checking in at least 15 minutes before my appointment time in case of surprise paperwork. It also cushions me against bad luck in traffic or other resons for being late. I can't stand it when I'm late. If I may toot my own horn, I have a decent amount of patience and I pride myself in it. It might come from growing up around very impatient people but I am very rarely part of the problem when people get angry about delays.
Before the pain clinic idea went into effect, the over/under wait time for an appointment was three hours. In betting terms, that means you will wait more than three hours exactly as often as you will wait less. Three hours? How is it possible to have a three hour wait much less the eight hour waits I've experienced? There are a few main causes. The first is that there are not enough pain docs in the state of Delaware and there are too many patients. Insurance companies make the situation worse by forcing doctors to see two patients every 15 minutes. With pain management and all those knobs I've mentioned, this is physically impossible. Thus, the doctor starts "falling behind" in the first appointment. He can catch up a little with people like me who can deal with any issues below the doctor level. Then, he just has to show up, double check the underlings' work and sign off on it. (I use terms like underling, toady and peon for everyone below doctor level for the sake of humor and to help me disguise identities. I respect and actually like almost all of them.)
On some days, things go wrong. For insurance purposes, the slightest problem with a proceedure means a trip to the hospital by ambulance. When this happens, it's inevitable that someone will ask me if everyone must stop what they're doing and help. I don't remember why but the answer is yes. So, take the overscheduling required by the insurance company on a good day and throw in a full hour of nothing happening.
Thus, I joked to my fellow inmates that they should drop out of [needing pain management] and go to medical school along with all of the stuff you do afterward. The only other options are dropping dead or finding ways to cope and pass the time. How on Earth can you pass that much time? More specifically, how can you pass that much time when the environment triggers symptom spikes that make you want to die? As with home, music is a friend. There are tiny MP-3 players that can hold hours of music. With my MP-3 player and a paperback book that I could re-read, I was good for eight hours of entertainment.
The problems were symptom and crowd control. Symptom control was limited in the scope of what I could do so it was simpler. Noise makes me feel worse so I carry a supply of disposable ear plugs. Those are uncomfortable because my ears are also sensitive to the touch so I alternate methods. I wear the ear plugs for a while, use my MP-3 player with the less uncomfortable ear plug style earphones and I put up with the noise for a while. The same thing applies to seating where I go from an uncomfortable chair to needing to stretch out on the floor to feeling bruised on the floor to pacing off nervous tension.
One reason why I'm nervous is that I have a life long fear of getting caught up in a riot. People who are in pain have a natural tendency to feel angry. People who have to wait will fret even more in today's scheduled down to the second society. People who have people waiting on them usually at some expense have added stress. Then you have the people who work at the practice who do nothing but deal with angry people all day. They have to protect themselves against verbal abuse at the very least. This involves putting up a shell of polite assertiveness.
I use my experience of doing what I call "tiptoeing through the landmines" to help everyone that I can. There are times in life when a kind word or a smile can bring someone one important step back from the brink. Thus, I listen to people who want to talk and I hear the strangest rhings. My defenses include a healthy level of skepticism and the realization that I can afford to believe these people. I can't give them anything material so I am safe as long as I am careful to give out no protected information. As long as that riot doesn't start, I'm safe.
Finally, I managed to cope with the long waits by remembering the math class rule. Despite the fact that time appears to stop at the start of an unpleasant wait, it's an illusion. The struggle will end and things will get better. After all, one of the underlings came up with the idea of the pain clinic. After nearly a decade of these impossible waits, I get the pain clinic's royal treatment.
The rest of the day will have to wait for tomorrow.
I have "worked my way" into the pain doc's new pain clinic. It's for stable patients who are at the maintenance level of treatment. From the patient's point of view, it's a lot like what skipping the security line at the airport and doing what little waiting you have to do in the first class lounge. I arrived a little earlier than usual for my appointment and Melissa noted that we left about three minutes after the appointment had been scheduled to start. Unfortunately, this is not the typical patient experience at the pain doc's office. It's a good news/bad news sort of thing. I've already told you the good news. The bad news is that I've been a patient at the practice for about ten years or so.
The typical patient experience from my point of view involves checking in at least 15 minutes before my appointment time in case of surprise paperwork. It also cushions me against bad luck in traffic or other resons for being late. I can't stand it when I'm late. If I may toot my own horn, I have a decent amount of patience and I pride myself in it. It might come from growing up around very impatient people but I am very rarely part of the problem when people get angry about delays.
Before the pain clinic idea went into effect, the over/under wait time for an appointment was three hours. In betting terms, that means you will wait more than three hours exactly as often as you will wait less. Three hours? How is it possible to have a three hour wait much less the eight hour waits I've experienced? There are a few main causes. The first is that there are not enough pain docs in the state of Delaware and there are too many patients. Insurance companies make the situation worse by forcing doctors to see two patients every 15 minutes. With pain management and all those knobs I've mentioned, this is physically impossible. Thus, the doctor starts "falling behind" in the first appointment. He can catch up a little with people like me who can deal with any issues below the doctor level. Then, he just has to show up, double check the underlings' work and sign off on it. (I use terms like underling, toady and peon for everyone below doctor level for the sake of humor and to help me disguise identities. I respect and actually like almost all of them.)
On some days, things go wrong. For insurance purposes, the slightest problem with a proceedure means a trip to the hospital by ambulance. When this happens, it's inevitable that someone will ask me if everyone must stop what they're doing and help. I don't remember why but the answer is yes. So, take the overscheduling required by the insurance company on a good day and throw in a full hour of nothing happening.
Thus, I joked to my fellow inmates that they should drop out of [needing pain management] and go to medical school along with all of the stuff you do afterward. The only other options are dropping dead or finding ways to cope and pass the time. How on Earth can you pass that much time? More specifically, how can you pass that much time when the environment triggers symptom spikes that make you want to die? As with home, music is a friend. There are tiny MP-3 players that can hold hours of music. With my MP-3 player and a paperback book that I could re-read, I was good for eight hours of entertainment.
The problems were symptom and crowd control. Symptom control was limited in the scope of what I could do so it was simpler. Noise makes me feel worse so I carry a supply of disposable ear plugs. Those are uncomfortable because my ears are also sensitive to the touch so I alternate methods. I wear the ear plugs for a while, use my MP-3 player with the less uncomfortable ear plug style earphones and I put up with the noise for a while. The same thing applies to seating where I go from an uncomfortable chair to needing to stretch out on the floor to feeling bruised on the floor to pacing off nervous tension.
One reason why I'm nervous is that I have a life long fear of getting caught up in a riot. People who are in pain have a natural tendency to feel angry. People who have to wait will fret even more in today's scheduled down to the second society. People who have people waiting on them usually at some expense have added stress. Then you have the people who work at the practice who do nothing but deal with angry people all day. They have to protect themselves against verbal abuse at the very least. This involves putting up a shell of polite assertiveness.
I use my experience of doing what I call "tiptoeing through the landmines" to help everyone that I can. There are times in life when a kind word or a smile can bring someone one important step back from the brink. Thus, I listen to people who want to talk and I hear the strangest rhings. My defenses include a healthy level of skepticism and the realization that I can afford to believe these people. I can't give them anything material so I am safe as long as I am careful to give out no protected information. As long as that riot doesn't start, I'm safe.
Finally, I managed to cope with the long waits by remembering the math class rule. Despite the fact that time appears to stop at the start of an unpleasant wait, it's an illusion. The struggle will end and things will get better. After all, one of the underlings came up with the idea of the pain clinic. After nearly a decade of these impossible waits, I get the pain clinic's royal treatment.
The rest of the day will have to wait for tomorrow.
Friday, March 9, 2012
Pain Control Methods: Meditation
From here on, I'm going to use the abbreviation, PCM, for pain control methods in the titles. Thus, this post would be PCM: Meditation. Overnight, I was hit with an ice pick headache. Many Chiarians use the term because it feels like what we imagine having an ice pick stabbed through the top of the head would be like. (I offer apologies to anyone who has had an actual ice pick pierce the top of their skull for any inaccuracies in my depiction of the experience.)
As you might expect, I took my breakthrough pain meds but they require time to take effect. They take effect fastest if you're calm and they can be cancelled out completely if you are too frantic. Therefore, I decided to meditate for the calmness because there's nothing calming about a stabbing pain in the top of the head on its own.
Pardon me for getting sidetracked here but I remember the days when I was just starting to learn about pain control. One source of frustration was the fact that texts told me to meditate but they gave no explanation of how it was done. Therefore, I came up with my own method. I had gotten some ideas from physical therapy where I was hooked up to a machine that measured supposedly measured stress. It made an annoying high pitched noise that eased as the machine decided I was calm. I could not talk or laugh or concentrate on anything so there was no question of chanting some sort of mantra.
I'm going to explain exactly how I meditate most successfully. Just remember that this is something you can try but I'm neither guru nor doctor. If it doesn't work for you, try something else. The first thing I do is put on some music. As unrelaxing as it might sound to some, Pearl Jam works great for me. If some grating form of Swedish death metal works for you, that's what you should use. Once the music is playing at the lowest comfortable volume, I recline in my most comfortable chair. I start breathing as evenly and effortlessly as I can.
The next step is to relax each major muscle group one at a time. I start at the feet and work my way up although this choice was essentially random. There tend to be a few false starts but I go back to that unruly spot and relax it again. You'll want to find a nice, neutral position for each joint because we use one muscle to bend and the opposing one to straighten. You don't want either working harder than it must. I use the mental image of my limbs being floppy like a jellyfish although I avoid any images of creepy tentacled things that might be less than relaxing.
Once I've gotten to this point, I concentrate on my breathing. It's a nice regular sound with nothing startling involved. Between feeling and hearing the effortless in and out of my breathing and the music which I've played too often to hear anything surprising, I slip into my trance. It may be the narcotics but I don't think so since I've done this many times without them, I get the sensation that I'm floating. I'm still touching the recliner at all the usual points but I don't feel my weight. As often as not, I drift off to short naps measured by small gaps in the music that I miss.
Try not to be disappointed but the pain doesn't simply disappear. As with the slight out of body sensation of floating, I feel the pain but it's as if the stabbing is in someone else's head. Try not to pay any attention to it because paying too much attention to anything will bring you out of the trance. If you are used to the sensation, it will not break the trance as easily. Maddie, my favorite grey kitty, uses my lap as a napping platform. Even when I'm not in a trance, I tend not to notice when she climbs into my lap. I'll even pet her for as long as my arms can take it and be soothed.
Meditation is like any other pain control method. It works best when you don't hinder the process. You have to let your mind drift. Trying to concentrate on even pleasant topics will break my trances. I love my wife and find her life vitally interesting but she tends to snap my trances every day when she comes home. Why don't I say anything? Meditation is like any other PCM. I do not want it to crowd out the rest of my life. Writing hurts too but I am a writer. Pain doesn't get to take away my identity.
When your priority is pain control, you need to stop whatever is causing the pain to flare up. If you're a baseball fan, that might mean taking breaks from watching your favorite team fail to score. When you really want to pay attention to the game, it might mean accepting some extra pain. I find that the idea of making choices actually helps me cope.
As you might expect, I took my breakthrough pain meds but they require time to take effect. They take effect fastest if you're calm and they can be cancelled out completely if you are too frantic. Therefore, I decided to meditate for the calmness because there's nothing calming about a stabbing pain in the top of the head on its own.
Pardon me for getting sidetracked here but I remember the days when I was just starting to learn about pain control. One source of frustration was the fact that texts told me to meditate but they gave no explanation of how it was done. Therefore, I came up with my own method. I had gotten some ideas from physical therapy where I was hooked up to a machine that measured supposedly measured stress. It made an annoying high pitched noise that eased as the machine decided I was calm. I could not talk or laugh or concentrate on anything so there was no question of chanting some sort of mantra.
I'm going to explain exactly how I meditate most successfully. Just remember that this is something you can try but I'm neither guru nor doctor. If it doesn't work for you, try something else. The first thing I do is put on some music. As unrelaxing as it might sound to some, Pearl Jam works great for me. If some grating form of Swedish death metal works for you, that's what you should use. Once the music is playing at the lowest comfortable volume, I recline in my most comfortable chair. I start breathing as evenly and effortlessly as I can.
The next step is to relax each major muscle group one at a time. I start at the feet and work my way up although this choice was essentially random. There tend to be a few false starts but I go back to that unruly spot and relax it again. You'll want to find a nice, neutral position for each joint because we use one muscle to bend and the opposing one to straighten. You don't want either working harder than it must. I use the mental image of my limbs being floppy like a jellyfish although I avoid any images of creepy tentacled things that might be less than relaxing.
Once I've gotten to this point, I concentrate on my breathing. It's a nice regular sound with nothing startling involved. Between feeling and hearing the effortless in and out of my breathing and the music which I've played too often to hear anything surprising, I slip into my trance. It may be the narcotics but I don't think so since I've done this many times without them, I get the sensation that I'm floating. I'm still touching the recliner at all the usual points but I don't feel my weight. As often as not, I drift off to short naps measured by small gaps in the music that I miss.
Try not to be disappointed but the pain doesn't simply disappear. As with the slight out of body sensation of floating, I feel the pain but it's as if the stabbing is in someone else's head. Try not to pay any attention to it because paying too much attention to anything will bring you out of the trance. If you are used to the sensation, it will not break the trance as easily. Maddie, my favorite grey kitty, uses my lap as a napping platform. Even when I'm not in a trance, I tend not to notice when she climbs into my lap. I'll even pet her for as long as my arms can take it and be soothed.
Meditation is like any other pain control method. It works best when you don't hinder the process. You have to let your mind drift. Trying to concentrate on even pleasant topics will break my trances. I love my wife and find her life vitally interesting but she tends to snap my trances every day when she comes home. Why don't I say anything? Meditation is like any other PCM. I do not want it to crowd out the rest of my life. Writing hurts too but I am a writer. Pain doesn't get to take away my identity.
When your priority is pain control, you need to stop whatever is causing the pain to flare up. If you're a baseball fan, that might mean taking breaks from watching your favorite team fail to score. When you really want to pay attention to the game, it might mean accepting some extra pain. I find that the idea of making choices actually helps me cope.
Reasons to Live - The Trinity of Survival
We're all programmed by society to think in certain ways. Those of us who grew up Christian, at least, tend to think in threes. I've heard that it relates to the Holy Trinity and that it's just how the brain works. Either reason is good enough for my immediate purposes. My trinity of survival seems easiest to think of as: faith, accomplishments and treats.
Reasons to Live - Part One
Like most people, I define life as something beyond breathing and having a heartbeat. Chronic pain and other symptoms can reduce life to something that exists with little or no fun. For some reason, companies expect you to continue paying them for things like electricity yet no one expects you to need fun. For a while, removal of bad things can be enough. I had a job that I hated yet it was getting sick that caused me to lose it. For a few weeks, I had nothing but broadcast TV (with rabbit ears) and books I'd read before to keep me busy.
On one hand, not going to that job was such a relief that I didn't care for a while. I had to call angry people on the phone and I didn't even know that talking on the phone and dealing with anger aggravated my symptoms. All I knew was that I could sit in my relatively comfy chair and have fond thoughts of what this pain was helping me escape. That's when the other side of the coin reared its ugly head. I felt guilty for finding a reason to be something other than miserable. I was near rock bottom and found a way to keep going yet this made me feel guilty.
Wanting to have a life and needing reasons to live is normal. Finding reasons to live while having every conventional reason to be miserable is a virtue. That singer/philosopher, Bruce Springsteen, once wrote that "it ain't no sin to be glad you're alive. It isn't always that easy to get there. Sometimes, you need a serious dose of those things.
One of my most important skills is a matter of counting my assets differently than others might. We're taught from the cradle to think of money as the most important asset if not the only true asset. When we're not thinking in terms of electronic money in a bank somewhere or actual green bills that you can hold in your hand and count, we're calculating the value of the property we own in dollars and cents. (If you're not American, substitute the currency of your choice.) I try not to use terms like right and wrong to describe such choices but let's look at the real value of the dollar bill.
You can't survive on a diet of dollar bills. The paper is not something you can digest plus the ink has no nutritional value and may or may not be poisonous. Few things are touched by as many unwashed hands as dollars so they would be miniature plagues in waiting if we didn't build up immunities to these germs. Even so, kids working fast food counters must be sure to wash their hands every time they take your money and go to wrap up your food.
I'll get to the point. Money is only useful for the goods or services we can obtain in exchange for it. It is not the root of all evil and there's nothing wrong with going the conventional route of getting a good job, being paid lots of money and exchanging that money for what we want or need. Most of us would go that route if we could. Those of us who are disabled and suffering from some sort of chronic illness cannot go that route. We must survive at least partially by alternate means. Generally, society is willing to help us gain the "three hots and a cot" to which most people believe we're entitled.
That line came from a prison movie which I don't remember well enough to name. The point was that prisoners were a drain on society and only got to live because some people are better than they are. There's an opposing viewpoint which states that the bare minimum we should expect from society should improve as society advances. While I approve of the second viewpoint, I don't expect many to share it.
Thus, I take the "three hots and a cot from society" and go from there. My goal is to spend as little money as possible even if the money comes from someone else. One way of doing this is within the auspices of adding to society. I want to contribute to society as a great fiction writer but that's almost impossible these days so I'll settle for spreading the word about symptom control. For that, I just need the computer and internet access that I already have.
On one hand, not going to that job was such a relief that I didn't care for a while. I had to call angry people on the phone and I didn't even know that talking on the phone and dealing with anger aggravated my symptoms. All I knew was that I could sit in my relatively comfy chair and have fond thoughts of what this pain was helping me escape. That's when the other side of the coin reared its ugly head. I felt guilty for finding a reason to be something other than miserable. I was near rock bottom and found a way to keep going yet this made me feel guilty.
Wanting to have a life and needing reasons to live is normal. Finding reasons to live while having every conventional reason to be miserable is a virtue. That singer/philosopher, Bruce Springsteen, once wrote that "it ain't no sin to be glad you're alive. It isn't always that easy to get there. Sometimes, you need a serious dose of those things.
One of my most important skills is a matter of counting my assets differently than others might. We're taught from the cradle to think of money as the most important asset if not the only true asset. When we're not thinking in terms of electronic money in a bank somewhere or actual green bills that you can hold in your hand and count, we're calculating the value of the property we own in dollars and cents. (If you're not American, substitute the currency of your choice.) I try not to use terms like right and wrong to describe such choices but let's look at the real value of the dollar bill.
You can't survive on a diet of dollar bills. The paper is not something you can digest plus the ink has no nutritional value and may or may not be poisonous. Few things are touched by as many unwashed hands as dollars so they would be miniature plagues in waiting if we didn't build up immunities to these germs. Even so, kids working fast food counters must be sure to wash their hands every time they take your money and go to wrap up your food.
I'll get to the point. Money is only useful for the goods or services we can obtain in exchange for it. It is not the root of all evil and there's nothing wrong with going the conventional route of getting a good job, being paid lots of money and exchanging that money for what we want or need. Most of us would go that route if we could. Those of us who are disabled and suffering from some sort of chronic illness cannot go that route. We must survive at least partially by alternate means. Generally, society is willing to help us gain the "three hots and a cot" to which most people believe we're entitled.
That line came from a prison movie which I don't remember well enough to name. The point was that prisoners were a drain on society and only got to live because some people are better than they are. There's an opposing viewpoint which states that the bare minimum we should expect from society should improve as society advances. While I approve of the second viewpoint, I don't expect many to share it.
Thus, I take the "three hots and a cot from society" and go from there. My goal is to spend as little money as possible even if the money comes from someone else. One way of doing this is within the auspices of adding to society. I want to contribute to society as a great fiction writer but that's almost impossible these days so I'll settle for spreading the word about symptom control. For that, I just need the computer and internet access that I already have.
Coping with Pain (and other symptoms)
Coping with pain and other disabling symptoms is a process. You can't expect the same thing to work every day. It's also not something you need to try alone. When you can't control the pain, you need to assemble your team and take advice. There are no bonus points for being tough or for being stubborn. Those are lessons that I learned the hard way. When I let myself tell the pain doc that my symptoms were out of control, he increased the dosage of my meds. I was not a chronic complainer so he knew something was up.
When he increased my dosage, I started sleeping at all hours of the day. My body was so starved for pain relief that it felt blissful. That dosage went from feeling blissful to feeling adequate to leaving me in agony. Unfortunately, all pain patients need to understand tolerance. Having an artificial pain blocking or numbing chemical in your body triggers a response known as homeostasis. Roughly defined, it means "keeping the body the same." When your body realizes that there's been an increase in artificial pain support, your body releases less natural pain support. It's called tolerance and there's nothing you can do about it. If you report pain levels honestly and follow your doctor's instructions, it will happen as slowly as possible.
Addiction and dependence are often confused by those of us who fear them. Dependence is the opposite side of tolerance. Since your body is making less of the chemicals you need to withstand pain, you become dependent on the artificial support. This is not addiction but only a natural reaction. In fact, no responsible doctor would ever take you off a long term medication all at once. You need to be weaned off these medications so that your body will produce enough natural chemicals again to keep you going.
Addiction happens when you misuse a prescription. If you take pain pills with the intent of going into a state of bliss whether or not you are in pain, that is addiction. As long as you follow your doctor's instructions, you cannot become addicted.
Pain pills are only one method of pain management from your doctor. I was having a miserable time with these electrical type pulses in my arms. I wanted to move them constantly and yet I learned that they would just get tired. Then I'd have the urge to move them along with the ache from them being tired. It felt as if I'd been lifting weights or something.
One day, I happened to notice an ad for a drug designed to treat Restless Leg Syndrome. The symptoms were awfully (and I mean awfully) familiar but it was my arms. When I brought this up to my doctor, he prescribed the same drug to treat my Restless Arm Syndrome. The symptom has gotten much better since then. When I continued to have unexplained pain all over, I suggested that a fibromyalgia drug might work the same way the RLS drug helped my RAS. The pain doc went down a checklist and decided that it was likely fibro. (If it walks like a duck and quacks like a duck...)
That brings me to my current pain management regimen. I have a regularly dosed pain medicine along with breakthrough meds. The RLS drug and the fibro drug worked wonders which left me with my arthritis symptoms. Once again, they decided that having the symptoms made trying the medication a good idea. I'm happy to say that it works wonderfully.
I've reached a funny point in my pain management. As long as I don't do anything except meditate and we don't have any rain or thunderstorms, I feel my pain is under control. As long as I don't have a life, I feel pretty okay. In my first regular entry, I'm going to get to why that just plain sucks.
When he increased my dosage, I started sleeping at all hours of the day. My body was so starved for pain relief that it felt blissful. That dosage went from feeling blissful to feeling adequate to leaving me in agony. Unfortunately, all pain patients need to understand tolerance. Having an artificial pain blocking or numbing chemical in your body triggers a response known as homeostasis. Roughly defined, it means "keeping the body the same." When your body realizes that there's been an increase in artificial pain support, your body releases less natural pain support. It's called tolerance and there's nothing you can do about it. If you report pain levels honestly and follow your doctor's instructions, it will happen as slowly as possible.
Addiction and dependence are often confused by those of us who fear them. Dependence is the opposite side of tolerance. Since your body is making less of the chemicals you need to withstand pain, you become dependent on the artificial support. This is not addiction but only a natural reaction. In fact, no responsible doctor would ever take you off a long term medication all at once. You need to be weaned off these medications so that your body will produce enough natural chemicals again to keep you going.
Addiction happens when you misuse a prescription. If you take pain pills with the intent of going into a state of bliss whether or not you are in pain, that is addiction. As long as you follow your doctor's instructions, you cannot become addicted.
Pain pills are only one method of pain management from your doctor. I was having a miserable time with these electrical type pulses in my arms. I wanted to move them constantly and yet I learned that they would just get tired. Then I'd have the urge to move them along with the ache from them being tired. It felt as if I'd been lifting weights or something.
One day, I happened to notice an ad for a drug designed to treat Restless Leg Syndrome. The symptoms were awfully (and I mean awfully) familiar but it was my arms. When I brought this up to my doctor, he prescribed the same drug to treat my Restless Arm Syndrome. The symptom has gotten much better since then. When I continued to have unexplained pain all over, I suggested that a fibromyalgia drug might work the same way the RLS drug helped my RAS. The pain doc went down a checklist and decided that it was likely fibro. (If it walks like a duck and quacks like a duck...)
That brings me to my current pain management regimen. I have a regularly dosed pain medicine along with breakthrough meds. The RLS drug and the fibro drug worked wonders which left me with my arthritis symptoms. Once again, they decided that having the symptoms made trying the medication a good idea. I'm happy to say that it works wonderfully.
I've reached a funny point in my pain management. As long as I don't do anything except meditate and we don't have any rain or thunderstorms, I feel my pain is under control. As long as I don't have a life, I feel pretty okay. In my first regular entry, I'm going to get to why that just plain sucks.
How Doctors Can Help (and how they can't)
When I first realized that this Arnold Chiari Malformation thing was going to knock me on my behind, I had a poor concept of modern medicine. On one hand, I believed that doctors could give you a pill and solve things like pain. On the other hand, I believed that pain medication was inherently dangerous. My early doctors tried to help me and I resisted the help without realizing what I was doing.
My big thing was the fear of being awake all night alone and in horrible pain. Therefore, I decided that bedtime was the only time when I would take the medicine. When I started off, 30 day pain prescriptions would last me three or four months depending on how much was prescribed per day. I knew I was in for a long haul and I didn't trust my early doctors to get me through it.
The first important change came when I changed primary care physicians. From here on, I will be calling this doctor who has been so central to my life my PCP or the new PCP. First of all, I have to tell you that this PCP is a woman. I am one of the most physically shy people you will ever meet but my PCP has never once made me feel uncomfortable. She happens to combine two qualities I need in a doctor. She is tough but uses a soft delivery that disguises the toughness. The thing that makes her so tough is that she is smart and I know that she is exceptionally devoted to her patients. If she tells me to do something, it's for a good reason.
My PCP prescribed meds differently from the old one and the original neurosurgeon. The pain pills were not "as needed" because she knew I took that too literally. As needed seemed to translate in my head as "take when you think your heart might explode from the pain." Instead, her instructions read something more like "take once every four hours up to a maximum of four doses a day."
Another thing that makes my PCP tough is that she shows no fear. I was summoned into her office once because she thought she had given me more refills than she had. I thought I was being summoned to be accused of being an addict which happens to be a personal phobia. (I have a phobia about getting addicted and another about being accused of addiction.) She actually wanted to clear up what she knew was someone's honest mistake and to reset things so we both knew exactly where we stood. I learned a lot from her ability to let me express anger without letting it seem to touch her.
My PCP decided that she had reached the end of her knowledge of pain control meds and referred me to the pain doc. The pain doc is a pseudonym that I use for any number of doctors who belong to a particular practice. Despite some early false starts, my pain doc and I meshed quite well. The pain doc restored my holistic view of pain control. I was given "as needed" medication along with meds meant to be taken regularly. The pain doc praised my outlook that pain control is like a machine with many knobs. Turning two or three knobs to the right spot is better than attempting to dial one up all the way.
There are also some truisms that got "official" medical approval. Mental state is a big part of pain control. You will hurt more doing unpleasant tasks than during pleasant activities. If it hurts, you should stop it although there are many exceptions to that rule. Stress increases pain so measures taken to reduce stress can reduce pain. The ability to meditate is a powerful stress reducer but anti-anxiety pills are another way to turn the stress knob down.
Finally, my neurosurgeon has done all he can for me at the moment. He managed to save me from likely death by undoing the mistakes of the previous neurosurgeon. He also did an amazing job stopping the progression of the symptoms we believe are directly related to Chiari. When medical science progresses far enough, I expect contact from a nurse at his practice to let me know.
My big thing was the fear of being awake all night alone and in horrible pain. Therefore, I decided that bedtime was the only time when I would take the medicine. When I started off, 30 day pain prescriptions would last me three or four months depending on how much was prescribed per day. I knew I was in for a long haul and I didn't trust my early doctors to get me through it.
The first important change came when I changed primary care physicians. From here on, I will be calling this doctor who has been so central to my life my PCP or the new PCP. First of all, I have to tell you that this PCP is a woman. I am one of the most physically shy people you will ever meet but my PCP has never once made me feel uncomfortable. She happens to combine two qualities I need in a doctor. She is tough but uses a soft delivery that disguises the toughness. The thing that makes her so tough is that she is smart and I know that she is exceptionally devoted to her patients. If she tells me to do something, it's for a good reason.
My PCP prescribed meds differently from the old one and the original neurosurgeon. The pain pills were not "as needed" because she knew I took that too literally. As needed seemed to translate in my head as "take when you think your heart might explode from the pain." Instead, her instructions read something more like "take once every four hours up to a maximum of four doses a day."
Another thing that makes my PCP tough is that she shows no fear. I was summoned into her office once because she thought she had given me more refills than she had. I thought I was being summoned to be accused of being an addict which happens to be a personal phobia. (I have a phobia about getting addicted and another about being accused of addiction.) She actually wanted to clear up what she knew was someone's honest mistake and to reset things so we both knew exactly where we stood. I learned a lot from her ability to let me express anger without letting it seem to touch her.
My PCP decided that she had reached the end of her knowledge of pain control meds and referred me to the pain doc. The pain doc is a pseudonym that I use for any number of doctors who belong to a particular practice. Despite some early false starts, my pain doc and I meshed quite well. The pain doc restored my holistic view of pain control. I was given "as needed" medication along with meds meant to be taken regularly. The pain doc praised my outlook that pain control is like a machine with many knobs. Turning two or three knobs to the right spot is better than attempting to dial one up all the way.
There are also some truisms that got "official" medical approval. Mental state is a big part of pain control. You will hurt more doing unpleasant tasks than during pleasant activities. If it hurts, you should stop it although there are many exceptions to that rule. Stress increases pain so measures taken to reduce stress can reduce pain. The ability to meditate is a powerful stress reducer but anti-anxiety pills are another way to turn the stress knob down.
Finally, my neurosurgeon has done all he can for me at the moment. He managed to save me from likely death by undoing the mistakes of the previous neurosurgeon. He also did an amazing job stopping the progression of the symptoms we believe are directly related to Chiari. When medical science progresses far enough, I expect contact from a nurse at his practice to let me know.
How It All Started
Like most people with a chronic illness, I can't really tell you the day it all started. I can't tell you that I was sick for a month and then noticed it. My initial symptom was absurdly vague. My neck felt sore like I hadn't gotten enough sleep but I was certain a few days of rest would make everything better. I toughed it out to the end of the week and did nothing during my "weekend" sure that it would be just fine.
It wasn't any better but I couldn't justify an unpaid day off from work. My company considered it to be an offense to call out if you didn't have any paid sick time "in your bank." After another nonspecific period of time, I realized that I was getting worse. The neck ache was more painful and I was getting headaches. Since my benefits took effect shortly before this started, I bit the bullet and re-established my relationship with my doctor.
As usual, I left my doctor's office feeling offended but he decided that I needed some time off for work. He wrote doctor's orders specifying that I could not work with these symptoms for the maximum amount of time my company would accept per note: two weeks. I didn't get any better during those two weeks off and the added stress of not getting paid didn't help at all. Melissa and I tried everything we could think of including cold packs, moist heat from towels and dry heat from this stuff you could stick in the microwave and then put it on your neck. It was as hot as it would get when it came out of the microwave. Sometimes, I would get temporary relief from these measures but I didn't other times.
When my two week note ran out, I panicked because my doctor went on vacation. I needed to have a doctor's note or I wouldn't have a status and could get fired. Therefore, I went back to work for two days. The first day seemed unbearable yet I made it through taking maximum doses of my doctor's narcotic prescription and my iron will. On the second day, I collapsed in the elevator as my big boss was walking in. He ordered me to go home despite the fact that I had no way of getting home except by driving. I went to the ER and got a note for the rest of my doctor's vacation. The ER doctor told me that this was something that had to be taken seriously.
I was deeply offended by the "fact" that no one but Melissa and me seemed to be taking this seriously. My doctor had ordered an MRI which I got but nothing seemed to come of it. It turns out that my doctor was on vacation but his staff wasn't. He had ordered his staff to get me the first available appointment with a neurosurgeon because he knew what a stubborn cuss I was so my complaints were serious.
Melissa looked through her medical books that she kept as a hobby but the symptoms didn't fit anything. As a spina bifida patient with hydrocephalus, I was concerned that my shunt needed to be replaced. We were able to rule that out for the moment along with a brain tumor because both included projectile vomiting as a symptom. With all the things I've experienced, I'm happy to note that I have no first hand knowledge of projectile vomit.
The neurosurgeon had a diagnosis waiting for me when I walked into his office. It was an Arnold Chiari Malformation and the only treatment for it was surgery. He stressed that surgery was not a cure but only a treatment. The "book" said that either 70% or 90% of post-op patients would retain some symptoms. Without surgery, I could die but he told me to go home and think about it. After a few days, I realized that I couldn't figure out what I was supposed to be thinking about. It was surgery or this strange hell that could culminate in a mysterious death.
This, of course, is not meant to be the story of why I'm mad at certain doctors, etc. I would like you to note that you should not take a doctor's word for it when he says that there are no specialists for your condition. I might have saved myself a lifetime of pain if I had done the research. There were significant obstacles including the fact that my computer lacked internet access in those days but I should have found a backbone somewhere.
It took more than a month to get an OR for my surgery and my surgeon certified me as temporarily completely disabled. Thus, Melissa and I had time to work on the symptoms. For reasons beyond the scope of this particular work, my symptoms changed from day to day if not hour to hour. That was the bad news. The good news was that something almost always made things bearable. If I were in pain, either heat or cold plus good narcotics made things bearable. My job had made me a little bit of an adrenaline junkie. Withdrawal from that made the pain worse, made me dizzy or gave me the twitches with which I'm so familiar. I had to learn to relax but music helped a lot.
Boredom became a serious problem for me. If I did nothing, I felt better physically but I ran into boredom and the blues. Being able to purchase a new computer shortly before my surgery helped a lot. Computer games gave me something to do in short sessions. Early on, the biggest problem was the lesson I had yet to learn. I had to accept very strict limitations on what I could and could not do. If I had to sit down and remain still with a cold pack to keep the symptoms bearable, that's what I had to do.
My first surgery made me feel worse for a while, of course. Significant parts of my vertabrae had been removed. It boggled my mind to realize that so much pain could come from a few milimeters shaved off the bones of my neck. The good news was that this period of feeling worse didn't last long. Between my coping strategies and the fact that I had been in so much pain made me feel great by comparison. Thus, I learned about guilt and its effect on me.
I was told that my recovery would take between six weeks and six months. Others in my family were told it could take up to two years for a full recovery. I felt well enough for very limited daily activities but anything resembling work left me helpless and twitching. I started to believe that it was all psychological just as I did when the tired neck feeling started. I hated my job so I was making myself sick to avoid it or so the self doubt went.
When my surgeon suggested that it was all in my head yet my shrink told me it wasn't, I went looking for that nonexistent expert. After months on insurance fighting, that expert told me what my previous surgeon did to make me even worse. It was all in my head for sure. The damage done by the first surgeon was contained to my head and neck.
During the first summer after my surgery, I discovered online journalling. Therefore, I have a pretty good memory for how things felt so much better for a while. My symptoms grew in variety and intensity until my second surgery gave me a second "recovery" period. My second surgeon never accused me of being crazy. He tried various tests until he discovered a problem that couldn't be fixed safely.
This new journal will be about coping with the fact that I have been disabled since I was 25 for a total of twelve years now. I will remain disabled for the rest of my life unless a medical miracle takes place. Even if the new surgeon manages to fix the problem that cannot be fixed now, all these years of being sick mean that I will never be able to work again at least in the conventional sense. The best I can hope for is a relatively comfortable state of disability.
It wasn't any better but I couldn't justify an unpaid day off from work. My company considered it to be an offense to call out if you didn't have any paid sick time "in your bank." After another nonspecific period of time, I realized that I was getting worse. The neck ache was more painful and I was getting headaches. Since my benefits took effect shortly before this started, I bit the bullet and re-established my relationship with my doctor.
As usual, I left my doctor's office feeling offended but he decided that I needed some time off for work. He wrote doctor's orders specifying that I could not work with these symptoms for the maximum amount of time my company would accept per note: two weeks. I didn't get any better during those two weeks off and the added stress of not getting paid didn't help at all. Melissa and I tried everything we could think of including cold packs, moist heat from towels and dry heat from this stuff you could stick in the microwave and then put it on your neck. It was as hot as it would get when it came out of the microwave. Sometimes, I would get temporary relief from these measures but I didn't other times.
When my two week note ran out, I panicked because my doctor went on vacation. I needed to have a doctor's note or I wouldn't have a status and could get fired. Therefore, I went back to work for two days. The first day seemed unbearable yet I made it through taking maximum doses of my doctor's narcotic prescription and my iron will. On the second day, I collapsed in the elevator as my big boss was walking in. He ordered me to go home despite the fact that I had no way of getting home except by driving. I went to the ER and got a note for the rest of my doctor's vacation. The ER doctor told me that this was something that had to be taken seriously.
I was deeply offended by the "fact" that no one but Melissa and me seemed to be taking this seriously. My doctor had ordered an MRI which I got but nothing seemed to come of it. It turns out that my doctor was on vacation but his staff wasn't. He had ordered his staff to get me the first available appointment with a neurosurgeon because he knew what a stubborn cuss I was so my complaints were serious.
Melissa looked through her medical books that she kept as a hobby but the symptoms didn't fit anything. As a spina bifida patient with hydrocephalus, I was concerned that my shunt needed to be replaced. We were able to rule that out for the moment along with a brain tumor because both included projectile vomiting as a symptom. With all the things I've experienced, I'm happy to note that I have no first hand knowledge of projectile vomit.
The neurosurgeon had a diagnosis waiting for me when I walked into his office. It was an Arnold Chiari Malformation and the only treatment for it was surgery. He stressed that surgery was not a cure but only a treatment. The "book" said that either 70% or 90% of post-op patients would retain some symptoms. Without surgery, I could die but he told me to go home and think about it. After a few days, I realized that I couldn't figure out what I was supposed to be thinking about. It was surgery or this strange hell that could culminate in a mysterious death.
This, of course, is not meant to be the story of why I'm mad at certain doctors, etc. I would like you to note that you should not take a doctor's word for it when he says that there are no specialists for your condition. I might have saved myself a lifetime of pain if I had done the research. There were significant obstacles including the fact that my computer lacked internet access in those days but I should have found a backbone somewhere.
It took more than a month to get an OR for my surgery and my surgeon certified me as temporarily completely disabled. Thus, Melissa and I had time to work on the symptoms. For reasons beyond the scope of this particular work, my symptoms changed from day to day if not hour to hour. That was the bad news. The good news was that something almost always made things bearable. If I were in pain, either heat or cold plus good narcotics made things bearable. My job had made me a little bit of an adrenaline junkie. Withdrawal from that made the pain worse, made me dizzy or gave me the twitches with which I'm so familiar. I had to learn to relax but music helped a lot.
Boredom became a serious problem for me. If I did nothing, I felt better physically but I ran into boredom and the blues. Being able to purchase a new computer shortly before my surgery helped a lot. Computer games gave me something to do in short sessions. Early on, the biggest problem was the lesson I had yet to learn. I had to accept very strict limitations on what I could and could not do. If I had to sit down and remain still with a cold pack to keep the symptoms bearable, that's what I had to do.
My first surgery made me feel worse for a while, of course. Significant parts of my vertabrae had been removed. It boggled my mind to realize that so much pain could come from a few milimeters shaved off the bones of my neck. The good news was that this period of feeling worse didn't last long. Between my coping strategies and the fact that I had been in so much pain made me feel great by comparison. Thus, I learned about guilt and its effect on me.
I was told that my recovery would take between six weeks and six months. Others in my family were told it could take up to two years for a full recovery. I felt well enough for very limited daily activities but anything resembling work left me helpless and twitching. I started to believe that it was all psychological just as I did when the tired neck feeling started. I hated my job so I was making myself sick to avoid it or so the self doubt went.
When my surgeon suggested that it was all in my head yet my shrink told me it wasn't, I went looking for that nonexistent expert. After months on insurance fighting, that expert told me what my previous surgeon did to make me even worse. It was all in my head for sure. The damage done by the first surgeon was contained to my head and neck.
During the first summer after my surgery, I discovered online journalling. Therefore, I have a pretty good memory for how things felt so much better for a while. My symptoms grew in variety and intensity until my second surgery gave me a second "recovery" period. My second surgeon never accused me of being crazy. He tried various tests until he discovered a problem that couldn't be fixed safely.
This new journal will be about coping with the fact that I have been disabled since I was 25 for a total of twelve years now. I will remain disabled for the rest of my life unless a medical miracle takes place. Even if the new surgeon manages to fix the problem that cannot be fixed now, all these years of being sick mean that I will never be able to work again at least in the conventional sense. The best I can hope for is a relatively comfortable state of disability.
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