The highest quality liquor store in my area doesn't just sell alcohol. They have several events each month including tastings where you can pay an average of ten dollars to sample all sorts of unusual beers or wines. I look forward to the day each month when the events schedule hits my inbox. Melissa and I attend every tasting we can. On the surface of it, you get what amounts to "all you can drink" beer for an affordable price. That's only one of the reasons why we go. After all, beer does help my meds work better but too much would kill my liver even without my pain pills.
Why take the risk? It isn't just for the pleasant numbness despite how I may talk. First of all, I have very expensive taste in beer especially relative to what most of my fellow Americans call beer. To the tasting crowd, that stuff is "beer" at best. What we drink is an altogether different beast with exotic flavors, textures and aromas. The practical effect of this comes in a few parts. First of all, I like going to the tastings to get an idea of what I might want to purchase on my own. A six-pack of good beer will last me at least a month. I don't treat beer like soda or water. A glass of it is something to savor over the course of an evening. Without the chance to taste these beers at an affordable price, I'd never have the guts to splurge on any.
I do not believe that I could swill enough good beer to get drunk the way I swilled "beer" back in college. The tastes are so strong that it would be unpleasant to overindulge. These beers are like those gourmet foods I see on TV that come on plates the size of drink coasters for the same reason. You aren't meant to fill up on those fine meals. That's what pizza and cheeseburgers are for. Likewise, fine beer is not refreshing. It isn't meant to quench a thirst and it might be one of the last things you'd want to drink on a hot day.
Therefore, I don't have to worry about killing my liver the same way I would at a college party. In any case, the beer isn't the only attraction for me. I'm sure I've mentioned that I have serious problems dealing with crowds. Drinking beer makes it tolerable and even pleasant to be around crowds. The tastings are my one real chance to get out of the house for a real social event. I can be my old self chatting with total strangers instead of tripping over words to close friends. Better yet, these people cease to be strangers after we meet at a few tastings.
These are casual friendships without the burden of knowing deep dark secrets about each other. We talk mostly about beer. What sorts of beer do we have in common? I don't like IPAs (India Pale Ale) because of the bitter and hoppy taste. Therefore, I don't want IPA drinkers to have my opinion color their enjoyment of what might be a fine IPA. On the other hand, someone who loves Belgian Abbey ale, English Old Ale and other dark/relatively sweet beers is someone whose recommendation I will trust.
I come home from these events feeling relaxed. Often, I experience brief periods of not feeling pain. I'm not a doctor so I can't tell you what the risks involved are. I just know that my doctors trust me not to make myself sicker. It's a good thing because I'd regret missing these events.
Monday, April 30, 2012
Thursday, April 26, 2012
Getting Over It
In my previous post, I wrote as if there were days when I am pain free which would be a big mistake for me to make. Like many of you, I hurt every day. To some degree or another, I hurt every minute of every day. It's not something I can just shrug off. God knows I've tried. As a kid, I learned my fear of being a hypochondriac. Since I had a good idea that any given day at school would be miserable, I was afraid that it was a psychosomatic illness. My self test involved the curative powers of good music. I turned on my radio and tried to dance and was only satisfied when the effort made me feel worse. Then I knew I was really sick and I wasn't conning anyone.
If you can't find the logical flaws in that process, I'll help. I suffered a long major depression and depression is a real illness with real physical symptoms. On the other hand, it doesn't provide evidence like a fever or something else useful. I should have realized that I would have known if I were conning someone. That was another lovely symptom of my mental state. I was so inherently bad and lazy that I had to doubt what my body was telling me. I needed to toughen up. I had no idea what real pain was.
Those sort of doubts persist to this day in milder forms but they exist. Sometime in March, I took a serious turn for the worse where pain levels were concerned. For once, I couldn't link the decline to weather, mood or activity. I just hurt to the point where I couldn't find adequate descriptions. When the decline reversed almost as quickly as it began, I was delighted and tried to jump back into life. My failure to do so at what I considered to be an adequate pace made me doubt myself. Am I someone who is committed to writing or just another impostor?
For some reason, I expected to be able to just get up and dust myself off after a solid month of agony. The fact was that I needed to rest physically and mentally before testing the old engine again. When I tried too soon, I was scared at the first sign of failure. I just wanted to huddle under a blanket until it stopped hurting even though I knew it wouldn't stop completely.
Really! What do I expect from myself? This wasn't something that I could just shake off like I stubbed my toe. The fact is that those of us suffering from chronic pain do have increased pain tolerance and remarkable resilience to come back day after day to face our baseline illnesses. People don't just take looks over the edge of the Abyss and get back to daily life right away. Some never make it back. I was struggling with the idea that plans I've revealed here and others I may mention when I can would be ruined by impossible pain levels.
I'll tell you what I will do. I'll take a maximum dose of breakthrough pain meds, consider a dose of the anti-anxiety pill and enjoy the fact that I'm watching bands play live. As far as daily life goes, I'll continue to write here when I can. I've seen some evidence that I might have a regular reader or two. That means a lot to me although I'll continue to write this either way. I don't know exactly how I'll help but I'll muddle through and find a way.
If you can't find the logical flaws in that process, I'll help. I suffered a long major depression and depression is a real illness with real physical symptoms. On the other hand, it doesn't provide evidence like a fever or something else useful. I should have realized that I would have known if I were conning someone. That was another lovely symptom of my mental state. I was so inherently bad and lazy that I had to doubt what my body was telling me. I needed to toughen up. I had no idea what real pain was.
Those sort of doubts persist to this day in milder forms but they exist. Sometime in March, I took a serious turn for the worse where pain levels were concerned. For once, I couldn't link the decline to weather, mood or activity. I just hurt to the point where I couldn't find adequate descriptions. When the decline reversed almost as quickly as it began, I was delighted and tried to jump back into life. My failure to do so at what I considered to be an adequate pace made me doubt myself. Am I someone who is committed to writing or just another impostor?
For some reason, I expected to be able to just get up and dust myself off after a solid month of agony. The fact was that I needed to rest physically and mentally before testing the old engine again. When I tried too soon, I was scared at the first sign of failure. I just wanted to huddle under a blanket until it stopped hurting even though I knew it wouldn't stop completely.
Really! What do I expect from myself? This wasn't something that I could just shake off like I stubbed my toe. The fact is that those of us suffering from chronic pain do have increased pain tolerance and remarkable resilience to come back day after day to face our baseline illnesses. People don't just take looks over the edge of the Abyss and get back to daily life right away. Some never make it back. I was struggling with the idea that plans I've revealed here and others I may mention when I can would be ruined by impossible pain levels.
I'll tell you what I will do. I'll take a maximum dose of breakthrough pain meds, consider a dose of the anti-anxiety pill and enjoy the fact that I'm watching bands play live. As far as daily life goes, I'll continue to write here when I can. I've seen some evidence that I might have a regular reader or two. That means a lot to me although I'll continue to write this either way. I don't know exactly how I'll help but I'll muddle through and find a way.
Wednesday, April 25, 2012
Three Kinds of Days
When I started writing a new blog, I had big intentions. After a few quick successes, I had even bigger intentions. Now, I'm bogged down and for a reason you might find funny with the right sense of gallows humor. I have three basic types of days in my life right now. The first is the day when I'm overwhelmed by pain and can't write. The second is the day when I'm recovering from pain days, want to write but I'm too damned tired. Finally, we have the few days when I'm too busy in the literal sense to write.
On pain days, I want to write but I'm so overwhelmed with pain that I would just babble over and over that I hurt. On the tired days, I have plenty of time but I can't find the motivation. Besides, it feels as if one can only write so many times about how it hurts and I'm tired. On the busy days, I want to tell the world that I've accomplished things but it doesn't feel right. Should I give up my big secret about going out and having a good time when I'm able?
Yes, some of what I wrote is contradictory but so is life. Usually, I try to rest and meditate to get through pain but that's boring. Sometimes, the answer is to do something that occupies the mind and lets my meds take effect. The same thing goes with being too tired. The pain gets me down and it manifests as the aches and pains of being too tired to do anything. I have places in my private journal where I tried to call my fatigue's bluff and I fell asleep mid-sentence. On the busy days, I have little or no time left to write but it would give me something more interesting to write than, "I hurt."
Therefore, I should ecstatic to tell you all about my adventures when I have them. Of course, that makes me wonder if that's what this blog is supposed to be about. Am I helping anyone to cope when I tell them how lucky I am? I have doctors and a wife who trust me to drink beer when I feel like it and can afford it. The joke is that those limiting factors right there are enough. With our income and the way I feel, I sure can't drink all that much.
I suppose my next entry should be telling you about the event I look forward to almost every month. That would be the beer tasting at the best liquor store in the area. I'll explain it in an entry of its own but it's not mostly about the drinking.
On pain days, I want to write but I'm so overwhelmed with pain that I would just babble over and over that I hurt. On the tired days, I have plenty of time but I can't find the motivation. Besides, it feels as if one can only write so many times about how it hurts and I'm tired. On the busy days, I want to tell the world that I've accomplished things but it doesn't feel right. Should I give up my big secret about going out and having a good time when I'm able?
Yes, some of what I wrote is contradictory but so is life. Usually, I try to rest and meditate to get through pain but that's boring. Sometimes, the answer is to do something that occupies the mind and lets my meds take effect. The same thing goes with being too tired. The pain gets me down and it manifests as the aches and pains of being too tired to do anything. I have places in my private journal where I tried to call my fatigue's bluff and I fell asleep mid-sentence. On the busy days, I have little or no time left to write but it would give me something more interesting to write than, "I hurt."
Therefore, I should ecstatic to tell you all about my adventures when I have them. Of course, that makes me wonder if that's what this blog is supposed to be about. Am I helping anyone to cope when I tell them how lucky I am? I have doctors and a wife who trust me to drink beer when I feel like it and can afford it. The joke is that those limiting factors right there are enough. With our income and the way I feel, I sure can't drink all that much.
I suppose my next entry should be telling you about the event I look forward to almost every month. That would be the beer tasting at the best liquor store in the area. I'll explain it in an entry of its own but it's not mostly about the drinking.
Monday, April 9, 2012
Holy Meltdown, Batman! (Part Two)
My in-laws were over here celebrating Easter with us. In other words, some of my favorite people were here cooking some of my favorite foods (because they know I love ham with all the "fixin's") and giving me candy. This is not your classic stressful situation unless you're a Chiarian with my specific symptoms and you're already weakened by the stress described in Part One. Even if you happen to be me, you probably wouldn't expect to melt down as badly as I did.
Honestly, I was doing better but preparing an elaborate meal requires a certain amount of noise. That's a given for which I thought I was prepared. There's a tradeoff to having the noise taking place behind me or the noise and movement where I can take them in visually as well. In restaurants, I try to face the sources of noise but my home is set up to keep the back of my chair in the way to protect me. I took a soft fall coming down the stairs into the situation.
Before I could finish the meal, I was twitching so badly that I could hardly get the fork into my mouth safely. The top of my head might as well have been dipped in acid. I was trying not to yell out in pain or, worse, flinch in direct reaction to each unintentional trigger. Sometimes, I don't want people to know what they are doing "wrong" because there's nothing wrong about it. There's also no better way of doing it.
I don't remember specific triggers from yesterday now anyway. It might just be better that way. I do believe that the human mind is not capable of remembering pain as specifically as other things because it would be that much harder to get up and face the day. I do remember that I started off with what I considered to be a good Easter haul before dinner. After dinner, things became a blur of pain.
All I could do was close my eyes and try to meditate. I hope I mumbled some pleasant sounding things along with the outcries of pain. I know that I was utterly exhausted from not sleeping and from being drained. Melissa helped me quite a bit. I remember her telling me that some sort of weather front was moving through. That's one of her roles. My faith in her reminds me of my faith that "this too shall pass." She made me tea and I tried to point out that it was tea from Judy, my mother-in-law, that would be most helpful.
It took me a while to remember how it all passed. I was afraid that I went so deep into meditation that I hadn't noticed them leaving. They went to go have some fun at the local casino forgetting that it was Easter. By the time Melissa returned alone, the meltdown had receded into a dull roar. I had slept some with a cat on my lap who seemed to know that I needed the calm.
Hopefully, I achieved minimal politeness status but it's so hard to tell. In any case, I wanted to post for you guys out there in similar situations. Even pleasant things can trigger pain and symptoms. You can't give up all the pleasant things out of fear so just have faith. The worst of it shall pass. For those of you who know people like me, please remember that it isn't your fault. We could avoid you if we wanted to and we don't. The worst of it is better than the worst of the isolation.
Honestly, I was doing better but preparing an elaborate meal requires a certain amount of noise. That's a given for which I thought I was prepared. There's a tradeoff to having the noise taking place behind me or the noise and movement where I can take them in visually as well. In restaurants, I try to face the sources of noise but my home is set up to keep the back of my chair in the way to protect me. I took a soft fall coming down the stairs into the situation.
Before I could finish the meal, I was twitching so badly that I could hardly get the fork into my mouth safely. The top of my head might as well have been dipped in acid. I was trying not to yell out in pain or, worse, flinch in direct reaction to each unintentional trigger. Sometimes, I don't want people to know what they are doing "wrong" because there's nothing wrong about it. There's also no better way of doing it.
I don't remember specific triggers from yesterday now anyway. It might just be better that way. I do believe that the human mind is not capable of remembering pain as specifically as other things because it would be that much harder to get up and face the day. I do remember that I started off with what I considered to be a good Easter haul before dinner. After dinner, things became a blur of pain.
All I could do was close my eyes and try to meditate. I hope I mumbled some pleasant sounding things along with the outcries of pain. I know that I was utterly exhausted from not sleeping and from being drained. Melissa helped me quite a bit. I remember her telling me that some sort of weather front was moving through. That's one of her roles. My faith in her reminds me of my faith that "this too shall pass." She made me tea and I tried to point out that it was tea from Judy, my mother-in-law, that would be most helpful.
It took me a while to remember how it all passed. I was afraid that I went so deep into meditation that I hadn't noticed them leaving. They went to go have some fun at the local casino forgetting that it was Easter. By the time Melissa returned alone, the meltdown had receded into a dull roar. I had slept some with a cat on my lap who seemed to know that I needed the calm.
Hopefully, I achieved minimal politeness status but it's so hard to tell. In any case, I wanted to post for you guys out there in similar situations. Even pleasant things can trigger pain and symptoms. You can't give up all the pleasant things out of fear so just have faith. The worst of it shall pass. For those of you who know people like me, please remember that it isn't your fault. We could avoid you if we wanted to and we don't. The worst of it is better than the worst of the isolation.
Holy Meltdown, Batman! (Part One)
Today is pain doc day and I'm writing about yesterday's meltdown. That's already a bad sign to an epic degree. Pain doc day tends to be what sets me off and causes me to have times like last night. It was a full symptom explosion from full body pain through debilatating twitches to some relatively minor aphasia. It all started when I reached the point of not sleeping when I started to feel good.
My in-laws are in town and they are among my favorite people in existence. The problem is that my symptoms could fool you very easily. My sister-in-law is as opinionated as I am about most things. Part of being as opinionated as I am is believing that no one else ever considers their positions carefully enough when they don't agree with me. It's worse than rooting for the wrong sports team when that person says or does something that violates my strongest held values. It's also worse when my temper has been triggered already.
In this case, the trigger ties right into a subject of this blog: "frivolous" lawsuits. There is a belief in this nation that we are plagued by hordes of people filing useless lawsuits and taking money from honest businesses. Like most big lies, there is a small bit of truth in it to attract the belief of honest people like my sister-in-law. The classic "frivolous lawsuit" story tends to involve the case of a woman who spilled hot fast food coffee on herself. She sued the company and won big bucks in the jury trial. Factually, that's correct as far as it goes.
What really happened is that she asked the company to cover her medical bills which included surgery. When they refused, she hired a lawyer and learned that the company kept its coffee unreasonably hot. (The cup may also have been defective but I can't trust my memory there.) They kept refusing to settle out of court despite the disabling injury until a jury of her peers imposed punitive damages in the millions. Then the company appealed and villified the woman in the far less open world of appeals. Her award was reduced to the point of not even covering her medical bills but she's known as the woman who made millions by being stupid enough to spill coffee on herself.
Stories like that are misused to protect the wrong doctors. Once again, there is the factual story that says most doctors pay way too much for malpractice insurance. That is true and it is doubly the fault of the insurance companies. First of all, they blame these so called frivolous lawsuits for the high cost of insuring doctors against malpractice. They claim that these few high awards are to blame for the high costs by using the "Donald Trump fallacy." Whenever Donald Trump enters a room, the average income of everyone else in it rises considerably. Replace Trump with Bill Gates if you prefer but it's still the same point.
The high cost of insurance premiums is due to two factors both controlled by the companies, themselves. First of all, they had a premium war in the early 90s during the Clintom boom. In order to attract the least risky doctors, they lowered rates to below cost for those risk categories. (John, that doesn't make any sense! Tell me about it.) They turned a profit by investing the premiums in the ever rising stock market. When the market bubble crashed, those profits went poof and the companies had to replace the funds needed to cover potential losses with massive rate hikes.
That factor may be stupid but I'd agree with you that it isn't malicious. The second factor is malicious. It is well known that a few bad doctors generate most of the big awards that survive appeals. Instead of doing the public a favor and refusing to insure a few doctors who are killing and maiming people, they try to spread the costs around by raising the rates on everyone. Worse, they have managed to succeed in passing laws limiting damages through "tort reform" making it more difficult to protect yourself. I do not know if I would have filed a lawsuit against my first surgeon under any legal circumstances. What bothers me is that I cannot list him by name and warn other Chiarians not to trust his opinion. He could have killed me without the intervention of the real Chiari expert and I cannot even tell people that "Doctor A" is not a Chiari expert so trusting him could lead to decades of suffering.
My PCP, who is wonderfully caring and careful, has to pay increased rates because insurance companies realized they could make more money that way. Remember, they have to collect the increased rates from as many doctors as possible while shielding themselves from paying out damages in order to maximize profits. When you hear about the "stupid woman" who maimed herself because she didn't know that coffee is hot, think of the motives behind the creation of such a story.
I'm going to post this now despite the fact that I haven't gotten to the meltdown part. This is what used up the emotional energy that left me so defenseless later on.
My in-laws are in town and they are among my favorite people in existence. The problem is that my symptoms could fool you very easily. My sister-in-law is as opinionated as I am about most things. Part of being as opinionated as I am is believing that no one else ever considers their positions carefully enough when they don't agree with me. It's worse than rooting for the wrong sports team when that person says or does something that violates my strongest held values. It's also worse when my temper has been triggered already.
In this case, the trigger ties right into a subject of this blog: "frivolous" lawsuits. There is a belief in this nation that we are plagued by hordes of people filing useless lawsuits and taking money from honest businesses. Like most big lies, there is a small bit of truth in it to attract the belief of honest people like my sister-in-law. The classic "frivolous lawsuit" story tends to involve the case of a woman who spilled hot fast food coffee on herself. She sued the company and won big bucks in the jury trial. Factually, that's correct as far as it goes.
What really happened is that she asked the company to cover her medical bills which included surgery. When they refused, she hired a lawyer and learned that the company kept its coffee unreasonably hot. (The cup may also have been defective but I can't trust my memory there.) They kept refusing to settle out of court despite the disabling injury until a jury of her peers imposed punitive damages in the millions. Then the company appealed and villified the woman in the far less open world of appeals. Her award was reduced to the point of not even covering her medical bills but she's known as the woman who made millions by being stupid enough to spill coffee on herself.
Stories like that are misused to protect the wrong doctors. Once again, there is the factual story that says most doctors pay way too much for malpractice insurance. That is true and it is doubly the fault of the insurance companies. First of all, they blame these so called frivolous lawsuits for the high cost of insuring doctors against malpractice. They claim that these few high awards are to blame for the high costs by using the "Donald Trump fallacy." Whenever Donald Trump enters a room, the average income of everyone else in it rises considerably. Replace Trump with Bill Gates if you prefer but it's still the same point.
The high cost of insurance premiums is due to two factors both controlled by the companies, themselves. First of all, they had a premium war in the early 90s during the Clintom boom. In order to attract the least risky doctors, they lowered rates to below cost for those risk categories. (John, that doesn't make any sense! Tell me about it.) They turned a profit by investing the premiums in the ever rising stock market. When the market bubble crashed, those profits went poof and the companies had to replace the funds needed to cover potential losses with massive rate hikes.
That factor may be stupid but I'd agree with you that it isn't malicious. The second factor is malicious. It is well known that a few bad doctors generate most of the big awards that survive appeals. Instead of doing the public a favor and refusing to insure a few doctors who are killing and maiming people, they try to spread the costs around by raising the rates on everyone. Worse, they have managed to succeed in passing laws limiting damages through "tort reform" making it more difficult to protect yourself. I do not know if I would have filed a lawsuit against my first surgeon under any legal circumstances. What bothers me is that I cannot list him by name and warn other Chiarians not to trust his opinion. He could have killed me without the intervention of the real Chiari expert and I cannot even tell people that "Doctor A" is not a Chiari expert so trusting him could lead to decades of suffering.
My PCP, who is wonderfully caring and careful, has to pay increased rates because insurance companies realized they could make more money that way. Remember, they have to collect the increased rates from as many doctors as possible while shielding themselves from paying out damages in order to maximize profits. When you hear about the "stupid woman" who maimed herself because she didn't know that coffee is hot, think of the motives behind the creation of such a story.
I'm going to post this now despite the fact that I haven't gotten to the meltdown part. This is what used up the emotional energy that left me so defenseless later on.
Monday, April 2, 2012
Like Being Soaked in Acid
All of my symptoms were out of control at the same time. The headache was intense and the twitching of head and limbs made it worse but I'm used to that in a way. Every joint ached as if it were the coldest day of the coldest winter ever. When I tried to relax my joints, I realized that the intense pain wasn't just in every joint. Between the joints, every muscle that I know of felt as if it were on fire. While it started out as if it were an almost pleasant weight lifting burn, it got more intense.
I'm lucky because I have Melissa to help me. She saw that I was in worse shape than usual and helped me walk through my bad day routine. I had taken the maximum dose of my breakthrough pain meds so she made me a cup of herbal tea without asking. Thinking about what to choose would have cost me more pain. Anything with camomile helps but she made me something with other herbs along the same lines. Then she cooked some dinner. Food, tea and medicine helped me get to the point where I could bear it.
Even with all of that and meditation, I was in serious discomfort. I told her that the only thing that kept me from asking to go to the ER was my lack of faith in ER pain control. I'm on such high doses of narcotics that all an ER doctor can do is attack specific symptoms. We were already doing that at home after years of experience. (In other words, go to the ER if you feel you should.)
This was just an indication of how much pain I was in because I hate hospitals with a passion. Even considering a hospital trip is my version of putting up the white flag. These last few weeks have been full of pain. Discounting the first 48 hours after my first surgery, this may be the worst I've ever felt over an extended period. There has been a fair amount of rain, a lot of stress and I've felt completely helpless at times.
It's a good thing I knew that time passes. These massive attacks may seem like they take forever but they do pass if managed. I don't know what I'd do without that faith.
I'm lucky because I have Melissa to help me. She saw that I was in worse shape than usual and helped me walk through my bad day routine. I had taken the maximum dose of my breakthrough pain meds so she made me a cup of herbal tea without asking. Thinking about what to choose would have cost me more pain. Anything with camomile helps but she made me something with other herbs along the same lines. Then she cooked some dinner. Food, tea and medicine helped me get to the point where I could bear it.
Even with all of that and meditation, I was in serious discomfort. I told her that the only thing that kept me from asking to go to the ER was my lack of faith in ER pain control. I'm on such high doses of narcotics that all an ER doctor can do is attack specific symptoms. We were already doing that at home after years of experience. (In other words, go to the ER if you feel you should.)
This was just an indication of how much pain I was in because I hate hospitals with a passion. Even considering a hospital trip is my version of putting up the white flag. These last few weeks have been full of pain. Discounting the first 48 hours after my first surgery, this may be the worst I've ever felt over an extended period. There has been a fair amount of rain, a lot of stress and I've felt completely helpless at times.
It's a good thing I knew that time passes. These massive attacks may seem like they take forever but they do pass if managed. I don't know what I'd do without that faith.
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