One of my many oft shared observations about life is that it is relatively easy to declare your intention to start a new habit and then to have a good first day. The second time around is the first real test. Obviously, some things just won't work so they will blow up in your face from day one no matter what you do. Then there are those important things that just have to go well no matter what. I look at my first trip up to New York to see Melissa and me in-laws to be as an example of this. Everyone was on their best behavior (especially me) and I was willing to devote every resource I had to this including every last dollar I owned since I was still living with my parents.
The second time around was much harder. The second time, I was trying to do the job more efficiently so that I could continue it into the future. Judy, my mother-in-law, didn't hesitate to delay my travel for a day so that she could "clean up for me." (I've never had a problem with her housekeeping either then or now but that's what she said was going on.) My father didn't hesitate to fill that day with as much yard work as he could find so that I was exhausted as I left.
I guess instead of placing my importance on the second time being more difficult, it should be on how much more important it is. You cannot establish habits (good or bad) in a single day, you cannot know a trend from a single event and you cannot claim to have a routine if it only lasts one day. Therefore, I got out of bed at about 6 AM despite a bad night's sleep to take out the trash and take a walk. This time, it was only one bag of trash but much heavier and I decided to make the whole loop that my car odometer once called seven tenths of a mile. I'm calling it half a mile with the whole pedestrians on the sidewalk or the left side of the road which would be the inside of the loop. It's better to claim a lesser distance than to get cocky and fall flat on your face if someone tests you.
Now, I'm sucking down water as quickly as I can drink it comfortably in preparation for the rest of the day. The weather looks very much like one of those days when it will start raining and not stop for a couple of days but the forecast is calling for triple digit temperatures. If it clears up, I'm going to try to hit the pool again today. If it's raining, I don't plan to risk it. We live next to an airport so it's not easy to pick out thunder from all the jet noise. (Okay. The airport is down the road maybe a couple miles away but you get my point.)
The pool visit didn't go quite like I had hoped with laps being a problem. It was less my stamina than the degraded muscle memory making it hard to swim. My movements were uncoordinated so my strokes lacked all power. My instinct to keep my head above water was difficult to overcome as well so my bottom half was too far underwater for kicking to help much. Therefore, I couldn't do more than one lap at a time yet even that was physically and mentally draining.
Late Update (6/20: Things didn't go as planned or even close to it. I was exhausted after my bad night's sleep and half mile walk. I couldn't stay up until my planned nap time and slept until close to midnight. The excessive heat warning begins at 1 PM and I think I'll adjust to it a little for the rest of the day. I did complete my mile walk but it's humid out there and so I was ready to drop afterward. I'm planning to sleep early today because I'm wiped out after my walk. I might be ready to go to the pool near closing time because there's an adult swim afterward. I qualify as an adult.)
Wednesday, June 20, 2012
Monday, June 18, 2012
Productive Overreaching
I slept too late yesterday and forgot to take my bedtime meds last night so it was an all-nighter. I managed to take two bags of trash out to the dumpster which inspired me to do more. Actually, the first thing I did was clear off the nice couch taking all the junk from that and putting in the disintegrating chairs. I had been getting frustrated at my inability to get comfortable in either chair for a while now.
You have your choice of hazards between the two chairs now. On the left side, you have a back that disconnects on one side. It's not quite as dangerous as it sounds since the back doesn't come all the way off but it doesn't lean back at all. On the right side, you have the chair that exploded. Apparently, one too many screws came loose on that side so the foot rest is not actually connected to anything. If you attempt to recline the right side, you end up with a pile of metal bars and other assorted pieces at your feet.
It isn't that these weren't nice chairs (a divided loveseat actually) but they weren't designed for the sort of wear they got. I fall a lot and sitting is involuntary a frightening amount of the time. These things aren't designed to have the weight of a full grown man flopping down into them for years. It also didn't help that I tended to live in my chair eating and even sleeping there for major parts of several years. It didn't seem possible at first but the collective impact actually bent major pieces on each side giving the poor thing a decided list outward on both sides.
Someone needs to design furniture with people in mind who are overweight and crash land a lot. They also need to make it comfortable and dirt cheap. Right now would be kinda nice since moving the junk from the couch into the chairs is a de facto burial. They are officially dead and I hope to get all the forks out of them before dumping them somewhere. (It's a pun but I did eat several thousand meals in them.) Who would have thought I'd get a chance to make two fork puns before noon?!?!
The moving of the junk is what inspired the dumpster trips but most of that junk is not actual trash. There are several comfortable blankets and what seems like about a dozen pillows in that pile. (What is it with women and decorative pillows?) The dumpster trip inspired the next part of my day. I took an additional short walk to check out the neighborhood pool. I'm glad I did because it doesn't open until noon and I had assumed that would be much earlier. If not for that sign, people would be calling the police right now to report a great white whale that somehow beached itself outside the fence.
In case you haven't guessed, I'm explaining what I meant by productive overreaching. I've done more (just counting the productive/practical stuff) before 10 AM than I normally accomplish in a day. There will likely be consequences later on. I'm feeling a fair amount of stiffness and soreness already. I've overdone it again but things needed to be (over) done. There was also writing, a change to my car insurance policy and lots of gaming but the last one doesn't count for anything except mental wear and tear. There's no guarantee that I've gone too far already but it's close to certain so I might as well take the full plunge.
Speaking of plunges, I've decided to risk going to the pool today despite the remaining scabs on my burns. Hopefully, they won't bar me from getting in and I'll try not to leave anything gross behind. My reasoning is something from Ocean City. I slept so well down there and even on a regular schedule but lost that when I returned home. One of the theories is that I was out and about in Ocean City. It wasn't much exercise but I was moving around getting in and out of the car or walking down to the beach. If that helped me so much, I'm hoping to combine that with the theory of having a routine and take a daily swim. In order to take a daily swim, I have to start with a day so that shall be today.
I was considerably healthier after a week when most of my exercise involved walking in and out of restaurants so I'm wondering what a healthy routine might do. If I replace my rounds of beer (not that I'm swearing off beer - just can't afford to drink like I did that week very often), with laps in a pool, there might be some real improvement that my PCP could appreciate. When this many lines from different graphs intersect in one place, I see something you might call a "sweet spot."
Obviously, I won't be doing any Michael Phelps impressions out there. Laps may end up being a real stretch but moving around instead of sitting or lying down is an improvement. When dealing with chronic conditions, improvement is all we can ask for without being silly. I'll take a full recovery if someone is offering but I have my doubts about that. As for immediate results, I'll take getting away with overreaching this much with no extended periods of agony. That would be good enough.
You have your choice of hazards between the two chairs now. On the left side, you have a back that disconnects on one side. It's not quite as dangerous as it sounds since the back doesn't come all the way off but it doesn't lean back at all. On the right side, you have the chair that exploded. Apparently, one too many screws came loose on that side so the foot rest is not actually connected to anything. If you attempt to recline the right side, you end up with a pile of metal bars and other assorted pieces at your feet.
It isn't that these weren't nice chairs (a divided loveseat actually) but they weren't designed for the sort of wear they got. I fall a lot and sitting is involuntary a frightening amount of the time. These things aren't designed to have the weight of a full grown man flopping down into them for years. It also didn't help that I tended to live in my chair eating and even sleeping there for major parts of several years. It didn't seem possible at first but the collective impact actually bent major pieces on each side giving the poor thing a decided list outward on both sides.
Someone needs to design furniture with people in mind who are overweight and crash land a lot. They also need to make it comfortable and dirt cheap. Right now would be kinda nice since moving the junk from the couch into the chairs is a de facto burial. They are officially dead and I hope to get all the forks out of them before dumping them somewhere. (It's a pun but I did eat several thousand meals in them.) Who would have thought I'd get a chance to make two fork puns before noon?!?!
The moving of the junk is what inspired the dumpster trips but most of that junk is not actual trash. There are several comfortable blankets and what seems like about a dozen pillows in that pile. (What is it with women and decorative pillows?) The dumpster trip inspired the next part of my day. I took an additional short walk to check out the neighborhood pool. I'm glad I did because it doesn't open until noon and I had assumed that would be much earlier. If not for that sign, people would be calling the police right now to report a great white whale that somehow beached itself outside the fence.
In case you haven't guessed, I'm explaining what I meant by productive overreaching. I've done more (just counting the productive/practical stuff) before 10 AM than I normally accomplish in a day. There will likely be consequences later on. I'm feeling a fair amount of stiffness and soreness already. I've overdone it again but things needed to be (over) done. There was also writing, a change to my car insurance policy and lots of gaming but the last one doesn't count for anything except mental wear and tear. There's no guarantee that I've gone too far already but it's close to certain so I might as well take the full plunge.
Speaking of plunges, I've decided to risk going to the pool today despite the remaining scabs on my burns. Hopefully, they won't bar me from getting in and I'll try not to leave anything gross behind. My reasoning is something from Ocean City. I slept so well down there and even on a regular schedule but lost that when I returned home. One of the theories is that I was out and about in Ocean City. It wasn't much exercise but I was moving around getting in and out of the car or walking down to the beach. If that helped me so much, I'm hoping to combine that with the theory of having a routine and take a daily swim. In order to take a daily swim, I have to start with a day so that shall be today.
I was considerably healthier after a week when most of my exercise involved walking in and out of restaurants so I'm wondering what a healthy routine might do. If I replace my rounds of beer (not that I'm swearing off beer - just can't afford to drink like I did that week very often), with laps in a pool, there might be some real improvement that my PCP could appreciate. When this many lines from different graphs intersect in one place, I see something you might call a "sweet spot."
Obviously, I won't be doing any Michael Phelps impressions out there. Laps may end up being a real stretch but moving around instead of sitting or lying down is an improvement. When dealing with chronic conditions, improvement is all we can ask for without being silly. I'll take a full recovery if someone is offering but I have my doubts about that. As for immediate results, I'll take getting away with overreaching this much with no extended periods of agony. That would be good enough.
Saturday, June 16, 2012
Starting at the Bottom
Philosophy and ideas are important. When I'm writing entries like the last one, my head may seem stuck way up in the clouds but I assure you my feet are on the ground. (Well, let's make that carpet on the second floor but you get the idea.) Those of us who are in pain can end up needing so much help that we don't know exactly what we need at times. In my case, I needed to start from the ground up. I tend to feel better if I have something approaching a normal sleep schedule.
Therefore, I managed to get to sleep last night at a reasonable hour by my standards and then I wrestled myself out of bed before 11 AM. That's a little later than I'd like to sleep but it's a shift in the right direction. Waking up at a "reasonable hour" has put my whole day on schedule more or less. It's funny to think that my first issue with getting out of bed was wondering what I'd do with my day once I was up. It's funny because, one cup of coffee later, I read through my email and did my easy activism for the day. That made me want to write.
My last entry came the day before I read a fascinating article on the lack of ideas in this country right now. Everyone is so fixated on the specifics of things that there is no time for philosophy. Actually, most people fail to pay attention as usual but those who pay attention are focused on specifics. (Remember, politics is a dirty word in this country.) Big ideas are important because they lead to specifics that make sense from that point of view. Everyone has heard of the "big idea" called trickle down economics. Nevermind that it makes very little sense. It leads to certain specific policies which also don't make sense except within the context of the big idea. I think a lot of people believe in it solely because it is the only big idea that gets that sort of promotion.
Today's big idea is that we all need help. I'm writing about disabled people in particular but it applies to everyone else too. Helping people who need or could use a hand is the biggest part of a society based on social justice. A lot of us don't have money to spare for causes we support whether they are political or just going out to see live music at a local club. You get music/food/drink out of the deal, the club gets money to stay open and the band gets their money plus exposure plus the experience that is valuable beyond measure. Some of us don't have money to spend on a lot of different things but it's good to maximize the value of what you do spend.
For a lot of people, the help they need involves that most valuable of all resources, time. Spending time with someone whether listening to them or helping a kid learn to throw a good change-up, is the ultimate hand up. I am trying to spend more time with people whether in person or online. You never know who you're going to meet in this crazy online universe. When I was growing up, I never would have guessed that I'd have a good friend from South Africa much less the dozens of people in the Netherlands who were once such a big part of my life. "Scarey" from South Africa came to mind because I she told me that I'd once saved a bad day for her because I wrote about what a good time I had hanging out with her on the game called "Ancient Anguish." (Also called AA but that can be confusing at first.)
In any case, it's good to recognize that you need help instead of trying to deny it or be embarrassed about it. I'm not exactly the poster child for letting people help me with my history of arguing with nurses about my desire to be independent but I am getting better at letting people do things for me. The little things matter as much as the big things in proportion anyway.
There are people out there who are screaming bloody murder at the idea of people getting help. They claim to be self sufficient in theory and wonder why they should ever have to pay a dime in taxes. I don't have any time for these people who don't realize just how much this society has given them. I don't understand how anyone could claim such ignorance until I remember how shy my side of the political aisle is about beliefs. If people only knew what good government had already done in their lives, they might not be so wrong headed. Then again, they might just be looking for something to be angry about and government serves them in that capacity.
Therefore, I managed to get to sleep last night at a reasonable hour by my standards and then I wrestled myself out of bed before 11 AM. That's a little later than I'd like to sleep but it's a shift in the right direction. Waking up at a "reasonable hour" has put my whole day on schedule more or less. It's funny to think that my first issue with getting out of bed was wondering what I'd do with my day once I was up. It's funny because, one cup of coffee later, I read through my email and did my easy activism for the day. That made me want to write.
My last entry came the day before I read a fascinating article on the lack of ideas in this country right now. Everyone is so fixated on the specifics of things that there is no time for philosophy. Actually, most people fail to pay attention as usual but those who pay attention are focused on specifics. (Remember, politics is a dirty word in this country.) Big ideas are important because they lead to specifics that make sense from that point of view. Everyone has heard of the "big idea" called trickle down economics. Nevermind that it makes very little sense. It leads to certain specific policies which also don't make sense except within the context of the big idea. I think a lot of people believe in it solely because it is the only big idea that gets that sort of promotion.
Today's big idea is that we all need help. I'm writing about disabled people in particular but it applies to everyone else too. Helping people who need or could use a hand is the biggest part of a society based on social justice. A lot of us don't have money to spare for causes we support whether they are political or just going out to see live music at a local club. You get music/food/drink out of the deal, the club gets money to stay open and the band gets their money plus exposure plus the experience that is valuable beyond measure. Some of us don't have money to spend on a lot of different things but it's good to maximize the value of what you do spend.
For a lot of people, the help they need involves that most valuable of all resources, time. Spending time with someone whether listening to them or helping a kid learn to throw a good change-up, is the ultimate hand up. I am trying to spend more time with people whether in person or online. You never know who you're going to meet in this crazy online universe. When I was growing up, I never would have guessed that I'd have a good friend from South Africa much less the dozens of people in the Netherlands who were once such a big part of my life. "Scarey" from South Africa came to mind because I she told me that I'd once saved a bad day for her because I wrote about what a good time I had hanging out with her on the game called "Ancient Anguish." (Also called AA but that can be confusing at first.)
In any case, it's good to recognize that you need help instead of trying to deny it or be embarrassed about it. I'm not exactly the poster child for letting people help me with my history of arguing with nurses about my desire to be independent but I am getting better at letting people do things for me. The little things matter as much as the big things in proportion anyway.
There are people out there who are screaming bloody murder at the idea of people getting help. They claim to be self sufficient in theory and wonder why they should ever have to pay a dime in taxes. I don't have any time for these people who don't realize just how much this society has given them. I don't understand how anyone could claim such ignorance until I remember how shy my side of the political aisle is about beliefs. If people only knew what good government had already done in their lives, they might not be so wrong headed. Then again, they might just be looking for something to be angry about and government serves them in that capacity.
Tuesday, June 12, 2012
Health Care Vs. Health Insurance
One of the problems we have with our health care system in the United States is that it's based on an outdated insurance model. Insurance is something you buy in case something goes wrong. You are required by every state I know of to purchase something called liability insurance for your car. Liability insurance actually covers those people in the other car of a theoretical accident in which you are deemed to be at fault. Since a split second mistake behind the wheel can cost someone an entire lifetime of income in addition to medical expenses, you are advised to carry enough liability insurance to cover all of your assets. This means that your insurance would pay all of a claim (minus deductible) if you are sued for all that you own.
You are not required to carry collision insurance which covers damage done to your own car or comprehensive insurance which covers damage done to your car while it is parked. The main reason is that you're not going to sue yourself for those damages. There are also some technical reasons why various degrees of collision and/or comprehensive insurance are recommended for some people. Melissa has to park her car in a busy lot at work where it is vulnerable to hit and run drivers or vandalism. Then there was the day that someone smashed one of the car windows while it was sitting in our driveway. It is considered statistically impossible to live your life without being involved in auto accidents.
Car insurance does not cover things like preventative maintenance because it is a hedge against bad things happen. That sort of maintenance is another hedge against disaster since most insurance doesn't actually cover mechanical breakdowns even if you've had your car maintained. Therefore, it is likely that the average person will file less than a dozen claims over their lifetime and I'm trying to guess high. Deductibles and large uncovered areas of your car make it certain that you will never consider filing an insurance claim to be a good thing.
Health insurance is a completely different matter. The vast majority of health insurance claims filed are for basic preventative maintenance. You get immunized as a child, get your teeth cleaned and checked and get screened for various diseases as you get older. A true insurance system would not cover these costs because there is no way to hedge against the risk. On the other hand, our car insurance system requires periodic inspections of your car so that you are less likely to have a malfunction that ends up hurting someone else. Our health insurance system does not require you to get those awkward symptoms checked out and the result is one of those "bugs" that runs its way through the workplace as employees expose their peers to risks through a system that requires them to do so.
Here's another difference between a health insurance system and a car insurance system: a badly damaged vehicle will most likely be "totalled" by your insurance company. This means that the cost of repairing the car exceeds the total current value of that car. In such a case, the insurance company pays you the listed value of your car to put toward buying a new one.
What happens when our bodies sustain catastrophic damage due to injury or illness? Thankfully, there is no legal way to set a price on your body. They can't "total" you and pay less than the total cost to repair you, right? Actually, they can. All of us who are disabled go through a process where our doctors prescribe a treatment and the insurance company refuses to pay for it. They have committees set up to decide what treatments are covered and what is not covered. They also have the ability to decide that a treatment should only cost a small portion of the actual cost. There are entire departments devoted to avoiding payment on claims. Sometimes, the doctor is under contract to absorb the rest of the real cost but some patient will be covering the rest of the true cost. Otherwise, the doctor would lose money doing the job society needs them to do. Do we really need to pay for the denial department of the insurance company as well?
When you start to look at the system based on some sort of social justice, you will see that it is hopelessly broken. Patients deserve the medical care that will get them the best standard of life possible which I'm defining as having as much freedom from pain and other unpleasant conditions as possible. Doctors spend decades racking up debts while working absurdly hard in schools, internships and residencies. They deserve a relatively high standard of living which I'm defining as the ability to afford the nice things in life in addition to paying off all those debts. Insurance companies are in the business of making money and have stockholders who deserve to be represented by people who will try to maximize the value of their investments. One of these things does not belong here if you'll permit me to paraphrase "Sesame Street."
The very idea of health insurance makes no sense because holding down costs and raising profits does not maximize health results. We need to take on health care as a societal responsibility. Even big business would benefit from a better approach because every one of those workplace "plagues" cuts productivity. I don't have the numbers to back this up but I'm venturing a guess. If you add in the possibility of a serious epidemic, it would be obviously in the best interest of each business to avoid punishing employees for taking sick days. In this growing world of 24 hour/7 day a week over 365 days a year business, there has to be room for some increased schedule flexibility.
Disability insurance needs to play a greater role in all of this. Despite the massive zipper scar on the back of my head from brain surgery, I had trouble qualifying for the private long term disability that I bought. Then, like most people, I was rejected by Social Security Disability but I was lucky. My private disability insurance hired me a lawyer to represent me in my third try. In my case, the judge who handled my hearing in the third stage was fair and the doctor working for Social Security knew what he was seeing. I never had to testify through my case of the twitches because that doctor read up on my case, saw my symptoms for himself and made my points for me.
Lucky as I was, that delay cost me late fees on my rent and kept my money out of the economy for months. Multiply that by a couple of million people with varying degrees of the same problem and the system meant to keep out freeloaders costs the economy many times what letting a few bad apples get through would cost. From the social justice point of view, subjecting those who already suffer to all that difficulty is a crime.
I don't pretend to have all the answers but I will suggest a few here and there. The main point would be taking health care out of the insurance system and putting into something new. This new something would examine health care from a social justice point of view. Where there is social justice, society benefits.
You are not required to carry collision insurance which covers damage done to your own car or comprehensive insurance which covers damage done to your car while it is parked. The main reason is that you're not going to sue yourself for those damages. There are also some technical reasons why various degrees of collision and/or comprehensive insurance are recommended for some people. Melissa has to park her car in a busy lot at work where it is vulnerable to hit and run drivers or vandalism. Then there was the day that someone smashed one of the car windows while it was sitting in our driveway. It is considered statistically impossible to live your life without being involved in auto accidents.
Car insurance does not cover things like preventative maintenance because it is a hedge against bad things happen. That sort of maintenance is another hedge against disaster since most insurance doesn't actually cover mechanical breakdowns even if you've had your car maintained. Therefore, it is likely that the average person will file less than a dozen claims over their lifetime and I'm trying to guess high. Deductibles and large uncovered areas of your car make it certain that you will never consider filing an insurance claim to be a good thing.
Health insurance is a completely different matter. The vast majority of health insurance claims filed are for basic preventative maintenance. You get immunized as a child, get your teeth cleaned and checked and get screened for various diseases as you get older. A true insurance system would not cover these costs because there is no way to hedge against the risk. On the other hand, our car insurance system requires periodic inspections of your car so that you are less likely to have a malfunction that ends up hurting someone else. Our health insurance system does not require you to get those awkward symptoms checked out and the result is one of those "bugs" that runs its way through the workplace as employees expose their peers to risks through a system that requires them to do so.
Here's another difference between a health insurance system and a car insurance system: a badly damaged vehicle will most likely be "totalled" by your insurance company. This means that the cost of repairing the car exceeds the total current value of that car. In such a case, the insurance company pays you the listed value of your car to put toward buying a new one.
What happens when our bodies sustain catastrophic damage due to injury or illness? Thankfully, there is no legal way to set a price on your body. They can't "total" you and pay less than the total cost to repair you, right? Actually, they can. All of us who are disabled go through a process where our doctors prescribe a treatment and the insurance company refuses to pay for it. They have committees set up to decide what treatments are covered and what is not covered. They also have the ability to decide that a treatment should only cost a small portion of the actual cost. There are entire departments devoted to avoiding payment on claims. Sometimes, the doctor is under contract to absorb the rest of the real cost but some patient will be covering the rest of the true cost. Otherwise, the doctor would lose money doing the job society needs them to do. Do we really need to pay for the denial department of the insurance company as well?
When you start to look at the system based on some sort of social justice, you will see that it is hopelessly broken. Patients deserve the medical care that will get them the best standard of life possible which I'm defining as having as much freedom from pain and other unpleasant conditions as possible. Doctors spend decades racking up debts while working absurdly hard in schools, internships and residencies. They deserve a relatively high standard of living which I'm defining as the ability to afford the nice things in life in addition to paying off all those debts. Insurance companies are in the business of making money and have stockholders who deserve to be represented by people who will try to maximize the value of their investments. One of these things does not belong here if you'll permit me to paraphrase "Sesame Street."
The very idea of health insurance makes no sense because holding down costs and raising profits does not maximize health results. We need to take on health care as a societal responsibility. Even big business would benefit from a better approach because every one of those workplace "plagues" cuts productivity. I don't have the numbers to back this up but I'm venturing a guess. If you add in the possibility of a serious epidemic, it would be obviously in the best interest of each business to avoid punishing employees for taking sick days. In this growing world of 24 hour/7 day a week over 365 days a year business, there has to be room for some increased schedule flexibility.
Disability insurance needs to play a greater role in all of this. Despite the massive zipper scar on the back of my head from brain surgery, I had trouble qualifying for the private long term disability that I bought. Then, like most people, I was rejected by Social Security Disability but I was lucky. My private disability insurance hired me a lawyer to represent me in my third try. In my case, the judge who handled my hearing in the third stage was fair and the doctor working for Social Security knew what he was seeing. I never had to testify through my case of the twitches because that doctor read up on my case, saw my symptoms for himself and made my points for me.
Lucky as I was, that delay cost me late fees on my rent and kept my money out of the economy for months. Multiply that by a couple of million people with varying degrees of the same problem and the system meant to keep out freeloaders costs the economy many times what letting a few bad apples get through would cost. From the social justice point of view, subjecting those who already suffer to all that difficulty is a crime.
I don't pretend to have all the answers but I will suggest a few here and there. The main point would be taking health care out of the insurance system and putting into something new. This new something would examine health care from a social justice point of view. Where there is social justice, society benefits.
Monday, June 11, 2012
Time Rolls By
I don't have any particular topic in mind here today but there's a few random things building up. First of all, I slept all of yesterday from early morning until late afternoon anyway. That has its own issues with not being able to clear my throat all the way, etc. Now I've been awake at least 16 hours as the day begins for most people. Well, some people have been working since the buttcrack of dawn and others would take my yesterday in a heartbeat. Sometime around 8 AM is just sort of an average start of the day you could say.
I, of course, feel the first vestiges of fatigue coming on. I dread standing up right now because gravity will take full effect on my limbs and the all over pain will get serious. I dread facing this day because I know that one of two things will happen. I will either sleep most of the day or I will stay up straight through the night and drift off in early morning again. Obviously, I need to stand up or this wouldn't concern me. It's time for my morning medication if not meds from last night. I am not sure if I remembered my "bedtime meds" since I hadn't been awake that long at "bedtime."
Of course I forgot my bedtime meds but I refuse to take them now! There is too much to do for me to waste an entire day even if I don't do anything practical. I need to send Melissa out on errands when she wakes up. It's usually the little things that make me feel helpless. In the old days, I could drive myself to the store and buy things although it was something we did together most of the time. Right now, I need some medical stuff and I want to replenish some food stuff before something dumb happens and we run out of money!
There's a tasting I want to attend on Thursday night so I'd like to save some money for that as well. It will be my first chance to scare all our friends there with my wounds. Ah, my wounds seem to be healing nicely although all the red and black would likely send children running away screaming. (The children at the pain doc's office didn't seem to notice. Do they actually run and scream anymore?) Melissa and I think they are healing nicely although I'd settle for healed yesterday. They hardly cause me any pain these days unless a cat decides to stand on them and then dig in her claws when I ask her to move. I don't think that's happened in a week or so.
Our comfortable loveseat all but exploded yesterday (by some definition of yesterday) when I tried to put the leg rest down. This is the side that was just listing to starboard a little and not the side where the back pops off without notice. Melissa thinks she can make it work again by replacing a screw. We got our TV working again to some degree with our usual teamwork. I put together a practical idea and she made it happen. We have a digital antenna which gets most major networks depending on the weather. I can't figure out which weather works best, of course.
There's pain and fatigue on the one hand. They never seem to leave me alone but my real problem is this lingering feeling of uselessness/helplessness. I never felt like this in the condo. I slept well there, ate well there and took care of myself just fine there. There are things I can try but I have trouble shaking the fear of getting burned. The pun was intended, of course.
I, of course, feel the first vestiges of fatigue coming on. I dread standing up right now because gravity will take full effect on my limbs and the all over pain will get serious. I dread facing this day because I know that one of two things will happen. I will either sleep most of the day or I will stay up straight through the night and drift off in early morning again. Obviously, I need to stand up or this wouldn't concern me. It's time for my morning medication if not meds from last night. I am not sure if I remembered my "bedtime meds" since I hadn't been awake that long at "bedtime."
Of course I forgot my bedtime meds but I refuse to take them now! There is too much to do for me to waste an entire day even if I don't do anything practical. I need to send Melissa out on errands when she wakes up. It's usually the little things that make me feel helpless. In the old days, I could drive myself to the store and buy things although it was something we did together most of the time. Right now, I need some medical stuff and I want to replenish some food stuff before something dumb happens and we run out of money!
There's a tasting I want to attend on Thursday night so I'd like to save some money for that as well. It will be my first chance to scare all our friends there with my wounds. Ah, my wounds seem to be healing nicely although all the red and black would likely send children running away screaming. (The children at the pain doc's office didn't seem to notice. Do they actually run and scream anymore?) Melissa and I think they are healing nicely although I'd settle for healed yesterday. They hardly cause me any pain these days unless a cat decides to stand on them and then dig in her claws when I ask her to move. I don't think that's happened in a week or so.
Our comfortable loveseat all but exploded yesterday (by some definition of yesterday) when I tried to put the leg rest down. This is the side that was just listing to starboard a little and not the side where the back pops off without notice. Melissa thinks she can make it work again by replacing a screw. We got our TV working again to some degree with our usual teamwork. I put together a practical idea and she made it happen. We have a digital antenna which gets most major networks depending on the weather. I can't figure out which weather works best, of course.
There's pain and fatigue on the one hand. They never seem to leave me alone but my real problem is this lingering feeling of uselessness/helplessness. I never felt like this in the condo. I slept well there, ate well there and took care of myself just fine there. There are things I can try but I have trouble shaking the fear of getting burned. The pun was intended, of course.
Wednesday, June 6, 2012
PDD: June 2012
Yesterday was Pain Doc Day and I was as prepared for it as usual. That's to say that I was exhausted from a lack of sleep, worn down by the car ride and feeling on edge because of so many potential irritants. The one thing I was sure about was what medicines I was out of or nearly so. That's because I was out of nearly everything to the point of being on the verge of withdrawal symptoms.
In my previous appointment, I got the pain doc to put his finger on the panic button without pressing it. I was nearly sick to death with all of my coping mechanisms failing. Something had to change and change needed to come quickly. The first option in all of this change talk was my Ocean City vacation. Pent up stress had to be a big part of my problems because so many of the uncontrolled symptoms were triggered by stress in the first place. I was leaving at the end of the week following my previous appointment. If I had no significant improvement before the next appointment, all bets were off. We were going to figure out a whole new treatment plan.
Therefore, I showed up for this appointment a little nervous. I had gotten the expected improvement only to give some of it away since my return. I wanted to show the pain doc the improvement and get his finger off the panic button but I have some scary short term injuries/illnesses. As expected, he did a certain amount of fretting over the short term stuff but left me with his medical opinion - I should see a physician more qualified to deal with wounds and/or burns - to do with it as I chose.
I expected this and already had a plan in place to act should the pace of healing slow or should I suffer setbacks. What I didn't expect was a discussion about the (many times over) damned drug tests. Somehow, my pain patch medication was not showing up in the tests. I had been told by a qualified third party that their testing was clearly flawed and that I shouldn't worry about it. The tests were just meant to cover asses in the face of absurdly draconian drug laws. For some reason or other, I didn't expect my pain doc to defend them as strongly as he did. To be honest, I was a bit insulting but it was because my symptoms were raging on.
Of course, the "confrontation" never really happened. The doctor's concern was a practical matter. How was it that this medicine was failing to get into my system properly? My reply was equally practical. If it's clear that the medicine isn't getting into my system, I had no problem with them weaning me off it. We had a very brief discussion about how I could use the patches more efficiently and he decided that I was on such a high dosage that they had to be doing something. Also, I was reporting improvement so there was no sense disrupting a good thing.
It all went back to a policy that I repeated at the beginning of the appointment. I will disclose everything with complete honesty and I expect the same from them. Starting from such an honest point, we could compromise on specifics. I have to accept the reality that the office requires blood pressure checks even though they hurt with pain that lingers for hours. Taking the pain and my history of healthy blood pressure into account, we could compromise on how often the checks would actually happen. Taking my history of honesty into account, they look for less likely reasons why drug tests might not have the proper results.
The improvements were noted and the doctor told me that I needed more vacations. Melissa and I are waiting for these burns to heal before we search out ways to bring Ocean City effects back to Delaware. Any little bit will help, of course.
My symptoms went berserk before we even left the office this time. Melissa took me home and set me up in her chair which is less broken than mine. From there, she went and got my meds while Maddie the cat napped me as best she could. Melissa came home and spent the rest of the day by my side. She made us lunch and dinner while we watched a "MASH" DVD. I can't be sure but I think she might have repeated one episode three times while I napped because I have trouble sleeping for fear of missing something. I treasure moments spent with Melissa and the little things she does when I may or may not be too out of it to notice.
At the end of the night, I started to come apart. All of the little doubts added up only to combine with completely unrelated ones. It was a sign of pure exhaustion and there's no cure for it but sleep. Sleep never comes easy for me even when I'm too exhausted to function. I may fall asleep 30 times in an hour but that means waking up just as many times. Eventually, I did sleep and crashed for about 14 hours. That meant waking up at almost 5:30 PM!
What's that regular sleep schedule thing again? I had it going in Ocean City.
In my previous appointment, I got the pain doc to put his finger on the panic button without pressing it. I was nearly sick to death with all of my coping mechanisms failing. Something had to change and change needed to come quickly. The first option in all of this change talk was my Ocean City vacation. Pent up stress had to be a big part of my problems because so many of the uncontrolled symptoms were triggered by stress in the first place. I was leaving at the end of the week following my previous appointment. If I had no significant improvement before the next appointment, all bets were off. We were going to figure out a whole new treatment plan.
Therefore, I showed up for this appointment a little nervous. I had gotten the expected improvement only to give some of it away since my return. I wanted to show the pain doc the improvement and get his finger off the panic button but I have some scary short term injuries/illnesses. As expected, he did a certain amount of fretting over the short term stuff but left me with his medical opinion - I should see a physician more qualified to deal with wounds and/or burns - to do with it as I chose.
I expected this and already had a plan in place to act should the pace of healing slow or should I suffer setbacks. What I didn't expect was a discussion about the (many times over) damned drug tests. Somehow, my pain patch medication was not showing up in the tests. I had been told by a qualified third party that their testing was clearly flawed and that I shouldn't worry about it. The tests were just meant to cover asses in the face of absurdly draconian drug laws. For some reason or other, I didn't expect my pain doc to defend them as strongly as he did. To be honest, I was a bit insulting but it was because my symptoms were raging on.
Of course, the "confrontation" never really happened. The doctor's concern was a practical matter. How was it that this medicine was failing to get into my system properly? My reply was equally practical. If it's clear that the medicine isn't getting into my system, I had no problem with them weaning me off it. We had a very brief discussion about how I could use the patches more efficiently and he decided that I was on such a high dosage that they had to be doing something. Also, I was reporting improvement so there was no sense disrupting a good thing.
It all went back to a policy that I repeated at the beginning of the appointment. I will disclose everything with complete honesty and I expect the same from them. Starting from such an honest point, we could compromise on specifics. I have to accept the reality that the office requires blood pressure checks even though they hurt with pain that lingers for hours. Taking the pain and my history of healthy blood pressure into account, we could compromise on how often the checks would actually happen. Taking my history of honesty into account, they look for less likely reasons why drug tests might not have the proper results.
The improvements were noted and the doctor told me that I needed more vacations. Melissa and I are waiting for these burns to heal before we search out ways to bring Ocean City effects back to Delaware. Any little bit will help, of course.
My symptoms went berserk before we even left the office this time. Melissa took me home and set me up in her chair which is less broken than mine. From there, she went and got my meds while Maddie the cat napped me as best she could. Melissa came home and spent the rest of the day by my side. She made us lunch and dinner while we watched a "MASH" DVD. I can't be sure but I think she might have repeated one episode three times while I napped because I have trouble sleeping for fear of missing something. I treasure moments spent with Melissa and the little things she does when I may or may not be too out of it to notice.
At the end of the night, I started to come apart. All of the little doubts added up only to combine with completely unrelated ones. It was a sign of pure exhaustion and there's no cure for it but sleep. Sleep never comes easy for me even when I'm too exhausted to function. I may fall asleep 30 times in an hour but that means waking up just as many times. Eventually, I did sleep and crashed for about 14 hours. That meant waking up at almost 5:30 PM!
What's that regular sleep schedule thing again? I had it going in Ocean City.
Tuesday, June 5, 2012
Chronic or Terminal
The struggle to survive chronic pain can be a physical struggle, of course. Those of us who have been fighting long enough know that it's also a mental one. Some days, the only thing that gets me out of bed is the knowledge that my pills are downstairs. (If I'm sleeping in my chair, make that "the full bathrooms are upstairs.") I'll hide as long as I can only forcing myself to get up once I feel that odd burning sensation that tells me my meds are long overdue. While I start to cope with the new situation, something else hits me. This time, I learned that one of my list friends is dying.
I suppose that I'm adjusting to the loss (or partial loss) of my latest supporter well enough. At times, I feel the argument going on in my head. It hurts. It's supposed to hurt. No one is supposed to go through this! Oh, stop feeling sorry for yourself. Think of how it must be for your "list friend," Doug.
In response to one of Jodie's questions, Doug revealed that he is suffering from two terminal illnesses. He made a little joke out of it, of course. Jodie had asked how we deal with our problems and how they are resolved. Doug noted that he has no choice but to not "deal with" his problems the way Jodie meant. The only resolution for him is death. He sounded so brave and so in control of himself that I felt sicker inside. How does he do it?
(Those of you who know me very well know that I used to use the name "Doug" as an alias and/or alter ego. Some of you suspicious bastards might even suspect that I continue the practice but you'd be wrong. The name, Doug, ended up in a series of three novels in which the name got more and more fictional with each draft. Once I had a fictional Doug in novels I intend to be published, I stopped using the alias. No sense confusing the issue at all. There is a real Doug out there. In fact, there used to be two. Denver Doug passed away some time ago and he's been missed terribly in the journalling community.)
That's when I had to smile a bit and remember my own feelings and how I portray them sometimes. The easiest thing to do is to act brave. I wait until I've conquered a problem to explain how much it hurt me most of the time. That's why you should know how ambivalent I feel about terminal illnesses. Part of me wishes that my prognosis were terminal. It would make it easier to accept the bad days as something to treasure. Another part of me believes that I have an as yet undiagnosed terminal illness secondary to the known chronic ones.
The rest of me learned to fear death a bit during those frantic first days of symptoms that made no sense and cascaded out of control. I had no diagnosis and no clue what was wrong. Like most people, I had never heard of an Arnold Chiari Malformation much less that there were two (or three) types. People have died from ACM and that includes a young girl named Brianna. Hopefully, I spelled her name right. Traffic on the "rebel" Chiari list is light these days so I have not seen her mentioned recently. If you do not get the surgery from an expert, your symptoms can progress to the point where you stop breathing and don't start again. I believe that's what happened to the little girl.
The fear of death came back to me when I realized that my symptoms were no longer improving or stable in 2001-2002. I thought I was terminal and possibly in Stage III. Terminal cases generally run in three stages. First, there's the onset of symptoms and the pre-diagnosis panic. Once treatment begins, you enter Stage II which is also called the long stage. You learn to cope with the symptoms and things even seem to improve for some time. In fact, the first two stages are very much like a chronic illness. Unfortunately, Stage III is inevitable in terminal cases. Treatment starts to fail for some reason or another and bad days outnumber good/average days by a lot. All the coping mechanisms you built up fail one by one and then the end tends to come quickly. Stage II can last decades these days and doctors can be wrong about the terminal prognosis. A lot of terminal patients live a very long time. Of course, Doug is an actual doctor so I will give his announcement the benefit of the doubt.
Yes, I have studied this subject a bit. That's how a nerd arms himself. I learned a lot when I was convinced that only brain cancer could produce the bizarre symptoms of an ACM. That's when I learned that I had a "simple condition" that could be treated with a surgery "of some import." My expected recovery time was to be six weeks to six months post-op before I could expect my full recovery. Of course, this was all bullshit. My parents were told behind the scenes that I could expect full recovery in two years at most. I was only told of this after the two years had passed.
My recovery seemed to rest just on the cusp of "good enough" until around October 2001. That's when I started actually using the cane that Melissa had found for me and not just when she reminded me. I was falling all too often and then I was struck by my full symptoms again plus some new ones that winter. By December, I realized that I was in a free fall situation and that I needed a new doctor to discover what was wrong with me or that I could die.
Whenever I start to believe that I'm getting close to death, a long life even with dreadful symptoms starts to look better. When that long life prospect brings me near despair, I think a lot about what it might be like to have a literal "deadline." Most of the time, I recognize that both situations suck to such a high degree of suckitude that there's little to recommend from either. My coping strategies are designed to help me deal with long term chronic pain and not terminal illness.
They say the grass is always greener on the other side of the fence so I do slip up. There are days when I'm sick with envy because God decided to take someone else and not me. I see the stories of how "bravely" those others died while also struggling to stay alive until the very end. I see the sad faces of the loved ones and realize this is where I draw the line. Melissa will never have an extra day of grief because I gave up. If I could change places with the dying, I would refuse because it would hurt her. It would hurt others as well but she is the symbol of all that's right and good in this world.
I suppose that I'm adjusting to the loss (or partial loss) of my latest supporter well enough. At times, I feel the argument going on in my head. It hurts. It's supposed to hurt. No one is supposed to go through this! Oh, stop feeling sorry for yourself. Think of how it must be for your "list friend," Doug.
In response to one of Jodie's questions, Doug revealed that he is suffering from two terminal illnesses. He made a little joke out of it, of course. Jodie had asked how we deal with our problems and how they are resolved. Doug noted that he has no choice but to not "deal with" his problems the way Jodie meant. The only resolution for him is death. He sounded so brave and so in control of himself that I felt sicker inside. How does he do it?
(Those of you who know me very well know that I used to use the name "Doug" as an alias and/or alter ego. Some of you suspicious bastards might even suspect that I continue the practice but you'd be wrong. The name, Doug, ended up in a series of three novels in which the name got more and more fictional with each draft. Once I had a fictional Doug in novels I intend to be published, I stopped using the alias. No sense confusing the issue at all. There is a real Doug out there. In fact, there used to be two. Denver Doug passed away some time ago and he's been missed terribly in the journalling community.)
That's when I had to smile a bit and remember my own feelings and how I portray them sometimes. The easiest thing to do is to act brave. I wait until I've conquered a problem to explain how much it hurt me most of the time. That's why you should know how ambivalent I feel about terminal illnesses. Part of me wishes that my prognosis were terminal. It would make it easier to accept the bad days as something to treasure. Another part of me believes that I have an as yet undiagnosed terminal illness secondary to the known chronic ones.
The rest of me learned to fear death a bit during those frantic first days of symptoms that made no sense and cascaded out of control. I had no diagnosis and no clue what was wrong. Like most people, I had never heard of an Arnold Chiari Malformation much less that there were two (or three) types. People have died from ACM and that includes a young girl named Brianna. Hopefully, I spelled her name right. Traffic on the "rebel" Chiari list is light these days so I have not seen her mentioned recently. If you do not get the surgery from an expert, your symptoms can progress to the point where you stop breathing and don't start again. I believe that's what happened to the little girl.
The fear of death came back to me when I realized that my symptoms were no longer improving or stable in 2001-2002. I thought I was terminal and possibly in Stage III. Terminal cases generally run in three stages. First, there's the onset of symptoms and the pre-diagnosis panic. Once treatment begins, you enter Stage II which is also called the long stage. You learn to cope with the symptoms and things even seem to improve for some time. In fact, the first two stages are very much like a chronic illness. Unfortunately, Stage III is inevitable in terminal cases. Treatment starts to fail for some reason or another and bad days outnumber good/average days by a lot. All the coping mechanisms you built up fail one by one and then the end tends to come quickly. Stage II can last decades these days and doctors can be wrong about the terminal prognosis. A lot of terminal patients live a very long time. Of course, Doug is an actual doctor so I will give his announcement the benefit of the doubt.
Yes, I have studied this subject a bit. That's how a nerd arms himself. I learned a lot when I was convinced that only brain cancer could produce the bizarre symptoms of an ACM. That's when I learned that I had a "simple condition" that could be treated with a surgery "of some import." My expected recovery time was to be six weeks to six months post-op before I could expect my full recovery. Of course, this was all bullshit. My parents were told behind the scenes that I could expect full recovery in two years at most. I was only told of this after the two years had passed.
My recovery seemed to rest just on the cusp of "good enough" until around October 2001. That's when I started actually using the cane that Melissa had found for me and not just when she reminded me. I was falling all too often and then I was struck by my full symptoms again plus some new ones that winter. By December, I realized that I was in a free fall situation and that I needed a new doctor to discover what was wrong with me or that I could die.
Whenever I start to believe that I'm getting close to death, a long life even with dreadful symptoms starts to look better. When that long life prospect brings me near despair, I think a lot about what it might be like to have a literal "deadline." Most of the time, I recognize that both situations suck to such a high degree of suckitude that there's little to recommend from either. My coping strategies are designed to help me deal with long term chronic pain and not terminal illness.
They say the grass is always greener on the other side of the fence so I do slip up. There are days when I'm sick with envy because God decided to take someone else and not me. I see the stories of how "bravely" those others died while also struggling to stay alive until the very end. I see the sad faces of the loved ones and realize this is where I draw the line. Melissa will never have an extra day of grief because I gave up. If I could change places with the dying, I would refuse because it would hurt her. It would hurt others as well but she is the symbol of all that's right and good in this world.
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