Thank God it's stopped raining for now! While other people are doing year end reviews and things like that, I have trouble thinking past tomorrow and I'll admit it. Will I hurt as badly today and will I sleep all day? Melissa is working night shift on New Year's Eve so it will be difficult for her to get back in time. No partying for us. If I drink, it will be a desperate attempt to control pain. I hurt now and I had all my rationed medicine for Monday, December 30 so it's alcohol or nothing. Nothing will be my starter plan but I think a very weak rum and Diet Pepsi would let me sleep most of the day.
New Year's Eve is a good time to write about big topics and I've saved faith in God through chronic pain. I believe in God but I'm not sure I should say it's in spite of or because of the trials in my life. I spent a lot of time in therapy and one thing that I learned is that my most valued skills come from my experience with the bad things in life. I can put myself in the place of most people out there and empathize with their motives. Don't misunderstand. I do not agree with the decisions people make to commit violent crimes. I have experienced some of those same motivations and made better decisions. Is pain just another lesson I'm learning so that I can place my hand very gently on someone's shoulder and tell them that it's okay to spend some time now and again wailing about how unfair it all is.
When I'm having one of my worst moments, it is rare that I blame God. God and I have our own personal relationship that I don't expect you to understand. We have all sorts of chats in my head so I spend very little time in formal prayer. When I do, I thank God for the blessings I do have, ask forgiveness for my sins and ask that I be given admittance to heaven when my time comes. I tell people that I will pray for them or keep them in my prayers all the time and some of them probably believe that I have a list at the end of my formal prayers when I ask God to bless the list of people. I can't do that because it's inevitable that I will leave someone off. I also do not ask him to cure me of Chiari and pain.
The truth is that I do not understand God intellectually. If I start listing all of the arguments against his existence, I'm bound to have an agnostic moment. Instead of asking why over and over, I chalk it all up to mysteries that I'm not supposed to be able to understand. Faith is the greatest mystery in the world. It makes no sense whatsoever and yet I jump in over and over. There's a prayer I've heard where someone asks for a simple man's faith but I'm not a simple man. I was blessed with the double edged sword of intelligence. I don't ask God to help me feel better medically because that's what doctors are for. There's one main exception to this rule and that's the black moods I get in the middle of the night. I made a promise to God that I would live as long as he chooses and God makes time pass so those black moods always pass as well.
I've been accused of dodging questions once or twice in my life and this is a classic case of a good chance to dodge. I can't do it this time because I write this blog to help educate people about dealing with chronic pain and other symptoms. Crises of faith are just another part of that. It's just another symptom. So, ask me how I mix God, the ultimate force of love and healing, with this awful condition that hurts so much?
The truth is that I don't mix Chiari and God. I take the entire state of being known as my life and look for God in that. Once upon a time, I was relatively healthy and utterly miserable. I was surrounded on all sides by cruelty and I wanted nothing more than to return that cruelty with interest where much of my world was concerned. I didn't believe that I was capable of adding anything good to this world. One day, I found myself treated with kindness and respect by a young woman. Absorbing that kindness changed me. I didn't understand it at all for a long time but I absorbed it and decided to treat people around me with different variations on what I had learned. Even bullies gave up or found larger people offering to show them what being bullied is like if they didn't stop. They stopped.
That young woman also showed me ways of avoiding mistreatment without resorting to hostility. I wanted to stop time right there and spend eternity being appreciated but God had other people ahead who would show me various forms of love. Finally, I met Melissa and she loved me as completely as I love her. Only Melissa was going to be able to stand by my side as an equal and help me deal with the greatest crises of my life. How could I deal with the abuse of having a family who didn't like me at all. They wanted to mold me into some sort of copy of them sending me to the bullying school in hope that I would become a better clone there. I was just lucky that the faculty and staff at the bullying school was so good. Most of the teachers there offered small pockets of the freedom to try myself.
Melissa got me away from the constant disapproval physically. I moved away and learned to live without the reinforcement of always feeling inadequate. She challenges the issues that stick to me. When I realized that pain management is a full time job, I had this nagging feeling that I was a failure for giving up. Melissa helped me trust my instincts that moving on isn't giving up.
So, how do God and Chiari mix? Chiari is a small part of my very blessed life and it is one of the worst parts. I'm lucky enough to be living the dream along with the nightmare. I'm happily married with three young daughters who happen to be cats. We have a roof over our heads due to my parents' very complex love for me even though they can't stand me. Thanks to our insurance company, we have ceilings and proper floors again. Chances are that I'll be thanking God for the chance to indulge in that man made miracle combination of booze and good music.
There are days when the bad in my life seems to blot out the good. Chances are that I will be crushed by pain soon since I have written so much. (There's a fiction project growing in another window.) This blog is proof that it's okay to grumble on the days with more pain than usual so I will if it comes to that. I got to celebrate through my art and that is a joy.
Have the best New Year you can have, guys.
Tuesday, December 31, 2013
Saturday, December 28, 2013
Sorting Things Out
I am adjusting to life again after time spent hurting as much as I ever have before. There was nothing I could do about it except sleep when I could and knock myself out as close to unconscious as I could when I couldn't sleep. Pain medication wasn't doing much of anything in the wake of weather that went from unseasonably warm to snow straight to a shockingly warm spell. While everyone I knew except Melissa enjoyed this bout of "good weather," I couldn't even be grouchy about it through the pain. Now, I feel well enough for boredom to have set in again but it doesn't take that much. I bore easily.
There is fear mixed in the boredom, of course. I'm no stranger to pain. In fact, a normal day involves a few hours of pain only made bearable through some scary narcotics. This was something different that I am still trying to understand. The pain at the hotel and just as I got home was the pain of exhaustion. I needed rest and I needed sleep of the in bed variety which I resist because of its unpleasant side effects. It was very difficult to overcome but then it seemed to stop but it was replaced by a variation of the exhaustion pain where I was either dosing in my chair or doing my best to keep crying out to a minimum.
Last night, I expected to find the agony again but I was greeted by what you might call moderate pain instead. What do you do for moderate pain again? I took my meds and rested but was awake almost all day. When I tried to sleep, I was confronted with dreams that had the frantic pace of nightmares but with details that seemed pleasant at the time. These dreams involved joining very intense organizations with very enthusiastic people. These people were so intense that they were carrying me along much of the time in the literal sense but they could not see how I was holding them up. Carried along by their enthusiasm, I fought to contribute all I could but then I felt restrained. The dream decided that I was late meeting up with my father who was driving me home to his house.
After enduring lectures on my poor performance, I was told that I had kept an old friend waiting so long that there would be time for nothing more than a hello. In truth, I barely caught a glimpse of her and not enough to decide who she was. Strangely, I retained the image after waking and realized that she was no one. In the rush to make me feel as guilty as possible, my brain might have combined some facial features of two people whom I would enjoy seeing. Then again, the truth is that I know both of them are safe and reasonably happy so there was no desperation or heartache involved. The problem was that I figured out the sensation of being restrained quickly. Madeline and Meekers spent most of the night pinning me to the chair so I had to go through several more rounds of the dream before I just about shouted a command that they will follow from time to time if I'm emphatic enough. "Everybody out of the pool!"
I might not have felt rested by I was no longer crushed by exhaustion so I ate a meal. Melissa made one of her amazing hams for Christmas dinner but I was much too sick that night to eat much. It's been that way pretty much straight through since my previous entry but this was a meal that both tasted good and I was able to finish. I'd like to claim that it was balanced but the best I can say is that I got up to get my own plate and that this meal consisted of ham with a simple version of Melissa's macaroni and cheese. It had diced tomatoes in it which happen to be a fruit.
This strength is fading without me doing more than showering and writing a couple of pages on the Zephyr project. It took one of my last two cups of coffee to get me to this point in the first place. As much as I prefer the neatness of the K-Cup system, I miss the utility of the pot of coffee that strengthened as it sat out. All I needed to do was heat it up and one coffee making effort could last me for days.
I don't want to go to sleep now. Melissa is home, if sleeping, now and she'll be at work later so that's when I want to sleep. I'd rather sleep later and risk the pain than to miss seeing her off.
It turns out that today is Saturday and not Sunday like I believed when I was grumbling about Melissa's night shift. She is working a mid-shift today. It's also true that today is Saturday and not Friday the way my pill container would indicate. It seems that I failed to take an entire day's worth of meds somewhere in there. My best guess is that it happened during one of the lost days when I slept too much. It could also have been the cause or effect of one of those horrible pain days. I could wear myself out making guesses.
When I learned that Melissa was working a mid-shift instead of a night shift, I was able to stay up to see her off and then I got a couple hours of napping in. I felt refreshed instead of entombed so I continued working on excavating the area around my chair. The process is moving along nicely but there's a sort of frustration inherent in this kinda work. Instead of organizing and paring down the stuff that was packed away for nearly a year, I am merely clearing away the debris from those days of intense pain. Progress is progress and I've learned to take my victories where I can get them. I can't depend on achieving big victories with any regularity
In any case, my body is still sorting itself out after locking down to deal with all the pain. What my body wants is another nap and I'm hoping to give it just that.
There is fear mixed in the boredom, of course. I'm no stranger to pain. In fact, a normal day involves a few hours of pain only made bearable through some scary narcotics. This was something different that I am still trying to understand. The pain at the hotel and just as I got home was the pain of exhaustion. I needed rest and I needed sleep of the in bed variety which I resist because of its unpleasant side effects. It was very difficult to overcome but then it seemed to stop but it was replaced by a variation of the exhaustion pain where I was either dosing in my chair or doing my best to keep crying out to a minimum.
Last night, I expected to find the agony again but I was greeted by what you might call moderate pain instead. What do you do for moderate pain again? I took my meds and rested but was awake almost all day. When I tried to sleep, I was confronted with dreams that had the frantic pace of nightmares but with details that seemed pleasant at the time. These dreams involved joining very intense organizations with very enthusiastic people. These people were so intense that they were carrying me along much of the time in the literal sense but they could not see how I was holding them up. Carried along by their enthusiasm, I fought to contribute all I could but then I felt restrained. The dream decided that I was late meeting up with my father who was driving me home to his house.
After enduring lectures on my poor performance, I was told that I had kept an old friend waiting so long that there would be time for nothing more than a hello. In truth, I barely caught a glimpse of her and not enough to decide who she was. Strangely, I retained the image after waking and realized that she was no one. In the rush to make me feel as guilty as possible, my brain might have combined some facial features of two people whom I would enjoy seeing. Then again, the truth is that I know both of them are safe and reasonably happy so there was no desperation or heartache involved. The problem was that I figured out the sensation of being restrained quickly. Madeline and Meekers spent most of the night pinning me to the chair so I had to go through several more rounds of the dream before I just about shouted a command that they will follow from time to time if I'm emphatic enough. "Everybody out of the pool!"
I might not have felt rested by I was no longer crushed by exhaustion so I ate a meal. Melissa made one of her amazing hams for Christmas dinner but I was much too sick that night to eat much. It's been that way pretty much straight through since my previous entry but this was a meal that both tasted good and I was able to finish. I'd like to claim that it was balanced but the best I can say is that I got up to get my own plate and that this meal consisted of ham with a simple version of Melissa's macaroni and cheese. It had diced tomatoes in it which happen to be a fruit.
This strength is fading without me doing more than showering and writing a couple of pages on the Zephyr project. It took one of my last two cups of coffee to get me to this point in the first place. As much as I prefer the neatness of the K-Cup system, I miss the utility of the pot of coffee that strengthened as it sat out. All I needed to do was heat it up and one coffee making effort could last me for days.
I don't want to go to sleep now. Melissa is home, if sleeping, now and she'll be at work later so that's when I want to sleep. I'd rather sleep later and risk the pain than to miss seeing her off.
It turns out that today is Saturday and not Sunday like I believed when I was grumbling about Melissa's night shift. She is working a mid-shift today. It's also true that today is Saturday and not Friday the way my pill container would indicate. It seems that I failed to take an entire day's worth of meds somewhere in there. My best guess is that it happened during one of the lost days when I slept too much. It could also have been the cause or effect of one of those horrible pain days. I could wear myself out making guesses.
When I learned that Melissa was working a mid-shift instead of a night shift, I was able to stay up to see her off and then I got a couple hours of napping in. I felt refreshed instead of entombed so I continued working on excavating the area around my chair. The process is moving along nicely but there's a sort of frustration inherent in this kinda work. Instead of organizing and paring down the stuff that was packed away for nearly a year, I am merely clearing away the debris from those days of intense pain. Progress is progress and I've learned to take my victories where I can get them. I can't depend on achieving big victories with any regularity
In any case, my body is still sorting itself out after locking down to deal with all the pain. What my body wants is another nap and I'm hoping to give it just that.
Friday, December 20, 2013
Could Be Worse
After two days of almost continuous sleep, I returned from the dead to be greeted by pain. It wasn't horrifying pain. I could hear the voice of some poor well intentioned person telling me that it could be worse. Yes, it could be worse and it isn't so I should be grateful and I am to some degree. The other side of the coin is that it seems as if this is the right time to stop or scale back my emergency pain control measures. I must start being more careful about my use of the liquid anesthesia more commonly known as beer. I never drink bad beer and rarely drink anything in the neighborhood of average so liquid anesthesia isn't cheap.
When things were at their worst in terms of pain, Melissa made sure I had some decent Belgian (or Belgian style) beer on hand. I was suffering on one hand yet the nectar of the gods kept me happy on another. After a while, the pleasant feeling of the alcohol joined the wonderful taste and put the worst of the pain in a place where it felt as if I were experiencing the pain of someone else. It was far from pleasant as if someone I cared about deeply (but not as much as I care for Melissa) was in pain and I felt unhappy about it. This was matched by the guilty feeling known as "better you than me" but the guilt didn't spiral. After all, the pain was mine and the barrier I used against it was a trance thing not an actual transfer of misfortune.
In any case, the reality of it all is that I am sitting here at my desk with a pain cocktail (not a pain control cocktail but a combination of symptoms) of fibromyalgia's muscle burn, the arthritis "bone ache" where it feels as if someone kicked my arms a bunch of times yesterday, the sore joints that feel like they are swollen though they are not yet. I don't have any actual swelling yet. I don't have a sleep deprivation headache despite the fact that I know it is coming. The real pain is coming but, as the joke ran in college, so is Christmas.
Melissa and I have a life that I am determined to live while coping with the pain. We have cats to care for and maintain in a continuous state of "spoiled rottenness." We have a house to reassemble out of more boxes than I knew existed and a system to set up to care for it. I have a writing career to get off the ground which means setting up the interrelationships of the crew and passengers of the space liner, S.S. Zephyr, at the moment. Without believable relationships, it won't matter how neat life on a luxury liner in space is. Science fiction is driven by real life human drama.
It is going to hurt but I have exactly zero chance of living the dream by doing nothing. I remain terrified by the mere possibility that I have the wrong price for the house repair. The right number means that I could get a bank check for the full amount as early as Monday. If it's the higher number, I will need a few months. It is potentially an honest mistake at worst. I'm willing to presume an honest mistake where the missing TV is concerned but I would be ecstatic to receive the same consideration in return. It seems to be the best possible outcome.
In the midst of all this pain and stress of reentering my life, Melissa reminded me yet again why she's my best girl, my dream girl and the wifey I'd choose every time all over. She had told me that she was going to re-bandage my feet where heel blisters had broken open and gotten ugly. I had bled through my sock and she told me that she was going to treat my feet as soon as I showered. A considerate person would have stopped what he was doing that very moment, showered and thanked her a million times while she bandaged. I'm just not very considerate.
The truth is that I had a headache that made standing intolerable. By the time medication made it possible, I showered but my poor wifey was tuckered out asleep in bed. I showered and joined her sleeping on my stomach so that I was less likely to bleed on the sheets. I woke to the very slight disturbance of Melissa disinfecting and bandaging my wounded feet. More than that, she knew I hadn't slept well at the hotel so she was trying to do this without waking me. I'm not a total schmuck. She caught me cooperating by holding my feet up on cue or else I would have let her not wake me. She still all but succeeded because I was only awake for a few seconds at a time and went back to sleep immediately after she finished.
Isn't that about the sweetest thing you've ever heard? Go ahead and be jealous because you can't have her.
When things were at their worst in terms of pain, Melissa made sure I had some decent Belgian (or Belgian style) beer on hand. I was suffering on one hand yet the nectar of the gods kept me happy on another. After a while, the pleasant feeling of the alcohol joined the wonderful taste and put the worst of the pain in a place where it felt as if I were experiencing the pain of someone else. It was far from pleasant as if someone I cared about deeply (but not as much as I care for Melissa) was in pain and I felt unhappy about it. This was matched by the guilty feeling known as "better you than me" but the guilt didn't spiral. After all, the pain was mine and the barrier I used against it was a trance thing not an actual transfer of misfortune.
In any case, the reality of it all is that I am sitting here at my desk with a pain cocktail (not a pain control cocktail but a combination of symptoms) of fibromyalgia's muscle burn, the arthritis "bone ache" where it feels as if someone kicked my arms a bunch of times yesterday, the sore joints that feel like they are swollen though they are not yet. I don't have any actual swelling yet. I don't have a sleep deprivation headache despite the fact that I know it is coming. The real pain is coming but, as the joke ran in college, so is Christmas.
Melissa and I have a life that I am determined to live while coping with the pain. We have cats to care for and maintain in a continuous state of "spoiled rottenness." We have a house to reassemble out of more boxes than I knew existed and a system to set up to care for it. I have a writing career to get off the ground which means setting up the interrelationships of the crew and passengers of the space liner, S.S. Zephyr, at the moment. Without believable relationships, it won't matter how neat life on a luxury liner in space is. Science fiction is driven by real life human drama.
It is going to hurt but I have exactly zero chance of living the dream by doing nothing. I remain terrified by the mere possibility that I have the wrong price for the house repair. The right number means that I could get a bank check for the full amount as early as Monday. If it's the higher number, I will need a few months. It is potentially an honest mistake at worst. I'm willing to presume an honest mistake where the missing TV is concerned but I would be ecstatic to receive the same consideration in return. It seems to be the best possible outcome.
In the midst of all this pain and stress of reentering my life, Melissa reminded me yet again why she's my best girl, my dream girl and the wifey I'd choose every time all over. She had told me that she was going to re-bandage my feet where heel blisters had broken open and gotten ugly. I had bled through my sock and she told me that she was going to treat my feet as soon as I showered. A considerate person would have stopped what he was doing that very moment, showered and thanked her a million times while she bandaged. I'm just not very considerate.
The truth is that I had a headache that made standing intolerable. By the time medication made it possible, I showered but my poor wifey was tuckered out asleep in bed. I showered and joined her sleeping on my stomach so that I was less likely to bleed on the sheets. I woke to the very slight disturbance of Melissa disinfecting and bandaging my wounded feet. More than that, she knew I hadn't slept well at the hotel so she was trying to do this without waking me. I'm not a total schmuck. She caught me cooperating by holding my feet up on cue or else I would have let her not wake me. She still all but succeeded because I was only awake for a few seconds at a time and went back to sleep immediately after she finished.
Isn't that about the sweetest thing you've ever heard? Go ahead and be jealous because you can't have her.
Thursday, December 19, 2013
Almost Done
A crew of contractors has finished fixing the damage to my house at long last. The work didn't take all that long. It was more a case of getting money together and trying to clean the house and looking for a time when they were available while we could leave here and remain in range to handle anything that came up. Normally, I refer to this task as putting out small fires but I didn't wish to tempt fate this time. All that remains is the task of getting the right amount of money in the right person's hands. You never know. I might end up with some cash headed my way after I pay out the full amount paid to me according to the estimate.
The next task will be a labor of love that could take a very long time. We have all these boxes to unload some of which will end up thrown away or donated because we will decide that there is no more room for it all. The effort involved in all of this will be so daunting that it is painful to think about literally. This is what moving in should have been like if we had taken the time to do it right. With no one making sarcastic comments about us taking on electives when we haven't finished requirements, it is something within reach. It could simply take a very long time. I'm thinking about something beyond a project or even a campaign. This might be the evolution of our home.
I've been thinking a lot about practical improvements. For one thing, we're using two second hand microwaves given to us when we were moving back in 2000-1. Since I used heat so much of the time for pain, it was imperative that the bag of special corn kernels fit into the oven. It only fit into the big microwave which had one serious flaw as well. It did not rotate so food cooked in it came out with an unreasonably amount of uneven heat. One food particle so hot that it would burn your mouth would be next to an ice crystal. My primary use of the kitchen these days is to brew herbal teas that relax away some pain but the tea kettle takes too long. It also hurts when it whistles. The hotel and my mother-in-law have microwaves with a beverage setting. I can brew a cup of herbal tea in a couple of minutes that is just as effective as the stuff that takes forever to cook. We could replace two microwaves with one, save space and come out ahead on pain control.
Also, I need to think ahead about falling on stairs. My recent lucky streak involving stairs seems to coincide with time spent in a first floor hotel room with no stairs. I may not need a stair lift for a decade but it's better to start preparing now. Beyond that, we may need to turn the first floor bathroom into a wheelchair accessible full bath. The need for that should be even further off but this is something that could be part of the house's evolution.
As strange as it sounds, this is me being optimistic. I'm writing about the future which implies belief that I will have a future. Part of me wonders how on Earth I can keep living with so much pain and how I will keep dragging myself forward when I can barely drag myself out of bed. Well, I'm calling this an evolutionary process when it would take most people my age a couple of weeks. I'm taking my disadvantages into account and turning them into advantages.So long as there is no expected due date, I can putter along like a poorly made golf cart.
Unfortunately, I have something new to worry about. There are two sets of numbers on my claim estimate. One looks just like what I agreed to and the other looks considerably more than that. No one has billed me for either amount yet but it's just something to make me twitch and give me nightmares.Thankfully, Melissa was with me when I discovered this. She reminded me of all my tricks that I've used over the years to make it through worst case scenarios. We're also concerned that there is no reference to the ruined furniture that the adjuster agreed was covered. I'm trying to hang on to the idea that I can trust what I was told. That would be a $500 deductible with most things covered.
Oh, well. I asked for clarification and it will come eventually.
The next task will be a labor of love that could take a very long time. We have all these boxes to unload some of which will end up thrown away or donated because we will decide that there is no more room for it all. The effort involved in all of this will be so daunting that it is painful to think about literally. This is what moving in should have been like if we had taken the time to do it right. With no one making sarcastic comments about us taking on electives when we haven't finished requirements, it is something within reach. It could simply take a very long time. I'm thinking about something beyond a project or even a campaign. This might be the evolution of our home.
I've been thinking a lot about practical improvements. For one thing, we're using two second hand microwaves given to us when we were moving back in 2000-1. Since I used heat so much of the time for pain, it was imperative that the bag of special corn kernels fit into the oven. It only fit into the big microwave which had one serious flaw as well. It did not rotate so food cooked in it came out with an unreasonably amount of uneven heat. One food particle so hot that it would burn your mouth would be next to an ice crystal. My primary use of the kitchen these days is to brew herbal teas that relax away some pain but the tea kettle takes too long. It also hurts when it whistles. The hotel and my mother-in-law have microwaves with a beverage setting. I can brew a cup of herbal tea in a couple of minutes that is just as effective as the stuff that takes forever to cook. We could replace two microwaves with one, save space and come out ahead on pain control.
Also, I need to think ahead about falling on stairs. My recent lucky streak involving stairs seems to coincide with time spent in a first floor hotel room with no stairs. I may not need a stair lift for a decade but it's better to start preparing now. Beyond that, we may need to turn the first floor bathroom into a wheelchair accessible full bath. The need for that should be even further off but this is something that could be part of the house's evolution.
As strange as it sounds, this is me being optimistic. I'm writing about the future which implies belief that I will have a future. Part of me wonders how on Earth I can keep living with so much pain and how I will keep dragging myself forward when I can barely drag myself out of bed. Well, I'm calling this an evolutionary process when it would take most people my age a couple of weeks. I'm taking my disadvantages into account and turning them into advantages.So long as there is no expected due date, I can putter along like a poorly made golf cart.
Unfortunately, I have something new to worry about. There are two sets of numbers on my claim estimate. One looks just like what I agreed to and the other looks considerably more than that. No one has billed me for either amount yet but it's just something to make me twitch and give me nightmares.Thankfully, Melissa was with me when I discovered this. She reminded me of all my tricks that I've used over the years to make it through worst case scenarios. We're also concerned that there is no reference to the ruined furniture that the adjuster agreed was covered. I'm trying to hang on to the idea that I can trust what I was told. That would be a $500 deductible with most things covered.
Oh, well. I asked for clarification and it will come eventually.
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