I've had more trouble writing this particular entry than any I can recall writing before. I've spent most of the previous week muddling around in what you might call a state. At first, I thought it was purely physical. The Chiari symptoms seem to be part punishment and part balancing mechanism. At first, I was on a high like I've only experienced a few times since I got sick. I was paying attention to the other side of writing at last by getting my work "out there" as I've been telling Melissa. At the same time, it wasn't truly out there as in available for potentially hostile individuals. I'd sent the link to download a few selected pieces to a few friends who knew me to varying degrees.
My high got even higher when I had information drop into my lap on Facebook. An old friend is happy, healthy and as fully engaged in life as ever. I'll give myself a little more credit than that. When I decided that I wanted to run down a list of names, there was my friend sitting right there in the open but with a new name. She managed to find her someone and get married just as I had. Maybe I was giddy from my time spent awake but I set aside my usual reticence and desire to have a decision surrounded on all sides before taking it. I sent a Facebook message which I do not think has been received but there is no way to know for sure. Some part of me that is still nursing wounds from old high school and college battles fears the rejection I'd see in no reply. I've always been one to avoid provoking others to anger or frustration, I have suppressed my urge to follow up. It might not be considered harassment or anything like that but I don't have to cross legal lines to disappoint myself. I suppose I'll wait a while longer then attempt another re-introduction.
Within hours of sending this message, I was crushed by fatigue and vulnerability. I'd been awake for 72 hours or longer in pain. Certainty went away along with the arguably manic energy I used to try marketing my work. There is a lot of uncertainty when you set out to write fiction for a living but this was different. I mentioned the many layers of uncertainty with my old friend. They range from the technical to practical matters like being priority 11 on a day with 10 slots in it which is something that causes me to not return messages and emails but then there are the old wounds which cause me less rational doubts. My temporary physical deterioration combined with the old wounds and the doubts inherent in writing for others to see until it became something different.
Thanksgiving wasn't really a day of giving thanks for me as a child. It was a day for earning my oxygen in front of a wider audience than usual. I have to be doing pretty badly to fall back on trying to earn my oxygen already but this was worse. I tried to measure my worth in the world with a few well placed sallies from inside my little fortress. The result was pain, exhaustion and silence. In my dazed state, I took quiet to mean an ominous silence. For some reason, I made excuses to discount the people who did express caring and I'm sorry for that. When I'm trying to justify my use of public oxygen, it is because I believe that I am in deficit. I feel the need to move mountains and too weak to raise my head for long.
I need to shift my thinking. People are distracted by the holidays while I look for distractions from the holidays. All that blaring joy hurts.
Friday, November 29, 2013
Sunday, November 24, 2013
Overdoing It
I should get a theme song one of these days so I can just play it instead of explaining how my mind got ahead of my body once again. I have an author's page on Facebook now where you can get three of my favorite recent works of fiction if I know you and trust you to not distribute it. It was easy to set up and I actually copy and pasted the catalog to the new page. Of course, I've been trying to clean some in advance of the house repair that should be happening soon. That involved backing up a phone call to the insurance adjustor in case I was mistaken and the contractor was not supposed to inform him. It also helps to offer friendly reminders when you need a favor from someone somewhere. I'm not sure whether this would count as a favor or an ADA requirement but I'm not going to be able to live here while people are banging hammers, etc.
In any case, I've been frustrated by how long it has been taking me to write the new novel. I have no idea when I'll be ready to declare the first draft of "Professor Pruitt" finished if I don't decide that the whole idea was terrible anyway. The gears in my head threatened to strip on me. I have people who have "liked" my author page mostly because they are my friends. A couple of people have drafts out from the Adobe Acrobat server but they do not want me sitting behind them looking over their shoulders and flinching every time I think they might be frowning. At least two of these victims...err....volunteers are fellow chronic pain patients and have perfectly awful yet understandable reasons of their own to flinch.
Maybe something in my unfinished folders would generate a new idea for me but they ended up being discouraging. I stopped writing those drafts for good reasons. What about the old standby novels? No. Melissa came as close as she will come to asking me to drop that project and seemed very relieved when I spoke of it in the past tense. Those novels can be seen as my first investment of serious time and energy in writing.
The adrenaline rush wore off and the arthritis kicked in. Before I could reach a full scale panic attack, I remembered that I was overdue for my nice calming medicine. I was hit with a brief case of title envy when I saw a link to something on Facebook called "The Klonopin Diaries" or something very close to that. Unfortunately, it could very well have been a non-fiction account of someone living with a panic disorder. I take my Klonopin for sleep since my mind refuses to shut down at bedtime yet it never has done much of anything that I've noticed. Melissa says she can tell the difference and I made her my coach in such matters for one of the million or so reasons why I married her. I trust her to look out for me.
My beloved is a very good coach. I was sitting here fretting because I don't have a reasonably professional looking picture of me taken in the last decade to use on my author's page. I know. It's a bit too ballsy of me to call it an author's page based on a lot of unpublished work so I listed this as my official site. I also threw an age restriction on there because I don't want Facebook to sue me for dropping the f-bomb every so delicately the way I do. Obviously, I've been posting links to these posts on my main FB page and my Twitter feed so making the author page 18+ won't affect anyone who wants me relax and not give a shit about my fucking language.
It's almost 4:30 AM and I'm having serious thoughts about my fourth cup of coffee in the last 24 hours. I could drink some herbal tea instead and I really should get away from my keyboard. If I start a major writing project at 4:30 AM while my arthritis is bad, I'm asking to a 10+ Chiari headache. This career thing will take time. Managing agonizing pain is my full-time job as much as I'd prefer writing. I need to go use my nice PS3 in my comfy chair where I will fall asleep if the need strikes. Up here at my desk, I will start pacing when the need hits. I haven't fallen down the stairs in a while. Yes, go sit in the comfy chair and be a good cat daddy.
I think I'm experiencing a case of what fellow Chiari blogger, Brian Murphy, wrote about recently. He is upset that so many Chiarians he knows aren't making it. The fact that you know you will experience agonizing pain for a significant part of the day is a bit of a downer. I deal with this in a number of ways. First of all, I have my beloved's support. Melissa is a treat to be around on a daily basis. She understands that pain control is a full time job except that it doesn't stop at 40 hours/week and the pay... Okay. The the disability pay is something to be thankful for though it is not a gift. I paid into the SSDI system with everyone else and then I bought extra private disability insurance because it seemed like the smart thing to do. Treating it as a gift is one of those traps that can lead to the ultimate disability trap. "Have I earned my oxygen today?"
In my case, I go on absurdly difficult mental quests. Get my fiction published not just once but on an ongoing basis. Find people who mattered in the past so that I can tell them how much mattered. There has been someone on top of that list for a long time. I ran into her accidentally in the Summer of 1993 and then she disappeared. I went into total brain lock back then before it was one of my symptoms and so I never told her and I've been trying to make up for it ever since. Of course, saying that I spent the last 20 years doing anything would be an exaggeration. Since 1999, my life has been about Melissa and pain management more than anything else. Every once in a while, I found myself looking for a short list of people for an hour or two. I found one of them about a decade ago but she asked me to not tell anyone where she was so I found it easier to pretend that she was still missing.
I found another one this morning. I hadn't seen her or heard anything from her since the Summer of 1993. How could someone avoid running into me even accidentally over all that time? Well, it probably starts with moving somewhere outside the Small World boundaries and ended with getting your own life. She might or might not contact me but I told someone that I would be happy enough just to know that she is alive, healthy and happy somewhere. Another impossible quest has succeeded so it would probably be smart to take a day or two off.
After all, the last thing I want to do is embark on another quest without getting a decent day of sleep first. Must remember that a watched inbox never fills.
In any case, I've been frustrated by how long it has been taking me to write the new novel. I have no idea when I'll be ready to declare the first draft of "Professor Pruitt" finished if I don't decide that the whole idea was terrible anyway. The gears in my head threatened to strip on me. I have people who have "liked" my author page mostly because they are my friends. A couple of people have drafts out from the Adobe Acrobat server but they do not want me sitting behind them looking over their shoulders and flinching every time I think they might be frowning. At least two of these victims...err....volunteers are fellow chronic pain patients and have perfectly awful yet understandable reasons of their own to flinch.
Maybe something in my unfinished folders would generate a new idea for me but they ended up being discouraging. I stopped writing those drafts for good reasons. What about the old standby novels? No. Melissa came as close as she will come to asking me to drop that project and seemed very relieved when I spoke of it in the past tense. Those novels can be seen as my first investment of serious time and energy in writing.
The adrenaline rush wore off and the arthritis kicked in. Before I could reach a full scale panic attack, I remembered that I was overdue for my nice calming medicine. I was hit with a brief case of title envy when I saw a link to something on Facebook called "The Klonopin Diaries" or something very close to that. Unfortunately, it could very well have been a non-fiction account of someone living with a panic disorder. I take my Klonopin for sleep since my mind refuses to shut down at bedtime yet it never has done much of anything that I've noticed. Melissa says she can tell the difference and I made her my coach in such matters for one of the million or so reasons why I married her. I trust her to look out for me.
My beloved is a very good coach. I was sitting here fretting because I don't have a reasonably professional looking picture of me taken in the last decade to use on my author's page. I know. It's a bit too ballsy of me to call it an author's page based on a lot of unpublished work so I listed this as my official site. I also threw an age restriction on there because I don't want Facebook to sue me for dropping the f-bomb every so delicately the way I do. Obviously, I've been posting links to these posts on my main FB page and my Twitter feed so making the author page 18+ won't affect anyone who wants me relax and not give a shit about my fucking language.
It's almost 4:30 AM and I'm having serious thoughts about my fourth cup of coffee in the last 24 hours. I could drink some herbal tea instead and I really should get away from my keyboard. If I start a major writing project at 4:30 AM while my arthritis is bad, I'm asking to a 10+ Chiari headache. This career thing will take time. Managing agonizing pain is my full-time job as much as I'd prefer writing. I need to go use my nice PS3 in my comfy chair where I will fall asleep if the need strikes. Up here at my desk, I will start pacing when the need hits. I haven't fallen down the stairs in a while. Yes, go sit in the comfy chair and be a good cat daddy.
I think I'm experiencing a case of what fellow Chiari blogger, Brian Murphy, wrote about recently. He is upset that so many Chiarians he knows aren't making it. The fact that you know you will experience agonizing pain for a significant part of the day is a bit of a downer. I deal with this in a number of ways. First of all, I have my beloved's support. Melissa is a treat to be around on a daily basis. She understands that pain control is a full time job except that it doesn't stop at 40 hours/week and the pay... Okay. The the disability pay is something to be thankful for though it is not a gift. I paid into the SSDI system with everyone else and then I bought extra private disability insurance because it seemed like the smart thing to do. Treating it as a gift is one of those traps that can lead to the ultimate disability trap. "Have I earned my oxygen today?"
In my case, I go on absurdly difficult mental quests. Get my fiction published not just once but on an ongoing basis. Find people who mattered in the past so that I can tell them how much mattered. There has been someone on top of that list for a long time. I ran into her accidentally in the Summer of 1993 and then she disappeared. I went into total brain lock back then before it was one of my symptoms and so I never told her and I've been trying to make up for it ever since. Of course, saying that I spent the last 20 years doing anything would be an exaggeration. Since 1999, my life has been about Melissa and pain management more than anything else. Every once in a while, I found myself looking for a short list of people for an hour or two. I found one of them about a decade ago but she asked me to not tell anyone where she was so I found it easier to pretend that she was still missing.
I found another one this morning. I hadn't seen her or heard anything from her since the Summer of 1993. How could someone avoid running into me even accidentally over all that time? Well, it probably starts with moving somewhere outside the Small World boundaries and ended with getting your own life. She might or might not contact me but I told someone that I would be happy enough just to know that she is alive, healthy and happy somewhere. Another impossible quest has succeeded so it would probably be smart to take a day or two off.
After all, the last thing I want to do is embark on another quest without getting a decent day of sleep first. Must remember that a watched inbox never fills.
Tuesday, November 19, 2013
Logic Puzzle
You have to take your entertainment where you can get it. I happen to take a certain perverse pleasure in the logical puzzles my symptoms provide. Do you remember logic puzzles as a kid? You would get a subject and a list of clues. The subject might be something like "Summer Activities" and the clues would run along the lines sentences like "Martha hates swimming." You would make up a matrix with the activities or names across the top and the other down the side. Eventually, you would learn that Billy likes boating and X out the other names for boating and the other activities for Billy. You would be able to narrow down Martha's preferences to the other three choices and go from there.
My logic puzzles would have to be three dimensional because you would need to be able to list activities, symptoms that prevent those activities and things to moderate or aggravate symptoms. Right now, we're moving into cold weather so my arthritis is acting up. It's been a bad year for arthritis in general but there is always room for decline. It is difficult to do anything with my arms or hands during a flareup but I can count on passive activities more because the boredom counts less during immediate pain. Drinking chamomile tea helps calm me and warms my hands which I can't bundle effectively and so I drink more of it in arthritis peak season. Then again, I refuse to give up writing altogether for any given season so I accept a pain increase which makes me want more tea which makes me sleepy.
Stress headaches are the worst for logical puzzles. The best way to make inroads against pain is to stop what you're doing that aggravated the symptom in the first place. Try doing that with stress headaches. I can stress about not being able to stop stressing over the original problem so that's pretty much out. There are two main tricks for dealing with stress headaches. One is learning to take breaks. The utility company that is threatening to cut me off is closed until Monday so I don't have to think about it on Saturday or Sunday. The other is attacking the problem once properly medicated and all. Utilities are a useful example since I'm not in trouble with them right now. (That's twice my knee twitched and hit my bottom desk drawer when I've asserted a lack of specific trouble. Honestly, bill paying time starts this Wednesday!)
Utilities are a great example because they don't make money by shutting you down. Paying them in full is the best solution but most are willing to take the maximum interest penalty allowable by law plus small fines to not shut you down. It tends not to add up to that much in what you pay them but I don't want anyone thinking that a corporation is doing something out of the kindness of its heart. Corporations have boards of directors expressly required to eliminate any heart and soul from consideration in favor of keeping stock prices high. Businesses can be owned by individuals who often have good hearts. You can stay warm by taking a deal from the power company, reduce your stress level and they make money on the deal.
Relationship stress is actually tougher than monetary stress most of the time. Of course, monetary stress is the most commonly cited cause of relationship stress. Don't ask it to make sense. It will simply snarl at you as the cycle spins faster. I am defining relationship stress as broadly as possible here and recognizing subsets which I will ignore for the moment. We all know about marital stress, parent/child stress and various kinds of friendship stress. If you live with and love someone who is driving you out of your freaking mind, there is no easy answer. Therefore, said loved one might make you explain something obvious to you for the fifteenth time that day. Given that you do not wish to hurt them, your options for dealing with the loved one are limited.
Try making a logical puzzle out of two adults living together. Drink some chamomile tea and reduce the headache but be prepared to hear about it should you not wash the mug fast enough. If you take too long, you might end up worse off than when you began. Relationship deafness is a good tactic although you run the risk of ignoring a serious concern. The good news there is that you spend much of your life learning what's safe to ignore and what isn't.
Unlike those logic puzzles of old, symptom and pain puzzles usually involve a little of this and a little of that. My doctors and I used to talk of it all like a big old fashioned machine with a lot of knobs. If you turn one knob all the way up, you might feel pretty good for a while but that knob is likely to malfunction shortly. You need to learn how to turn each knob just enough to get the benefit you need with minimal risk. When it works, it can be great fun and a big boost to your morale. When it doesn't work, it can be interesting to figure out why. When a knob breaks and has to be replaced, it can be most interesting of all if painful. What can I replace this with that is similar enough to have the same effect but without being so close that it breaks right away.
If nothing else, finding new medical answers can lead to Han Solo quotes.
"This one goes here. That one goes there."
"Turn it off! Turn it off!" Said with small explosions in the background.
I know. I prefer to call it eccentricity.
My logic puzzles would have to be three dimensional because you would need to be able to list activities, symptoms that prevent those activities and things to moderate or aggravate symptoms. Right now, we're moving into cold weather so my arthritis is acting up. It's been a bad year for arthritis in general but there is always room for decline. It is difficult to do anything with my arms or hands during a flareup but I can count on passive activities more because the boredom counts less during immediate pain. Drinking chamomile tea helps calm me and warms my hands which I can't bundle effectively and so I drink more of it in arthritis peak season. Then again, I refuse to give up writing altogether for any given season so I accept a pain increase which makes me want more tea which makes me sleepy.
Stress headaches are the worst for logical puzzles. The best way to make inroads against pain is to stop what you're doing that aggravated the symptom in the first place. Try doing that with stress headaches. I can stress about not being able to stop stressing over the original problem so that's pretty much out. There are two main tricks for dealing with stress headaches. One is learning to take breaks. The utility company that is threatening to cut me off is closed until Monday so I don't have to think about it on Saturday or Sunday. The other is attacking the problem once properly medicated and all. Utilities are a useful example since I'm not in trouble with them right now. (That's twice my knee twitched and hit my bottom desk drawer when I've asserted a lack of specific trouble. Honestly, bill paying time starts this Wednesday!)
Utilities are a great example because they don't make money by shutting you down. Paying them in full is the best solution but most are willing to take the maximum interest penalty allowable by law plus small fines to not shut you down. It tends not to add up to that much in what you pay them but I don't want anyone thinking that a corporation is doing something out of the kindness of its heart. Corporations have boards of directors expressly required to eliminate any heart and soul from consideration in favor of keeping stock prices high. Businesses can be owned by individuals who often have good hearts. You can stay warm by taking a deal from the power company, reduce your stress level and they make money on the deal.
Relationship stress is actually tougher than monetary stress most of the time. Of course, monetary stress is the most commonly cited cause of relationship stress. Don't ask it to make sense. It will simply snarl at you as the cycle spins faster. I am defining relationship stress as broadly as possible here and recognizing subsets which I will ignore for the moment. We all know about marital stress, parent/child stress and various kinds of friendship stress. If you live with and love someone who is driving you out of your freaking mind, there is no easy answer. Therefore, said loved one might make you explain something obvious to you for the fifteenth time that day. Given that you do not wish to hurt them, your options for dealing with the loved one are limited.
Try making a logical puzzle out of two adults living together. Drink some chamomile tea and reduce the headache but be prepared to hear about it should you not wash the mug fast enough. If you take too long, you might end up worse off than when you began. Relationship deafness is a good tactic although you run the risk of ignoring a serious concern. The good news there is that you spend much of your life learning what's safe to ignore and what isn't.
Unlike those logic puzzles of old, symptom and pain puzzles usually involve a little of this and a little of that. My doctors and I used to talk of it all like a big old fashioned machine with a lot of knobs. If you turn one knob all the way up, you might feel pretty good for a while but that knob is likely to malfunction shortly. You need to learn how to turn each knob just enough to get the benefit you need with minimal risk. When it works, it can be great fun and a big boost to your morale. When it doesn't work, it can be interesting to figure out why. When a knob breaks and has to be replaced, it can be most interesting of all if painful. What can I replace this with that is similar enough to have the same effect but without being so close that it breaks right away.
If nothing else, finding new medical answers can lead to Han Solo quotes.
"This one goes here. That one goes there."
"Turn it off! Turn it off!" Said with small explosions in the background.
I know. I prefer to call it eccentricity.
Friday, November 15, 2013
First Day Back
In the way most people mean, I've been back from New York for a while now. I think it might even be a week or something close but the travel costs me a lot in pain. This might be my first day back from total convalescence. I started a downturn sometime back in September or October when the weather changed and I started getting excited about October. It might have been the weather or my body might not know the difference between eustress and distress. (I am so grateful to Mr. Mark Davis for an excellent lesson on the subject in Gym/Health class ever so long ago!) That's good stress and bad stress respectfully in the simplified terms I was ready to learn in grade school. It's the difference between anticipation and fear or the night before Christmas or the night before some big exam.
The distress followed in short order. Barbara Allen, my sister-in-law, was diagnosed with thyroid cancer in early October. Whether deserved or not, she has a little reputation for taking care of things in her own time. She knows what I mean. I'm all too happy to report that this was an exception and that she's cancer free in what seems like record time. I guess it's good to have a sprinter in the family. (Obviously, the time went slower for her and her recovery isn't quite over so don't go jumping all over her.) I'm more of a marathon man if I may extend the metaphor a little. Sometimes, I forget this in the heat of battle. (Just can't resist a mixed metaphor!) I want to win and be done now if not yesterday. I could barely resist taking it out on every loved one in sight but I'm not going to bash myself over it.
The fact is that my pain meds stopped working for the most part in October and then I had some guaranteed bad times that felt like someone was kicking me while I was down. I can handle that part quite well on my own. Thank you very much. There was some hope during my last full day in New York when I was able to get past the pain enough to enjoy MSNBC. They held out and kept their internet/cable long enough for me to have some entertainment while I was there and it was much appreciated. Nonetheless, the trip back home crushed this nascent recovery as expected.
Having read my last few posts, I decided to hold out until I could write something positive. While I maintain my position on the grouchy side of the Force, I don't want to chase everyone away with pure grumpiness. There are plenty of cute little kids out there being excessively brave to show us all that all we need to do is hope. That's not exactly how it works for them but it's harder to raise money for the various Children's Hospitals with ads about how Johnny doesn't want to take his medicine today because it tastes terrible or hurts going in and he feels sicker after taking it anyway. Maybe I'll find a way to make the concept work and write "Short Term Thinking Johnny" as an ad for them.
Now that I'm back to my normal levels of pain that I can handle even if they piss me off at times, it feels like a break from the pain. Honestly, the greatest danger is that I'll treat it like one, overdo something and then go backsliding. It isn't easy because all I want to do is write, write, write! It started with a recent burst of activity on the tablet because there's not much else I can do while virtually chair bound. I wrote my friend who never writes back because I knew she could sop up the activity. Oops! This was when she decided to write back and I found myself writing as fast as I could manage with stylus and tablet. Barbara would have let me use her PC or her laptop but neither would have worked well in the sofa bed or comfy chair I staked out for myself. Melissa did a great job picking out that tablet for me! My poor friend had to cry uncle but she was a big help just by responding on those days.
Let me offer a few quick reminders about my change of season tactics concerning chronic pain. For those of us with arthritis, we may have to choose between excess sweat and pain until the cold weather sets in for good. For me, I learned to take the sweat over my bitter objections. I used to think sweating was one of the worst things in the world and I still dislike it. On the other hand, my arthritis medicine doesn't work right without swaddling as a supplement. Oh! It might have helped to have confirmed that my doctor allowed a temporary increase in that medicine to help get me through what I call - with apologies to slightly aging women - the change. For those of you without my incredible doctors, please try to stay warm and bundled where you are sorest. You might find that a little temperature discomfort can go a long way for pain control and there's no chance of tolerance, addiction and I guess overdose of warmth/fire is the same risk for everyone.
Here I am up and out of my comfy chair and sitting in my writing chair and it's good for the soul.
The distress followed in short order. Barbara Allen, my sister-in-law, was diagnosed with thyroid cancer in early October. Whether deserved or not, she has a little reputation for taking care of things in her own time. She knows what I mean. I'm all too happy to report that this was an exception and that she's cancer free in what seems like record time. I guess it's good to have a sprinter in the family. (Obviously, the time went slower for her and her recovery isn't quite over so don't go jumping all over her.) I'm more of a marathon man if I may extend the metaphor a little. Sometimes, I forget this in the heat of battle. (Just can't resist a mixed metaphor!) I want to win and be done now if not yesterday. I could barely resist taking it out on every loved one in sight but I'm not going to bash myself over it.
The fact is that my pain meds stopped working for the most part in October and then I had some guaranteed bad times that felt like someone was kicking me while I was down. I can handle that part quite well on my own. Thank you very much. There was some hope during my last full day in New York when I was able to get past the pain enough to enjoy MSNBC. They held out and kept their internet/cable long enough for me to have some entertainment while I was there and it was much appreciated. Nonetheless, the trip back home crushed this nascent recovery as expected.
Having read my last few posts, I decided to hold out until I could write something positive. While I maintain my position on the grouchy side of the Force, I don't want to chase everyone away with pure grumpiness. There are plenty of cute little kids out there being excessively brave to show us all that all we need to do is hope. That's not exactly how it works for them but it's harder to raise money for the various Children's Hospitals with ads about how Johnny doesn't want to take his medicine today because it tastes terrible or hurts going in and he feels sicker after taking it anyway. Maybe I'll find a way to make the concept work and write "Short Term Thinking Johnny" as an ad for them.
Now that I'm back to my normal levels of pain that I can handle even if they piss me off at times, it feels like a break from the pain. Honestly, the greatest danger is that I'll treat it like one, overdo something and then go backsliding. It isn't easy because all I want to do is write, write, write! It started with a recent burst of activity on the tablet because there's not much else I can do while virtually chair bound. I wrote my friend who never writes back because I knew she could sop up the activity. Oops! This was when she decided to write back and I found myself writing as fast as I could manage with stylus and tablet. Barbara would have let me use her PC or her laptop but neither would have worked well in the sofa bed or comfy chair I staked out for myself. Melissa did a great job picking out that tablet for me! My poor friend had to cry uncle but she was a big help just by responding on those days.
Let me offer a few quick reminders about my change of season tactics concerning chronic pain. For those of us with arthritis, we may have to choose between excess sweat and pain until the cold weather sets in for good. For me, I learned to take the sweat over my bitter objections. I used to think sweating was one of the worst things in the world and I still dislike it. On the other hand, my arthritis medicine doesn't work right without swaddling as a supplement. Oh! It might have helped to have confirmed that my doctor allowed a temporary increase in that medicine to help get me through what I call - with apologies to slightly aging women - the change. For those of you without my incredible doctors, please try to stay warm and bundled where you are sorest. You might find that a little temperature discomfort can go a long way for pain control and there's no chance of tolerance, addiction and I guess overdose of warmth/fire is the same risk for everyone.
Here I am up and out of my comfy chair and sitting in my writing chair and it's good for the soul.
Wednesday, November 6, 2013
Sicker and Tireder
I'm wiped out. The only reason why I'm not predicting disaster and collapse is that I seem to do pretty well bluffing my way along with lousy cards. My pain doc appointment was frustrating and soothing at the same time. I got talked into letting them take my blood pressure which was the highest it has ever been but I think that is largely due to the fact that my arm is still throbbing. I feel like the very picture of my favorite grandmother who helped raise me early on. (Both of my parents were working so someone needed to take me!) She always seemed to be feeble, rarely left her chair and complained of arthritis all the time. I miss her dearly to this day and I don't expect that to change.
In a time when all my symptoms are spiking and I'm losing ground on my temper, there is one sign of hope. I don't spend as much time in my chair as I did a few years ago. In fact, I've written 2-3 marketable looking pieces in the last year. All told, that's probably around a thousand pages of work including multiple drafts. No, that wouldn't mean anything professionally but remember that my full time job is pain management. I do not remember a time when this favorite grandmother was active mentally or physically. I'm working on one of my serious projects nearly every day and I come off pretty well comparing myself to someone double my age who succumbed to presumed Alzheimer's.
There never has been a good apples to apples comparison for me. My parents used to compare me to the smartest kids in the school and I came out unfavorably. The other kids had other things going for them like healthy bodies and social lives so it was unfair for me to compare myself to them. My concentration was supposed to be on academics and nothing else. Even now, I wonder if I could drop down the pain scale if I simply did very little but listen to music.
Every month, I go to the pain doc and make the same report. I would probably be doing well but... This time, I admitted to an apparently endless series of buts. I'm just putting myself back together from being apart from Melissa for four days and I'll be leaving with her on another four day trip tomorrow. I plan on throwing everything I have into pain control yet I'm asking for it. November could easily be the worst month in memory. I do this willingly so that no one will shine a penlight into my eyes to make sure I'm alive. Someone at the pain doc's office asked why I haven't shaved or cut my hair. I explained but this nurse seems to think I've forgotten or something.
Hello! I'm still alive here. I'll cut my hair and shave when I am healthy enough to require a business appropriate appearance. Until then, I am gearing up for my 40th birthday purple Mohawk. After that, you never know. My birthday is awfully close to Halloween and all. Chances are that I won't be shaving off this much hair when it took me a few years to grow it all in the first place. Right now, it's a hedge against baldness. While I doubt it truly works this way, it seems as if it would be tougher to lose this much hair all at once. I think of it as a pet that's very difficult to kill accidentally. I wash it when I'm up to standing in the shower that long and blow it dry if Melissa is awake. It feels good moving around on my head somehow.
As a child and young adult, I wasted a lot of energy resisting grooming rituals. We're like birds getting our plumage just right for some mating ritual and I didn't want to be a bird. I felt like I was both too good for the stupid dance meant to show off on that animal level and that I was so bad that I could only fail if I tried. My mother sent me to the barber who was too good of a guy to get stuck in the middle of that pointless contest. He was such a good guy that I let down my guard around him. My mother stopped going there with me but sent me with the money. This is one case where I truly forgot what was going on and the barber decided that my family was good for it. I think I was suspected of sabotage but it was just forgetfulness.
The pain is going to force me to get to the point if nothing else. I went for my appointment determined to make no excuses. Things were not going to get better and I wanted something from them to recognize the months of pain. The first thing I got was flat out refusal. I was surprised and started to react badly when I remembered that I had rejected the change I was asking her to consider flat out because I read the monograph on it and determined that I was not a candidate and the main pain doc had agreed with me. We had rejected the other possible way to get me better medication because it involved minor surgery. We're talking outpatient stuff but I get nervous when surgery is mentioned. However, it sounded like my doctor was taking it off the table.
That's when I realized that we were not speaking the same language at that moment. I wanted pain relief not more narcotic medication. Therefore, we discussed changes that we could make around the periphery. We may or may not have intended to increase my arthritis medication. I'm not sure because the pharmacist says it exceeds the standard dosages but that he has an override to use. My doctor will let me know on Monday if I remember to call her. We increased by fibro medication to help deal with the muscle burn. That should help a lot and we kept me on the muscle relaxer which I take very sparingly.
I never identify the doctor or practice beyond "pain doc" for a number of reasons. One is that I have pragmatic doctors who are willing to let me try thinking outside the box. I have tacit permission to drink alcohol for pain management purposes despite the fact that most doctors would call this "self-medicating" and condemn patients for doing it. Maybe that's just mental health professionals who know that alcohol does not make you feel better about yourself. It's a mood booster in my experience. If you're sad, you'll get sadder. I've also seen it work but I guess I was more agitated than sad. I was scared about drinking too much though not by healthy person standards. We're not talking about drinking myself sick or even stupid. We're just talking about potential invisible effects on my liver.
That's when I heard the same three words from two different people. They are incredibly reassuring for how short they are. Melissa and my doctor both said, "I trust you." As long as good people are looking out for me, I can trust myself. Therefore, I will drink what I need to drink to dull the pain within my own paranoid limits until Melissa says when. Then I'll stop because I can't drive or walk to a liquor store.
Melissa says that things will get better. We'll get the house fixed even if it isn't done by our current contractor. We'll get to the plumbing which turns every shower into a wannabe bath. There will be a break in the stress somewhere. I'd like it to be soon at my favorite hotel.
In a time when all my symptoms are spiking and I'm losing ground on my temper, there is one sign of hope. I don't spend as much time in my chair as I did a few years ago. In fact, I've written 2-3 marketable looking pieces in the last year. All told, that's probably around a thousand pages of work including multiple drafts. No, that wouldn't mean anything professionally but remember that my full time job is pain management. I do not remember a time when this favorite grandmother was active mentally or physically. I'm working on one of my serious projects nearly every day and I come off pretty well comparing myself to someone double my age who succumbed to presumed Alzheimer's.
There never has been a good apples to apples comparison for me. My parents used to compare me to the smartest kids in the school and I came out unfavorably. The other kids had other things going for them like healthy bodies and social lives so it was unfair for me to compare myself to them. My concentration was supposed to be on academics and nothing else. Even now, I wonder if I could drop down the pain scale if I simply did very little but listen to music.
Every month, I go to the pain doc and make the same report. I would probably be doing well but... This time, I admitted to an apparently endless series of buts. I'm just putting myself back together from being apart from Melissa for four days and I'll be leaving with her on another four day trip tomorrow. I plan on throwing everything I have into pain control yet I'm asking for it. November could easily be the worst month in memory. I do this willingly so that no one will shine a penlight into my eyes to make sure I'm alive. Someone at the pain doc's office asked why I haven't shaved or cut my hair. I explained but this nurse seems to think I've forgotten or something.
Hello! I'm still alive here. I'll cut my hair and shave when I am healthy enough to require a business appropriate appearance. Until then, I am gearing up for my 40th birthday purple Mohawk. After that, you never know. My birthday is awfully close to Halloween and all. Chances are that I won't be shaving off this much hair when it took me a few years to grow it all in the first place. Right now, it's a hedge against baldness. While I doubt it truly works this way, it seems as if it would be tougher to lose this much hair all at once. I think of it as a pet that's very difficult to kill accidentally. I wash it when I'm up to standing in the shower that long and blow it dry if Melissa is awake. It feels good moving around on my head somehow.
As a child and young adult, I wasted a lot of energy resisting grooming rituals. We're like birds getting our plumage just right for some mating ritual and I didn't want to be a bird. I felt like I was both too good for the stupid dance meant to show off on that animal level and that I was so bad that I could only fail if I tried. My mother sent me to the barber who was too good of a guy to get stuck in the middle of that pointless contest. He was such a good guy that I let down my guard around him. My mother stopped going there with me but sent me with the money. This is one case where I truly forgot what was going on and the barber decided that my family was good for it. I think I was suspected of sabotage but it was just forgetfulness.
The pain is going to force me to get to the point if nothing else. I went for my appointment determined to make no excuses. Things were not going to get better and I wanted something from them to recognize the months of pain. The first thing I got was flat out refusal. I was surprised and started to react badly when I remembered that I had rejected the change I was asking her to consider flat out because I read the monograph on it and determined that I was not a candidate and the main pain doc had agreed with me. We had rejected the other possible way to get me better medication because it involved minor surgery. We're talking outpatient stuff but I get nervous when surgery is mentioned. However, it sounded like my doctor was taking it off the table.
That's when I realized that we were not speaking the same language at that moment. I wanted pain relief not more narcotic medication. Therefore, we discussed changes that we could make around the periphery. We may or may not have intended to increase my arthritis medication. I'm not sure because the pharmacist says it exceeds the standard dosages but that he has an override to use. My doctor will let me know on Monday if I remember to call her. We increased by fibro medication to help deal with the muscle burn. That should help a lot and we kept me on the muscle relaxer which I take very sparingly.
I never identify the doctor or practice beyond "pain doc" for a number of reasons. One is that I have pragmatic doctors who are willing to let me try thinking outside the box. I have tacit permission to drink alcohol for pain management purposes despite the fact that most doctors would call this "self-medicating" and condemn patients for doing it. Maybe that's just mental health professionals who know that alcohol does not make you feel better about yourself. It's a mood booster in my experience. If you're sad, you'll get sadder. I've also seen it work but I guess I was more agitated than sad. I was scared about drinking too much though not by healthy person standards. We're not talking about drinking myself sick or even stupid. We're just talking about potential invisible effects on my liver.
That's when I heard the same three words from two different people. They are incredibly reassuring for how short they are. Melissa and my doctor both said, "I trust you." As long as good people are looking out for me, I can trust myself. Therefore, I will drink what I need to drink to dull the pain within my own paranoid limits until Melissa says when. Then I'll stop because I can't drive or walk to a liquor store.
Melissa says that things will get better. We'll get the house fixed even if it isn't done by our current contractor. We'll get to the plumbing which turns every shower into a wannabe bath. There will be a break in the stress somewhere. I'd like it to be soon at my favorite hotel.
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