In case you've been vacationing somewhere under a rock, there has been another tragedy in a summer full of them. Robin Williams killed himself as he lost his battle with severe depression. Yes, I do mean that Robin Williams. That man who brought so much joy to so many of us has fallen in a war with which I am all too familiar. It's not surprising by the standards of losing yet another human being. He suffered from depression which is a disease that can turn deadly without warning. I do not blame him or seek to find fault in anyone. The fact is that he held on as long as he could and then he died.
My first reaction was fear. Fictional depictions of suicide threaten to knock me off my personal window ledge. My second reaction was defiance. I am alive. I am surviving my personal war for another day and not an easy one. It was pain doc day and I was screaming, crying and moaning from the physical pain. I know what happened. My sleep cycle failed me the way it usually does on a pain doc day and I spent time riding in the car. Since then, the pain has subsided a little because I threw the book at it but I hurt too much to sleep which is what I probably need the most. I long for the medicine my mother would give me when I had these horrible attacks of painful nausea. That medicine would make me vomit, settle the pain and put me to sleep all in the right order. I doubt this medicine would do me any good today since I was carried to bed in many of these memories. That suggests a somewhat lower body mass.
I was miserable before I learned of Mr. Williams. I'm not being cold. I don't refer to strangers by their first names and he will always be a stranger to me now. Sometime in the third hour of awful news, I told Melissa that I'd had enough. I needed to do something without the TV on because the tragic news would be on every channel. I knew that she would agree because I told her that this sort of story sets me off every time.
After all, there are cracks in my defenses. I make my share of mistakes or more. Learning that someone has killed himself puts pressure on all those cracks. What if he had the right idea? (He didn't but I'm making a point.) Chiarians are only a few among the many chronically ill patients who wonder every day if we can ask our caregivers and loved ones to put up with us for another day. It's not easy telling myself each day that I will survive. What must it be like for the caregivers who must have doubts that we truly require this level of care?
I'm done with the hypothetical points for a while anyway. My New York family gave me another perspective on the subject today. As regular readers know, Barbara, my sister-in-law, had thyroid cancer. There was a relapse scare but the truth was that radiation is required to eradicate thyroid cancer. Barbara is going through the stress of being sick without Melissa being there to care for her. Judy is filling the role of mother which is appropriate since she is their mother!Melissa. She includes taking care of of her sick daughter.
This probably would have gone on longer but I hurt to the point of being forced to stop. The news from Ferguson, MO has dragged my energy down further. All those poor people who wanted to express their pain were beaten down and gassed. I should just get this posted and rest some more.
Friday, August 15, 2014
Sunday, August 3, 2014
When Plans Fall Apart
Things were going too well. I won't pretend that's anything other than an excuse. More accurately, I need an angle to write about things so let's just pretend that I believe things going "too well" is a bad sign. Things are much better than they were last summer. Last summer was bad on an epic scale that I hope to never see again. The pain was screaming pain all the time with record amounts of stress keeping me from resting. It turns out that sleep is somewhat important to successful pain management.
There was a moment over the winter or Spring - I do not remember which - when the pain was so bad that I was either asleep or in agony. At the same time, MSN decided to make me jump through hoops in order to use email here on my PC. I tried to jump through the hoops but failed miserably. At the same time, settings changed on my tablet email which is also through MSN. I took months to figure out that my email was disappearing out of my email inbox after two days whether I'd read it or not. Considering my mental state of the time, it slipped my mind that I should have been getting certain bills. I was just too sick to perform those duties that I'd assigned myself and too sick to ask anyone else to do it.
Eventually, I reached a point when I felt a little better. It might be more accurate for me to say that I was worried enough to jump through extra hoops to find the information that I needed. We can skip ahead a bit to the point where I had ditched the provider who had managed to jack up prices two to three times while I was current on my bill. That phone call might have been funny if I hadn't been in agony the entire time. It turned out that I needed to renew my special fixed rate plan every so often and the phone person would not accept that I cannot depend on my ability to pay close attention to these things. I refused to enroll in a plan that would save me money for 90 days or something like that and then become absurdly expensive unless I remember to renew after that. Eventually, I resorted to rudeness and informed the phone person that she would either cancel my plan so that I could go back to the normal plan (with another company) and deal with mild price fluctuations or she could get her supervisor to do so.
Eventually, I found myself with a gigantic bill but with a foolproof plan for dealing with it. The first plan that unraveled was the plan to use email to stay current on bills and my technology just couldn't keep pace with my increasing disability. The second plan was to use my giant tax return to pay off the unpleasantly large bill. It was upsetting to know that I wasn't going to have enough money to replace the furniture for which the insurance adjuster never approved either a list of replacement items or gave me a dollar limit on. My brain is already falling apart so it's not surprising how that slipped.
I was already accepting the terms of no replacement furniture, no vacation and no splurging shopping trip when that plan fell apart. After a decade or so of being able to garnish Melissa's part of our federal tax return, the Department of Education chose this year to carry out the threat. I might not have noticed in a normal year but this wasn't the best year for me to take responsibility and handle things. Some people would relish the chance to say they told me so but I would simply hang up on them or shut my door in their faces. This was the year of serious complications and serious downturns in my health. I defy you to figure any of this out with a screaming headache and vertigo so bad that you fell out of chairs a couple of times. That left us with no money to pay off debts or pay our property tax bill for the year. That's not even including another bill I can't run down but suspect the "I told you so" people might have taken care of it. The shame of that mere possibility is almost enough to kill me.
Nonetheless, it takes more than that to beat me. In 2012, we took out a loan against Melissa's 401(k) plan and we're scheduled to pay it off this year. (The payments were so small that I never noticed the automatic payroll deductions.) So, we can take the money we do have/will get in the next seven days and pay that off half a year early. This makes us eligible to take out a new loan of the same type with no nasty liens on anything. We can borrow enough money to pay everything possibly even including replacement furniture and pay it off relatively painlessly. That's better than effectively taking out loans from the county and the power company at the maximum interest rate allowable by law.
As you can see, I have a backup plan for this which you might call Plan C. Let's just ignore the fact that Plan C will not even get me to where I should have been at this time last year. Let's ignore the fact that I'm in absurd amounts of pain. (Pay no attention to the spike being driven into the side of your head, the swelling in your joints and the fact that your persistent cough gives you whiplash style pain.) I have a plan to survive today and make it to tomorrow. That's progress.
There was a moment over the winter or Spring - I do not remember which - when the pain was so bad that I was either asleep or in agony. At the same time, MSN decided to make me jump through hoops in order to use email here on my PC. I tried to jump through the hoops but failed miserably. At the same time, settings changed on my tablet email which is also through MSN. I took months to figure out that my email was disappearing out of my email inbox after two days whether I'd read it or not. Considering my mental state of the time, it slipped my mind that I should have been getting certain bills. I was just too sick to perform those duties that I'd assigned myself and too sick to ask anyone else to do it.
Eventually, I reached a point when I felt a little better. It might be more accurate for me to say that I was worried enough to jump through extra hoops to find the information that I needed. We can skip ahead a bit to the point where I had ditched the provider who had managed to jack up prices two to three times while I was current on my bill. That phone call might have been funny if I hadn't been in agony the entire time. It turned out that I needed to renew my special fixed rate plan every so often and the phone person would not accept that I cannot depend on my ability to pay close attention to these things. I refused to enroll in a plan that would save me money for 90 days or something like that and then become absurdly expensive unless I remember to renew after that. Eventually, I resorted to rudeness and informed the phone person that she would either cancel my plan so that I could go back to the normal plan (with another company) and deal with mild price fluctuations or she could get her supervisor to do so.
Eventually, I found myself with a gigantic bill but with a foolproof plan for dealing with it. The first plan that unraveled was the plan to use email to stay current on bills and my technology just couldn't keep pace with my increasing disability. The second plan was to use my giant tax return to pay off the unpleasantly large bill. It was upsetting to know that I wasn't going to have enough money to replace the furniture for which the insurance adjuster never approved either a list of replacement items or gave me a dollar limit on. My brain is already falling apart so it's not surprising how that slipped.
I was already accepting the terms of no replacement furniture, no vacation and no splurging shopping trip when that plan fell apart. After a decade or so of being able to garnish Melissa's part of our federal tax return, the Department of Education chose this year to carry out the threat. I might not have noticed in a normal year but this wasn't the best year for me to take responsibility and handle things. Some people would relish the chance to say they told me so but I would simply hang up on them or shut my door in their faces. This was the year of serious complications and serious downturns in my health. I defy you to figure any of this out with a screaming headache and vertigo so bad that you fell out of chairs a couple of times. That left us with no money to pay off debts or pay our property tax bill for the year. That's not even including another bill I can't run down but suspect the "I told you so" people might have taken care of it. The shame of that mere possibility is almost enough to kill me.
Nonetheless, it takes more than that to beat me. In 2012, we took out a loan against Melissa's 401(k) plan and we're scheduled to pay it off this year. (The payments were so small that I never noticed the automatic payroll deductions.) So, we can take the money we do have/will get in the next seven days and pay that off half a year early. This makes us eligible to take out a new loan of the same type with no nasty liens on anything. We can borrow enough money to pay everything possibly even including replacement furniture and pay it off relatively painlessly. That's better than effectively taking out loans from the county and the power company at the maximum interest rate allowable by law.
As you can see, I have a backup plan for this which you might call Plan C. Let's just ignore the fact that Plan C will not even get me to where I should have been at this time last year. Let's ignore the fact that I'm in absurd amounts of pain. (Pay no attention to the spike being driven into the side of your head, the swelling in your joints and the fact that your persistent cough gives you whiplash style pain.) I have a plan to survive today and make it to tomorrow. That's progress.
Wednesday, June 25, 2014
The Real Heroes
Lawrence O'Donnell returned to his MSNBC show tonight after 75 days of recovering from an accident. He and his brother were riding in a taxi in the US Virgin Islands when they were hit by a drunk driver. There were no fatalities, thank God, and Lawrence regained the ability to walk as he put it so blithely. On his first night back, he dedicated most of the show to being thankful. I have spent the last month trying to write about having flashbacks without triggering more. Just on a whim, I'm setting aside that entry for now and concentrating on things for which I am thankful and non-monetary debts that I'll never be able to repay.
For as long as I can, I'm going to try and keep to reverse chronological order. The things and people I've encountered most recently shall go first hopefully going back to the distant past where memories will be distorted as a matter of course. Most of these will be doctors, nurses and other medical personnel. Let's start off with my current medical team mostly involving the pain doc's office. My pain doc is the best pain doc in the state of Delaware (and MD where he also practices) by far. Therefore, everyone wants to be his patient. Several things happen when everyone tries to go to the same doctor and the kind hearted soul tries to take in everyone. In this era of insurance companies "controlling" costs by underpaying doctors and making their own huge profits, the issue for patients is waiting time. My pain doc is infamous for long waiting times though things have improved recently.
The pain doc and his staff take an enormous amount of abuse over this. People sitting in the waiting room get progressively angrier as time goes by. Since being in an angry room makes my symptoms worse (and I dislike seeing anger so misplaced), I try to diffuse the anger. When I ask people why they stick around after the long waits, they bluster for a while and then admit that it is because the practice offers the best care available in our area. They are too frustrated to tell the staff this and I refuse to blame them. Pain brings out the worst in everyone sooner or later.
I walked into my last appointment and issued a friendly warning. My confusion symptom had spiked for the month. Trying to answer questions - often very simple ones - will cause me to go into the state I've always caused "vapor lock." The words I'm looking for disappear and, all too often, other words replace them. These tend to be those words that might get a healthy person's face slapped or his mouth washed out with soap. Anyone who has ever heard Whoopi Goldberg's comedy routine about a drug dealer named Fontaine might know just what I mean.
Just as a precaution, I told my doctor - the one who treats me and not the head of the practice - that I was suffering from confusion that left gaps in my vocabulary. There's nothing unusual about this for me except for the severity. The effort of saying what I said to that effect gave me an icepick headache. The doctor assured me that she appreciates the effort and is used to being called unpleasant names. I learned shortly before that appointment that I had been calling her nurse the wrong name for some unknown period of time and she never even said a word about it.
The doctor laughed about it and I was prepared to have the shortest appointment in history but she worked answers about what was going on out of me. For once, I didn't want to talk at all because I wasn't terribly sure of what might come out of my mouth next. While I expect a blase attitude about everything being Chiari especially when I'd experienced it before, she was patient and we worked out that I probably didn't need to go to the ER. I wasn't going anyway because I'd been through this symptom so many times before. Of course, there was that time it led to me having life saving brain surgery down the road. This doctor might have made me consider it seriously. anyway but we decided it wasn't necessary.
I'm so thankful for the staff at my pain doc's office. Truth is that I don't know most of them at all but all of them are qualified to work other jobs with less stress.. They would probably take less abuse at a major city's trauma ward but their only reaction seems to be a knowing smile when I thank them for putting up with it all. A lot of their stress comes from working for a doctor with endless energy who wants to help the entire world. What can you say about a doctor who opens a practice where he will deal with nothing but hurting and, probably, angry people all the time? I think he's pretty spectacular if you ask me.
The same thing applies to my second neurosurgeon or the qualified Chiari expert. Those two terms refer to the same man who I agreed not to name on the same day I met him. I went from feeling ever so close to being better to not being able to walk around the house without a cane. I had not fallen since childhood until the Fall of 2001 and then I started falling daily even with the cane over those same months. My original neurosurgeon refused to help although I recognize now that this was the best thing he'd ever done for me. He was in over his head in the first surgery but he tried to help. Despite my symptoms, he could not find anything which meant that he should have been looking for an expert.
Instead, the Chiari community aimed me in the direction of the expert surgeon and I went through this awful process of obtaining Social Security Disability and, therefore, Medicare so that I could see him. Once I was able to see him, he and his staff protected me like I was their only patient. In my first consultation with the doctor, Melissa and I saw hope for the first time in years. My second and more severe decline was explained to me as was the mistake that the first neurosurgeon made. I wasn't going to die though I was unlikely to get completely better. He and another doctor took their combined genius and applied it to this seriously under-diagnosed condition which is misdiagnosed as MS among other things in so many others.
The very first diagnostic procedure done on me was reasonably non-frightening in the abstract yet there I was dealing with the practical consequences. I have spina bifida as most regular readers know so I'm incontinent. When I woke up from the sedation, I was soaked already. They were pumping fluids into me like I had just emerged from the Sahara and they were going right through me as they should. It took me an hour to get over the humiliation of having someone change me. I just wasn't expecting to need that service again in another hour.
That's when the most wonderful nurse I met in the state of New York appeared. She managed to keep me distracted enough by conversation to reduce the humiliation and I asked her to please get me on a regular changing schedule. I'd been brought up to be independent and secretive so waving my hand and yelling were out of the question. This nurse took care of me herself for hours on end and there's no price that can be put on that sort of help. I did the best I could and wrote my thanks into an official note. Others must have joined me because this lovely angel of mercy was promoted a few years later. I can't remember her name. Though I would not publish it anyway, I wish I could remember her name.
There is one hospital horror story though a mild one that I need to tell. I need to write about the problem so that I can tell you about the awesome way it was solved. I live my life as a frustrated perfectionist and closet overachiever. Usually, I'm motivated by fear when I do these things. One of the most painful moments after my first surgery came when I was transferred from the ICU to the regular ward. The floor joints made little bumps that most people couldn't see but I had 30 muscle groups severed and reattached according to that first surgeon. Bumps were incredibly unpleasant during my wheelchair transport.
When the time came for me to be transferred from post-op to what they called a step down ward in New York, I was terrified of the transport. After moving me on a gurney to reduce the bumps (I felt them more in a sitting position.), I asked if I could move myself from the gurney to the hospital bed. The nurse who didn't know me raised me one and suggested that I sit in a chair if I were up to it and move myself there. I don't know who was most perplexed looking when they saw me out of bed then walking (minimally) on the same day as the surgery. It was either Melissa or the surgeon but that's not the horror story.
The "horror" story came the next day when a nurse suggested that I get some exercise by walking around the halls. I did so and had barely sat down when another nurse suggested that I'd heal better if I got some exercise and yada yada. I wasn't sure what I needed to do to please them so I stayed out longer each time including the time I walked through one of those one way access doors by accident and got on a completely different loop. By the time I made it back to my bed that time, my doctor was there and I informed him that I was done walking for a while and that I was in a miserable amount of pain from it all.
He wrote something on my chart that made the well intentioned nurses leave me alone though I did keep up walking some each day. We also put our heads together and figured out what most likely happened. I had the bad luck of a new nurse coming on duty after my walks each time who thought I had been the typical patient resistant to things that might hurt. Each one thought she was getting me out of bed for the first time. Though the "urge to kill" from the local paper's comics page came to mind, it was actually very good care. They just didn't know me and know what I will do to try pleasing someone I'm predisposed to respect.
Let me just admit right now what you're all wondering. I don't remember the timeline very precisely anymore except for a few things. One was that I was kept unconscious overnight after my surgery so I was on my feet the day that they woke me up. Another was that I woke up with one of my all-time horrors. This is just a personal thing but they had a respirator tube down my throat which is probably fine but I panicked. Since I was trying to hyperventilate the whole time, it was most unpleasant. Apparently, I put up some sort of unconscious struggle the first time I woke up because I was tied down the second time but that hardly counts. The nurse who had probably held me down the first time was right there explaining what had happened and removed the restraint as soon as he was sure that I was awake enough to control myself. I also remember one other thing from that specific timeline. I was allowed extra guest time because I was so miserable. Even when I didn't know it, the nursing staff was looking out for me.
My first Chiari surgery was extremely painful compared to the second. I was in the ICU for parts of three days. My surgery was on a Wednesday, I slept most of Thursday and I was in a regular room in time for my lunch to get lost on Friday. There are many reasons why I can't truly resent the first surgeon the way I do others in my past. One of the most important was how I had started to panic in the OR and he kept talking to me until I was out. My biggest fear was not going out all the way but I was out so fast and so completely that I started a thought in the OR and finished it in the ICU. I had "threatened" to tell Melissa that I was ready to go home as soon as I woke up from surgery. It was a joke since I believed there was no way I could remember something through surgery but it was as clear as if no time had passed so I looked up and Melissa to my great relief and greeted her with, "I'm ready to go home now."
The pain hit the next time I woke and this was the worst pain I've ever felt yet a nurse was standing there with a syringe ready for me. I was extremely paranoid about narcotic medication at the time since I had quit smoking just a couple of years before. I asked what was in the syringe through this ungodly pain and she said "morphine" after she put it in my IV. I didn't have time to complain or thank her before the relief hit and I was out again.
Lawrence O'Donnell spoke of the first 24 hours being the worst. I tell fellow Chiarians that it will be 24-48 hours at most before you only feel as bad as you did before the surgery. That may sound awful but it isn't after the first 24-48 hours. I was never in extreme pain while in the hospital for my second surgery because of better pain relieving technology but the first surgery was enough pain for anyone. I learned one simple rule of survival: never turn down pain medication when it's offered to you. They will stop offering all too soon either way but you suffer less if you accept the relief you can get.
Those first 24-48 hours in my local hospital were the worst ever but the nurses were unbelievably kind. My morphine was never late and someone usually talked me through the last ten minutes or so when the relief was completely gone. The male nurse whose name I do remember but will not name was the best. Normally, moving me around in bed required two nurses and a crane (kidding about the crane part) but this guy could lift me and shift me around all on his own. Somehow, this made things so much better for me. I don't know enough about it to be sure since I wasn't all the way there but I'll never forget you, buddy.
By the time I was in the regular room, I was getting cranky. I down from morphine all the way to Tylenol and I didn't even know that it was the version with codeine. I do know that one of my doses should have happened during a shift change so I hurt longer and I probably let a nurse know about it in no uncertain terms. Sorry, everyone. When I try to be nice to the pain doc's staff, it's because I know how nasty I can get. If I can hold the line at polite, I know I won't get to name calling. Yes, there's a story attached to that but it's before I had Chiari surgery and learned to love the meds in their prescribed doses.
My first night in the regular ward was miserable. My poor roommate, Mac, had some sort of head trauma and no one was willing to take responsibility for him so he was stuck there indefinitely. I don't think you could conceivably identify him by that name but I want to keep him in mind. I felt imprisoned after one day and he was there much longer. Someone should remember that. In any case, I snuck out of my room that night with a newspaper so that I could spread it around. To this day, I cannot hold a newspaper well enough to read it but that's what tablets are for. A nurse found me within ten minutes since I wasn't bothering to hide. Someone might have wanted to give me pain meds after all.
Instead of giving me a hard time, she brought me out to meet the "night shift." This was a mixture of long term patients like Mac (but not including him since he slept well) and short term like me who couldn't sleep much. The nurse let us play cards and read or whatever at her station and let us drink coffee since there's nothing worse than being half asleep. There might have even been snacks involved. I got to depend on the night shift in my last three nights there. They kept my grousing under control because it was clear all of them were in worse shape than I was and they took it better. I rose to the challenge.
In any case, I might have had a tendency to flirt with other nurses from time to time but it was true love with this one. It's not the sort of love where you remember each others names much less ever see each other again but I was head over heels nonetheless. Not only did she tolerate the night shift but she could take your vitals and do a cognitive check all without waking you up all the way. She also taught me the unwritten rule I've followed ever since. It doesn't matter how much you wander in acceptable places as long as you are in your bed at medicine, checkup and meal times. Since I will not tolerate hospitals when I'm well enough to break this rule anyway, she gave me pure gold. Now, the acceptable areas part is a key to the whole thing. You do not wander into any room marked restricted or into another patient's room without a specific invitation nor do you leave the building without being discharged. That's all common sense to me especially the last part based on the draft alone.
There are a lot more medical people to thank but I'm getting tired again and I'd like to post this. Lawrence was amazing last night especially with the sickie humor that I identified with so much. Keep the beard, man!
For as long as I can, I'm going to try and keep to reverse chronological order. The things and people I've encountered most recently shall go first hopefully going back to the distant past where memories will be distorted as a matter of course. Most of these will be doctors, nurses and other medical personnel. Let's start off with my current medical team mostly involving the pain doc's office. My pain doc is the best pain doc in the state of Delaware (and MD where he also practices) by far. Therefore, everyone wants to be his patient. Several things happen when everyone tries to go to the same doctor and the kind hearted soul tries to take in everyone. In this era of insurance companies "controlling" costs by underpaying doctors and making their own huge profits, the issue for patients is waiting time. My pain doc is infamous for long waiting times though things have improved recently.
The pain doc and his staff take an enormous amount of abuse over this. People sitting in the waiting room get progressively angrier as time goes by. Since being in an angry room makes my symptoms worse (and I dislike seeing anger so misplaced), I try to diffuse the anger. When I ask people why they stick around after the long waits, they bluster for a while and then admit that it is because the practice offers the best care available in our area. They are too frustrated to tell the staff this and I refuse to blame them. Pain brings out the worst in everyone sooner or later.
I walked into my last appointment and issued a friendly warning. My confusion symptom had spiked for the month. Trying to answer questions - often very simple ones - will cause me to go into the state I've always caused "vapor lock." The words I'm looking for disappear and, all too often, other words replace them. These tend to be those words that might get a healthy person's face slapped or his mouth washed out with soap. Anyone who has ever heard Whoopi Goldberg's comedy routine about a drug dealer named Fontaine might know just what I mean.
Just as a precaution, I told my doctor - the one who treats me and not the head of the practice - that I was suffering from confusion that left gaps in my vocabulary. There's nothing unusual about this for me except for the severity. The effort of saying what I said to that effect gave me an icepick headache. The doctor assured me that she appreciates the effort and is used to being called unpleasant names. I learned shortly before that appointment that I had been calling her nurse the wrong name for some unknown period of time and she never even said a word about it.
The doctor laughed about it and I was prepared to have the shortest appointment in history but she worked answers about what was going on out of me. For once, I didn't want to talk at all because I wasn't terribly sure of what might come out of my mouth next. While I expect a blase attitude about everything being Chiari especially when I'd experienced it before, she was patient and we worked out that I probably didn't need to go to the ER. I wasn't going anyway because I'd been through this symptom so many times before. Of course, there was that time it led to me having life saving brain surgery down the road. This doctor might have made me consider it seriously. anyway but we decided it wasn't necessary.
I'm so thankful for the staff at my pain doc's office. Truth is that I don't know most of them at all but all of them are qualified to work other jobs with less stress.. They would probably take less abuse at a major city's trauma ward but their only reaction seems to be a knowing smile when I thank them for putting up with it all. A lot of their stress comes from working for a doctor with endless energy who wants to help the entire world. What can you say about a doctor who opens a practice where he will deal with nothing but hurting and, probably, angry people all the time? I think he's pretty spectacular if you ask me.
The same thing applies to my second neurosurgeon or the qualified Chiari expert. Those two terms refer to the same man who I agreed not to name on the same day I met him. I went from feeling ever so close to being better to not being able to walk around the house without a cane. I had not fallen since childhood until the Fall of 2001 and then I started falling daily even with the cane over those same months. My original neurosurgeon refused to help although I recognize now that this was the best thing he'd ever done for me. He was in over his head in the first surgery but he tried to help. Despite my symptoms, he could not find anything which meant that he should have been looking for an expert.
Instead, the Chiari community aimed me in the direction of the expert surgeon and I went through this awful process of obtaining Social Security Disability and, therefore, Medicare so that I could see him. Once I was able to see him, he and his staff protected me like I was their only patient. In my first consultation with the doctor, Melissa and I saw hope for the first time in years. My second and more severe decline was explained to me as was the mistake that the first neurosurgeon made. I wasn't going to die though I was unlikely to get completely better. He and another doctor took their combined genius and applied it to this seriously under-diagnosed condition which is misdiagnosed as MS among other things in so many others.
The very first diagnostic procedure done on me was reasonably non-frightening in the abstract yet there I was dealing with the practical consequences. I have spina bifida as most regular readers know so I'm incontinent. When I woke up from the sedation, I was soaked already. They were pumping fluids into me like I had just emerged from the Sahara and they were going right through me as they should. It took me an hour to get over the humiliation of having someone change me. I just wasn't expecting to need that service again in another hour.
That's when the most wonderful nurse I met in the state of New York appeared. She managed to keep me distracted enough by conversation to reduce the humiliation and I asked her to please get me on a regular changing schedule. I'd been brought up to be independent and secretive so waving my hand and yelling were out of the question. This nurse took care of me herself for hours on end and there's no price that can be put on that sort of help. I did the best I could and wrote my thanks into an official note. Others must have joined me because this lovely angel of mercy was promoted a few years later. I can't remember her name. Though I would not publish it anyway, I wish I could remember her name.
There is one hospital horror story though a mild one that I need to tell. I need to write about the problem so that I can tell you about the awesome way it was solved. I live my life as a frustrated perfectionist and closet overachiever. Usually, I'm motivated by fear when I do these things. One of the most painful moments after my first surgery came when I was transferred from the ICU to the regular ward. The floor joints made little bumps that most people couldn't see but I had 30 muscle groups severed and reattached according to that first surgeon. Bumps were incredibly unpleasant during my wheelchair transport.
When the time came for me to be transferred from post-op to what they called a step down ward in New York, I was terrified of the transport. After moving me on a gurney to reduce the bumps (I felt them more in a sitting position.), I asked if I could move myself from the gurney to the hospital bed. The nurse who didn't know me raised me one and suggested that I sit in a chair if I were up to it and move myself there. I don't know who was most perplexed looking when they saw me out of bed then walking (minimally) on the same day as the surgery. It was either Melissa or the surgeon but that's not the horror story.
The "horror" story came the next day when a nurse suggested that I get some exercise by walking around the halls. I did so and had barely sat down when another nurse suggested that I'd heal better if I got some exercise and yada yada. I wasn't sure what I needed to do to please them so I stayed out longer each time including the time I walked through one of those one way access doors by accident and got on a completely different loop. By the time I made it back to my bed that time, my doctor was there and I informed him that I was done walking for a while and that I was in a miserable amount of pain from it all.
He wrote something on my chart that made the well intentioned nurses leave me alone though I did keep up walking some each day. We also put our heads together and figured out what most likely happened. I had the bad luck of a new nurse coming on duty after my walks each time who thought I had been the typical patient resistant to things that might hurt. Each one thought she was getting me out of bed for the first time. Though the "urge to kill" from the local paper's comics page came to mind, it was actually very good care. They just didn't know me and know what I will do to try pleasing someone I'm predisposed to respect.
Let me just admit right now what you're all wondering. I don't remember the timeline very precisely anymore except for a few things. One was that I was kept unconscious overnight after my surgery so I was on my feet the day that they woke me up. Another was that I woke up with one of my all-time horrors. This is just a personal thing but they had a respirator tube down my throat which is probably fine but I panicked. Since I was trying to hyperventilate the whole time, it was most unpleasant. Apparently, I put up some sort of unconscious struggle the first time I woke up because I was tied down the second time but that hardly counts. The nurse who had probably held me down the first time was right there explaining what had happened and removed the restraint as soon as he was sure that I was awake enough to control myself. I also remember one other thing from that specific timeline. I was allowed extra guest time because I was so miserable. Even when I didn't know it, the nursing staff was looking out for me.
My first Chiari surgery was extremely painful compared to the second. I was in the ICU for parts of three days. My surgery was on a Wednesday, I slept most of Thursday and I was in a regular room in time for my lunch to get lost on Friday. There are many reasons why I can't truly resent the first surgeon the way I do others in my past. One of the most important was how I had started to panic in the OR and he kept talking to me until I was out. My biggest fear was not going out all the way but I was out so fast and so completely that I started a thought in the OR and finished it in the ICU. I had "threatened" to tell Melissa that I was ready to go home as soon as I woke up from surgery. It was a joke since I believed there was no way I could remember something through surgery but it was as clear as if no time had passed so I looked up and Melissa to my great relief and greeted her with, "I'm ready to go home now."
The pain hit the next time I woke and this was the worst pain I've ever felt yet a nurse was standing there with a syringe ready for me. I was extremely paranoid about narcotic medication at the time since I had quit smoking just a couple of years before. I asked what was in the syringe through this ungodly pain and she said "morphine" after she put it in my IV. I didn't have time to complain or thank her before the relief hit and I was out again.
Lawrence O'Donnell spoke of the first 24 hours being the worst. I tell fellow Chiarians that it will be 24-48 hours at most before you only feel as bad as you did before the surgery. That may sound awful but it isn't after the first 24-48 hours. I was never in extreme pain while in the hospital for my second surgery because of better pain relieving technology but the first surgery was enough pain for anyone. I learned one simple rule of survival: never turn down pain medication when it's offered to you. They will stop offering all too soon either way but you suffer less if you accept the relief you can get.
Those first 24-48 hours in my local hospital were the worst ever but the nurses were unbelievably kind. My morphine was never late and someone usually talked me through the last ten minutes or so when the relief was completely gone. The male nurse whose name I do remember but will not name was the best. Normally, moving me around in bed required two nurses and a crane (kidding about the crane part) but this guy could lift me and shift me around all on his own. Somehow, this made things so much better for me. I don't know enough about it to be sure since I wasn't all the way there but I'll never forget you, buddy.
By the time I was in the regular room, I was getting cranky. I down from morphine all the way to Tylenol and I didn't even know that it was the version with codeine. I do know that one of my doses should have happened during a shift change so I hurt longer and I probably let a nurse know about it in no uncertain terms. Sorry, everyone. When I try to be nice to the pain doc's staff, it's because I know how nasty I can get. If I can hold the line at polite, I know I won't get to name calling. Yes, there's a story attached to that but it's before I had Chiari surgery and learned to love the meds in their prescribed doses.
My first night in the regular ward was miserable. My poor roommate, Mac, had some sort of head trauma and no one was willing to take responsibility for him so he was stuck there indefinitely. I don't think you could conceivably identify him by that name but I want to keep him in mind. I felt imprisoned after one day and he was there much longer. Someone should remember that. In any case, I snuck out of my room that night with a newspaper so that I could spread it around. To this day, I cannot hold a newspaper well enough to read it but that's what tablets are for. A nurse found me within ten minutes since I wasn't bothering to hide. Someone might have wanted to give me pain meds after all.
Instead of giving me a hard time, she brought me out to meet the "night shift." This was a mixture of long term patients like Mac (but not including him since he slept well) and short term like me who couldn't sleep much. The nurse let us play cards and read or whatever at her station and let us drink coffee since there's nothing worse than being half asleep. There might have even been snacks involved. I got to depend on the night shift in my last three nights there. They kept my grousing under control because it was clear all of them were in worse shape than I was and they took it better. I rose to the challenge.
In any case, I might have had a tendency to flirt with other nurses from time to time but it was true love with this one. It's not the sort of love where you remember each others names much less ever see each other again but I was head over heels nonetheless. Not only did she tolerate the night shift but she could take your vitals and do a cognitive check all without waking you up all the way. She also taught me the unwritten rule I've followed ever since. It doesn't matter how much you wander in acceptable places as long as you are in your bed at medicine, checkup and meal times. Since I will not tolerate hospitals when I'm well enough to break this rule anyway, she gave me pure gold. Now, the acceptable areas part is a key to the whole thing. You do not wander into any room marked restricted or into another patient's room without a specific invitation nor do you leave the building without being discharged. That's all common sense to me especially the last part based on the draft alone.
There are a lot more medical people to thank but I'm getting tired again and I'd like to post this. Lawrence was amazing last night especially with the sickie humor that I identified with so much. Keep the beard, man!
Sunday, June 15, 2014
The Spinning Wheel of Chiari Symptoms
Round and round the wheel goes. Where it stops, nobody knows! I used to have a running joke with part of the Chiari community. When someone would ask if what they were suffering could be a Chiari symptom, I would say yes without bothering to look anything up. Of course, I'd follow up by telling the person that I'm not a doctor, she needed to see a doctor and that there are surprisingly few things that aren't Chiari symptoms. If you are like me with a Chiari II diagnosis combined with a tethered cord, you have damage to your brain stem which controls most of the body's involuntary reactions. You also have a serious neurological signalling problem for lack of a better term.
Walking, for instance, is fun in particular. Your brain sends signals to your legs to simplify things more than a little. The nerves in your legs send messages back to your brain and, especially when walking on bad terrain, back to the spine which replies without bothering to consult the brain. The latter is reflex action that kicks in when there's some sort of emergency. If you touch a hot stove with your hand, the "ouch!" message is handled at your spine which pulls your hand back before your brain registers the pain.
When you have Chiari II combined with a tethered spinal cord, you get something along the lines of double the chance for a symptom to take place. I'm in my 14th year of being a Zipperhead and I still feel the surprise every time something unexpected comes up on the Wheel of Symptoms. This past week or so, an oldie but (terrible-ly?) has put in an appearance. I've been experiencing migraine type headache with severe vertigo accompanied by agitated depression. In addition to the usual background pain centered on my surgical area, I've had severe headaches that felt as if a tornado were contained somewhere in my brain. In addition, I've had full body twitches that have left me wondering whether I could walk to save my life during the worst of it.
I don't know if it's related in any technical sense to the Chiari symptoms (see above point) but I've been suffering bouts of hopelessness as well. We're coming up on the one year anniversary of the deed transfer here. How on earth can we possibly handle paying homeowners' insurance? What about property taxes? I've never done any of this before and I'm a hopeless incompetent. Okay. That's what I'm feeling. The truth is that property taxes aren't that bad here and there's no reason why I can't start dealing with them right now. They aren't due until the end of September and I have my income tax return showing up between now and then. I can make a phone call to confirm my homeowners' insurance questions but paying six months at a time isn't that expensive. If it turns out to be a time when "not that expensive" is too much, it's renewal time and I could go monthly.
What about other issues? I feel like a total failure who cannot even prevent pain from taking over his life. I could say that unless I chose to consult with reality and realize that I am dealing with my symptoms. There's a lot of room for improvement but that's where things like pain blogs and doctors and experimentation come into play. In any case, claiming that I'm a failure or an incompetent at coping overlooks one important Monty Python quote. "I'm not dead yet!" I like the spinning wheel as a symbol for this particular symptom set. Everything is unbalanced right now.
Right now, it's logic and years of training versus perverse emotions and years of other training. I haven't lost my balance except for one time and that was literal. I was sitting on the end of the bed when the world shifted and the edge of the bed sagged enough to put me on the floor. Maybe it's memory of that moment or it could be something far simpler but the world has resumed moving harshly. I must put a pin in this for now.
Weeks Later:
I haven't had such severe symptoms in June since....last year. The spinning pain was so severe that I couldn't bear to sit here at my desk and write. The main result has been me trapped in my head unable to escape the implications of a lifetime of failure. Objectively, I do not accept the lifetime of failure concept. I prefer the model where I have current problems that can be solved in the short, medium and long terms. Okay. Some cannot be solved but those can be managed.
This post can be managed by deciding it is finished for now and posting it. There may be more if I am well enough to write more.
Walking, for instance, is fun in particular. Your brain sends signals to your legs to simplify things more than a little. The nerves in your legs send messages back to your brain and, especially when walking on bad terrain, back to the spine which replies without bothering to consult the brain. The latter is reflex action that kicks in when there's some sort of emergency. If you touch a hot stove with your hand, the "ouch!" message is handled at your spine which pulls your hand back before your brain registers the pain.
When you have Chiari II combined with a tethered spinal cord, you get something along the lines of double the chance for a symptom to take place. I'm in my 14th year of being a Zipperhead and I still feel the surprise every time something unexpected comes up on the Wheel of Symptoms. This past week or so, an oldie but (terrible-ly?) has put in an appearance. I've been experiencing migraine type headache with severe vertigo accompanied by agitated depression. In addition to the usual background pain centered on my surgical area, I've had severe headaches that felt as if a tornado were contained somewhere in my brain. In addition, I've had full body twitches that have left me wondering whether I could walk to save my life during the worst of it.
I don't know if it's related in any technical sense to the Chiari symptoms (see above point) but I've been suffering bouts of hopelessness as well. We're coming up on the one year anniversary of the deed transfer here. How on earth can we possibly handle paying homeowners' insurance? What about property taxes? I've never done any of this before and I'm a hopeless incompetent. Okay. That's what I'm feeling. The truth is that property taxes aren't that bad here and there's no reason why I can't start dealing with them right now. They aren't due until the end of September and I have my income tax return showing up between now and then. I can make a phone call to confirm my homeowners' insurance questions but paying six months at a time isn't that expensive. If it turns out to be a time when "not that expensive" is too much, it's renewal time and I could go monthly.
What about other issues? I feel like a total failure who cannot even prevent pain from taking over his life. I could say that unless I chose to consult with reality and realize that I am dealing with my symptoms. There's a lot of room for improvement but that's where things like pain blogs and doctors and experimentation come into play. In any case, claiming that I'm a failure or an incompetent at coping overlooks one important Monty Python quote. "I'm not dead yet!" I like the spinning wheel as a symbol for this particular symptom set. Everything is unbalanced right now.
Right now, it's logic and years of training versus perverse emotions and years of other training. I haven't lost my balance except for one time and that was literal. I was sitting on the end of the bed when the world shifted and the edge of the bed sagged enough to put me on the floor. Maybe it's memory of that moment or it could be something far simpler but the world has resumed moving harshly. I must put a pin in this for now.
Weeks Later:
I haven't had such severe symptoms in June since....last year. The spinning pain was so severe that I couldn't bear to sit here at my desk and write. The main result has been me trapped in my head unable to escape the implications of a lifetime of failure. Objectively, I do not accept the lifetime of failure concept. I prefer the model where I have current problems that can be solved in the short, medium and long terms. Okay. Some cannot be solved but those can be managed.
This post can be managed by deciding it is finished for now and posting it. There may be more if I am well enough to write more.
Thursday, May 29, 2014
Not My Pain Today
I'm very lucky these days. It's been a long time since any of the women I know and care most about have faced violent hate crimes with nothing to do with sex. It seemed as though it was a weekly event in my college days. Sometimes, there were a few degrees of separation but there always seemed to be a woman I knew well suffering from violence or the long aftermath. If you don't limit it to physical violence, it was an everyday event in truth. There were women all around me who believed that they needed to submit to sex in order to be in a relationship. If you want to expand it to a verbal level, I was one of the tens of millions of men who used words like bitch on a regular basis though usually not at someone. That just means they weren't in the room so I guess that doesn't count for much.
Honestly, I have to admit that bitch doesn't strike me as a particularly offensive word even when I've meant it to be hurtful. Like the classic f-bomb, it tends to be so divorced from its literal meaning that I hardly consider its meaning at all. If I've been offended by a man, I'm likely to refer to said person as an asshole. If the offensive person is a woman, I'm more likely to say bitch. For much of my life, women provided more of my emotional trauma than men did though that was likely because I preferred the company of women. Let me be clear and state that I'm not referring to sexual company of any sort. I'm what I might jokingly call a mono-sexual meaning that I'm devoted to my wife and she's the only person I've ever seriously thought of as a sexual partner.
Thus, the supposed motivations of the California mass murderer seem like something that belong on another planet. If we're going to talk about good old Earth, I've been deluding myself for a long time that such misogyny is limited to other cultures like jihadist type Islamist groups. (If I've misused either religious term, I apologize and welcome gentle corrections.) I remember my college days when it seemed that nearly everyone who went out did so find an attractive girl drunk enough to want to go home with him. It used to bother me that this was considered OK as long as no one got AIDS or got pregnant. Most of my friends were women yet there were few objections toward any other effects this behavior might have.
I do not understand anyone who feels a need to "get laid." I understand the desire and the pleasure involved but only at the highest levels of commitment. I believed this was related to my birth defect. If I had proper bladder and bowel control with nothing deformed, I believed that I might have tried to join the hook up culture. Of course, serious history students try to avoid wasting time on counterfactuals. (What if Hitler had been killed in the First World War?) That's how seriously I take the concept of being born normal. If being born normal meant that I would need sex to see myself as a man, I guess I'm glad of spina bifida.
If I asked a woman out, it was because I wanted to spend time with her and that was time with our clothes on. As often as not, I was as interested in the suggested activity as I was the company. I'm ashamed that I felt anger about the series of rejections that marked the first 20 years of my life but I think I was being rejected by a lot of young women who thought I wanted more than I did. There was one time when a woman made it very clear that she might just be sexually available for the asking and this struck me as a bad idea despite all the alcohol we'd consumed. How could I trust her that much when we barely knew each other? The main thing that kept me from running away was the fact that we were in my room! Thankfully, she closed the door on the subject quickly.
People talk about masculine culture and blame it for sexual violence but I don't know. I'm far from an expert on the subject but the closest thing I've had to a big brother in my lifetime was a self described "male whore." He was heterosexual and liked sex with willing women so much that he seemed to be involved with a lot of them. He never seemed to believe that they were anything but what he would be if he were a woman. At the same time, he respected my decision to wait for the right woman and never so much as teased me about it. He also respected my views on violence in general and showed me how to avoid looking like a victim without having to fight anyone. I associate masculine culture with him though he is likely a minority of one among the "manly men." I know other perfectly decent men but they would never describe themselves as being terribly masculine.
I never touched anyone without permission even when I was touch deprived enough to enjoy sitting in an over-occupied car or bumping into someone in the hallway. No, I'm not contradicting myself because I let people bump into me and the car thing was mutual crowding. It was nothing sexual but simple touch is impossibly important for human beings.
I want to know what it is that we need to do to make college campus safe for women and everyone else who suffers. Do we need to eliminate the culture of freedom that allows young men and women to flaunt what few rules there are and go from co-education to near cohabitation? I hope not. I remember and treasure so many late night and early morning conversations that I shared with women friends. If it would have kept more of my friends safe, I guess we could have talked on the phone. What do we need to do to help keep women safe?
Honestly, I have to admit that bitch doesn't strike me as a particularly offensive word even when I've meant it to be hurtful. Like the classic f-bomb, it tends to be so divorced from its literal meaning that I hardly consider its meaning at all. If I've been offended by a man, I'm likely to refer to said person as an asshole. If the offensive person is a woman, I'm more likely to say bitch. For much of my life, women provided more of my emotional trauma than men did though that was likely because I preferred the company of women. Let me be clear and state that I'm not referring to sexual company of any sort. I'm what I might jokingly call a mono-sexual meaning that I'm devoted to my wife and she's the only person I've ever seriously thought of as a sexual partner.
Thus, the supposed motivations of the California mass murderer seem like something that belong on another planet. If we're going to talk about good old Earth, I've been deluding myself for a long time that such misogyny is limited to other cultures like jihadist type Islamist groups. (If I've misused either religious term, I apologize and welcome gentle corrections.) I remember my college days when it seemed that nearly everyone who went out did so find an attractive girl drunk enough to want to go home with him. It used to bother me that this was considered OK as long as no one got AIDS or got pregnant. Most of my friends were women yet there were few objections toward any other effects this behavior might have.
I do not understand anyone who feels a need to "get laid." I understand the desire and the pleasure involved but only at the highest levels of commitment. I believed this was related to my birth defect. If I had proper bladder and bowel control with nothing deformed, I believed that I might have tried to join the hook up culture. Of course, serious history students try to avoid wasting time on counterfactuals. (What if Hitler had been killed in the First World War?) That's how seriously I take the concept of being born normal. If being born normal meant that I would need sex to see myself as a man, I guess I'm glad of spina bifida.
If I asked a woman out, it was because I wanted to spend time with her and that was time with our clothes on. As often as not, I was as interested in the suggested activity as I was the company. I'm ashamed that I felt anger about the series of rejections that marked the first 20 years of my life but I think I was being rejected by a lot of young women who thought I wanted more than I did. There was one time when a woman made it very clear that she might just be sexually available for the asking and this struck me as a bad idea despite all the alcohol we'd consumed. How could I trust her that much when we barely knew each other? The main thing that kept me from running away was the fact that we were in my room! Thankfully, she closed the door on the subject quickly.
People talk about masculine culture and blame it for sexual violence but I don't know. I'm far from an expert on the subject but the closest thing I've had to a big brother in my lifetime was a self described "male whore." He was heterosexual and liked sex with willing women so much that he seemed to be involved with a lot of them. He never seemed to believe that they were anything but what he would be if he were a woman. At the same time, he respected my decision to wait for the right woman and never so much as teased me about it. He also respected my views on violence in general and showed me how to avoid looking like a victim without having to fight anyone. I associate masculine culture with him though he is likely a minority of one among the "manly men." I know other perfectly decent men but they would never describe themselves as being terribly masculine.
I never touched anyone without permission even when I was touch deprived enough to enjoy sitting in an over-occupied car or bumping into someone in the hallway. No, I'm not contradicting myself because I let people bump into me and the car thing was mutual crowding. It was nothing sexual but simple touch is impossibly important for human beings.
I want to know what it is that we need to do to make college campus safe for women and everyone else who suffers. Do we need to eliminate the culture of freedom that allows young men and women to flaunt what few rules there are and go from co-education to near cohabitation? I hope not. I remember and treasure so many late night and early morning conversations that I shared with women friends. If it would have kept more of my friends safe, I guess we could have talked on the phone. What do we need to do to help keep women safe?
Thursday, May 15, 2014
2 AM
"Baby, it's 3 AM. I must be lonely." - Matchbox 20
Did you know that old, overplayed song was about the lead singer's mother and her battles with chronic pain? It doesn't make the song any less overplayed but I had a sort of second wind experience with it. Then, it got overplayed through that second chance. There's something in the song I can identify with. It's 2 AM for me and not 3:00 but there's something about the middle of the night. I'm not claustrophobic but the walls seem like they're closing in. I'm not paranoid but that's when everything does seem out to get me. All my friends and loved ones abandon me at 2 AM but they always come back. Usually, they're back by 3 AM just like they never left. Imagine that!
As I've felt my usual partial symptom improvement that comes with warm weather along with the improvement from taking my meds "as needed" again, other things have crept in. As the pain recedes, I find the brain space to think of other things and other people. I've said it before and I'll say it again. You might as well go ahead and list crippling guilt as a Chiari symptom. There's an old expression that says knowing is half the battle but it doesn't seem to work that way in this case. I know the facts and I still have that metaphorical wish for a meteorite to come down and smash me in my chair without inconveniencing anyone else. That would make it an awfully small meteorite but that doesn't matter in the moment.
I'm not looking for practical advice right now. If I could be asleep every night at 2 AM, I would be but sleep comes unreliably yet not always during the day now. If I might risk making others feel bad, what I want is one of the late great Lois Silvestri's hugs. She was the one person who knew how to hug without hurting. I can still hear her voice and put myself in her kitchen as one of the safe places I've stored up. I let her talk without saying much and she's not really saying anything either despite doing all the talking. It only makes sense in dreams and old memories.
After one of dear Lois' hugs, I'd take about a ton of ice cream of assorted varieties not including anything with strawberries or coconut. Yesterday was so damp that it was cold. Today, I am starting to remember everything I learned about relative humidity. Hot air holds the most moisture. My eyes keep closing in the heat. I want my snow back!
Did you know that old, overplayed song was about the lead singer's mother and her battles with chronic pain? It doesn't make the song any less overplayed but I had a sort of second wind experience with it. Then, it got overplayed through that second chance. There's something in the song I can identify with. It's 2 AM for me and not 3:00 but there's something about the middle of the night. I'm not claustrophobic but the walls seem like they're closing in. I'm not paranoid but that's when everything does seem out to get me. All my friends and loved ones abandon me at 2 AM but they always come back. Usually, they're back by 3 AM just like they never left. Imagine that!
As I've felt my usual partial symptom improvement that comes with warm weather along with the improvement from taking my meds "as needed" again, other things have crept in. As the pain recedes, I find the brain space to think of other things and other people. I've said it before and I'll say it again. You might as well go ahead and list crippling guilt as a Chiari symptom. There's an old expression that says knowing is half the battle but it doesn't seem to work that way in this case. I know the facts and I still have that metaphorical wish for a meteorite to come down and smash me in my chair without inconveniencing anyone else. That would make it an awfully small meteorite but that doesn't matter in the moment.
I'm not looking for practical advice right now. If I could be asleep every night at 2 AM, I would be but sleep comes unreliably yet not always during the day now. If I might risk making others feel bad, what I want is one of the late great Lois Silvestri's hugs. She was the one person who knew how to hug without hurting. I can still hear her voice and put myself in her kitchen as one of the safe places I've stored up. I let her talk without saying much and she's not really saying anything either despite doing all the talking. It only makes sense in dreams and old memories.
After one of dear Lois' hugs, I'd take about a ton of ice cream of assorted varieties not including anything with strawberries or coconut. Yesterday was so damp that it was cold. Today, I am starting to remember everything I learned about relative humidity. Hot air holds the most moisture. My eyes keep closing in the heat. I want my snow back!
The "little b" Kind of Better
It can be tough to keep track of time especially when I find myself losing sleep. One strange time distortion is that days seem to crawl by but every other day seems to be Sunday when I fill my medication containers for the week. Sometimes, it seems as if I go to the pain doc once a week and not once a month. My own personal study into the subject suggests that we humans require markers in order to measure time accurately. If each day is just like the one before it except for medication filling day, you're likely to feel as if every day is medication filling day.
For a long time, pain doc days had become mind numbing routine. I list the same symptoms with the same intensity because it averages out that way in truth. The thing about pain doc day is that I tend to want it to be routine because I am at the upper limits of opioid pain medicine and because I fear change. Therefore, I was just about flattened with panic when one of my pain docs hit me with a statement that seemed out of left field. I won't get to ask her about it because she's on vacation during my next appointment so I expected to feel somewhat queasy in anticipation of potential change.
Changes have been dreadful things during the last year or so. The start of my major health disruptions dates back to a trip to visit my New York family in May of 2013. Things got much worse with the plumbing issues that followed but today would mark the one year point in this pain spike. Things have only changed health wise by getting worse during this time. Therefore, my favorite pain doc made a comment about taking me off my most effective pain medication. It sounded like the worst idea in the world since it was supposed to be my breakthrough pain medicine and I had started taking it on a schedule at the pain doc's suggestion. I insisted that the pain meds are helping and they have been at least by some definitions of "help."
After I took a week recovering from the physical and mental stress of pain doc day, I thought about what she might have meant. When you're taking all your breakthrough pain meds on a regular schedule that doesn't even cover most of the breakthrough pain, something has to give. I decided to take a small risk and went "off schedule" for the breakthrough meds so that I could take them as needed again.
Miracle of miracles, it worked at least a little. Okay. It just plain worked. I have to remember that no one ever said that taking fewer pills would cure me of anything. The goal was to be able to take my pain medication when I was in pain so that I would feel little "b" better.
For a long time, pain doc days had become mind numbing routine. I list the same symptoms with the same intensity because it averages out that way in truth. The thing about pain doc day is that I tend to want it to be routine because I am at the upper limits of opioid pain medicine and because I fear change. Therefore, I was just about flattened with panic when one of my pain docs hit me with a statement that seemed out of left field. I won't get to ask her about it because she's on vacation during my next appointment so I expected to feel somewhat queasy in anticipation of potential change.
Changes have been dreadful things during the last year or so. The start of my major health disruptions dates back to a trip to visit my New York family in May of 2013. Things got much worse with the plumbing issues that followed but today would mark the one year point in this pain spike. Things have only changed health wise by getting worse during this time. Therefore, my favorite pain doc made a comment about taking me off my most effective pain medication. It sounded like the worst idea in the world since it was supposed to be my breakthrough pain medicine and I had started taking it on a schedule at the pain doc's suggestion. I insisted that the pain meds are helping and they have been at least by some definitions of "help."
After I took a week recovering from the physical and mental stress of pain doc day, I thought about what she might have meant. When you're taking all your breakthrough pain meds on a regular schedule that doesn't even cover most of the breakthrough pain, something has to give. I decided to take a small risk and went "off schedule" for the breakthrough meds so that I could take them as needed again.
Miracle of miracles, it worked at least a little. Okay. It just plain worked. I have to remember that no one ever said that taking fewer pills would cure me of anything. The goal was to be able to take my pain medication when I was in pain so that I would feel little "b" better.
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