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!
Wednesday, June 25, 2014
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.
Sunday, April 27, 2014
The Post Extreme Pain Hangover
First, I must appease the Fates and the pain gods by noting that I'm not sure my recent surge of bad days/nights is over. Five minutes from now, I could decide to save this post because I'm in so much pain that I cannot think beyond the desire to be unconscious. Presuming that this isn't the case, I'm going to write a few things about how the few days of relative relief from screaming agony seems as bad as the agony itself. This isn't true but I believe that the human brain protects itself by selectively forgetting the worse pain. Therefore, it seems as if cleaning up the mess left over from days of being beyond what can stand is worse somehow.
One of the things that I did to cope with this last extreme assault was to set aside everything but dealing with the pain. That meant spending every moment when I wasn't forced by nature's call or a doctor appointment in my chair sipping water, soda or beer depending on my strategy of the moment. There was a near 12 hour period where the only way I felt remotely comfortable was to have my teeth immersed in a sip of beer that I held in my mouth as long as I could. It surprised me that this worked but one of those big rules is that you don't question something that works. If the relief was all in my head, so be it. That meant 12 hours of pounding the beer much harder than I wanted to and now it means cutting back to a more reasonable amount of drinking provided that level of pain stays away.
My normal level of consumption is to sip one or two beers in a twelve hour period once or twice a week. Of course, I love the taste of beer so cutting back is unpleasant and I watch myself for any signs that I'm drinking for the sheer enjoyment of it. That's okay but not for while after drinking so much more than I want to drink for health related reasons. This can be summed up by two facts. I love my liver and want it to function perfectly for decades to come. Also, yellow is my favorite color unless we're talking about my skin. I don't know how much alcohol will damage my liver and I don't want to toe that line.
I spent about a month effectively lying flat on my back hoping that the vultures didn't start to circle. As I tried to transition from all out pain control mode to something more responsible, I discovered that my method for keeping my bills paid close enough to on time had broken down for at least one bill. As usual, the shock and fear of seeing a power bill for double its normal amount didn't survive a closer examination. I had failed to pay the April bill on time so they sent me the combined April/May bill with the normal May due date. I replied by making an immediate payment of the April portion. Being behind in my bills was a nightmare that I want to keep far behind me. The April bill was paid with April money leaving the May bill to be paid with May money when it arrives. There is no crisis.
The near crisis happened because my email provider decided to save money with a forced upgrade that I can't afford and I can not keep small numbers of messages in my tablet inbox anymore. If there is one lousy inbox message that I want to keep, it will disappear in a few days. That isn't long enough when I'm flat on my back dealing with a pain crisis. I need that email message to be right there with the rest of business that must be handled in a timely manner. In fact, I would prefer my bills sent by email to flash some angry red color until I deal with them. Seriously, I know the tech exists to keep bills pinned to the top of my inbox indefinitely and to change the font color after a few days of no action.
I'm going to take advantage of the fact that Melissa won't be reading this to bitch just a little bit. I brought this to her attention at what turned out to be an inconvenient time for her. I had awakened her with a pain emergency that morning because I didn't want to do so the night before. She could have resolved this with a beer delivery before I said a word the night before or that morning after a good five or six hours of extreme pain. Maybe she was concerned with my overall level of beer consumption like I was or she might have just been tired. I was in one of my usual conundrums resulting from being so dependent. I wanted to go to sleep in bed and get as many hours of horizontal sleep as possible but I was afraid of falling asleep just long enough for her to leave for work adding 12 hours to my potential point of relief. I awakened her accidentally in my indecisive state though I figure the caterwauling car chorus did the actual waking but I'll take the blame. It was an accident but I wasn't exactly broken up about it. This sort of pain has a real draining effect on my pride.
So I acknowledged her sacrifice as usual especially I didn't need to awaken her this time. I had managed to drift off lightly downstairs and spoke to her on the way out the door as she made a special trip for my sake. I suppose she could have made the stop if I hadn't awakened her that morning. I suppose I would have survived but I don't know how big a role the beer played in my partial recovery yesterday. Maybe I never would have calmed down enough to sleep and I would still be hissing each breath in and out in utter misery. We don't know because she came through.
Last night was different. I was pumped up from my small victory over panic and I saw her light was still on in the bedroom. I came into the room quietly and saw she was still awake so I told her my victory story with the added cautionary tale of the old system breaking down. You know that old saw about how men want solutions when they bring up problems and women want sympathy unless they specify otherwise? All I really wanted was an attaboy for catching the mistake before the crisis point and agreement that [our email service] sucks unpleasant and graphic things. She was tired enough to miss the distinction between a current crisis and one that was resolved. I was tired and wanted to fall asleep ASAP. Instead, we had an overly detailed conversation about using calendar programs.
Okay. Melissa was forgiven before I got to sleep a few minutes later and I hope that I'm just as forgiven. My real beef is with the lousy company making living with a disability just a smidge more difficult. The lousy email setup might be a simple fix. I might have to go searching through a few dozen pages to find the help file for the default that was changed. After the research, I might get my older setup back which would be nice yet I am angry at the idea that some fool has all but forced me to waste energy I don't have to fix a problem I didn't cause. I'm angrier that this desktop PC will need to be replaced with money better used for other things because Microsoft had to stop supporting XP in order to drum up sales for Windows 8.
I know...get off my lawn, you miserable brats and all that jazz. I'm no Luddite but I have to make and carry out big plans every time I have to make a big tech upgrade. I have yet to replace my VHS copy of "Star Trek II: The Wrath of Khan" or anything else from that series but "Wrath of Khan" was the best and I don't have it on DVD or whatever will replace those.
All of this involves things I hurt too much to notice two days ago. Life isn't fair but there should be a way to let chronic pain sufferers concentrate on feeling better instead of adding pain to the rest of life's bullshit.
One of the things that I did to cope with this last extreme assault was to set aside everything but dealing with the pain. That meant spending every moment when I wasn't forced by nature's call or a doctor appointment in my chair sipping water, soda or beer depending on my strategy of the moment. There was a near 12 hour period where the only way I felt remotely comfortable was to have my teeth immersed in a sip of beer that I held in my mouth as long as I could. It surprised me that this worked but one of those big rules is that you don't question something that works. If the relief was all in my head, so be it. That meant 12 hours of pounding the beer much harder than I wanted to and now it means cutting back to a more reasonable amount of drinking provided that level of pain stays away.
My normal level of consumption is to sip one or two beers in a twelve hour period once or twice a week. Of course, I love the taste of beer so cutting back is unpleasant and I watch myself for any signs that I'm drinking for the sheer enjoyment of it. That's okay but not for while after drinking so much more than I want to drink for health related reasons. This can be summed up by two facts. I love my liver and want it to function perfectly for decades to come. Also, yellow is my favorite color unless we're talking about my skin. I don't know how much alcohol will damage my liver and I don't want to toe that line.
I spent about a month effectively lying flat on my back hoping that the vultures didn't start to circle. As I tried to transition from all out pain control mode to something more responsible, I discovered that my method for keeping my bills paid close enough to on time had broken down for at least one bill. As usual, the shock and fear of seeing a power bill for double its normal amount didn't survive a closer examination. I had failed to pay the April bill on time so they sent me the combined April/May bill with the normal May due date. I replied by making an immediate payment of the April portion. Being behind in my bills was a nightmare that I want to keep far behind me. The April bill was paid with April money leaving the May bill to be paid with May money when it arrives. There is no crisis.
The near crisis happened because my email provider decided to save money with a forced upgrade that I can't afford and I can not keep small numbers of messages in my tablet inbox anymore. If there is one lousy inbox message that I want to keep, it will disappear in a few days. That isn't long enough when I'm flat on my back dealing with a pain crisis. I need that email message to be right there with the rest of business that must be handled in a timely manner. In fact, I would prefer my bills sent by email to flash some angry red color until I deal with them. Seriously, I know the tech exists to keep bills pinned to the top of my inbox indefinitely and to change the font color after a few days of no action.
I'm going to take advantage of the fact that Melissa won't be reading this to bitch just a little bit. I brought this to her attention at what turned out to be an inconvenient time for her. I had awakened her with a pain emergency that morning because I didn't want to do so the night before. She could have resolved this with a beer delivery before I said a word the night before or that morning after a good five or six hours of extreme pain. Maybe she was concerned with my overall level of beer consumption like I was or she might have just been tired. I was in one of my usual conundrums resulting from being so dependent. I wanted to go to sleep in bed and get as many hours of horizontal sleep as possible but I was afraid of falling asleep just long enough for her to leave for work adding 12 hours to my potential point of relief. I awakened her accidentally in my indecisive state though I figure the caterwauling car chorus did the actual waking but I'll take the blame. It was an accident but I wasn't exactly broken up about it. This sort of pain has a real draining effect on my pride.
So I acknowledged her sacrifice as usual especially I didn't need to awaken her this time. I had managed to drift off lightly downstairs and spoke to her on the way out the door as she made a special trip for my sake. I suppose she could have made the stop if I hadn't awakened her that morning. I suppose I would have survived but I don't know how big a role the beer played in my partial recovery yesterday. Maybe I never would have calmed down enough to sleep and I would still be hissing each breath in and out in utter misery. We don't know because she came through.
Last night was different. I was pumped up from my small victory over panic and I saw her light was still on in the bedroom. I came into the room quietly and saw she was still awake so I told her my victory story with the added cautionary tale of the old system breaking down. You know that old saw about how men want solutions when they bring up problems and women want sympathy unless they specify otherwise? All I really wanted was an attaboy for catching the mistake before the crisis point and agreement that [our email service] sucks unpleasant and graphic things. She was tired enough to miss the distinction between a current crisis and one that was resolved. I was tired and wanted to fall asleep ASAP. Instead, we had an overly detailed conversation about using calendar programs.
Okay. Melissa was forgiven before I got to sleep a few minutes later and I hope that I'm just as forgiven. My real beef is with the lousy company making living with a disability just a smidge more difficult. The lousy email setup might be a simple fix. I might have to go searching through a few dozen pages to find the help file for the default that was changed. After the research, I might get my older setup back which would be nice yet I am angry at the idea that some fool has all but forced me to waste energy I don't have to fix a problem I didn't cause. I'm angrier that this desktop PC will need to be replaced with money better used for other things because Microsoft had to stop supporting XP in order to drum up sales for Windows 8.
I know...get off my lawn, you miserable brats and all that jazz. I'm no Luddite but I have to make and carry out big plans every time I have to make a big tech upgrade. I have yet to replace my VHS copy of "Star Trek II: The Wrath of Khan" or anything else from that series but "Wrath of Khan" was the best and I don't have it on DVD or whatever will replace those.
All of this involves things I hurt too much to notice two days ago. Life isn't fair but there should be a way to let chronic pain sufferers concentrate on feeling better instead of adding pain to the rest of life's bullshit.
Friday, April 25, 2014
Why I Haven't Posted
Though no one has suggested to me, in so many words, that my life is easy and that living with pain is no big deal, I wonder if most people know how big a deal it is. I haven't posted because reclining in a chair and watching TV has been more than I've been up for the past few weeks since the temperature changed from Winter to Spring overnight. Let me state that more clearly. Reclining in a chair and watching TV/using my tablet to play games is too much. I end up spending the better part of a week coming down from the additional strain of a doctor appointment, posting here or spending more than an hour writing fiction. Much of that hour is spent deciding what I was doing when I left off from the last writing session.
There are a few types of discomfort that I hardly bother counting on my good days. Have you ever had electricity sent through you for medical purposes? There are various tests that send small amounts of electricity through you mostly to test nerve function. I believe the main one is called an ENG but I never bothered to learn what it stands for. There are two stages to the test that I remember the most. One measures the amount of time it takes for an electrical pulse to get from Point A to Point B. The second part to that test involves seeing how much current it takes in order for you to notice it and bite the tech's head off. (They told me the second part was optional but electrical current is unpleasant even in small amounts.) Honestly, I didn't bite any heads off but it was close. My pain doc's techs are very nice so I do my best to be polite in return.
The second piece of electrical medical equipment I have some experience with is called a TENS machine. After a nearly ten year quest, I was issued my TENS unit. The concept behind this is that it will jam nerve signals that carry pain to your brain. This was part of my quest to have surgery done to establish the same setup permanently. The dream was to jam my headaches and my arthritis pain so that I could go back to living life. Unfortunately, the tech who came to my house delivering the machine was very clear on one thing: you cannot use a TENS machine anywhere around your head. I was supposed to use the machine for 20 minutes a day every day for a month as a start but I noticed something bad after a few days. The TENS machine was sending current through the muscles that suffered electrical pain already in order to try getting to my knees. When I saw the doctor three weeks later, he praised my decision to stop using the machine because it was making the symptom worse. I just wanted to mention this to let you know my pain docs are sane and all. Also, the good news was that I was able to describe that part of my pain as electrical pain once and for all.
On a good day, I feel as though that TENS unit is on all the time with a boost from the ENG devices. I feel as though my muscles in both arms and legs are firing constantly so that it is uncomfortable to sit still. I twitch all over like that ENG current is going through me. The electrical pain never truly stops. Sometimes, I get busy enough with a project that I can ignore it. At this low level, it is the relentless quality that makes it add up to something horrible. That, of course, is a good day.
Once upon a time, I was chatting with my father about my arthritis pain. At the time, the best comparison I could give him to my joint pain was him going skiing for the first time in a season and forgetting/neglecting any stretching or warming up. This was during one of the longest good periods we had where we talked about things so he reacted very positively. There was no way he could suffer that sort of pain every day and not go crazy. That's what all the newbies say but I'm starting to doubt the existence of pain that would make you go crazy. Also, the new medicine at the time and other new medicines since then has made things better. Now, I feel as though someone beat me up to some dangerous degree but last week. Maybe someone who wasn't that tough used me as a punching bag yesterday. That's a good day.
Touch sensitivity is a good next thing to describe because it also resembles healing after a good ass kicking. Over the past year, this pain has extended to my face. I feel bruised in the literal sense though I stopped looking for the black and blue years ago. This past summer featured me going to Melissa and asking her where the bruises on my face were. The sensitivity was so bad that I believed there would be actual bruises. On a good day, I can manage this with being careful who touches me and what I touch. I don't dare do something like sitting on the floor to play with the cats because the floor is too hard. That's with the nice, new carpeting we had put in since the flood. I had to find a new recliner at the end of last summer because the old one didn't recline and wasn't soft in all the right places. I got lucky with the hotel even in the small room because there was a chaise lounge that fit pretty well with some pillows in the right places. As long as I don't have any bad touches and my stress levels stay normal, I won't have a problem.
The most intense regular pain is the back of my head. I will spend about two hours in pain that leaves me unable to speak understandably or even think clearly. The effort of pushing words out at a volume that Melissa will understand some days causes a new "bruise" to form on my head and it will fade in a few minutes unless I have to keep trying. If I rest the back of my head against the recliner's headrest the wrong way, it does something to the angle of my neck. I feel this rush of pain, nausea and vertigo that is nothing less than a whirlpool in my head. This is going on right now so I would be unable to speak with you but it seems I can type anyway.
The most intense head pain - there are too many kinds for me to list here - is known throughout the Chiari community as the ice pick headache. Every once in a while, you hear some horror story about someone being murdered with an ice pick but I'm not sure exactly how that would work. An ice pick headache feels as if someone has driven an ice pick into - usually the top of - your head. It hurts terribly and the pain is concentrated in a very small area the way you'd think an ice pick would feel. It's been a while since I stopped looking for blood but I would excuse any newbie who thought she had an actual wound. I get these ice pick headaches every day in the transitional seasons: Spring and Fall.
It just so happens that constant pain makes it very difficult to function. There were things that I took for granted that I simply cannot do anymore. Not being able to work was a serious blow to my ego. My wallet has gotten far more used to it but my ego feels the pain as if it were new. Unless my dreams come true and I make it as a professional writer, I will not have a career. I'm trying not to feel the burst of shame I felt when someone made this accusation against me: You don't plan on getting back to work. Since then, I have come to the conclusion that I don't have the resources to waste on a pointless attempt to return to work. Not being able to work closes wide swaths of life to me from not being able to invest money to not being able to go on vacation a few times each decade.
My jaw dropped when I was asked that serious question about working because I was losing ground in the ability to care for myself already. Getting a shower is an adventure in keeping my balance so it isn't an every day thing anymore. Having spina bifida makes this a bigger deal than it might be otherwise but it can't be pleasant. I make a special effort to be at my cleanest before leaving the house because I do have some pride left despite all the fraying. I am able to write fiction on certain days when my symptoms make sense but I've had to give up politics. When right wingers start spouting their bullshit, I unfriend them on Facebook and distance myself from them in the rest of my life. I have nothing spare for trying to change their minds in reasoned discourse.
I lack the energy to discipline myself enough to take basic steps in caring for myself. Who knows where the line is but I know I must be creeping up on a point where I would need some sort of nursing care to stay alive. On the average day of my life, I realize that it's probably only our relative poverty that keeps me out of a nursing home or hospice. I don't know what I should do but I know what I will do. I'll try to work on long term and short term projects, keep my faith going whether in God or Melissa and I will find times to enjoy life. I'll keep putting one foot in front of the other until I manage a major breakthrough or lose my footing and die in a very deep hole. I'm not ready to die.
There are a few types of discomfort that I hardly bother counting on my good days. Have you ever had electricity sent through you for medical purposes? There are various tests that send small amounts of electricity through you mostly to test nerve function. I believe the main one is called an ENG but I never bothered to learn what it stands for. There are two stages to the test that I remember the most. One measures the amount of time it takes for an electrical pulse to get from Point A to Point B. The second part to that test involves seeing how much current it takes in order for you to notice it and bite the tech's head off. (They told me the second part was optional but electrical current is unpleasant even in small amounts.) Honestly, I didn't bite any heads off but it was close. My pain doc's techs are very nice so I do my best to be polite in return.
The second piece of electrical medical equipment I have some experience with is called a TENS machine. After a nearly ten year quest, I was issued my TENS unit. The concept behind this is that it will jam nerve signals that carry pain to your brain. This was part of my quest to have surgery done to establish the same setup permanently. The dream was to jam my headaches and my arthritis pain so that I could go back to living life. Unfortunately, the tech who came to my house delivering the machine was very clear on one thing: you cannot use a TENS machine anywhere around your head. I was supposed to use the machine for 20 minutes a day every day for a month as a start but I noticed something bad after a few days. The TENS machine was sending current through the muscles that suffered electrical pain already in order to try getting to my knees. When I saw the doctor three weeks later, he praised my decision to stop using the machine because it was making the symptom worse. I just wanted to mention this to let you know my pain docs are sane and all. Also, the good news was that I was able to describe that part of my pain as electrical pain once and for all.
On a good day, I feel as though that TENS unit is on all the time with a boost from the ENG devices. I feel as though my muscles in both arms and legs are firing constantly so that it is uncomfortable to sit still. I twitch all over like that ENG current is going through me. The electrical pain never truly stops. Sometimes, I get busy enough with a project that I can ignore it. At this low level, it is the relentless quality that makes it add up to something horrible. That, of course, is a good day.
Once upon a time, I was chatting with my father about my arthritis pain. At the time, the best comparison I could give him to my joint pain was him going skiing for the first time in a season and forgetting/neglecting any stretching or warming up. This was during one of the longest good periods we had where we talked about things so he reacted very positively. There was no way he could suffer that sort of pain every day and not go crazy. That's what all the newbies say but I'm starting to doubt the existence of pain that would make you go crazy. Also, the new medicine at the time and other new medicines since then has made things better. Now, I feel as though someone beat me up to some dangerous degree but last week. Maybe someone who wasn't that tough used me as a punching bag yesterday. That's a good day.
Touch sensitivity is a good next thing to describe because it also resembles healing after a good ass kicking. Over the past year, this pain has extended to my face. I feel bruised in the literal sense though I stopped looking for the black and blue years ago. This past summer featured me going to Melissa and asking her where the bruises on my face were. The sensitivity was so bad that I believed there would be actual bruises. On a good day, I can manage this with being careful who touches me and what I touch. I don't dare do something like sitting on the floor to play with the cats because the floor is too hard. That's with the nice, new carpeting we had put in since the flood. I had to find a new recliner at the end of last summer because the old one didn't recline and wasn't soft in all the right places. I got lucky with the hotel even in the small room because there was a chaise lounge that fit pretty well with some pillows in the right places. As long as I don't have any bad touches and my stress levels stay normal, I won't have a problem.
The most intense regular pain is the back of my head. I will spend about two hours in pain that leaves me unable to speak understandably or even think clearly. The effort of pushing words out at a volume that Melissa will understand some days causes a new "bruise" to form on my head and it will fade in a few minutes unless I have to keep trying. If I rest the back of my head against the recliner's headrest the wrong way, it does something to the angle of my neck. I feel this rush of pain, nausea and vertigo that is nothing less than a whirlpool in my head. This is going on right now so I would be unable to speak with you but it seems I can type anyway.
The most intense head pain - there are too many kinds for me to list here - is known throughout the Chiari community as the ice pick headache. Every once in a while, you hear some horror story about someone being murdered with an ice pick but I'm not sure exactly how that would work. An ice pick headache feels as if someone has driven an ice pick into - usually the top of - your head. It hurts terribly and the pain is concentrated in a very small area the way you'd think an ice pick would feel. It's been a while since I stopped looking for blood but I would excuse any newbie who thought she had an actual wound. I get these ice pick headaches every day in the transitional seasons: Spring and Fall.
It just so happens that constant pain makes it very difficult to function. There were things that I took for granted that I simply cannot do anymore. Not being able to work was a serious blow to my ego. My wallet has gotten far more used to it but my ego feels the pain as if it were new. Unless my dreams come true and I make it as a professional writer, I will not have a career. I'm trying not to feel the burst of shame I felt when someone made this accusation against me: You don't plan on getting back to work. Since then, I have come to the conclusion that I don't have the resources to waste on a pointless attempt to return to work. Not being able to work closes wide swaths of life to me from not being able to invest money to not being able to go on vacation a few times each decade.
My jaw dropped when I was asked that serious question about working because I was losing ground in the ability to care for myself already. Getting a shower is an adventure in keeping my balance so it isn't an every day thing anymore. Having spina bifida makes this a bigger deal than it might be otherwise but it can't be pleasant. I make a special effort to be at my cleanest before leaving the house because I do have some pride left despite all the fraying. I am able to write fiction on certain days when my symptoms make sense but I've had to give up politics. When right wingers start spouting their bullshit, I unfriend them on Facebook and distance myself from them in the rest of my life. I have nothing spare for trying to change their minds in reasoned discourse.
I lack the energy to discipline myself enough to take basic steps in caring for myself. Who knows where the line is but I know I must be creeping up on a point where I would need some sort of nursing care to stay alive. On the average day of my life, I realize that it's probably only our relative poverty that keeps me out of a nursing home or hospice. I don't know what I should do but I know what I will do. I'll try to work on long term and short term projects, keep my faith going whether in God or Melissa and I will find times to enjoy life. I'll keep putting one foot in front of the other until I manage a major breakthrough or lose my footing and die in a very deep hole. I'm not ready to die.
Subscribe to:
Posts (Atom)