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!

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.