This week’s been a real shit show. My migraines, auras, and other neurological symptoms started about 10 days ago and no matter what tweaks to my medications my neurologist made, they only continued to grow. My neurologist is new to me and we haven’t decided if we like each other yet. It’s been very touch and go, but more on him later (in another post).
On top of my neurological symptoms turning me back into the dungeon beast we all know and abhor, I have yet another infection, my fifth in two months and my second UTI in the month of March, arrived just in time for my birthday; yes, I, Capricious has made it through another year, another reminder that this disease is stealing the best years of my life.
The day before my birthday, Monday, came a long anticipated meeting with my rheumatologist, once I’d already had to reschedule several weeks before because I had been too sick to crawl from my bed. He met me with an attitude I can only describe by invoking a belligerent teenager whose been torn away from his videogames to clean out the garage. You see, I dared ask him review the protocol of a bona fide ME/CFS expert so he could actually help me; a patient with ME/CFS. Mind you, he thinks CFS is either interchangeable with fibromyalgia or it doesn’t really exist, I’m not sure which. I can’t really read the finer nuances of poopy-face fluently, but I definitely the gist when I’m looking it in the face.
The conversation—nay, lecture—began with him waving the documents around and calling this very respected and well researched doctors‘ life work “whatever this is,” which rounded to “maybe you should fly to wherever in New England this doctor is and get treated by them” and finished with “do the medications I prescribe you even help?”
As if in unison, my husband and I answered a desperate, “yes!” that I forced myself to later examine for its uncharacteristic place at our table. But as quickly as these words came out, I regretted them. My cognitive processes had caught the intention behind the question; “Dr.” Arthur Kunath was trying to fire me.
At this point, it’s probably only fair to tell you this is the outcome I anticipated. At least in part. I knew for sure he would shoot down the protocol. I had given him research about a drug before and he promised he would read it and we would discuss it at our next appointment. That never happened and it was a monumentally small ask regarding a very well tried and relatively safe drug, albeit not with ME/CFS. The protocol I wanted to try was a colossal pain in the ass with extensive testing, dangerous drugs and much babysitting. It’s like getting shot down for a credit card and asking for a $400k unsecured loan instead. Especially when asking for it from a lazy ass retired army doc who sees it as a waste of his time because surprise-surprise folks, this asshole didn’t actually get into medicine to help people, he got into medicine to send his 9 fucking army brats through college. Why should he actually care if he helps his patients in the process?
These are the moments when I wish I could still process the world with the lightening precision of the beautiful brain nature gave me and pull out an epic speech the likes of which Julia Sugarbaker herself would applaud, but the reality is I was only ever that good on paper anyway and when the moment came, all I really got out as I was fighting my way off his table was “You know what? I’ve had it with your ass. You’re fired.”
He practically cheered, of course. It’s exactly what he wanted, for the difficult patient to go away and leave him to his perfect little world on the back nine.
For me, it was the beginning of a very bad tail spin. With head splitting and anger ripe, I had no place to turn it but inwardly. I swore I would seek out no more rheumatologists, no more “specialists” unless they were specifically devoted to ME/CFS. No more medical care. “Even if I’m dying,” I stab my finger at my husband’s chest for emphasis.
I poured myself a gin and sprite and talked my husband into going to the store to buy me a pack of cigarettes. After a few arguments, he went; probably figuring it was safer in the long run to give in instead of turning over the keys. While he was gone, I played Russian roulette with my extensive collection of pills.
My exit strategy has never involved an overdose. It’s the hardest, least reliable way to commit suicide and will more than likely only land you in a psych ward. Like everything else to do with my life and death, I’ve researched it extensively. I know if and when the time comes that this disease has beaten me and I can go on no more how I will end my own life, since assisted suicide is not an option (something I consider to be very cruel and inhumane, by the way), in order to avoid the endless years of torture this illness is so good at providing its victims. I’m not condoning this for others, I’m simply saying this is my own way. Knowing I have a choice, no matter how unsavory, is how I stay sane through it all.
So was I trying to kill myself with these incredibly risky and stupid behaviors? I can’t say I particularly cared if I did. After passing out, every time I came to I was very angry that I did. Angry to still be alive. Angry to remember every fact of that day with clarity despite my broken brain. All my party mix washed down with gin had bought me was a few blissful hours of oblivion and then a whole world of hurt in which I threw up every 20 minutes for no less than 12 hours with my head hurting so bad I thought my skull was trying to make way for the vomit through the top of my skull. I also had one very furious and highly concerned husband to contend with, the real victim in this Greek tragedy I call a life.
I could try to be clever and say it was my way of punishing the disease. I could swear it was an isolated incident and promise never to do it again, but I’m not a liar and I don’t make promises I’m not sure I can keep. There really is no way to rationalize what I did or anyway to make myself feel better about it. If I were smart, I wouldn’t share such things because they make me look crazy instead of sick, but I’m not going to do that. I’m going to share this because I want the world to understand in all my brutal honesty what this disease and the lack of access to proper care of this disease does to usually sane individuals like me.
What happened with Dr. Kunath was the product of not one bad doctor, but many I’ve left along this never ending trail of sickness and tears. Like my Cherokee ancestors, I am forced to travel this trail with only death or the “good graces” of the powers that be (The CDC, the NIH, the American Medical Complex at large) to end my suffering. Like any animal who has been caught in a trap, I will eventually chew off my own foot to get free, even if the chances are good I’ll bleed out in the attempt.
I could list out every example of the many ways the medical establishment has driven me to such crazy-making. Give you a play by play of all the doctors that have blamed my weight, told me to exercise more and misdiagnosed me time and again. Instead, let’s turn back to those desperately emphatic little yeses Dr. Kunath received when asking about my medication. Where did those come from? I didn’t have to look far, only back to the years I went with without any treatment, before we had any names, acronyms, held the diagnoses, both alternately precious and useless as they are, at this point in time, in this country where still so few know how to treat ME/CFS with any real success, expert or not.
This leaves us, ME/CFS sufferers, in the untenable situations of unending desperation. Not only do we languish for years undiagnosed, but once we have these diagnoses, we must continually start over again and again with new doctors in an attempt to get even nominal support services and care. Every time I take on a new doctor, it takes me no less than a year to convince them of the validity of my illness and only then can I even begin to discern whether or not they will be willing to do the extra work required to care for me. In other words, they actually have to do research. They actually have to think outside the box. They actually have to LIKE research, but they probably became practitioners because they don’t. More often than not, when it’s time to begin the real work, I get pawned off on someone else. Someone else who is no more willing to do the work than the last asshole.
Is it really any wonder that suicide rates among those with ME/CFS are probably insanely high? I won’t quote any stats if there even are any because they would be too askew; not enough people are even properly diagnosed for it to be accurate. Not to mention the number who must accidentally overdose trying to escape the intense pain (physical, emotional, does it really matter, sometimes?) and the deeper philosophical questions of whether or not they’re all just shades of the same thing.
All I can say is that for right now, despite what sometimes feels like the best efforts of practitioners like Dr. Kunath, I plan on sticking around and continuing to fight. I may still have the distinct feeling that no one in the world gives a flying fuck whether I live or die other than my husband and me, but I’m not taking votes in the matter. And somehow, despite the best efforts of the lazy psychopaths that litter the physician’s rolls of America, I even get by from time to time.
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