My visit to the "Bone Yard" and the choice.

Today, I returned from the “Bone Yard.” That what I call the mental state I get into when, after spending a long time with a doctor, both of us end up staring at each other, depressed. Doctors need to see things for themselves, which means they do thing to you that hurt. Today my GP was hoping to prove I had fibromyalgia by pushing different pressure points. By the time he did the sixth, which was down near the ribs my pain was so severe that I was dizzy and Linda was holding me upright. He left the room to get a “refresher” from another doctor on fibro points and I looked to Linda and said, “Every time I come here, I walk out with ANOTHER condition!” Well, once he moved off my torso, since you can push anywhere there and make me dizzy with pain. On my arms and legs I didn’t have pain in the right points. Then I started showing him all the places in muscles that hurt, from the muscles surrounding the small bones on my hands, to the connective tissues around my shoulder.

So we determined that a) I was in a LOT of constant pain and b) I didn’t have fibromyalgia (or maybe he will push them all next time too!). He also did a series of BP tests, which showed my very high diastolic, and he could actually feel and observe the erratic heartbeats shaking me. During last night I did some testing and found when my head is tilted right, my tongue is unable to move off my teeth, that my tongue and throat are weak on that side. That is partially why my speech becomes much more slurred at times. The doctor today told me he had noted that my smile and other facial gestures were not equal, and the right side of my face was starting to droop. Linda later told me she had noticed the same thing over the last few weeks. This is where I normally would tell you how I feel. But I am going to continue. Let me just say that in my 20’s I knew a woman who played Tuba and developed bells Palsy (1/2 face drooping) overnight due to an aneurysm. After nine months of trying to deal with how people who she had known her own life treated her, she moved to a different continent.

There is nothing more my GP can do, I must wait on the heart specialist I have already waited seven month for him to do anything, and for the neurologist to order the tests (which she apparently needs the heart specialist to agree to). Plus my GP is pushing her to get me on the very, very long waiting list for the one person in the province of BC who has dealt with Shy-Dragers, Multiple System Atrophy, and other forms of autonomic system failure. He also is an expert in Conversion Disorder (where psychological trauma can make neurological symptoms appear) so this is THE guy for telling us what is going on apparently.

I told my GP that I was all ready to be signed up for Conversion Disorder and Fibro and pretty much any combo of things they can come up with which isn’t autonomic failure. He just gave me “that” smile. Which Linda says is the, “We all know we’ve gone past that and while we wish it wasn’t so this is where things are” smile.

Then we got into pain management. And since that morning at 7:00 am I couldn’t move my right side or see out of my right eye and I thought I was having a stoke, we did what we always do: take some more pain pills and try to sleep. I talked about a bad night, like the night after the party, and the Doc says, “If that is what you are taking to sleep, you realize you can only take two more pain pills during the day.” Yeah, I told him, I know. I just have to distract myself and grit it through, but if I don’t sleep, whatever is smashing me up inside doesn’t rest and I can’t heal. The alternatives he had been thinking about he said weren’t going to work. But right now I am pretty much maxed out on Tramadol. He told me I might be able to add a single Tylenol with Codine at night without blowing out my liver. “There is just morphine (to move on to),” He concluded. I don’t want to take something I can’t stop taking for a day or two if I feel better (cause that’s going to happen, I’m going to go into remission, I know it…..right…right?).

Back home I looked up and some studies say that the Tramadol I take is 10 times more effective pain control than morphine; plus I don’t have to get a triplicate form for taking a controlled substance. It seems if you don’t have cancer then people really freak if you are on morphine. But after my nap, I was in so much pain (hey, why not poke some more spots doc!) that I couldn’t carry a conversation; I couldn’t hear the person as I just sat there with clenched teeth. After 45 minutes I gave up and took the pill. The doctor doesn’t like the level of pain/sedation pills I am on but he said, “Until we know EXACTLY what we are dealing with, we can stay with this.”

I burst out, “With the referrals and wait lists that could take another 12 months!”

He just stared at the wall for a couple seconds and then went back to writing the prescription.

I am used to being in pain every minute of every day. I have been for years, mostly. It is just when you are training, there is the endorphins and those feelings of power and energy that go with it (and you can CHOOSE to take a break); now it is just some shadow which rests upon me, stealing away everything good and replacing it with fear, fatigue and a thousand yard stare. The day after a really bad night, I can fight it, I can think, “Let’s go feed squirrels” or “Let’s go for a roll.” By that afternoon, I am ready to lie down but I’ve stopped thinking about what “can be.” The day after that, the outbursts, the bouts of crying start. After five days of bad days and in the night I spend half the time thinking about ways of killing myself. I spend the rest of the time terrified Linda or my care worker will leave me alone like this, too weak to move, and in too much pain to sleep, with unending hours in front of me.

I got home from the doctor’s and I sat and stared into space. I thought about another 12 months or more before they even try to start experimental treatments. I thought I should have asked for the morphine. MSA has an average expectancy of 4-7 years and AAN less than four years and I am looking at ANOTHER entire year in diagnosis? The IVIG treatment for AAN will likely be useless by then. And will I be able to survive on Tramadol for another three to four weeks with a Codine top-up?

I thought about the way a hero dies. I listened for a while to the desire, the compelling urge to do something. That’s what heroes do, isn’t it, they act, right? And how easy it would be to say, “That’s it!” And then the gun or the noose or for ironies sake, the pills. If you haven’t sat there in pain, your doctor telling you that we will have to “Wait and see” for 12 months, this is one of the things you think, that sometimes ANYTHING is better than just abdicating choice and simply remaining, getting by hour to hour, waiting around to die.

So I listened to that voice and all the arguments and how wonderful it would be to have a plan, a purpose and a goal which was attainable and final. And then I told the voice no. This isn’t the day, or year, or future I would have chose myself, it chose me. But if I kill myself now it is because I am tired, and afraid, yes, so very afraid of what the future holds, and the loss of control, and the pain. I will be running away. If tomorrow, I was in a bank and there was a bomb on the ground, I would fall on that sucker like a hungry mosquito. Who wouldn’t want to choose the meaning and value of our death? My father, who was odd in his own way, used to tell me to take cold showers when I was child so that I would be ready to do what was difficult when the time came. Linda says that I have already done many harder things than cold showers. Either way, I still have a choice, and I chose to not run away, to face what must be faced.

So yeah, tonight is going to be a rough night, but maybe tomorrow won’t and maybe it will and maybe every single day after it will be too. Maybe I will never have a remission. Then that’s just the way it is going to be. I do not run away simply because it is hard or because I am afraid. I won’t be “waiting” this next 12 months: life goes on, in every minute and every decision that occurs.

Cheery stuff eh? Actually, it is better to face the desire to die, to run, face the fear and choose to stay, to start looking beyond the moment of staying, the gaps of potential between the sleep and the pain. Because no one cries forever. So, that’s what I’ve taken from the ‘Bone Yard.”

My apologies to John Milton but “They also fight, who only sit and wait.”