It seems like illness is a bit like prison. At first I thought “I can do this, how different are things going to be?” Then, after a few months getting a quick trip to the ‘green mile’ ala Death Row; it is very different sitting knowing that people who are where you are only go in one direction (“toward the light” as they say.) But then, suddenly, through a few different opinions and the condition stabilizing, I was taken off Death Row, put back in General Population where I amused myself earning cigs and yard cred by translating latin and other doctor speak to the inmates.
Seriously, it is a very different feeling to think “gee, maybe I’m disabled but this could go on for quite a while” than being marked with Death. One has problems like I had recently, “I don’t have enough contact with people”, “I don’t have a job.” – you know, long term problems. While the other has this ‘staring down the shotgun barrel’ problems like “Do I ever want to see Paris again?” or “Should we have a kid RIGHT NOW, so they ‘might’ remember me a little once they have grown up?”
And I had forgotten pretty much what it was like to be on Death Row, until last night. I am trying to find a new GP, and this one wanted to get some sort of history of me from one of my specialist. I remembered that I had a recent letter from a specialist who had a “forward a copy to the patient” policy. When Linda was photocopying the letter she said, “Did you read this part at the bottom where he says he thinks you have blah-blah syndrome, or another of the la-de-da type diseases?” I hadn’t. I went on Google. I typed in the Syndrome, which has about six different names because it is pretty darn rare. The first symptom was the arrival of heart problems including positional hypotention, dizziness, blackouts, heat insensitivity, loss of balance, headaches, severe weakness, intermittent vision problems, slurred and impared speech, lack of sweating, difficulties breathing, irregular heartbeats, and diarrhea. It was the first possible syndrome which included the heart problems and the hypotention as primary symptoms (instead of “may happen in 1 in 1000 cases of this disease”). Indeed, though I wasn’t the typical age or other grouping, it still seemed like a very good fit.
My hope went up. All right, finally a specialist who knows what they are doing! Especially since the anesthesiologist at the hospital let slip that the heart problems were neurological issues. I scrolled down to find treatment. No treatment. “Syndrome ends in death X to X years after first symptom.” Shit!
Then it went on to describe the death, in detail. It’s not a particularly good way to die; certainly not how I want to die. Even the “some patient” deaths weren’t particularly cheery, since there were only two: the best was an inability to breathe and choking to death.
Of course, now I am starting to read back on the blog, and Linda is telling me that my heart beat and passing out where occurring in November 2006. If the majority of patients die after X amount of years after first symptom, does that mean I have already used one of those years up?
Oh, the monkey was on my back last night big time. It was hard to go to sleep as I was thinking, “hey, this is the first person to actually name the type of disease” – and thinking that as this syndrome, like all others right now is a disease of exclusion, can I really afford to wait another year for a confirmation, if I only have a limited time for getting on with anything I might plan on doing?
There is something about that black and white doctor speak which just flips switches. Two days ago, I was talking what happens when they fix the thyroid; getting a job, buying a condo over the next 10-15 years. Today, I am HOPING I have aggressive secondary MS because while there isn’t remission and your life sucks; people live fairly long, like 15-20 years. Because right now, rolling around in an electric wheelchair for 20 years sound pretty okay.
It’s like the guard showed up and said, “You’re back on Death Row.” And I’m going, “I think you’ve got the name wrong; and there are a lot of Elizabeth McClung. Are you looking for Elizabeth McLung? She’s on cell block D?”
I know in a week or two it will sink in and I’ll readjust, until the next bit of news floats down. I try to cheer myself up by reminding myself that in this town, I could get hit by a car any day (since they don’t slow down for wheelchairs). I decided to “live life to the fullest” this morning which meant by 2:30 pm I was on the floor sucking oxygen, and pretty much stayed there until 8:00 pm. Oh yeah, that fatigue crap. I told one woman that I was freaking out about the news and she said: “I’m sure you will be going to a better place.”
Wow, okay, now even the people I talk to want me to drop dead pretty fast. Geez, how bad do I look when people start telling me I am “going to a better place?” Does that mean I am going to Seattle? Australia? Is there some clinic they know about? No, I think they mean the heavenly beyond where I am supposed to get a lobotomy so that playing a harp endlessly is thought of as BETTER than my life now. Now do you see why I am clinging to life so desperately?
2 hours ago