Monday, September 17, 2007

Going back on death row: hoping I have MS

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?


kathz said...

That sounds bad. If it helps, you may want to bear in mind that the prognosis for something rare must be based on very few cases so it's not necessarily right. I can think of quite a few conditions, from chilhood leukaemia to HIV, where the survival rates changed quite dramatically in my lifetime. But of course I can't tell you how to deal with this - it's something you'll have to find for yourself. I'm glad you're continuing to write your blog - I hope that helps and that you also find it helpful to know that there are lots of people who've never met you who care about you and are on your side.

Elizabeth McClung said...

Thanks Kathz, it could just as easily be a rare progression of MS except....this is the only syndrome I have heard that had the heart thing as a primary and includes symptoms Linda and I marked as important but no one else would pay attention to - when I talked to Linda tonight, we said when we heard "difficulty sweating" as a symptom, we both thought (individually) "this is it".

Obviously we are still a long way from definate diagnosis (since I am not in the "typical" age group but I am the right national background) and then I will start looking at experimental stuff but this particular condition and its type kind of melts the part of your brain where your central nervous system is - no one knows why, or even how.

I am glad you are still reading now that I have decided to do the "Whole" blog and not just the happy bits. Of course, when I read of conditions like this, I start to think of those people who have had them; the difficulty they must have had - this has been a guided tour to thinking about what other people face as they are diagnosed with these conditions. I literally thought there were no other neurological conditions I hadn't heard of, and this week, there was this one AND another one which fit many of my symptoms - never heard of before.

Zephyr said...

I don't know what to say, other than I hope there's a chance this thing you have is non-fatal. I would miss your crazy blog posts!

Sober @ Sundown said...

Hi Beth,

I would have to ditto zephyr's comment.... I would miss your posts too.

Casdok said...

People generally say the wrong things as they dont know what to say.
I cant begin to imagine what your life is like. Am sending you some long distance reiki.

KateJ said...

I'm so glad you're still blogging, too, though it must be incredibly difficult to share such pain with strangers.
Difficult especially if your illness or syndrome is so rare that there aren't any "fellow-sufferers" out there you can compare notes with. The people I work with who are HIV+ say they really like to get together with other pos people - either face to face or on line - for mutual support. One guy told me recently that it was only when he met other pos people for the first time that he realised there was life beyond the diagnosis.
Not a lot of comfort to you right now, I don't suppose.
I'll certainly keep reading your blog, though, good or bad news.

GayProf said...

I agree with Kathz. If it is relatively rare/recently documented syndrome, the prognosis may not be accurate.

In any case, I am not wishing for you to go to a "better place." I think that you need to say here with us. If we have to suffer through Bushie, so do you.

Sara said...

Now, look, I don't believe in being all fake cheery and pretending things are better than they are, but I also don't believe in writing the future 'til it happens, so, for what it's worth, it may please you to know that I am three and a half years through my sixth count of five years to live. I have lived so long with a disease that was already supposed to have killed me twice by the time it was diagnosed that the actual statistics have changed from 20% chance of surviving five years to 60% chance of surviving five years.

Your situation is not my situation, of course; you sound like you are far more ill than I have ever been. But I understand the chill of looking into the abyss. I do. I also understand the nausea of preparing for a not-exactly-warrior's death (except on extremely metaphoric terms). However, today is today, and tomorrow might come after all, and while doing your best to accomplish what you want to while you still can is always a good plan, there's no need whatever to start ticking off the days.

The truth is, you could go sooner, and for entirely unrelated reasons such as getting hit by the proverbial bus -- or that bolt of lightning your relatives may have predicted for you. (They sound like that kind of relative.) On the other hand, statistics and examples are only statistics and examples, good for eying trends over population samples, not necessarily so accurate at describing you personally.

This is the place I've reached after many years of walking around with the pendulum swinging over my head and sometimes swinging pretty damn close (but not as close as I think it's gotten to you, and at least I know the name of my pendulum). I don't know if hearing about it helps, though naturally I hope it does or I wouldn't have said it. However, if it's obnoxious and cussing me out for being that kind of obnoxious will please you in some way, please let 'er rip. Meanwhile, my fingers (my metaphorical fingers) are crossed on your behalf, and I categorically refuse to uncross them.

elizabeth said...

I just popped in to tell you that I was thinking about you today. And this just sucs. Wish I lived closer... I'd bring wine and we could all get smashed. Not that it would help in the long term but I could at least entertain you with my drunken antics for a few hours. *hugs*

Daniel, the Guy in the Desert said...

I'm pretty sure that "better place" isn't in the Arizona desert.
But it sounds like the Doc was going through his Merck's Manual looking for symptoms to match yours, and was connecting the dots.
I'm still hoping they'll get a more comprehensive picture of all the things that are going on with you, health wise.
It just sounds like there hasn't been a lot of genuine co-ordinated effort between all these specialists.

Artistic Soul said...

I was going to say similar things -- just because the prognosis isn't good doesn't mean you won't do well with the proper treatment. Medical info is always talking about worst case scenarios - so try to stay positive, even if it's hard!!

Elizabeth McClung said...

Zephyr: I am with you on both the non-fatal AND the continuing crazy blog posts.

Sober: thanks for coming and commenting (I am so guilty of not stopping by your blog - please forgive)

Casdok: See, if you can't imagine, then I just need to write better! Haha. Seriously, thanks (but I do need to write better!)

Kate J: In some ways having a name helps though there isn't anyone else because I can look into the progression and see what comes next (coming attractions so to speak) which is how I eliminated ALS, Lupis and a bunch of early contenders. So there is a tiny feeling of control.

Gayprof - you make me laugh, I was only thinking today "Is it possible for the US to elect ANOTHER conservative" - Then I thought about last election and though - oh yeah, anything is possible.

Elizabeth McClung said...

Sara: thanks for the posting of your comments - It does help to know when someone has that 'thing' hanging over you, and that eventually you think of other things.

I don't want to be "that person" as in: "I'm going to be that 1% person who lives 20 years" - This is not to say I don't want to live 20 years, I do, very much so. I want to be YOU, the person who is way against the proverbial odds and I will of course start working toward that in terms of cardio, or crosswords or whatever I think might help - and you are right, I have to live to live, not live a countdown. Yet, I think it will be a while before I can ignore the clock in the walls, so to speak.

Linda and I made a promise that we would never be 'that guy' - there was a guide who took this guy to the top of everest, and coming down he hit a blizzard, they camped and he knew that by morning, miracle excepting, he would be dead, he called his wife on the cell phone and talked about this and that but NEVER TOLD HER anything was out of the ordinary. We promised that we wouldn't do that - that we would look things in the face and live and tell each other what we needed right then. I don't know if that makes sense.

But don't worry, if anyone is living forever - it's me. It is just I have to get used to this, this pronouncement. Obviously, if I died, I would have no readers, so I simply can't die. But I had to write about what it felt like to get hit with that - and I am glad you wrote too - it helps.

Penelope said...

Like everyone else, I'm glad you're continuing to write. I'll certainly continue to read.

I like the promise you and Linda have made of not being "that guy". I'm one of those people who would rather have direct bad news than to have people skirt the issue or ignore it. And in the end, I think it's more realistic. In my experience, it's made coping with things easier.

I mostly hope you get answers soon. Having played the "waiting game" for far too many years now, I'm starting to think the "what-ifs" are the hardest part.

Good luck.

Elizabeth McClung said...

Elizabeth - thanks for coming by - drinking does sound good right about now, doesn't it.

Daniel - that's just it, it seems that to get the specialist to talk to each other you have to go to the mayo or John Hopkins - grrr!

Artistic soul: I am sure things will get better (unless they get worse) - I just am tired of playing the testing game, when do we get to treatment?

Penelope: Many years! Ahhhhhh - run away, run away! Can't deal with this yo-yo life for many years.

rachelcreative said...

What a total brain masher!

No words of wisdom - but a "yikes - I'm thinking of you".

(And I'm with everyone else - I want to read on - wherver that path leads).

Tom said...

Since you don't have a diagnosis, I thought I would write to you about Arnold-Chiari malformation. My wife has this and has many of the same issues you seem to have, although her weakness is more in her upper body. She is able to walk with a cane. However, she drops things constantly because she has little strength and lacks sensation in her hands and arms. She doesn't have the visual issues but they are common in Chiari. She was originally diagnosed by accident because she went to the hospital after passing out and a routine MRI showed the malformation because it was so large in her case. Treatment hasn't helped very much.

Anyway, I won't be offended if you don't take this out of moderation if you don't want Chiari mentioned. I just wanted to bring it to your attention because it is missed so much by doctors although it appears that you are doing your homework.

P.S. There are some pictures of my lovely wife after her brain surgery here:

belledame222 said...

fucking hell. just catching up here, working back. and saw the follow up where you named it. I looked it up.

one thing i did notice was that besides the prognosis of x_x years varying from site to site, most of them noted that this condition mostly affects men in their 60's and up. (apparently Johnny Cash was one of them?) which, well, I'm not that great at my stats class, but generally I'd think that would tend to have something to do with average prognosis length also.

on another post, i can't remember which now, you said something about you're not writing as well as you'd like or up to par or something; and, I know you're a perfectionist, but damn, your not-up-to-par is miles above any -number- of peoples' par.

I'm just...incredibly sorry you're having to deal with this. All of it.