Peaceful weekend, but a little rantiness

It’s been a fairly quiet weekend here at the Nuthouse. House full of kids in and out, Moomin’s friends and Peanut from next door. They’re in the hot tub right now all flailing around. (Thankfully supervised by someone else.)

I have done increasing amounts of housework and cooking and playing with kids over the past week since stopping baclofen). I also looked a bit at work again finally (not working so much as just paying attention) and poked at some layout for poetry books. In short, I’ve been perking up and able to do more.

Days have been pretty good, but by evening I’m in a lot more pain and am unsteady on one or both feet.

My right foot and calf remains messed up. It does all the weird things it’s been doing; right now it hurts and my outer toes and ball of foot is weird and tingling and numb, and doesn’t seem to work right.

But!

It’s nice… really nice! to have my arm strength back. I continue realizing how bad the last two months have been.

Also the strength in my left leg. I can go up stairs slowly with alternating feet. NOt all the way up a flight of stairs, but a bit of the way, with the crutches or 1 crutch and handrail.

I worked all afternoon helping Zond-7 pack some more for final bits of moving to his new place. Mostly I did the kitchen and I did it sitting down in a chair. We got back here & I collapsed & he helped me take off my boots and pants. I took half a vicodin. An hour later or so I took a very perfect bath.

You realized that on the baclofen I barely had the strength to wash… and to get undressed and get in the tub and dress again was an ordeal… so exhausting and painful & miserably cold to get undressed & then be wet afterwards. I was bathing only every 2 or 3 days, for all of November and December.

I look at how I was after the EMG and I was bad, but you know? Not worse than I was other times, like this spring. It was the drugs that messed me up catastrophically, & how.

RANT ALERT. Here it comes!

Mailing list buddies are telling me all the details of their years and years of diagnosis and un- and re-diagnosis. People who were told PLS, then rediagnosed with it, then had abnormal EMGs, then didn’t then had lesions and then didn’t later… It’s obviously a hot mess. Looking at all the emails, what I see is that by the time you’ve been through 10 years and 6 diagnoses you’re on 6 different drugs and who knows which end is up any more. Add that bit of data to my conviction that we are all vulnerable to overdrugging and this just strengthens my resolve to stay off all the drugs that get thrown at me. If I wanted, even slightly, I could right now legally be on vicodin, carisoprodol (Soma), baclofen, and Lyrica, with ambien on top and anti-depressants and anti-anxiety meds on top of THAT. In short I could be high as a kite every second of the day if I told doctors that I felt better that way — because I’m upper middle class and have insurance. While people vastly more miserable than I am cannot get the most basic medications necessary for their health; and while other people in difficult situations can’t get any sort of medical care or psych help and turn to street drugs and get thrown in jail.

I have more ranting to do, but not here & now. Must process a bit more in semi-private before I bust out with it.

Oh… and it feels a little weird for people to congratulate me on being un-diagnosed. I mean thanks but, it’s just odd feeling and I don’t know what to say. Thanks but you know what things are still hard and I’m still in pain and still afraid for my future in so many ways. Yes, it’s a relief that I have some objective evidence of not having ALS. Yes, it’s a huge though somewhat qualified relief to have another neurologist say I don’t have PLS and she doesn’t think I have MS either. I mean, yay. But… on the other hand… still in pain and disabled and dealing with the same things I have been since early last year. And still with a hefty chunk of uncertainty as to why and what happens next. I’ve still got one neuro saying one thing and the other disagreeing. I do appreciate it that other people are and have been worried about me and haven’t wanted to hear it that they might have to see me go through a progressive illness. But, you will have to bear it that I’m not like… BETTER. okay?


4 Responses to “Peaceful weekend, but a little rantiness”

  1. elswhere



    Okay.

  2. badgerbag



    Daring Els! I shall blog a bit before bed in reply…

  3. elizabeth



    Well, from my personal experience, I thought absolutely nothing could top the frustration of having six specialists all disagree. That is, until they all started to agree on something I REALLY didn’t want to hear. When I started in Dec. 06 and met this oddly intuitive wheelchair PT in March 07 she told me that I should hope to have ‘some sort’ of definative diagnosis by the middle to end of ’08. Well, that was absurd, was it? My car mechanic can figure out what is wrong with a car in 2 weeks maybe 6 tops if he is wrong the first 5 times.
    I know this is going to be a ping pong/yo-yo emotion for a while and quite honestly whatever you have does seem progressive and chronic (you could always make up a name like SPLAT disorder) – oh God, how did I get in this hole and where do I dig from here: um…..okay, what I mean is, your diagnosis can’t help but be part of your identity in some way, and they are messing with that (and thus messing with your head), but please find some center in which you know your medical identity and are just waiting until they are smart enough, or listen to you enough or whatever it needs enough to have the correct name produced. Which in some ways will change nothing and in other ways will change everything becuase when EMT’s come or overly inquisitive taxi drivers or those 100 reasons you have to fill out “medical condition” on form you can say, “I have SPLAT” instead of the pages and pages of currently not entirely connected medically stuff except that it is all happening to YOU.
    I really hoped that helped and if it didn’t I apologize profusely.

  4. badgerbag



    We’re on a roll tonight! Yes exactly… that is the feeling I have, that I’m in long-term mystery diagnosis land without a lot of certainty. At least my first neuro looked at me straight in the eye and said “The only way to know for sure if someone has PLS is to autopsy them.” I kind of appreciated that moment.
    And yeah it seems to me like i have some freaking variant of neurotic middle aged lady stress disease which you get told is Maybe Lupus or MS or RA forever until it clearly isn’t, and there are an awful lot of things that it can’t clearly not be and yes it’s not helpful anymore to have a magic (yet likely meaningless) diagnosis. So I will forevermore treat this sort of diagnosis as a Working Hypothesis Until Disproved.
    (But it IS useful and smooths the way for the inquisitive who need a slot and a peg and a truth.)
    It is interesting how people on mailing lists ID themselves on diagnosis and date. For example they will sign like this:
    – Laliane, New York
    DX’d MS 1986
    DX’d PLS 1995, HSP 2005
    Usually not more than like 3 things, but it is an acknowledgement of the way the this-and-that diagnosis is meaningful in itself. A lot of people share that basic experience of being jerked around into different medical “truths” and a lot of your identity gets bound up with the communities forming around those diagnoses.

Leave a Reply