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[usha93]

Bleah, woke up at 3 ayem with nasty spasms. That hasn't happened in quite a while, where it was bad enough not just to wake me, but really keep me up. I'm working on being grateful for the decent time I had, through bleary eyes, tottering around on weak limbs.

Got me thinking, just a wee bit. It's been a long time since things were bad bad, which

Comments

[usha93]

Oh, on the L-Lysine, quelle trippe -- it's one of the "bases" for producing "Copolymer 1," aka Copaxone, the only approved non-Interferon drug for treating relapsing M.S.

There were things about Copaxone, and why it worked, that were poorly understood -- the formula is similar to the makeup of myelin cells themselves, so molecular mimicry was always considered part of it, but there are studies purporting to show Copaxone has immuno-protective benefits over and above the "M.S. munches Copaxone instead of actual myelin" preventing future relapses.

I really liked Copaxone too! I only stopped taking it because I'd gone from Relapsing-Remitting to the Secondary Progressive form of the disease, and, well, Copaxone is EXPEN$IVE. I'm talking a couple grand per month expensive -- Medicare Part D covers it, but 20% of a bundle is still a smaller bundle. ;-> Cost/benefit analysis said that if the benefits were only "possible" while the cost is "sufficient that I could spend the bucks on other things to improve my lifestyle," it made more

Re: Copaxone

[usha93]

Yow, I'd hope it was less than Copaxone -- Copaxone costs about $2,000 for a month's supply! =:o

[pennyann]

Pain is inevitable. Suffering is not.

Much love to you my girl. Hang in there. XOXOXO

[usha93]

I'm kind of amazed how much better things look with just one single day off. I sat around smoking weed, did a bunch of asana, smoked some more, light on the chores, heavy on the RE4'ing. I was noticing the improvements right away.

Pot plus yoga = big time relief. LOL, it's almost like, well ... magic! ;->

I'm getting better at giving my head a shake. It really only came to me while I was talking to Hel about it -- it's like, after a really good run of days, M.S. has to "jump up" (so to speak) and remind me it's still here.

A different way of looking at it is, when a bad day (or run of days) occurs, it's a way of smacking me upside the head with the fact that I'm coming out of a whole run of good days -- like, a reminder that I'm supposed to be reveling in the good times and shrugging off the bad. If it takes a real bad time to remind me -- or to get me to notice in the first place -- that times were very good beforehand, then I reckon I'm not being mindful enough while the good times are actually here

[pennyann]

I agree, without the bad days we tend to take the good ones for granted. Doesn't mean we like the bad days, but that is more a silver lining than anything else. Recognition is a good thing, even if it takes something not-so-good to get us there.

I know how tough a cookie you are and I never worry about whether or not you're gonna come out of the rough stuff. Of course you are... and I'm glad that pot and yoga were there to help you out. ;)

Enough cannot be said of a decent night's sleep either. I'm needing one of those (damn bladder has me up every 2 hours almost exactly).

[usha93]

I was thinking of you yesterday, BTW. I could feel the muscles in my thighs, calves, and even feet tensing up and pulling in different directions, and it was yanking right on my kneecap -- OUCH. :/

Hope your knees are feeling groovy, or at least much better! :->

[anonymous]

Hugs and sympathies...

I'm just getting introduced to this stuff, myself. For the last year I've had this thing where one of my feet will go into what feels kind of like a charley horse. damn that's uncomfortable. no telling what's going to set it off. Tight shoes (but only sometimes). Standing too long (but only sometimes). Once it happened when Jeff was giving me a foot rub. I had a devil of a time persuading him that he didn't "do" it...

Why did your post get tagged for a "minor filter"? Did you do that yourself, or did it just happen?

[usha93]

I hear ya -- spasticity, I know, causes a lot of "other" problems. My muscles will clench and just not want to release, and I get knots. Hel was giving me a back massage, and suddenly I got this MAJOR TWINGE down the calf and my whole lower leg started twitching and I let out an "Eeeep!" His hands were nowhere near the spazzy leg, but he jumped like a scalded dog, and was afraid to touch me again.

When my foot weirds out, doing the muscles to the sides of the spine seems to help some. Unless, of course, it's the leg muscles doing the twist! Ai yi yi.

I'm very pleased with the effectiveness of medpot for spasm, spasticity, and spazzy pain; it's less effective at keeping everything nice for any length of time. I could use pot only and completely forego the Zanaflex and get as good or better quality relief for the immediate symptoms. However, smoking a joint before bed -- it wears off before I'm ready to get back up again. Popping a pill works better for that, but no pills means we duz what we can

[lori_holder]

sorry - that last comment about the spazzy foot was from me...didn't realize I wasn't logged in.

[z111]

I can't even fathom what it must be like for you. Having my own bouts of ill health can so quickly get me depressed, angry, etc, etc. And my issues are so damn inconsequential in comparison to yours.

[usha93]

I think your situation is actually worse than mine. In my case, there's an incurable disease at play -- there's never really a return to a normal "baseline," it's get used to the current level of ability, work with and/or around stuff, move forward.

In your case, there was a horrible serious injury -- but you are recovering from it, and there's a return to normalcy, then it jumps up and kicks you again. Hmm, in some ways, it's more like when I still had relapses and remissions, maybe.

It sounds really weird, but in some ways it has been easier being downgraded to Secondary Progressive. There aren't any remissions as such, but there are plateaus, there are good days to offset the less-good days. There aren't any relapses though, either. The progression is slow, not generally noticeable day to day, more like looking back at where I was and what I could do a year ago, say