Joy in the setting out, joy in the journey....

[usha93]

The majority of folks on my F-list met me after I'd already been diagnosed with M.S., although I discovered a few of them had no idea I had M.S. -- not something I talked a lot about back in the day, unless it was somehow relevant, ie, "Love to come to your party, but I'm having a relapse" or something

Comments

[z111]

I have so much admiration for you. I don't know whether you're involved with any support groups, but I think your courage, tenacity, spirit and your ability to articulate could be hugely helpful to those who are newly diagnosed.

You really rock my universe, hard.

How are you feeling lately?

[usha93]

Support groups can be funny things. I've been involved with online groups, Usenet, MySpace, here at LJ, and yeah, I think my online presence has helped other folks. I was involved with in-person local M.S. support groups as well for a while, and...well, I learned quite a bit about human nature.

People who are more newly-diagnosed tend to freak out when they're confronted by someone with M.S. who's in a wheelchair, for example; at least someone who obviously needs the wheelchair. They look at those of us further along the road than they are, and see their own futures, and it scares them. No matter how much everyone emphasizes that M.S. varies widely in its effects, and there's no way to look at someone else and accurately predict your own disease course, actually seeing it brings a lot of folks up short

[pennyann]

RD!!!!!

Yes, she is involved in online support groups, and SHE ROCKS!

YOU ROCK!!!

I laughed and cried and loved reading this SOOOOOOO much. This touches me, you know it does. It is familiar, it is partly my story and your story and others stories... it is recognizable and familiar like your old zen walking shoes. It makes me love you and know you and wish I could give you a hug sister friend!

I admire the hell out of you and am all the more glad our paths have crossed.
♥

favorite moment:
shaking your arm to get the feeling back.... I nearly broke my ankle stomping on the floor for weeks trying to "wake it up" from what I was SURE was a pinched nerve... hahahahaha! Oi! OY! Oi!

[usha93]

Penny, you know what's ironic -- I've managed, within the last few days, to actually get a pinched nerve -- LOL!! It's most annoying, but I'm used to "annoying." ;-) Since my right side is my "bad" side, the left side of the old bod often has to do double duty. I'm RHD (as well as RDS, LOL), but when I use my right hand, I have to brace it with my left; my left leg is the one that can take proper strides without my having to plan and check and think about it, so I guess it takes most of my weight when I "walk," as well. So I've got this pinch caused by stiff muscles bunched up and pushing against the bones, which press on the nerves, which....annoys the hell out of me, heh! Then I've got to "tightrope" the right leg -- leave "enough" spasticity to strengthen it, or I won't be able to stand or walk -- or control the spasticity to the point where it doesn't hurt or pull on other muscles or bones, and turn my right leg into a limp noodle

[pennyann]

And this is the very example of why I love you. Level headed punks are a rare breed you know?

I have a bulging disk in my neck. Nothing to do with MS, more to do with inheriting my father's penchant for disk issues in my back/neck. It isn't totally out of line, just enough to push on the spinal cord and cause me to feel that pinched nerve feeling in my neck pretty often. Like when you whip your head around too fast and your neck complains about it with a little sting? Sting usually turns into a burn and tingle with a nice little knot the size of a monkey fist. I feel you... pinched stuff sucks.

Sounds like you're handling it, as you always do, with the tools in your arsenal. That's my girl. When ya wanna be Sedated, you wanna be Sedated. Yay for the Ramones! *hugs*

All healing and light to you my friend! Any plans for the 4th?

[usha93]

No big plans for the 4th. Hel gets the day off, and he'll be BBQing -- SAFELY, we're on high fire advisory. Which means it's HOT! I told him, maybe it'd be too hot to fire up the grill, but he said nah. Don't think I'm quite up to taking a ride for a firework show yet, so we'll probably just go take a seat at the park up the hill from the house, and watch 'em from there. :-)

When it's clear, a nice place to watch fireworks locally is from the top of Mount Soledad -- you can see fireworks shows from all over town, and look down instead of up! My former boss -- the very same one who had the colleague drive me to the hospital all those years ago! -- has a house right at the top of the mountain, and since we've remained friendly with him, we've watched from his roof deck before, as well as congregating up by the cross -- center of a huge legal church/state battle, but for me, it's been "Party Mountain Landmark" since I moved here, LOL. "Let's meet at the cross on Soledad, and we'll get high," dontcha know

[crunchyb]

Thanks for sharing your story. I saw many parts of myself in your tale. The shaking the hell out of you arm to get some feeling back is something I remember well. I applaud your strength.
Take Care
CrunchyB

[usha93]

How've you been doing lately, crunchyb? Have you gotten heat waves up there yet? :/

Stay frosty! :D

[crunchyb]

It's been warm up here, not hot yet. I was very fatigued and weak this weekend from the heat I endured at work last week. I feel much better today. It was very cool last night, and I got some great sleep for the first time in ages. Other than that I've been doing OK. I am dreading the heat, I know it's almost here though. I'm a bit nervous about the heat and looong work hours coming up. My MS journey started four years ago this month. I think my brain exploded back then from the +37 degree C heat and 16hour days with a ton of stress to boot. I'm in for the same kind of hours and stress for the next month, so I hope the heat stays away! You are an inspiration to me.
Take Care
CrunchyB

[usha93]

Do you have any cooling clothing? I know the vests and such can be expensive, but some of the cheapie little "Cool-Danna" types of bandanna/scarves work pretty well for their size and price.

You can also DIY to some extent -- if you take one of the CRAB drugs, use those little icy gel pacs they ship them in, or they sell little "icy packs" in some stores -- just put the non-melty "ice" inside your pockets, or sew them into the lining of your clothes. Fishermen's jackets work really well for that kinda stuff -- all the pockets. :-)

I remember those 60-70 hour workweeks! It's not that I miss working that much, but man, to have the physical and mental energy to be able "git-R-done," that's what I miss. We've had pretty mild, pleasant summers for the past couple years, and it's like I almost forgot how much extreme heat kicks up my symptoms. A bizarre heat wave in February gave me a little reminder, and we've got a Heat Advisory for the East (San Diego) County inland areas all week, so....bleah! Been spending as much time as

[lori_holder]

Rose

[usha93]

Were I independently wealthy with plenty of time on my hands, I would love to study neurology! But I'd go into research, not practice. To be presented with something as complex and (in many ways) mysterious as the human CNS, and be able to study the brain in its complicated, multi-faceted glory....oooh, it sounds fascinating! But yeah, research is what the fake rich me would want to do, not clinical practice.

One trait they seem to have in common is simply being really good at memorization....all the parts of the brain, all the connections, all the functions. Like the Tao, 10,000 lifetimes would barely be enough to scratch the surface! I know the perception is that neurologists tend to be cold-blooded types, better with tests than with patients, and that does seem to be true of many of them, but not all. One of the major reasons "Dr. Right" is still my neuro 14 years after I first saw him is that he's so totally, completely, un-complicatedly human! He's an excellent doctor and a great, fun guy. I had to go through a couple of 'em