Comment

Comment by Rene M. on February 26, 2010 at 12:27pm

ok Sherry good to hear that you are doing ok. I wish I were watching the Olympics more lately but you know how that is.
Alicea
I burn incense around the computer and that helps to lessen the activity I find.
I use products to help treat our skin and wash sheets and things daily. It requires a lot of cleaning but if you do it everyday it is not that bad. We also do epsom salts baths twice per week.

Comment by Sherry Taylor on February 24, 2010 at 4:58pm

hi Renee, Nice to hear from you. you got me doing research you know including the NY Times article..a while ago now.
It's not cold here in Vancouver..warmest winter in 150 years..wouldn't you know it..when we have the games.
Grouse(one of the 3 mountains) in the lower mainland..others Cypress..doing some events, and Seymour mountain) did get a little snow last night.
If you've checked out the computers re some events you can see why we like boarding at Whistler..the breathtaking views....and it's always like that except in blizzards of course..in other years.
It's fun..expecially up there in the summer..a camping wonderland.
I've had some bad symptoms last night in particular..big burn blisters..not going quite as deep into the skin layers as in the past and no black dots coming out..but still painful..and large..one the size of a quarter..the blister was hal an inch high before it broke.
Anyway back to the Olympics I hope we beat Russia tonight since they were such sore loosers re the man's skate.
It is going to feel like a different city when things calm down after the Games.
Sincerely, Sherry

Comment by G. Alicea on February 24, 2010 at 4:02pm

Hi Renee, hope u'r well. I'm new here; I just had to find someplace to go while this disease eats me alive. I'm going out of my mind, but will narrow this down to one question: how do you manage M on a daily, practical level? Example: how do you use your computer (I have a laptop I haven't used in months) with this thing on you 24/7? how do you protect your only outlet and friend? My condition has taken a giant leap in the past two months, and I see no future. I've got tons of health problems, living on S.S., single, alone and now I'm getting scary panic attacks for the first time. Sweating, dizzy, heart pounds (i have a heart murmur and hbp)...i don't think i'll be around in six months, because this thing will get me one way or the other, probably with a heart attack. I have no hope since I know it's not going away (at least, not in my lifetime). I keep moving, finances are in total disarray, and just doing laundry is a major event. At the end of showers, my heart's pounding, and I leave the bath with sweat dripping from me, instead of cool and calm. The "clean" feeling lasts about ten minutes; clean clothes out of freezer bags in a compactor bag are already tainted when I take them out. You know the drill.

Anything to help me would be so very appreciated.

God bless.

Gladys