MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I haven't seen a roll call in a while so My newbie self decided to start one.
Me, Had some recent good news after the Major heart attack. Normally they wait till 3 months to check percentage heart function, but because my Rhumy wanted to use Humera they did and echo to make sure i could take that med. My heart function after a month is at 50%. For those that don't know 50% at age 43 is about normal.
Me, Had some recent good news after the Major heart attack. Normally they wait till 3 months to check percentage heart function, but because my Rhumy wanted to use Humera they did and echo to make sure i could take that med. My heart function after a month is at 50%. For those that don't know 50% at age 43 is about normal.
Leanne
A few quick thoughts... MT, I know you've had a rough go, I am really glad you are getting in a few walks, though I know it is tough to go very far. Robert, that is very good news, we'll take it-- you sound more like yourself, and I'm really glad you started this thread... Healing, welcome (if I haven't said so already... brain fog!) and glad you like this board! Beth, I am really sorry your daughter is having such a rough time, I feel like I haven't been tracking what's been going on with her as closely as I should...
Shannon, there is a learning curve for our spouses, that's for sure... you know, my usual advice is that it's really annoying when our partners don't seem to get it, and we have to explain what's going on with our health constantly, and everyone with a chronic illness has this issue, but... the thing is, sometimes we WANT them to forget, and we want to forget ourselves, ya know? When I pick it apart, it's more like, "I want you to forget when I want you to forget, and to remember when I want you to remember," which is actually pretty complicated.
For me, since my symptoms are milder, the problems are a bit different... it's rare that I will miss a day of work, but I'm not working for pay-- the therapist thing is very competitive, it's very hard to even find volunteer placements, and if you can't work a 50-60 hour week (and 30 hours of that sitting in front of a computer, which is the part I really can't do for more than 20 hours a week), it's almost impossible to find a paid internship. We're doing okay, I am lucky that my partner has a good income and my assets are well invested. Most of my pressure is self-imposed; I just hate not being able to contribute more. (I do get a few small contracts, but they're only for working on the manual for the software.)
The other issue is just the late afternoon headaches and exhaustion... I'm great in the morning and after 7:00 PM or so, but yesterday was just brutal.... 4:00, and I have to lie down for a while, my head is pounding... I just need an hour of sleep, not even sleep, just meditation, but I never get it, at least not without a sensory deprivation chamber, which I am actually thinking of building. I'm JUST uncomfortable enough that MAYBE I could rest if it was quiet, but this is the ONE hour that our neighborhood just drives me insane. I swear, our neighborhood prides itself on being "quiet" but at 4 in the afternoon, people think nothing of letting their kids scream right outside your window... our dogs start barking, and my wife calls, and then I wake up incredibly irritated... I just feel like I have to stop myself from screaming "Everybody just shut up until 6:00! Then you can play music, scream, do whatever you want until 12:30 in the morning, I don't care, but can't we have NO yelling, talking, barking, or phones ringing JUST FOR ONE HOUR, that's all I need?! I hate you all!"
But what are they doing? Nothing. The kids are being kids, the dogs are being dogs, my neighbors are just being friendly, normal people. Then I feel shitty for being angry at them.
Then today, I was fine. Honestly, I don't know what was different about today; worked pretty much 8 hours, wasn't really tired, aches and pains were manageable. The dysphagia-- trouble swallowing-- is also incredibly weird. I had two nights last week when it almost scared me, I just could not swallow food properly and felt like I was choking This week? No problem. Nothing I can think of changed-- not my diet, exercise, or anything else.
Look, I'm lucky, and I know it. Hell, I was able to go skiing last month... there are times I could convince myself that's nothing's wrong-- and usually, that's when I feel guilty. "I should stop taking pain meds, I should have a full-time job, I shouldn't be so irritable, there's really nothing wrong."
Yeah-- till I get another blood clot, or some test result is way off the chart. It's just so erratic... I think that's part of what makes MCTD so crazymaking, at least for me....