WEll, I think it is great that you are still so active! I love kayaking! I tried it in Belize and had a blast! The water was so still and calm, but those goofy "sea lice" got a hold of me and my hubby - yuck!
If there is any way to stay off the 'roids, I would certainly do so! I really, really, really would prefer to not be on them, but by the time I was diagnosed I was waaaaaaaaaaay sick and needed something that minute, so my doc started me @ 10 mgs a day and doubled it until I was up to 80 mgs - in 8 days no less! I was waaaay big!
Today was my fourth day of IV IG and I feel pretty good. Since my diagnosis I've been in and out of the hospital quite a bit, but I guess I need it! THe nurses @ the Methodist are AMAZING! As soon as I'm in remission, I'm gonna volunteer there ~ they have really been kind to me. I've been very blessed!
My son is 16 and is the love of my life! He has been my rock - although it should be the other way around........I keep telling him that I should take care of him, not the other way around........but he does worry........
My hubby has been great as well! In that respect, I have been very blessed.
All of the nurses have a crush on him. They have told me that they have never seen such a supportive hubby.
Denial happens. It happens all the time. Just don;t wear yourself down @ all. You need to keep up your strength. It will get better.
I was recently told that back in the 60's, MG was really, really bad. I mean really bad. It was kind of a death sentence. Recent medical advances have made it possible to live a normal life. You can look forward to a normal life.
You and your son and wife (and one on the way) will have a wonderful life! It will get better! The great thing is you were diagnosed before you got too sick!
After my last dose of IVIG, I was able to decorate my entire home and put up my xmas tree - in one day! Last year, I wasn't even able to do anything - just lie around and feel sorry for myself. Granted, I overdid it, but I didn't care! It was worth it to see my families smiling faces
We were also able to have a xmas party for my hubby's clients - he's in real estate and that was great as well. After that, though, I got sick again and needed the plasma exchange.
Speaking of plasma exchange, my neuro does have some patients that only get the IV IG or the exchange - no other meds (except Mestinon). You may want to ask about that......... Since you are a nurse, you need all the immune system you can get! I don't know how you do it. It must be so hard! Being around sick people all day must be very trying.
The Hill Country is beautiful! I've got the moving bug again and am hoping to get a garden home. Since I am married to a realtor, we can get some really good deals......I dunno.............
Erin
Quote:
Originally Posted by Gdbyrd
I had read that about mestinon, and brought that up with my Doc, but she feels that since I'm taking such a low dose(per weight), it's unlikely that is what's causing the twitches. She thinks it's more from weakness. Who knows though, ya know?
I dunno about the heat. I'm weird. I can get out and paddle on a kayak for 2-3 hours in the heat and not get too bad(albeit I do take mestinon before i hop out there)..but even without meds I do OK most of the time.
That's the denial issue. I really don't notice feeling weaker. I guess I needed a good baseline. I get a little tired here and there with my arms..and my tongue if I'm having to talk a lot. Around my eyes and my mouth/jaw..but I never paid any attention to this stuff before, I feel like I'm looking too into it now! I don't have any really noticable symptoms either..except for my eye, but it's that way when I wake up in the morning and doesn't get any better with meds. Today I haven't taken anything and I feel fine, still getting twitches here and there, but otherwise not weak/tired one bit...
Ugh, it's frustrating. But for now it works. I love Tx. Been here my whole life. I would love to move up near SA, in the hill country somewhere. Maybe a little later in life I can do that :P Steroids sound like NO FUN. I really think I'd have to be bad to start taking them. It's nice that they're helping you though.
How do you do with your kids? About how old are they? I worry a lot about that, I've read how MG can kinda progress and make you weak all the time..I can't imagine that with my little buddy. Not being able to toss him around the house would be awful : /
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