Hey erin, Girl you need to cut you some slack!! You are soooo new to all of this that you haven't had time to get that rug they yanked out from under you back where it used to be!! Accepting the MG is when you will have better days mentally. The process stinks, there's no way to get around that fact. You have to just press on. Take each day/hour/minute for what it is. If you can do something go for it, if you need to be a couch spud, do that. You can't fight the MG. You have to give it a bit of control IF you don't you will be in club med every other week for overdoing it and not listening to your body.
Remission, I don't want to be the lil black cloud, but in reality there is no data that a thymectomy does more than line the pockets of the surgeons. My surgeon told me up front that the chance of remission was almost non existant in my case and that the best I could hope fro is a lesser dependence on medications to control the MG. Well it hasn't quite worked that way. But when your hemo sold you that bill of goods I am not sure if he/she is incompetent/misinformed/overly enthusiastic but I think the the sooner that you understand remission is rare the better you will be able to settle into the day to day things. You will have days when the MG seems like a bad dream that you woke from; the next bad day, it is like that rug is being pulled out from under you all over again!
Family, oy. Who among us can deny having the same issues from time to time?? I think missy can tell a story about her family visits when each morning they fully expect her to be healed thru that night. Sigh. The thing that makes it worse, one day-------wonder woman is in the building--------next day, blunder woman. We never know who is going to appear. And when we make arrangements to be somewhere or do something and have to bail, it just doesn't make sense to others. But in time they will either accept or not be butt heads about it. We have to remember that our families are going thru a great deal with our diagnosis as well. AND they have the added issues of not LIVING it so they can't fully grasp what is happening. They feel helpless and hopeless. Why is it yesterday you picked up the house, shook it out put it back on the foundation and now today you are having trouble pour a cup of tea?? Not very many things in life work like that. ya know if you have cancer, you are sick with it,l you either get healed or die. MS, you just keep getting worse bit by bit. No going from good to bad and back. ALS you loose an ability it is never regained and you get progressively worse. Even the flu, you are sick, you get over you are healed all is well. See we mess with even the basic principles that most people operate under when it comes to being "sick" And of course aside from looking ****** off and stoned we don't "look" bad in most cases. LOL. Again reinforcing that we may be not as weak as we let on. Sigh.
WEll this is already way way to long!!

You should do up the magnetic bumper stickers like they have for Autism.

I actually saw that today - my hubby pointed it out - and have decided that ALL of my family will put them on their cars........along with the shirts - that includes YOU Aaron.....................Live it, learn it, love it!

They should be hypercolor shirts..and MG awareness leg warmers.

I I'll put a magnet on my car, if you make them.

Yeah, it HAS been hard, but I have to believe that there is a possibility of remission for one of us - without that I'd have a really hard time dealing with all of this. Call me crazy/overly optimistic, but I just have to believe that ONE of us will have some sort of remission. One of the girls in my support group here had a thymectomy and 6 weeks later was walking 7 miles - I was happy and jealous all @ the same time - and has been in remission ever since (11 years) so I know that while my chances are slim, I have to keep believing in it...........

So you are still having IV IG every week? Does it make you feel super? I love that stuff - liquid gold.........

I am definitely trying to take it easy, but it is hard! I miss being able to do whatever I want, whenever I want ( who doesn't though?)...........

Do you have all the gross side effects of Prednisone? I'm down to 20 mg every day, but still wake up sweaty and shaky, still have "moon face" and have ballooned up to 140 lbs (my usual weight was between 115-125), so that has been a big change, but @ least I can eat, breathe, walk, etc.......

well, got to get back to work - fortunately I work for my hubby so I get a little slack.................

Take care!
Erin

You better wear them though! I can order some within the next couple of days...........

You know I always wear leg warmers anyway.

BTW..I ment to ask you this earlier..Is there anything promising VIA stem cells with MG?

You and your leg warmers.........sexy! To answer your question, I really don't know enough about MG to answer your question, but maybe someone who has a better grasp on MG can answer that for you. There seems to be a lack of knowledge in the medical community regarding MG - there just aren't a lot of us out there - whats are the stats - 200 people per million? Fortunately Dr. Ibrahim takes good care of me - thank God - he has been so great! BTW - I uploaded that pic of you and Megs - check it out when you get a chance..........Are you going to take Devon camping this weekend? I know he is really looking forward to it! I'll pack your supplies if you'd like - don't make any snide remarks
Erin

Factor V Leiden is like 1-1000..Guess were both "lucky"

Maybe we should buy some lottery tickets? What do you think?