Tyson, My life has been imploding, so I haven't been around much.

I'm sorry you are not with your Mom but I sure do understand why that is necessary. I'm sorry her life is so difficult that she can't share it with you in a healthy way. Alcoholism/drug addiction (or any addiction) is an illness too and can be almost impossible for some people to recover from.

First, I'll bet that your Aunt can't justify the fact that you went on a ski trip and, because of that, you had to miss school. My parents would not have been very pleased by that either (who were both teachers). School is so important. So try to see it from her point of view. It might help with any future discussions.

Maybe a heart to heart with your Aunt might help. If not, maybe some facts would. There are 640 skeletal muscles in the human body. You have the possibility, having MG, for 1 to 640 of them to be weak at any given time. When they get weak, how weak and for how long is completely unpredictable - a fact which you still have not come to grips with yet (sorry, being blunt). If you can't quite comprehend this disease yet, you can't really expect someone who doesn't even have it to get it.

You saw the ski trip as only "How will my MG do, while I'm trying to have fun?" What you should have been asking is a lot more. How will my heart, brain and kidneys feel when they don't get enough oxygen? Will I have a heart attack? A stroke? How bad will I pay for going on the trip? A lack of oxygen will raise both your heart rate and blood pressure. Did you have sodium in any meals while on the trip? That makes things worse, adds fluid. You need to fully think things through before you do them.

And one more thing. Puking may be a "side effect" of Cellcept but puking a lot can and will do damage to your esophagus. You need to talk about this with whatever neuro you have chosen to go to. Damage like that in the body can lead to inflammation which can, down the road, lead to cancer.

You are still in the denial phase, from what I can gather. It's one thing to keep doing things in life when you have MG. It's quite another to not know yet where that envelope of danger is and to keep pushing it to find out.

And if your docs have not done an echocardiogram and/or stress test, then your heart has not been fully evaluated. An echocardiogram is where they put gel on your chest and look at the chambers of your heart and the arteries. Heart pain is not an MG symptom. Yes, a lack of oxygen due to weak muscles can cause heart pain but it needs to be checked out and definitively evaluated.

It's hard for people to have sympathy when we do things and then complain about how weak we are. I'm sure they're thinking "then why did you do that?" Well, sitting in bed or a chair all day isn't living and we do have to try to do things, knowing what will happen afterwards. But you are taking this "doing" to a whole new, dangerous level, in my opinion. I'm scared for you. Not overly concerned just appropriately concerned.

I doubt that I will ever "accept" this stupid disease. What I can come to grips with is NEVER wanting to end up in a hospital from a crisis again. So I will continue to temper anything I do with the appropriate amount of rest. Lately, it's taking more rest to make my muscles recover.

I'm not all that wise but I am sensible. If you want to live a long and happy life, you're going to have to figure out how to do it WITH the disease. Set yourself up for success by reducing as many energy consuming things around your house (like sitting instead of standing or using paper plates) and figure out a way to SAFELY balance activity with rest. I don't think you've figured that out yet. You do not want to be on a vent for a MONTH because you "like skiing." Or worse yet, in a cardiac ward recovering from a heart attack.

There was a story on the news tonight about a young child, about three I think, waiting for a heart transplant. They managed to wheel him outside in a wagon, wrapped with blankets, to see a turtle. Even he needed some kind of quality of life, something to occupy his mind and inspire him. Choices can make you feel better but they can also make things much worse.

I hope you can get your Aunt to understand all this. You need support and lots of love. Like I say in my book, "Having an illness can make you stronger but it can also snap you like a dry twig."

Please put yourself first . . . and that does not necessarily mean what you WANT to do.

All my best, as always, even though I'm pretty harsh on you sometimes.


Annie