Jess, I'm so sorry things aren't going well for you. MG can be a very isolating disease. And what we really need is lots of help from others, especially when things get worse. There really isn't anyone who can help? Can you contact a social worker to see what they can do?

My Dad was sick my whole life. He had rheumatic fever in the Navy, which lead to a blown aortic valve (he didn't get a new one until decades later), high BP and kidney failure. I didn't know the extent of it until my 30's. It hardly mattered. Yes, he had to take a nap every single afternoon and he couldn't do as many physical things as most people do. But he had a super strong presence and I don't feel one little bit cheated!!! He was ALIVE. And I think we can all agree that, after last Friday's shooting, that's all that matters.

Your kids are kids. They still have a lot to learn about life and people. What they can learn from this is that it's not what is WRONG with a person that matters but what is right. They could learn to be more tolerant and helpful. When they are older, I will bet you that they'll be grateful you were there - no matter what condition you're in. If they were the ones who had MG and you didn't, would you love them any less? Of course not.

Screw the guilt. You are who you are. Forgive MG and yourself.

Sure, it would be great if we could all do what we used to. There are days like today when I literally wake up, unable to move or breathe well, and sort of scream, "I hate this F'ing disease!" Then I get over it and move on. I will always be sad for what I can't do anymore. So I focus on what I can still do.

Getting weaker isn't okay, though I'm in the same boat. I would still encourage you to find out if there are other things making you worse (vitamin deficiencies, thyroid, etc.). Have you seen your primary physician lately? Your neuro?

The dust that was under my bed last month is still there. It sucks but I won't end up in the hospital just so the spiders won't have a place to live. And I'm not expecting the Queen to pop by anytime soon. If you can try to afford a cleaner a couple of times a year, that really helps. If nothing else, it brings someone into your life to help and talk to.

So, it is okay. It will continue to be okay. Whether you're hugging your kids or yelling at them - which you shouldn't do with MG - you're still there for them. You matter. Don't ever forget that you matter!

Are there things that you love to do? A hobby or just listening to music? Don't forget to recharge your soul batteries every day while you cater to everyone else's. I hope things get better for you.

Annie