Well, my friend Joanna said this is cheap therapy, so here goes. I have no idea who will find this blog or how, but for now, it's my vent. I have myasthenia gravis, a neuro-muscular disease. It's pretty crappy. I've been diagnosed for 8 years now, almost 9. But I've had this disease for about 13 years. I was hospitalized in 2000, and almost died. I have a trach. I also have a fantastic husband and a precious little boy. He (Jacob, my son) is truly a miracle. I didn't think I could get pregnant, but we did, right away, and he is the light of my life. My husband (Doug) is a cross between Davy Crockett, Daniel Boone, and McGuyver. He can do almost anything. I love him with all of my heart. I went into the hospital SIX WEEKS after we got married, and he was there..for better or for worse, in sickness and in health. Amazing in today's self-first, me-me-me society.
I think one of the things I hate the most about this God-awful disease is that is can be so "invisible" to others. I'm SOOOO sick of hearing, "But you look so good!" Except for my trach, I look pretty normal. However, any moment I would have muscle weakness, start slurring my speech, have trouble breathing or swallowing...start choking on my own spit. Lovely, I know. I park in handicapped, especially at the superstores, because by the time I've walked through, I may be so exhausted I can barely make it to the car.
It's so hard taking care of a 2 year old with this disease. He wears me out by noon. It will be a little easier when he gets a little older...but right now it's GO GO GO! My parents are awesome, and come out all the time to help us. They live about 40 miles away, so it's not like it's around the corner either.
So I guess I would encourage you, if you are able, to see if there is someone YOU can help, and dive in.