Myasthenic crisis occurs in about 20% of patients with generalized myasthenia gravis. Over the years, due to changes in treatment, prognosis and mortality have changed. Mortality in the last 4 decades has seen a dramatic decrease from 75% to 4.5%.
In other words, in the old days before IVIg, what I just went through had a 75% chance of killing me. And you wonder why I go on and on about needing the stuff…..
I am coming to terms with the fact that despite the miraculous effects of IVIg, I still have pretty bad MG. I am not strong. If I do too much, I am right back in that awful place of struggling to breathe. I won’t lie. It’s depressing. It felt soooooo good to be almost all better for a few days! It showed me that with decent medical treatment, most of my body still works. It also proved once again that health and wellness is more of an illusion for me than a day to day occurrance. Sigh…..
I got up this morning and felt rested. Then I cooked breakfast. I got dizzier and weaker until I had no choice but to go back to bed with my CPAP and oxygen. I slept past noon! Now that I am adjusting to life without solumedrol, I am getting less and less hyper. I need more sleep to make up for all I lost in the hospital. The really nice thing about sleep is that it’s peaceful and easy 🙂 It isn’t torture. I don’t dread the night of pain and breathing and choking problems. I just go to sleep and wake up hours later. I forgot what that was like. It’s great 🙂
I no longer have to sit absolutely still in the coldest temperature I can stand. My nerves and muscles are speaking to each other enough to breathe and function. If I have to go pee, it no longer feels like a life and death proposition to walk there and back. My life really is easier. By a lot!!!
Now that I have a taste for the easy life, I long for it to be my normal life. I have been spoiled. I still haven’t had enough energy to take out the garbage. I haven’t gone for my mail in two days. My eyes have drooped down to obscure my vision. Dang.
Just like a zillion times before, I have to go through the stages of grief. I don’t want to deal with grief!
and in the case of chronic illness: Rinse and Repeat
There is no such thing as just breezing through these steps. It’s a process. It never stops. The feelings pop up at the most inopportune times and places. Just when you think OK! I accept it all! Ummmmm, nope, there’s more.
That’s where I am right now. I am both enjoying some good stuff and mourning for what I have lost…..again. We all go through these feelings with relationships or the loss of a loved one.
I took out my anger by writing to many of the docs that let me down and to the MDA that abandoned me when I most needed them. I need to get involved with the MGFA and get paperwork to the MDA. I took it for granted that no one was going to take away my MG diagnosis and treatment would happen. I have got to get all my ducks in a row for next time. This just CAN’T keep happening to me. I am getting old. I am not as resilient as I once was. This has been a very difficult three years.