Gosh, I have been TERRIBLE about posting...but there have been so many TERRIBLE things going on!
First a wonderful thing: August 1st was my wonderful hubby's birthday, and we had a really nice day.
But that's where all the shiny happy crap stops. SO many of my MG friends are having BIG troubles. One needs IViG desperately, and the hospital is telling her that they can't get any for at least 7-10 days. For a myasthenic, not having your treatment when it is due can do many horrible, TERRIBLE things to your body. PLEASE pray for my friend Suzi, (who happens to also have a trach) that her body holds up...but I'm specifically praying that the IViG comes in tomorrow.
Then there's my dear friend Karen in California who is in the ICU, on FIVE different IV antibiotics. She is very sick, and in pain. She went into the hospital via ambulance I think Friday, and has sepsis. PLEASE pray for the docs to find something that kills all her infections, without killing her! Most of all I am praying that God will simply heal her of all these things coming into her body that DO NOT belong!
There are so many others....too many to mention, really, but please just pray for my dear MG community...so many are struggling physically, emotionally, financially...this disease never. takes. a. day. off.
It's so frustrating and scary and unfair.
And to my MG family: HANG IN THERE!!! You are stronger than you think. You are tougher than you feel. You can do this. Fight hard, because there are people who love and need you. Fight hard, because this world is a better place because YOU are here.