I woke up, sat up…and screamed. The pubic area swelling got bigger overnight. Huge šŸ˜¦ I called my internist. His nurse spent 17 minutes screening me….then said he was sending an ambulance. I said NO! I wasn’t willing to leave my power chair behind. I took TRAX to the hospital. I handed the woman my ID in the ER and was called in instantly. Almost as quickly, my port was accessed and blood was drawn. I had an ECG, chest X-rays, anĀ echocardiogram and who knows what else? It was a blur. I peed in a cup and was alarmed to see how dark it was.


If you’ve been reading my blog, you know my biggest problems….the sweats, intense chills, lung problems, MG worse, SOB, weakness, edema, etc. Over the course of 10 or so hours, I saw many different nurses, docs and techs. The ER mostly cared about my heart. I insisted my heart was fine. By late afternoon, I had a mean doc with no listening skills. He says I have over 50 pounds of excess fluid on me. He said he wanted to put me in the hospital, drain fluid off me and then send me to a rehab facility. I did not want to go to rehab. He said then he wasn’t going to admit me! He got paged and never came back. End of “discussion”.

Hours later, a nurse came in with my discharge papers. I was supposed to go home and take lasix. They never tested my pee or weighed me. I have been taking diuretics since November…and they only make me sicker and more swollen. Nobody cared that MG makes me too weak to make multiple bathroom trips… the MG needs better treatment. There was no one to argue with. Yup….I cried at the futility of it all….and kicked myself for even going to the ER.


There’s a lot more…but I am literally beat and am in the grip of violent, icy chills šŸ˜¦