OMG! This cracked me up big time. This is day 4 in the hospital. Half of the docs and every nurse have come to my room to see the repository of so many rare diseases. I was in ICU Tuesday and 12 hours later I was healthier than I have been for 3 years. Nobody here had ever seen such a dramatic turn-around. Thank you IVIg infusions!!!!!!!  I have never been talked about so much in my life….that I know of :-p  Every sort of medical person, aide, housecleaner and food deliverer seems to know my story. Good thing I am sooooooo not a secret keeper! 🙂 And the funniest thing of all????? Somebody started a rumor that I am nice. Ha ha ha ha ha. Too much fun for a hospital stay 🙂

Now it’s Sunday morning. What a maelstrom of mixed emotions! In the middle of the night and then this morning when I woke up, the first thing I did was choke my brains out. I was so tired that I slept like the dead. I don’t think I moved around in my sleep. Both times I woke up with too much snot and saliva in my nose and throat. The second I woke up, it was a struggle to clear it, hence the choking. This morning it was I-might-die kind of choking. The weakest link in my whole body, besides the MG stuff, is my incisional hernia. When I choke, I can feel the hernia rip and roll. When I stand upright and/or walk, it also feels like it’s ripping. My whole body is quivering and trembling after the choking. Scary!

Thanks to all that solumedrol and IVIg, my body is artificially hyped up and most of my nerves and muscles are talking to each other. I seem OK if I am not at all stressing any part of me. When I move too much or choke too much, the fragile facade instantly crumbles. The weakness is intense. What has kept me going for the last three years is conservation of energy and protecting the over-use of my neuromuscular junctions. I rarely depleted my acetylcholine. Now I initially have strength, but it uses up my precious stores and BAM!, I have virtually NO strength. It’s way too dramatic 😮 My understanding is that my lack of treatment has irreparably caused further damage to my body. I have never been so reactively weak. Seemingly strong to profoundly weak in seconds. If I am not careful, I think it would be easier to accidentally kill myself right now. Sigh…..

I predict that today is going to be mentally tough on me. This is my first day of no steroids and no one to talk to every few minutes. I have to come down from out of the clouds and work out my new reality. I need to be grateful for the new lease on life while being cautious. It’s very weird to feel powerful one minute and weaker than ever the next. I was hoping I could go to church. The choking and weakness brought that thought to a screeching halt. I know that the rollercoaster has just begun…..again.

I am worried that I am developing a sinus infection. I can blow crud out of my sinuses for a couple of minutes straight. It seems to be connected to the salivary stuff…..and why I am now choking so much. My ear, sinus, teeth, salivary glands, throat are doing some dicey things right now. Blech….

So much to learn in life!

 

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