I know that someone always has something going on. But it seems like more than ever a lot of us are not feeling too great.
So I say we all go to some IVIG/Plasma exchange spa. LOL. Maybe somewhere with mild temperatures. No extremes. Just perfect weather where we all meet, swap stories and just plain get better. Who's with me? OK so not possible but it was a nice trip.
I just want to not be in crisis limbo, as I call it, anymore. I am really not feeling good. My grandma was admitted to the hospital last Sunday for a heart attack. So I went with my mom to see her. The temps were over 100 there and car ride was 4 hours there. For some reason car rides really tire me out. On the way back home the next day I could not swallow my own saliva without aspirating and had trouble breathing. I really should have just gone to a hospital. But past experiences have proved utterly pointless. I called my neuro, who was mad at me, and he said next time go to hosp and have them call their office day or night. That way I will never be left untreated or asked what it is usually done for me in this situation. Yeah that's the usual reaction. "Well ma'am the on call neuro has no idea what to do, what is usually done?" That is usually what I get or left unmonitored for hours at a time in the room and then told it seems you are doing better now.
Anyway, so I am still feeling really weak. Ptosis, swallowing difficulties, breathing difficulties, aspirating off and on, can hardly walk. I fatigue so easy. So I am staying on the couch unless absolutely necessary to get up. Luckily my boys are somewhat used to fending for themselves. I am taking more mestinon than I have ever taken before. That's what is barely keeping me out of the ER I think. It's just really hard to live like this. If I get up and do anything it just starts to get bad. But I have to go have lab tests tomorrow so I guess if it starts to happen again I will just go in and hopefully get out of this limbo.
Just a side note has anyone heard how Nicknerd's surgery went? I hope everything is alright with her. And I hope for all our sakes the hot weather settles down. Most of all everyone needs that boost of strength we are all missing right now. Take care all. And just picture that spa whenever you start to really feel drained and maybe we can all take heart.
Hugs to Everyone,
Carrie