Something I havent said here is that I am scared of doctor involvement. Being scared is not a thing a I do well. I am so so sick today. I have had 3 doses of mestinon this morn and my chest is still shut down.

I was doing the total rest thing but my daughter scheduled a sit down with my Social worker for my handicap aid 2 weeks ago for noon yesterday. She doesnt get that what may seem like a brief appointment that I would do nothing at could turn out just the opposite. All the talking I had to do for questions that came up has set me back again.

I am admittedly very scared. To be this sick with the neuro I have and being so bad in my chest that I really shouldnt speak and really can't for more than a few moments makes it worse. Last nite I cried as it feels like yet another part of my body has been stolen from me by this disease...my voice. And how do I advocate for myself if I cant talk.

I started a list the 2 days ago of what I was afraid of with going into the hospital. What I would need to feel less concerned if this happens. Maybe I can share more about this later. Right now I feel like I am on the edge of a cliff.

Annie59

I can completely relate to what you are feeling. My gram was always in the hospital, so growing up I was there often as well (visiting) and hated it!
I waited a bit too late though and almost lost my life to this disease. Hospitals are scary places, but let me tell you they took GREAT care of me. It took 8 days in ICU to start to feel human again, but once the meds started working, it felt like a miracle had occurred!
I know how you feel, honey, but if you are having trouble breathing it really is time to go in and be treated. You deserve to feel well and not let this darn disease take something new from you.
You may have IV IG or a plasma exhange. The first time I had the IVIG I could not stop smiling............my face had been frozen for a couple of months b/4 I was treated. I hate needles - always will - it has all been worth it.
Please take care of yourself and have 911 programmed on your phone. No one deserves to feel this bad.
Big hugs!
Erin

Thank you Erin, I finally had some measure of improvement. At least now I also know more about what was going on. I dont know what tomorrow or tonight will bring but I am more prepared. I know I have been closer so I have made some plans. I currently have Lifeline which is the locket one gets and wears that can be pressed to get immediate help. My daughter esp pushed for this worried about my breathing and falling.

My top 3 concerns with going into the hosp is easliy getting oxygen, getting IV fluids while in as that is the only way to manage my sicca away from my humidifers and all that counter the harsh dry backlash of a big building. And the last having my Dr Wilson well involved. He is at the university and I am nearly an hour away. The shortest distance is the 2 hosp in my town. The place literally walked me around till I couldnt to prove if I could walk in a stable way but then left me in a room and when my breathing tanked after that activity they never responded to my calls on the button. And that is the better one. Dr Wilson has encouraged me to come there.

Annie59