[Annie59]

I am seeing this local indpendent neuro I spoke of here recently this coming Monday as of today. I called and said I was worse and shouldnt wait till 2-8. His mom in her thick accent asked if I could come right in as she just had a cancelation. Given I need a ride from my duaghter she was my next call. She called back after we had an exptremely difficult talk making this appointment.

Even tho I saw her last nite and she seemed in a good place today she went into the angry, detached place. She wants her sister to share the load and thats not happening for a number of reasons part of which she doesnt know enough to help me with an appointment as well. Also the daughter that takes me has alot of big stressors besides me. I think it is easier to take this out on me than her husband. I asked that this not be the time to rehash all this with me so sick. But I guess I had to be this sick to say some of the harsh truth like her trying to be the litehearted business person instead of deeply angry, scared daughter in doctor appointments was making it easier for them to assume Im not as as sick as I am. I pointed out places this happened.

I finally said that if this is not cleared up before we go I am not going as it would blow a good opportunity to get an independent opinion. While I detest scaring my daughters the ENT came up and I asked what her sister told her about the appointment. I knew she only heard the rosy part of him saying he could see not growths in my throat. She didnt tell her he asked if I had been evaluated for ALS. She said her sister did not tell her this. And I we did decide after the appointment because I was feeling so much worse that she would tell this daughter what was had happened. Shortly after this she said she had to go and process all this and call me back. She said she would take care of calling back on appointments.

I was up so late last nite cause of my breathing being worse from the talking and activity of yesterday. I didnt want to talk today or longer. I cried thru more than half of the phone call with my daughter. Maybe if I hit the ice packs hard the rest of the day and go to bed after the next big dose of mestinon I will not crash again.

Annie59

[Tbarney]

I hope things start looking up for you and you also start feeling better.

[Annie59]

The high pain level from the myositis in my face-my whole head and the worse breathing has me really worn and stressed. I need to go back into hybernation like I did last week. Sorry for the long regurg of events in my recent posts. My breathing and the pain are my most hard to handle things and to have them together this bad is intolerable. At least my breathing is better at this point than it was lastnite at this time. So so grateful for that.

Annie59

Originally Posted by Tbarney

I hope things start looking up for you and you also start feeling better.