[Sculptor44]

Hi all. I should go to bed after LONG Day! Went to Pain Clinic. a lot of steroid shots for pain and problems. Injury on right chest muscles. Have had to push push to get thru this move and my daughter stepping away from helping. She is finally back at least a little. I am in Assisted Living living now. They won’t validate my Myasthenia Gravis. Had a brief nurse meeting today I asked for because I haven’t gotten services I need. Laundry and trash out are top of list. It was said I need a doctor face to face and an order and a reason for a shower aide and laundry. I told this nurse before I have a lousy PA as current GP. This PA will not validate my Myasthenia. My great Pain Clinic doc is a wonderful brilliant PA so don’t think I am down on PA folks. Will update you more. Must do bed. Sculptor 44

[Sculptor44]

Hi. Where I lived before alone I worried when I had days where I was so worse by end of day I couldn’t eat.. Just too weak to fix a snack and eat. That has happened today at the assisted living place. I am having such an awful time. I knew having Myasthenia would cause issues when I had to go to a facility in Iowa. My caseworker once suggested I may need to move out of state for an appropriate place. I met the head of homecare and Activities today when she came to yell at me. Her animosity has left me shaken. Sculptor 44

[Lara]

Hi Sculptor, it's been a while since I caught up with your posts here.
You've done a lot in the past few months.

I'm so sorry that the employee at the assisted living place has made you feel so bad. That should never ever happen.

I hope you tell your daughter about the incident. It's always good to tell someone else so it can be documented. Having someone yell at you when you're in assisted living is wrong for so many reasons. It's hard enough for you without that happening.

take care there.

[Sculptor44]

Thank you for your kindness. This morning I realized the bits of pain by left jaw recently has become a swollen infected salivary gland. When tried to eat it was very painful. While I am surprised by the literal mean nature towards me of this woman The aide I had once she let her come was nice to me. She showed me how to use the shower. I haven’t had a shower since I moved in September 22. And that is more hurtful to me than this woman who unfortunately is in a position of power. She is one of the people blocking my shower aide. Last week I was urged to move out. There seems to be no one that gets neuromuscular disease.. I knew it might be rough sound my health at a place like this but not this bad.. They wanted me to go to a nursing home implying I am too sick to be here. And they are mad about it. The nurse here was blamed for not checking me out better first. At least my daughter is helping me in small pieces again. Sculptor 44

[Sculptor44]

I finally had much needed GOOD trip to ER . I received what works 125 Solumedrol plus big bag IV fluids. Thank Heaven!! My daughter and I found a companion to take me to medical appointments and that was her first Job. She did great. I hadn’t gotten decent treatment for months going alone. There is an article in The Guardian saying shame on CDC for making Pain treatment Recommendations more compassionate. If anyone has the ability to write this News Outlet and suggest someone who HAS Real pain write a response to this lousy Opinion! I am furious about this! Sculptor 44