Sharing my story, self advocating
Recently I had to speak up about how my diabetes is treated, I told the nurse I had dr. permission to administer my insulin and I knew how to take care of myself and then she said AND YET YOU ARE HERE IN A NURSING HOME....and I suggested since she is new does not know me can she go get the supervisor who could advise her, she insisted we do it her way which was with holding insulin and that was wrong. And in the end The next day, my endocrinologist called them with specific instuctions which I had been self advocating all along. No one said that nurse got it wrong....
I cried because I have reasons for being here, and that sounds benign but it was insulting.
And all my doctors, therapists say self advocate, educate about stroke,about pain syndrome, about what I need,who I am.
So today that lovely woman brought me communion. I cherish her. I talked about my appt yesterday with pain clinic. I shared about my possible upcoming electrode surgery. She helped by saying she knew knew 3 that worked well,1 that did not. But I shared my story about stroke and getting pain, and how I came to be here, my disability denied then established, my inability to live alone. Well she asked me what to pray for and I told it all. I noticed she looked at her watch. I apologized for burdening her with all that including talking about my lost career being early retirement, but I missed my work dearly. She said if we help 1 person we are successful. I wonder if anyone listens.
A new worker here replied this is a nursing job,pays the bills. I doubt either one of those statements about being a CNA is entirely true. And I am more horrified at her statement to a patient. I worked in schools, I would never told that well it was a job.......well perhaps for that unfortunate soul, maybe this is first job she gets or keeps...but we here in a nursing home are not afforded any dignity.
I feel sorry for the employees here because I had successful job and life and I knew how to behave professionally, even when I had challenges, but I am regarded now as a vegetable, but even though, I have broken body and mind, my soul my soul is here requiring nuturing and dignity.
So that visitor brought me a reading along with communion. It said to be humble...lots of stuff about humility and blessings. I feel bad for my pride, yet rebellious because hey I earned that...but in the end are we not all damaged, are we not all the same in that we got where we got with help, and that we pray for those who do not understand. I realize I am one who does not understand maybe.
I just feel violated, treated disrespectfully, but I must trust them because of the surgery I need. All this self advocating is exhausting. Thinking is exhausting too.
I have unseen disabilities that is difficult to deal with. I have pain which is crazy to talk about.
But can my future change with an electrode?