[Annie59]

Hope some of you can give me feedback of this issue. It seems in trying to get them to understand my needs, my health and all things are not improving. As of today it is worse. I have spent 5 days in total rest mode in hopes of improving breathing, voice and myositis. My aide came today , her main day of 3 hours ( she has started to come on Fridays to help me tan). Shortly in there was a knock at the door and the agency head came in asking if my aid was here.

There was weirdness and rudeness when she asked me in front of Kara what I thought of her. I flat said I wasnt gonna discuss that in front of her. But when she went to put laundry in that was the first thing out of her mouth again. Still tho I only said she was very kind and thoguthful which is a big deal to me.

There was something in this whole that was feeling like a set up so I was cautious. She quickly tried to lable me a 'needing things just so" person. I came back motioning to the messy room saying of course not with me this sick. I said there are things that are needed a certainway because of my heath. I bought up the dust issue that occurrred recently and asked Kara to explain saving my breathing. That issue being that I am hugely sensitive to dust and she had aggressingly dusted a lamp over my pillow in my bedroom. As soon as I got to bed I started reacting to it in my nose and later my eyes. My Sjogrens makes dust feel like someone has put sand in my eyes. This is hard for others to understnad the gravity of.

My main job today was to rest so I can get to acupuncture tomorrow, not get any worse and recover from the longer than usual shower yesterday that made my breathing worse. I think based on a call to my daughter last week she called my DHS worker who is NOT on my side and she called them. This was them trying to look better. She said Kara can give me a shower. I said no this is not what every one has told me. She told me Kara should do more and it wouldnt take anything from me in the form of talking. Told her to do clean my humidifiers. Now these are $140 humidifiers and would require explanantion and care so as not to ruin. I told her Kara had to take back a crannbery-lemonaide organic juice as I cant do citrus bacause of my Sjogrens. It makes my thoat and mouth burn! To that she replied I have to experiment. Like I have spend years doing that. I commented that sure if I had the money for that.

I guess one of the basic things here is she had obviously has no clue that her coming unnanounced (stressful) and making me talk would be too much for my breathing on a day when I already have to talk to Kara to get the majority of things done for the week. The even more strange thing is that the person who came last week, the nurse I she wanted to come on Tuesday and I said no for this very reason. What happened that information? Even the workers have told me their communication is not so great. I hate to change agnecies but this is really poor level of understnading of my MG, and Sjogrens. She actually told Kara my worker to document my needs and put it in her folder. I noted when she said this to Kara, trying to be helpful not contrary, that I went over all my special consideration when I did my first intake with my first nurse. I said I made a list and gave it to her.

Good grief.

Annie59