Thank you Arty and NTL. I am seeing rare specialists as the severe E- asthma is not responding to treatment and is part of severe multiple sensitivity. I recently found out it is actually more serious. Mast Cell Activation Syndrome which is a body wide anaphylaxis, an over-reaction to everything including needed medicines. It’s a very severe immune problem and can be seen in the cells of a bone marrow test. Mast cells are everywhere so when they get triggered you get ill in correspondence to those organs. So, that and the toxic reactions of meds I do ‘tolerate’ leaves me too weak to hold a book, dress myself at times and even in heart failure. I hope to draw or use watercolour if I can muster the energy some day. The heavy prednisone is destroying my bones ( teeth, broken ribs/ soft bones, and crushing the spine), but I must use it to get any kind of breathing relief. It’s unbelievable and deadly without it. It is also causing the severe edema, and heart failure. Diuretics don’t work on me to treat that, or I have allergic responses to them. So I am really disabled now. But not quite ready to give up all my art supplies yet. It’s been life changing and humbling to be this chronically ill. Now I need a wheelchair. I still have my large blank canvases in my living room. I stare at them with a lot of plans and longing. I know you will understand that. Lol It’s the artist in me! Just not ready to cry uncle yet. And although close, I hope I don’t have to. It represents hope for me. That is a positive thing.
I hope you both are well-go out there and keep creating for me!
Musket, that is a beautiful piece.
I have a tiny but loving immediate family. They help me but it has been very difficult for them too. At times the struggle to breathe and heavy meds cause me to loose all motor function and speech. I can blink and breathe ( well… I can be having asthma attacks too so that is relatively speaking). Cannot make noise or move. At times I go into partial or full body seizure like shaking, or appear catatonic. It can affect gait, walking etc. Lasts minutes or hours. Once 12 hours. First time, by myself. Couldn’t get or call for help or reach for my asthma rescue meds. So I understand tremors a bit Claud.
It is incredibly aggravating to not have any control of the body. Being locked in is….horrible. Sometimes I am fully alert and other times not. My speech is very slurred at times too during the day.
