Thank you for your kind response. It really has been so hard. It began in 2013. That’s when I began chasing an answer. But nobody seemed to have one, so I finally gave up and decided I’d just have to try to live with it. At that time, it was a little bit easier as my body temp rarely got past mid-101s. But for some reason, over the last 3-4 years, it’s all escalated really quickly. For example: it got to 104 Christmas Eve as I mopped my floors. I had turned the heat completely off and it was 6 degrees outside. I left my back door standing open and had a floor fan on me. Saturday, I carried a laundry basket of clothes to my sofa and sat folding them in the coffee table in front of me. A/C set on 64. Ceiling fan on and a floor fan 3’ away blowing directly on me. Temp got to 102.2 and my b/p hit 199/147. I don’t know how to be any more protective of myself than that. That is like absolute least physical activity I could be doing. I can no longer keep my house clean. My daughter can’t have anyone over because I can’t clean my filthy house anymore. It literally feels like it will kill me to try. Just after the laundry episode, I felt sick all day Sunday. I don’t feel great today. It’s hard to keep going when you can no longer even see to your own needs. The only thing that keeps me pushing forward is this amazing kid I have who deserves so much more than I have to give right now.

I am an RN. So I’ve been trying to direct my care myself. Before I just took the initiative to schedule myself with Cleveland, my GP had not even sent me to a specialist. So I changed primary care doctors and that one never would refer me either. I’m seeing if I’m going to get help, I’m going to have to make it all happen myself. Which makes me want to get better and do this for others who don’t have any health care background. We need more patient advocates!