It's nice to meet you too Babyfirefly. I'm so very sorry to hear of the awful things that you've been through. I developed pneumonia, was induced into a coma, placed on a ventilator for 3 weeks, and have
no memory from mid January 2011 to March 31. During my coma nerves were pinched in my left arm and I still have no sensation from my elbow to little finger. I never developed CRPS, but I have enough pain to understand a bit what your going through.
I've argued with my physicians a few times, but I have always been straightforward and I think it's very important that you do the same. Try your best not to be stoic. Also get specialists for each of your conditions. I have a Pain Managememt physician, a rheumatologist for my autoimmune disorders, and 6 other specialists.
I get two infusions each month and I want to stop my Benlysta for Lupus very badly. It's so hard on me and I'm not even going to school. I graduated with a BS in medical technology when I was 36 years old.
Finally about the heat. I sweat profusely! Buy soft reusable freezer packs (CVS) wrap one in a towel and place it under your head. Place a wrapped one under your pillow if you like. Keep a large fan in your bedroom. Take cool baths/ showers the last thing before you go to bed. For me any activity after bathes make me sweat. Anytime you are outside wear a large brim hat to help keep you cool. Any umbrella is also good to keep you cool. Your classmates may make fun of you, but they don't have Lupus and MS so %#*€ 'em.
That's all I can think of now Babyfirefly. Please let us know how you're doing and take care of those kidneys. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG and Benlysta infusions monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Bursitis right hip; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry