By Alexandrina, Dermatomyositis, United States, February 28, 2019
Being 19 and having in total 9 illness is exhausting, I'm never truly in the driver's seat. I have a rare condition that is 1 in 3 million, there is no cure and the treatment is long, I take chemo weekly, IVIG monthly, on top of a bunch of medications. My up to date prognosis is: JDM, PTSD, FIBROMYALGIA, RUMITOID ARTHRITIS, HASHIMOTO'S, CHRONIC INSOMNIA, IBS, A CYST ON MY LEFT OVARY AND ANXIETY.
My body is non-stop aching, I sleep roughly and patchy, chronic fatigue, pain, joint inflammation, swelling, headaches that last weeks and leading to nose bleeding, weight gain. I bleed calcium from my knuckles, my bones pop out of place and can become unstable.