Life with multiple diseases

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.

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(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.