The story of Edith
Hi my fellow Zebras/Unicorns! A few years ago I was diagnosed with Guillian Barré Syndrome, and within a few weeks of being in the hospital and receiving IVIG, I also developed Parsonage Turner Syndrome aka Brachial Neuritis. Two extremely rare diseases. Since then, I’ve also Been diagnosed with many more rare diseases: Chronic Inflammatory Demylenating Polyneuropathy, Trigeminal Facial Neuralgia aka Suicide Disease, Lupus, mixed connective tissue disease, intracranial hypertension aka pseudo tumor cerebri, ankolysing spondylitis, Hashimotos Thyroid Disease, and Fibromyalgia.
I have severe autoimmune diseases, and nerve issues. I’ve also had MRSA and VRSA after having my bilateral mastectomy for ductual carcinoma in situ (DCIS). I truly believe there’s ONE underlying issue, and I don’t have all of these, but it’s possible I’m wrong! I feel if we can figure out that “one thing”, I’ll get better and go into remission. While My ex-husband and I were married, he developed neurocystercicosis (brain parasites), which is EXTREMELY RARE, and my mom tragically passed away from Legionnaires Disease, also extremely rare with around 20,000 cases per year.
I’m not sure why my family and myself have had to face such complicated, and at times, devastating illnesses, but I truly have never asked “why me?”. I feel so incredibly blessed that I live in America with some of the worlds best medical care, I have great health insurance, and have the most amazing support system, and most importantly: my children are healthy! There’s so many others that have things much, more worse. So, remember when you’re going through an awful day.. of you hold onto hope and faith, it WILL get better. Only darkness goes away when the light comes in. Sunshine takes away the grey skies.. so just hang on, take it minute by minute, remind yourself how STRONG you are, and never give in!!