What are your chronic illnesses?

I am often asked what chronic illnesses I suffer from. Rambling off a list of rare diseases is usually not helpful so I created a list for you.

I included the date of diagnosis, but symptoms of the disease sometimes started years before.

  • Polymyositis 1986
  • Myasthenia Gravis 2001
  • Lupus 2005 which was later changed to Undifferentiated Connective Tissue Disease 2013
  • Recurrent Acute Pancreatitis 2005 (Docs now believe it’s a form of autoimmune pancreatitis). This has caused a dozen hospitalizations, at a minimum.
  • GERD 2005
  • Hiatal hernia 2005
  • Irritable Bowel Syndrome 2005
  • Osteoporosis 2005 (from long term effects of corticosteroid use)
  • Adrenal Insufficiency 2013 (from long term corticosteroid use)
  • Gastroparesis 2013
  • Dysautonomia/P.O.T.S. 2014. My form of POTS fluctuates from very low blood pressure for extended times & tachycardia to hyperadrenergic POTS with high blood pressure & tachycardia.
  • Fibromyalgia 2015
  • Ehlers Danlos Syndrome 2017
  • Mast Cell Activation Disease 2017
  • Sepsis from Gall bladder infection 2017. This nearly killed me. Had to wear a drain from my gall bladder for several months until strong enough to have gall bladder removed.
  • Sepsis (#2) from port infection 2017. Had port removed.
  • Sepsis (#3) cause unknown 2018.
  • Multiple hospitalizations from feeding tube complications 2019.
  • Sepsis (#4) cause unknown 2019
  • Osteoarthritis 2019
  • Non-essential tremors
  • Chronic Migraines
  • Chronic Anemia
  • Chronic Pain (neuropathic, generalized, muscular, joint, Epi-gastric, coat hanger pain, cramping, – take your pick!)
  • Depression and anxiety
  • Other things to consider: heat intolerant, exercise intolerant, many food intolerances and intermittent brain fog!
  • Currently under testing for avascular necrosis of both hip joints and both shoulder joints (from long term corticosteroid use)

So basically the only thing I can tolerate is…air!

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