Rare Diseases
-
Pemphigus… What the Heck???
Everyone has heard of autoimmune diseases, right? About 8% of the U.S. population has an autoimmune disease, and the prevalence is only growing. We’ve all seen a million TV commercials for drugs to treat psoriasis or Crohn’s disease or rheumatoid… Continue reading
-
No Thank You – Unsolicited Health Advice
I know they mean well When your friends and acquaintances learn that you’re struggling with a long-term, serious medical mystery… buckle up! The unsolicited advice is coming in hot. Not only will the well-meaning attempt to diagnose you, they’ll endeavor… Continue reading
-
PTSD as Part of the Picture
I have PTSD. I process everything that happens in my life through a distorted lens of past trauma. It impacts my behavior, my emotions, and my ability to make sound decisions. It’s a big mental mess, but I’m working on… Continue reading
-
Chronic Illness and the Grieving Process
Being diagnosed with a life-threatening, chronic illness transforms you. It’s elicits an unfurling spiral of loss. You can’t help but feel a full spectrum of negative emotions as you watch your body and your life fall apart. For me, grief… Continue reading
-
The Steroid Life…
Sometimes when you have an autoimmune disease you really don’t have a choice when it comes to taking steroids. If your disease is mild enough that you do have a choice – lucky you! That’s not the case for everyone.… Continue reading
-
Why Me?
Everyone who has something awful and unexpected happen to them probably asks ‘Why me?’ I guess it really didn’t matter how fit or healthy I tried to be. It was mostly (maybe completely) out of my control. There are moments… Continue reading
-
Weird: How it all started
I never thought I’d be unique in such an awful way. I never expected I’d baffle so many doctors. I had read about other people’s medical mysteries, but becoming one was definitely not on my existential bingo card. I had… Continue reading
How Weird 