How Weird!
Life with a rare disease is bizarre. I went from totally healthy and vibrant to devastatingly ill in the flip of a switch. It just happened one day – without any clear cause or reason. I’m trying to process what happened to me and trying my best to find value in my one precious, painful, messy life.
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Advocating for Yourself
When you have a medical mystery or even an established-but-complicated health issue, you are probably going to have to fight like hell to get the healthcare you need and deserve. Some doctors don’t have the expertise to help. Some doctors don’t have the time to dig for answers. And sadly, some doctors won’t care or
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The Irony of my Diagnosis
The ultimate irony of my diagnosis is that I had it right all along. I self-diagnosed correctly at the very beginning, but it still took a year and a half to get a formal diagnosis from a medical professional. My disease is only seen in a small handful of people across the nation – roughly
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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 arthritis. You probably know someone who has Type 1 diabetes or celiac disease. But have
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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 to devise a treatment plan, even if they have absolutely no medical or scientific background.
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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 it. I didn’t know I had PTSD until a psychologist put a label on it.
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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 has been the most intense and ongoing of my negative emotions. It comes in daily,
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How Weird 