Medical Mystery
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You Just Don’t Understand
Humans desire love and understanding. We want the people close to us to validate our feelings. We want to be seen – fully and authentically. When you’re diagnosed with a rare, serious, incurable disease – you need that understanding more… Continue reading
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2024 – High Notes From a Terrible Year
I’m not going to sugarcoat anything. This year was undeniably and undoubtedly the worst year of my life so far. And yes, I say so far because I know things can always get worse. If I’ve learned anything, it’s that… Continue reading
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Darkness Falls on My Mental Well-Being
I’m almost three months into my pemphigus diagnosis. I’ve completed my initial treatment plan. And now, I’m just sitting and waiting the six to eight weeks to see how (if!) it works for me. The treatments destroyed a significant part… Continue reading
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Fitness During Illness
I am convinced I was born to move. I have loved being active since I was a kid. I started lifting weights, doing aerobics, and running as a teen. In young adulthood, I developed a passion for the outdoors. I… Continue reading
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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… Continue reading
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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… Continue reading
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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… Continue reading
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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… Continue reading
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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… Continue reading
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What is it Like to Get Mouth Biopsies?
Imagine you have a mysterious mucosal blistering disorder, and your entire mouth is lined with bleeding, open, devastatingly painful sores. Now imagine that a medical provider is going to use a needle to inject lidocaine and cut pieces of flesh… Continue reading
How Weird 