Medical Mystery
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Reflecting on Setbacks and Hurdles
One of the most unexpectedly and unintentionally painful things anyone has said to me about my illness came from one of my best friends. About a year into being sick – when everything was still a medical mystery – she… Continue reading
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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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Dealing with Insomnia
I’ve never been a great sleeper – mostly thanks to my active and anxious brain. As I got older and started going through perimenopause and then menopause, it only got worse. When my autoimmune disease developed, I had to add… 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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Rituximab Round Two Wrap-Up
This week, we traveled back to UNC-CH Medical Center so I could have my second rituximab infusion on Tuesday. The initial treatment protocol for pemphigus is just two rounds of infusions, given two weeks apart. For now, I’m technically done… Continue reading
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Lessons in Patience
I was not born a patient person. I want immediate responses and action. I hate waiting for things to unfold. I feel uneasy when I can’t visualize the desired end-result early in a process. I’m not a procrastinator – I… Continue reading
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Rituximab – Reflecting One Week Later
How can the annihilation of all the B-cells in my immune system feel like… nothing? I expected to feel something amiss or uncanny in my body after getting my first infusion treatment. But, I didn’t! I have felt completely and… Continue reading
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Adventures on the Autoimmune Protocol Diet
Before my formal diagnosis of pemphigus, it felt like everyone was telling me that if I fixed my gut health with a special diet, all my symptoms would magically vanish. Countless people suggested I’d find my answer by turning to… 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
How Weird 