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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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 utterly normal – well, at least my version of ‘person-with-pemphigus-normal.’ Since my first infusion, I’ve
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My First Rituximab Infusion
It’s Thanksgiving Eve, and we just got home from my first infusion treatment at UNC-CH Medical Center! We got to Chapel Hill the afternoon before my appointment, and spent the day relaxing and doing touristy things. We got ice cream at Maple View Farm Creamery. We took the pugs and hiked the North Carolina Botanical
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Countdown to Infusion Day
If everything goes as planned, at this time next week – I will be DONE with my first round of rituximab infusions! I’m looking forward to starting treatment and hopefully feeling better. But, right now – I’m also having lots of complex feelings about both my disease and the upcoming treatment. It feels like such
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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 am always ready to hit the trail for a long hike or overnight backpacking trip.
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My Pemphigus Diet
When you have an autoimmune disease, special diets are going to be a topic that comes up over and over again. People with autoimmune diseases often have special dietary needs and limitations. With my disease (pemphigus), certain dietary restrictions have been recommended to prevent pain/irritation and further flaring of oral ulcer symptoms. However, there is
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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 nature and food-as-medicine instead of ‘Big Pharma’. And honestly, I was desperate, and willing to
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Autoimmune biopsies chronic illness diet exercise fitness food grief health healthcare infusion infusions insomnia life lesson Medical Mystery mental health misdiagnosis mouth sores mucosal blistering Nutrition patience pemphigus prednisone PTSD rare disease rituximab self advocacy steroids trauma treatment
How Weird 