How Weird

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  • Four Months After Rituximab

    It’s been just about four months since my second rutuximab infusion. I’ve been fully off all steroids for a little over a week. My pemphigus symptoms are staying mostly in check (knock on wood). I still get tiny, short-lasting blood… Continue reading

    Four Months After Rituximab

  • Onward and Upward

    So, it’s been about a month since my last update. Things are going well enough that I can finally say I’m cautiously optimistic about my pemphigus progress. I’m down to 2mg of prednisone a day and have stopped using clobetasol… Continue reading

    Onward and Upward

  • Perhaps Progress?

    It’s been a month since I’ve written. For much of that time, I was deep in the weeds, having setback after setback. It was a dark time. More Ravages of Prednisone In my last post, I wrote about my lab… Continue reading

    Perhaps Progress?

  • 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

    Reflecting on Setbacks and Hurdles

  • 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

    You Just Don’t Understand

  • Hopes and Intentions for the New Year

    I used to be great at making plans and following through with them. I was the kind of person who set New Year’s resolutions and actually kept them. I lost 100 pounds and kept it off. I hiked 1,000 miles… Continue reading

    Hopes and Intentions for the New Year

  • 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

    2024 – High Notes From a Terrible Year

  • 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

    Dealing with Insomnia

  • 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

    Darkness Falls on My Mental Well-Being

  • 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

    Rituximab Round Two Wrap-Up