the autoimmune hippie.

Laughter is immeasurable. Be joyful though you have considered all the facts. . . Practice resurrection. – Wendell Berry

spoonie life.

  • blessedly, the right doctor for the job is a nurse. . .

    As I’ve been dealing with this terrible situation with my rheumatologist, I’ve been thinking a lot about the things we deal with in having chronic illness: the constant changes in our health status, the difficulties in finding appropriate care, the daily pain, the trauma related to our illnesses as well as things that have happened… Read more

  • honoring the memory of erin gilmer – and considering some of my most difficult days at the hands of the medical community as well. (we must do better for those in chronic pain.)

    As I wrote in my previous post, my rheumatologist had to take unexpected medical leave and cancelled all of his appointments suddenly – which he could not help – but he left WITHOUT providing another physician to cover for him. As my medications ran out from what was to have been my June 29th appointment,… Read more

  • chronic pain, being treated like garbage as a patient, and Hell’s own flare on the horizon. . .

    While I’m generally a pretty positive spoonie – and a cooperative patient as well – being treated like hot garbage by my rheumatologist’s office while he is emergently off without anyone covering him – FOR SIX WEEKS – leaving all of his patients without our medications, sending me into a CRPS pain crisis with the… Read more

  • it’s disability awareness (umm, pride?) month.

    Though I understand its point, I haven’t been able to warm to the idea of Disability Pride Month. The wording is just too . . . awkward. . . for me. I am, however, all aboard for Disability Awareness. And, goodness knows, there is much to consider. I was just sharing with my bestie a… Read more

  • it’s time to talk about delta – and masking once more.

    No one was happier than I was to start leaving my mask in my bag once the CDC said it was safe and I was considered fully vaccinated, saying, as always, that I follow the science. With my prednisone and the fever that I frequently experience with my autoimmune disease, I overheat wearing the mask… Read more

  • beethoven never heard the 9th. . .

    I realize it’s common knowledge that Beethoven had lost his hearing and still continued to compose his greatest works until the end of his life. However, as I’m taking a wonderful music history class this summer, I was doing a concert assignment through the night and early this morning and that awareness struck me in… Read more

  • sharing a short devotional from my book on another day of loss in our community.

    Today, following my previous post on mental health and suicide, I want to share a short devotional from my book. Since I posted, there has been another stunning loss in our community of a beloved local news anchor. He was a gifted young man with a family, married with three children, and his death is… Read more

  • we tell ourselves stories in order to live. . .

    This, one of my 62 “favorite” Joan Didion quotes, is inked on my left arm – and I’ve written before about how important her work is to me. Her influence has been great in my life and work – and she is part of my conference story this weekend as well. ❤ Before I get… Read more

  • tales of my post-op week – and looking forward to writer’s conference.

    Oh, the beauty of the King You make righteous those who seek You have written and redeemed my story Let my eyes see Your kingdom shine all around Let my heart overflow with passion for Your name Let my life be a song, revealing who You are For You are salt and light Oh, the… Read more

  • it’s spoonie surgery time (again)

    Well, y’all, it’s taken me several days to bring myself to write this = in part because I am chasing myself with Maymester – but mostly because I almost can’t believe I’m having to report it.  But here I am. As the spoonie life goes, some problems are recurrent, and, for me, in my immunocompromised… Read more