Month: January 2020

Special Guest: Interview with Author and PANS Survivor Madeline Dyer

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Today, I’m so excited to introduce all of you to author Madeline Dyer, who has just published a gripping collection of poems, Captive, on her journey through Autoimmune Basal Ganglia Encephalitis, aka PANS.

“I just want to get better

and see the stars

and believe in hope again.”

As someone who has lived with this condition myself for over half my life, I can say that I felt this opening poem, and the pages that follow, on a deep level.  PANS has a way of making the sufferer feel completely hopeless, and this sentiment is one that just about all of us have felt while in the depths of the condition. Admittedly, I’m not a poet and don’t read much poetry, but I was able to get into this book.

Continue reading “Special Guest: Interview with Author and PANS Survivor Madeline Dyer” →

PHP Day 7: “It’s Rehab for Your GI System.”

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After finishing an entire week in a Partial Hospitalization Program for eating disorders, I am both more optimistic and more pessimistic about moving forward. As expected, I had a big ME/CFS crash on Saturday, the day after the week of PHP finishes. It’s pushing my body past its limit. I’m willing to put up with the worsened symptoms as long as I’m not causing long-term harm, but it’s a fine line. Continue reading “PHP Day 7: “It’s Rehab for Your GI System.”” →

PHP Day 3: “You Didn’t Fail.”

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Today makes my third day of Partial Hospitalization, and I already know I need to stay more than a week—and I’m mostly okay with that, but not sure whether my body will allow it.

Looking back at the last few months, I’m starting to see that, as usual, my psychiatrist has been right in saying I need to be here. As it turns out, it doesn’t much matter why I’ve lost this much weight below my healthy place because I’ve ended up with the same physiological consequences and even some of the distorted thinking of anyone with an eating disorder… My hair was starting to fall out. Continue reading “PHP Day 3: “You Didn’t Fail.”” →

PHP Day 1: “I Won’t Put It On.”

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Today was my first day of Partial Hospitalization, and it went both better and worse than I expected.

I don’t normally post two days in a row, but I’m in a writing mood and thought a few people might be interested in reading about my time in a partial hospitalization program for eating disorders over the next few days. I’m not sure if I’ll post every day or not, but today I need to talk about what happened. Continue reading “PHP Day 1: “I Won’t Put It On.”” →

The Perils of Partial Hospitalization—And Why I’ve Agreed to Go

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“You need to go back,” my doctor warned me one day this summer.

I wiped the tears off my face and sighed. “I haven’t been able to walk more than a hundred feet in two months. You think I have energy for three hours of therapy three times a week?”

“You need the support… You’re getting worse and worse.”

I paused, knowing he wasn’t wrong—my psychiatrist is never wrong, and it’s maddening. “I know. But if going to therapy takes up all my energy, I’ll be too sick to participate. Isn’t there another way?”

Continue reading “The Perils of Partial Hospitalization—And Why I’ve Agreed to Go” →