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Rebecca .. Patient Expert

Helena, Montana
Three months after my first child was born, I was diagnosed with sarcoidosis, an autoimmune disease. Although sarcoidosis spontaneously remits in many cases, I developed a chronic form of the disease in multiple organs-- my brain, heart, lungs, liver, cranial nerves, lymph nodes, and bones.... Full Bio
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Tired Beyond Words by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine I am so tired. I’ve tried sitting down a few times to write a new post, or at least to respond to the insightful comments I received after my last entry. (Thank you for ... Read on »
The Hunger Games by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine I’ve lost 76 pounds. Only 24 more pounds to go, and I’ll be back to my weight when I was first diagnosed with sarcoidosis and started on high doses of prednisone to trea ... Read on »
Wasps by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine Yesterday I felt as though I had wasps in my brain. I had at least dozen tasks on my mental to-do list, buzzing around and crashing into each other, each one a goal for ... Read on »
Chemo and Sarcoidosis Brain—Or Is It Brane? by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine When I was writing my last blog entry I got stuck on the verb “does.” As I went to type it, my mind seemed to empty itself of my past fifteen years as a professional writ ... Read on »
Miraculous by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine It feels like a miracle has happened to me. When I last wrote, I was stuck between good and bad news. The sarcoidosis guru I see in Ohio recommended a promising new t ... Read on »
Insurance Blues by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine I have some good news. And I have some bad news. Let’s start with the positive. A couple of weeks ago the sarcoidosis guru I travel to see in Ohio told me somethin ... Read on »
Dem Bones by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine “You really have bad luck.” This—or some version of it—is something I’ve heard quite a lot of since I fell down a flight of stairs and wound up with a broken right ankle t ... Read on »
Fourteen Steps Down by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine Last Wednesday night I fell down a steep flight of stairs and broke my right ankle. This leaves me in a pickle, since my left foot is already broken and I’m not suppos ... Read on »
Third Wheel by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine It’s hard to be practically useless. My left foot has been stuck in a cast for the last two weeks, and I’ve got at least four more weeks to go in it. I could deal with g ... Read on »
It’s My Life by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine I think I’ve finished the first draft of the first chapter of my book. Actually, it’s my third draft of that first draft, each covering the same time period. But it’s th ... Read on »
Hair Schmair by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine When my hair started to fall out in clumps after my latest round of chemotherapy, I desperately wanted not to care. There’s a big sign at my doctor’s office that says, “ ... Read on »
A Different Cast by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine I’ve been thinking a lot about gratitude lately. After my recent months of flare ups, new chemo regimen, and hospitalizations, I didn’t like the lens I was using to view ... Read on »
Doctors—The Bad, The Ugly, and (At Last!) The Good by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine This is the second installment in a series of essays called “The Other Side,” which explores the many reasons I have to be grateful. I once saw a doctor who, while inc ... Read on »
The Other Side by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine My last post was about the challenges my health has presented over the past few months. That’s one side of my life. My next few entries will explore the other side. ... Read on »
I Am Not Dead by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine I am not dead. It’s just felt that way for many of the days since you last heard from me, way back in October. I apologize for doing such a lousy job of writing e ... Read on »
Day 25 by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine Hi folks– This is Rebecca’s husband Jay guest posting because after the five days for which we got to enjoy having Rebecca home, she had to get re-admitted to the hosp ... Read on »
Suddenly It’s Autumn by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine Suddenly it is autumn. The seasonal changes here in the North always feel precipitous. But the clicking over of the seasons to vibrant leaves and cold nights happened es ... Read on »
Creeping Back From the Abyss by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine I haven’t been able to write for the past few weeks—or do much of anything really. I landed in the hospital for 12 long days last month, and I’ve been slowly picking my w ... Read on »
Not Another Doctor. Anything But That. by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine My left leg is numb. It’s like someone flooded everything below my knee with Novocain. I’m stumbling on it, and have taken a couple of nasty falls when I can’t maneuver ... Read on »
Holding Hands by Rebecca .. Patient Expert Posted in: Blog Posts in General Medicine “Spring is like a perhaps hand…” By e.e. cummings Last week, Jay held my hand for a while. We didn’t talk much. We just held hands. After being together for seven ... Read on »