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Book Review: The Invisible Kingdom by Meghan O’Rourke
Title: The Invisible Kingdom: Reimagining Chronic Illness Author: Meghan O’Rourke Publication Date: March 1, 2022 Great for: A sense of community/solidarity The Invisible Kingdom will not teach you how to heal your chronic illness, and it’s not supposed to. Sometimes people come to chronic illness books like this hoping for just that (myself, admittedly, too, okay?). So, I just want to say upfront that this is not a treatment book. What it is is one woman’s journey on the years-long, confusing, frustrating, self-blaming, try-anything-for-relief path to diagnosis with a chronic illness. To ‘Rourke, we, all of us with chronic illnesses… Continue reading
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Book Review: Small Rain by Garth Greenwell
Title: Small Rain Author: Garth Greenwell Publication Date: September 3, 2024 Great for: a fictionalized capturing of the ways illness can change your future, and the precarity and uncertainty of life with a serious health condition This is a little bit different than the books I’ve reviewed on this blog so far. But it’s my blog, and I review what I want! So, ha! While this isn’t a book about Crohn’s disease or IBD, it is about illness, pain, and reckoning with the way health conditions create an uncertain future in people living with them. Which…are all things I’ve felt… Continue reading
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Book Review: This is Body Grief by Jayne Mattingly
Title: This is Body Grief Author: Jayne Mattingly Publication Date: March 18, 2025 Great for: Psychological support, newly diagnosed, feeling seen This is Body Grief is a non-fiction book about Body Grief, which is a term that puts a name to the grief involved in, well, having a body that can get sick, get hurt, or fail us. Body Grief happens when our bodies change, age, or acquire illnesses over the course of our lives. Body Grief, like what we’d consider normal grief, is a state of loss and of mourning. We mourn what we thought our bodies should do… Continue reading
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My Appointment with Mayo Clinic Gastroenterology in Scottsdale, Arizona
After the last few weeks have been less than ideal for me, I felt like I needed a change. I felt let down by my doctor’s office and their lack of taking my reports of pain and struggle seriously. I felt helpless, a little, and hopeless. I read a book recently that discussed Body Grief, which I’ll write a post about because I think all of you would benefit from that concept too, but I was, in retrospect, in the middle of Body Grief about my condition and my inability to control it. In a moment of desperation, I filled… Continue reading
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Stuck Between A Rock and a Hospital Place
Well, things have gone downhill since my last post. After starting Prednisone two weeks ago, nothing got better. Nothing. Unlike my last flare-up, I didn’t respond at all to the steroids at all. I tried reaching out to my doctor’s office a week ago to see what else we could do, and, because my timing is the worst timing in the world, my doctor was out of the office for the week. And the covering doctor said, in the most dismissive way possible, to just keep doing what I’m doing until my doctor came back. The problem was that this… Continue reading
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Flaring Up
Until late September, I was feeling great. Better than I had been in years. The Inflectra/Remicade infusions were doing what they were supposed to do, and after some gentle advocating for myself, even dealing with the infusion center wasn’t so stressful anymore. I was working out, sometimes twice a day. I was able to get up at the same time every day, no heavy listless fatigue at the center of everything pulling me down, down down. I was, by all accounts, in remission. Then September happened. At the end of September, I began to feel so very tired again. Tired… Continue reading
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On Advocating For Yourself (Even if You’re a People Pleaser)
What you probably don’t know about me, because, well, you don’t know me, is I’m a chronic people pleaser. It comes out often in social settings, but, surprisingly (or maybe unsurprisingly) it comes out in medical settings too. The first doctor I saw who diagnosed me with Crohn’s laughed at me when I asked him a question. I never asked him a question again. I often walk in with a list of questions, but feeling the rush of the doctor who is already ten or twenty or thirty minutes behind, I chicken out of asking. I am too embarrassed to… Continue reading
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My Introduction to Inflectra
Well, long time no talk. There’s a lot to catch up on. So, let’s jump in! After my last Humira dose on Christmas day, the welting persisted. I reached out to my doctor’s office to let my gastro know I still had the issue even with the dermatologist’s prescription and she immediately put in a referral to insurance for Remicade. While I was daunted by the idea of switching meds again, I was reminded once again how lucky (and grateful) I am to have a responsive doctor who replies to every message, silly or not, often within minutes. No forced… Continue reading
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Book Review: Crohn’s and Colitis for Dummies by Tauseef Ali
Title: Crohn’s and Colitis for Dummies, Second Edition Author: Tauseef Ali Publication Date: September 19, 2022 Great for: Newly-diagnosed, friends/family, reference Here’s something you don’t know about me yet: I love to read! And to review books! And, now, apparently, I love to learn more about my diagnosis! So, combine all of those and out comes the idea for a new little book review series. I’ll be reading and reviewing books about Crohn’s disease and IBD in general. While the nonfiction books are easy to find on the topic, I’d also like to seek out some fiction featuring characters with… Continue reading
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Trouble in Humiradise
Okay, I’m back with a three-month update since starting Humira. I’ve got good news and bad news. First, the good news! Humira is working! My inflammation markers are all down into the normal range except calprotectin which is much, much lower than it was before. So, yay! I’m feeling better, eating more, and gaining weight. All great things. However, the bad news. I’ve been getting red, raised welts after my injections since I started doing them three months ago. At first, the welts were small and flattened out in a day or two. I tried taking antihistamines, cortisone cream, ice,… Continue reading
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My Crohn's Diaries 