inflammatory bowel disease
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My MRI Enterography Experience
A few weeks ago, I had my first MRI enterography, and it was…an experience. Leading up to the MRI, my doctor warned me that it wasn’t the most pleasant test, so I wasn’t quite sure what to expect. I turned to trusty old Reddit threads and got the typical range of “it was the worst… Continue reading
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Insurance Ills
After my appointment with Mayo Clinic at the beginning of the year, I was feeling hopeful for the first time in a while. Unfortunately, the feeling didn’t last long. My doctor at Mayo submitted a request to my insurance to increase the timing and doses of my Remicade infusions. Nothing out of the norm, right?… Continue reading
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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,… 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… 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,… 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,… 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… 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… 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… 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… Continue reading
My Crohn's Diaries 