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Starting Rinvoq
After insurance gave me grief with increasing the frequency and dosing of my Remicade infusions, I finally talked to my doctor at the end of March. Instead of pushing back again, we decided to divert course to Rinvoq. Secretly, I’d wanted to switch to Rinvoq from the start of my flare-ups while on the Remicade. I was sick of having to take so much time off work, of having to clean my entire apartment before the nurse came over, of all of the coordination and mental effort that came along with feeling like I needed to entertain my nurse, as… Continue reading
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Almost the Same Thing – A Short Story
I sometimes write fiction, and this one happens to be about feelings I have about being chronically ill in my daily life. The way it changes you, but the way it sometimes doesn’t feel worth speaking up about, how getting a diagnosis feels scarier than living with the pain, how even something “minor” can change your life forever. You stumble coming off a curb in the middle of a bad, bad day in a bad, bad year in a life you’re not supposed to equate with its smaller parts, and the drop in your gut, the rushing adrenaline of it,… Continue reading
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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 experience ever” to “it was totally fine.” On the instructions of my doctor, I fasted the morning before the test, took a Zofran before I left, and headed out the door. I was scheduled for 3;45, so I arrived around 3:30 and sat in to… 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? Well, insurance fought. And fought. And denied the request because, according to them, I didn’t have an up-to-date tuberculosis blood test on file…even though I did. So, to appease them, I went and got the blood test done again. Then they denied it again, saying… 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, 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
- Book Review (4)
- Fiction (1)
- Medical (12)
- Personal (6)
My Crohn's Diaries 