Stories
Anecdotes and thoughts about life with arthritis and chronic illness
The Xbox Adaptive Controller Isn’t Accessible While It Costs Hundreds
The Xbox Adaptive Controller (XAC) is revolutionary for disabled gamers. When it came out in 2018, it seemed to signal the end of expensive, cobbled-together, DIY solutions for adaptive gaming. But even 4 years after the release, Microsoft’s biggest gaming accessibility tool has two huge issues that make it extremely inaccessible: cost and availability. To start with, I love my XAC. I use it because I’ve had arthritis since I was a kid, and it makes my hands stiff, uncoordinated, and painful. I’ve also spent almost $500 to build my XAC to the specifications that my disability needs. Despite the hefty price tag, it still includes cobbled-together, DIY parts! Here,…
PLEASE TREAT YOUR KID’S ARTHRITIS (or other illness)
Should kids be taking medications like Humira, Enbrel, and methotrexate? If you think the answer is no, let’s look at the opposite side of that question. Should kids be facing permanent pain and damage to their body? Because that’s what happens if Humira, Enbrel, and methotrexate are taken off the table. Childhood autoimmune diseases aren’t something to mess around with. There are a lot of reasons they may seem less serious. After all, kids can grow out of some of them. There can be periods of remission between flares, so it’s easy to think the next one will last forever. And from the outside, many kids with autoimmune diseases look…
The system shouldn’t be this complicated: A reflection on CVS Specialty
I recently shared an extensive collection of my CVS Specialty Pharmacy experiences over the past several years of dealing with them. Within a month of writing about it, I already had more misadventures to add! It’s unbelievable how much they mess up. However, I’m currently writing to share my “expert” advice for dealing with them: just call and bother them! Unendingly. Until they do what they’re supposed to. Who knew it was so easy? (Sarcasm.) Coordinating my own healthcare as someone with a chronic illness is an unending list of tasks that, if delayed or missed, can seriously harm my health. I’m lucky that my dad is able to help…
My CVS Specialty experiences are certainly “special”
My insurance requires me to use CVS Specialty Pharmacy for my biologic medications. If you’re using CVS Specialty Pharmacy, I can only imagine you’re in a similar situation. I would not use them by choice. I’ve put up with a lot of incompetence from them only because I have no choice—I can’t take my business elsewhere when I’d pay $5000 per month for my medication without insurance. And since they’ve got a captive customer base, CVS Specialty doesn’t ever have to improve anything. To summarize my review of CVS Specialty Pharmacy, they are dangerously slow, convoluted, and apathetic. This is based on my experience with unreturned phone calls, delayed prescription…
2019 JA Conference
I went to the 2019 Juvenile Arthritis Conference in Minneapolis this past weekend. It was four days of meeting others with arthritis and learning how to live our best lives. I’m so glad I decided to apply for a travel scholarship back in February so that I could experience it! I’ve been struggling to write a new post for awhile. A combination of post-graduation life confusion, weird medication side effects, frustrating health, and questioning myself and what I’m doing. Is what I write useful? Why would anyone care about what I have to say? I even have several almost-finished posts sitting in my queue, begun in a moment of confidence…
2019 Walk to Cure Arthritis
(I know I haven’t written here in awhile, but I hope to get back to weekly posts now that the semester is over.) I hadn’t been planning to attend the Arthritis Foundation’s Walk to Cure Arthritis in Chicago, because it was the Sunday before final exams for me. I recently became a moderator of the Arthritis Foundation’s Live Yes Online Community, though, and they asked me to attend to talk about it. I’m so glad I did! How the walks work The Arthritis Foundation hosts the Walk to Cure Arthritis in many cities across the country, mostly in late spring and early summer. Chicago’s was Sunday, May 5th this year,…
Why I stopped using Enbrel Mini
A little while back I wrote a review of my first experiences with the Enbrel Mini injection system. I stand by that review. I think Amgen, the makers of Enbrel, were onto something good when they designed the Enbrel Mini and AutoTouch. However, my Enbrel Mini has failed several times at this point, and I’m going to switch to a different Enbrel delivery method. Right now, I’ve taken Enbrel for two months. That’s 8 doses—or it should be. At this point, though, I’ve used the AutoTouch 10 times for Enbrel injections, and 3 of them have failed. A 3/10 failure rate is pretty bad. Each injection failed in the exact…
Alfred the Great was disabled
Too often, it’s assumed that disability has no place in the lives of heroes and pioneers. At times, it’s even been actively removed from their stories. Alfred the Great had a chronic illness for much of his life, and by any modern standard, he was disabled. “Great” and “disabled” aren’t antithetical, and “weak” and “disabled” aren’t synonyms. But for many years and to many people that was believed to be the case, and disability has been erased from some versions of Alfred’s story. Alfred the Great was king of Wessex, in England, in the late 9th century. He is credited with the creation of modern England. He unified the English…
My first ACR Annual Meeting! (ACR18)
I went to the American College of Rheumatology Annual Meeting this past weekend! It was a bit of a rush to get there. I only found out that it was happening on Friday, and when I learned it was in Chicago, I knew I couldn’t waste the opportunity to go. It was awesome to get to see the most cutting edge research in rheumatology right now and be able to hear it directly from the researchers. I also made some really cool connections with the Arthritis Foundation. Here’s some of the coolest stuff I learned at the conference. Research A quick look at some conclusions I found cool from the…
What spondylitis is like
Spondylitis refers to arthritis of the spine. Instead of being caused by wear and tear on joints, this kind of arthritis is caused by the immune system attacking joints. This is my honest experience with spondylitis. It’s just the facts, not meant to be pessimistic. From the beginning My first symptoms started when I was in middle school: tendonitis in my ankles and then hip, knee, and back pain. In high school my shoulder became a problem, and eventually, smaller joints like my wrists and fingers. After many years, I finally found a doctor who would treat me while figuring out what was wrong. I had figured it out years…
