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,…
Hello again
Hi! It’s been awhile. I started grad school in 2020, and it’s been challenging. Not that grad school is ever easy, but then there was the pandemic on top of it. And the fact that I’m disabled and keep adding more health problems. As I’m wrapping up the master’s part of my PhD program, I’ve realized I miss having this place to write about things. Grad school is isolating. The pandemic is isolating. Having a disability is isolating. But writing helps make connections. I’ve been so busy with grad school, I forgot about that. So, what have I been up to for the past two years? Grad school, autoimmunity, speedrunning,…
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…
Stardew Valley as a metaphor for fatigue
I've seen people use a lot of different metaphors similar to spoon theory that they feel fit them better. Personally, I think of my fatigue like the energy bar in the game Stardew Valley.
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…
Balancing multiple diagnoses: constant calculations
I joined RDBlog week after meeting founder Rick Phillips at the Arthritis Foundation’s Live Yes! Conference of Champions (about which I still need to write a post). The prompts are all really important chronic illness issues that need to be talked about, so I’m excited to see others’ responses to prompts even if I don’t have anything to write about them yet. While I don’t feel like I can answer all the prompts, the question about dealing with multiple diagnoses is something I work through on a daily basis. Managing any chronic illness is complicated, but managing multiple adds a whole new level of complexity. I don’t usually talk about…
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…
