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…
The cool engineering behind Xeljanz XR
My doctor mentioned this, and the engineer in me thought it was extremely cool. So here’s how they got Xeljanz XR to work properly, so that it’s a once-daily pill instead of twice-daily: they coated it and put a hole in the end! What is Xeljanz? Xeljanz XR (for “extended release”) is a once-daily pill used to treat rheumatoid arthritis, psoriatic arthritis, and ulcerative colitis. It’s also being tested for ankylosing spondylitis currently. You may know it from its aggressive marketing campaign. The makers are really pushing the fact that it’s a pill, not an injection like many other similarly effective arthritis medications (biologics). Though not technically a biologic medication,…
Weather and arthritis
The weather here in Chicago has been a roller coaster recently, which means my arthritis symptoms have been, too. When I woke up today with back pain out of nowhere (and some unseasonably cold weather), it got me wondering—what is it about weather changes that makes joint pain act up? Why does weather cause joint pain? Unfortunately, there’s not a very clear answer, although scientists have some ideas. The most prominent one is related to barometric pressure (or atmospheric pressure, the force exerted by the atmosphere on Earth, including us). As weather changes, the barometric pressure changes. When the pressure drops, joints can swell, which may increase pain for people…
Disney with arthritis
We had an extended-family vacation to Disney World last week, and accessibility was a big point in our planning with three people with arthritis and one person with a cast. It turns out, Disney makes it super easy to figure everything out through their Disability Access Service! Disney’s Disability Access Service (DAS) makes rides more accessible for those who can’t wait in the line for the full time. It allows guests to wait the length of the line, but not in the queue, so that they can have access to shade, seating, restrooms, or other necessary accommodations. In a nutshell, you go to a ride, receive a return time equivalent…
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,…
Person-first and identity-first language: Is there a right answer?
I was on Facebook the other day when I came across an infographic shared by an acquaintance of mine. It purported to list the correct language to use when referring to people with various kinds of disabilities: “person with a disability” instead of “disabled person,” “person with autism” instead of “autistic person,” and so on. If you clicked on the picture, though, you would see that some of the top comments were informing the makers of the infographic that many disabled people actually prefer the opposite. So what’s behind this divide? And what’s “right”? This is the person-first versus identity-first language debate, and unfortunately, it’s not a simple issue to…
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…
Does CBD work?
Using CBD (cannabidiol) for pain, insomnia, anxiety, depression, and countless other conditions has become popular. A lot of people use CBD oil, which comes in a little dropper bottle and often includes some (rather arbitrary) dosing instructions. CBD also comes in pills and gummies and can be vaped. It’s so easy to get, but does it work? Is it safe? What is CBD? CBD is an extract of the hemp plant, the same plant that marijuana comes from. Hemp can be used for a lot more than marijuana, though, and contains many different called cannabinoids, including CBD. CBD and other chemicals can be extracted from hemp in ways that keep…
Enbrel Mini review: Easy, customizable injections
Pros: Easy to use, adjustable injection speeds, optional sounds, one-handed injectionsCons: It’s still an injection After months of fighting with my insurance company, I finally got my medicine and was able to try Enbrel Mini! It’s a bit like something out of a sci-fi movie—maybe one day all injections will be as easy as this. (The biomedical engineer in me is already thinking about what to design to make that happen. Hmm…) Humira helped me a lot for a while, but last fall I started having a lot more pain and fatigue, and my doctor suggested moving to Enbrel. Even though I’d had a bad experience with the Humira Pen…
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…
