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…
Applying for GRE accommodations
I realized rather late that I would need accommodations for the GRE. I hadn’t thought about it much, because I hadn’t needed accommodations for high school exams or during normal college exams. But 4 hours of testing with only a single 10-minute break really wasn’t going to work for my arthritis or my bladder. On bad arthritis days, my joints start to ache and even burn within a half hour of sitting down. And on bad bladder days, I have to use the bathroom every half hour. Since I didn’t have a urologist at the time that I was applying, though, I went through the process of getting extra breaks…
Spondyloarthritis’s link to the gut: biomarkers
This week’s research is brought to you by my inability to leave anything that can be researched alone. I recently had a blood test report that there’s a good chance I have ulcerative colitis (UC), a type of inflammatory bowel disease (IBD). Constant back and forth with doctors leaves me worried that this will end up being nothing, yet hoping that it will be something. Especially since I’ve already mentally accepted that it could (probably) be something. Countless times in the past I’ve had doctors get excited because a test seemed to show something. Inflammation! A positive blood marker! A little something here on this x-ray! And then they run…
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…
