Disclaimer: This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.
Twenty-one summers ago I had just graduated from high school when I received the diagnosis that changed my life forever: Rheumatoid Arthritis (RA). Sitting in the exam room on a chair next to my mother, tears fell down my face and panic rose in my chest as I heard the doctor give me the crushing news. In total shock, I couldn’t believe what I was hearing. No. No, I can’t have that. I’m too young! Images of twisted, misshapen, and mangled fingers filled my mind. Then the thought that the excruciating pain I had been feeling in my own hands and feet over the past several months would never go away terrified me. How can I live with this forever? I’m only 18.
Two days ago I did my third Simponi injection since starting the drug in April. So far, so good; I haven’t had any reactions or side effects or problems from it. And, the injection itself is almost painless, which is a very pleasant surprise, compared to the severe stinging of Enbrel and Humira. I don’t even have to ice my leg or stomach before doing the shot!
But, is it working? No, not yet, I don’t think. My rheumatologist told me that it can take three months at minimum to possibly begin working, and longer than that, more likely. So here I am at month three, pretty desperate for it to start doing its magic. It’s been about five years now, and several failed biologics, since my RA has been stable and well-controlled on a biologic (Remicade). I’m so ready for this to work!
Here’s an article I wrote for RheumatoidArthritis.net about starting my 8th biologic medication: “Starting Simponi”
Thanks for reading!
Oh the weather outside is frightful (as “springtime” usually is in Minnesota), but my joints feel so delightful. Well…maybe not delightful, but I’ve noticed that they’re definitely a lot happier and manageable during cold, dry weather. The heat and especially the humidity of summer greatly increases my pain, swelling, and, well, RA discomfort and misery. I know that I’m probably a bit of a weirdo and in the minority for preferring cold weather instead of warm/hot weather for my RA, but I can’t be the only one–right?
Here’s a link to my latest article for RheumatoidArthritis.net about this:
I’m really sick of seeing snow and especially in April. Yes, we still have snow here in the frozen tundra of Minnesota; I’m looking at the disgusting stuff right now through the window as I write this. I desperately want sunshine and green grass and no more cold, gray, and snowy days. I just wish my RA liked summery, warm weather too.
This is something I often struggle with: That I can’t go back and change the beginning–getting a painful and debilitating chronic illness when I was 18. Or any other “beginnings” in my life that I wish I could change. But! C.S. Lewis reminds me that all is not lost and I do have the power to try to change those bad beginnings into something positive and good, no matter where I am in my life.
It’s never too late to start again, right?
Great news! I had an appointment at my pain clinic this morning and according to their scale, I’ve lost two pounds in the last week/week and a half. YES! As you probably already know, I’ve been trying so hard to lose weight AND while still taking prednisone, which often feels impossible. So this really made my day today! I also just started tracking my food and calories again (Tuesday), but this time trying a new app on my phone–Lose It! I already think I like it better than Spark People, which is what I’ve used in the past.
So anyway, I’m ecstatically happy about losing these two little pounds. I’m ready, more than ready, to LOSE IT! A lot of it. :)
I just decided to create an Instagram page/account, @inflamed_ra, as another companion to this blog. I’ll be posting RA, chronic illness, chronic pain, and health-related posts on this new page. Please follow me if you like!