More Than This: My RA Story
Hello, I'm Angela! Since I've already had a blog post published, I thought it might be a good idea to introduce myself to you all. I was going to start this out with, "Hello. I'm Angela and I have rheumatoid arthritis." But that sounds too serious and too obvious. And like the title of this post says, I'm about more than having RA. I am more than this. I don't want rheumatoid arthritis to define who I am as a person, but I also can't deny that it is a huge part of my life story.
I was born and grew up as a healthy, happy child in a suburb of Minneapolis, Minnesota. Riding bikes, running around outside with neighborhood friends, playing sports, and being just a regular, active kid is what my childhood looked like -- the kind that many other people are also lucky to experience. But when I was 17 years-old, the summer before my senior year of high school, my active lifestyle started to slowly be taken from me, starting with a small irritating pain on the bottom of my right foot, near my toes. It was this sharp, stabbing little pain that shot through my foot every time I stepped on it. This weird mystery "thing" would get better and worse but never totally went away. I didn't pay too much attention to it though; my cousin who is a nurse thought it was maybe a bone spur or calcium deposit in there. Never did the thought cross my mind that I had arthritis.
As months went by, both feet began to feel increasingly sore and painful -- especially right when I got up in the morning. I could barely stand to put any weight on my feet when I would first crawl out of bed. After being up and moving about for a while the pain and stiffness would get significantly better, thankfully, and I'd try to not worry about it. But being the worrier that I am (even before having arthritis), I was starting to get more anxious about what was going on with me. What was going on?
Since age five I loved playing softball, and since about age 10 I also played basketball on various city and school teams. For some reason, I decided to not play fast-pitch softball for my high school team my senior year (I had played grades 9-11), which was probably a good thing in hindsight. During the winter and into spring of 12th grade, in addition to the mystery pain in my feet, my fingers started to swell up and became unbearably sensitive and painful to touch. I couldn't even bend my fingers anymore. Still, I didn't think I had arthritis, even though rheumatoid arthritis runs in my family. My grandma, Nana, had a very serious and debilitating case of it but didn't get symptoms until she was in her 60s. Arthritis was an old person's disease anyway. I couldn't have that at age 18! So I started taping my fingers using some of my dad's athletic tape, and figured I must have just jammed my finger shooting hoops on the driveway, or playing a game of catch, or playing the piano too long, or doing something.
Finally as the school year ended, it became obvious that there was something significantly wrong with me. The swollen fingers kept happening, now at a more rapid and frequent pace. The pain was getting worse and lasting longer. In early July I went with my mom to my primary doctor and she gave us the sobering news that she thought I had rheumatoid arthritis. I couldn't believe it. Images of Nana's twisted, knotty, painful fingers flashed in my head, and I could hear her voice complaining over and over about how she couldn't do the things she loved anymore. I had grown up watching and listening to this, and seeing her in miserable pain. I started crying. Life was over. I was 18 going on 80.
Life did not end, of course. My doctor sent me to an adult rheumatologist right away and I started taking arthritis medications: plaquenil (I'm still taking today), relafen, and prednisone. Methotrexate was added sometime soon after it became clear the relafen wasn't working. Since being diagnosed, I've tried many versions of different drug cocktails, with varying degrees of success and failure. Starting one of the biologic medications, Enbrel, in the fall of 2002, is what really helped to get my RA under control. Thank God for the biologics! I can't say it enough.
Living with RA for 16 years (I can't believe it's been that long) has certainly been a challenge, physically and emotionally. Even though the daily pain is bad enough, having this disease isn't just about the physical pain. It's about the stress of medical appointments and prescription drugs and medication side effects. It's about the huge financial costs of those drugs and appointments. It's also about the emotional costs -- the losses, heartbreaks, and disappointments for which one never truly stops grieving. Living with a painful chronic disease can also cause feelings of isolation and loneliness, and can put strain on relationships with others. The unpredictability and irrational nature of the disease often drives you crazy with worry and anxiety. Unfortunately many people still think arthritis is "just minor aches and pains." First off, the joint pain is pretty awful. Sometimes excruciatingly awful. But in addition to the physical pain, RA finds a way to sneak into every corner of your life and spread its pain in ways you would never imagine. Most people who don't have the disease don't realize that.
However, there is hope! A diagnosis of RA doesn't mean a death sentence. Or a wheelchair sentence. And as the years go by, more and more advancements are being made in medical research regarding new drugs and treatments for RA patients. And, hopefully, one day soon we will even have a cure! I wish so much that the biologic drugs had been available when I was first diagnosed; I feel I would have been spared a lot of suffering. But I am incredibly happy that they are now available to those who are newly-diagnosed -- especially young people. Everyone should have the chance to live as healthy, active, and fulfilling life as possible, even with RA.
Since my diagnosis I have tried hard to live as active and fulfilling a life as possible myself. This hasn't been easy, but I try to make it a priority. It would take too long (and be too annoying) for me to try to write in detail about my life since age 18. But to sum up, I've done a lot of cool, interesting things while constantly trying to remind myself that life is short and unpredictable. And it's especially unpredictable when you live with RA. I graduated from Augsburg College in Minneapolis with a B.A. in International Relations and minors in English and Studio Art. OK, it took me about six years to do that, but I did it. That's what counts, right? I've also lived in Ireland and France and I've traveled a lot throughout Europe over the years (and went to Morocco once). While I can't play softball or basketball anymore due to a permanently damaged right wrist from RA at age 19, I love going bike riding and I try to stay physically active that way.
Even more than I enjoyed playing sports as a kid, creating art was always something that I loved and was important to me. And it still is important -- especially photography. I want to continue creating things and expressing myself through photography, writing, design, drawing and whatever else inspires me. I've always been interested and curious about a million different things, and I still am -- increasingly so the older I get, I think. I love traveling, learning about different cultures and countries, foreign languages, international affairs. I'm a huge bookworm and love reading all kinds of books. I'm also a bit of a film nerd and like a lot of foreign films: Ingmar Bergman, Agnes Varda, Goddard, Truffaut, Fellini, Krzysztof Kieslowski, Michael Haneke, Lars von Trier, etc. Now this is starting to sound like a weird online dating profile, isn't it? But anyway -- I like a lot of stuff and I like to do a lot of stuff that has nothing to do with having RA. Music, art, movies, books, travel, karaoke (embarrassing), community radio, photography, writing, watching Who's The Boss marathons (also embarrassing)....I can go on and on.
Just because you have RA doesn't mean you have to stop living life. You can move to Ireland and get your Enbrel sent to you by Fed-Ex (that's what I did), or you can walk in a marathon and raise money for the Arthritis Foundation if you want to (I wanted to, and I did it -- all 26.2 miles). It's also not impossible to move to France, eat a lot of Nutella crepes, and teach kids there's more to America than Miley Cyrus. You can even drink a bunch of vodka tonics at your favorite dive bar and sing an obnoxious Meatloaf song at karaoke once in a while and that's just fine (I'm still alive, ahem). Just don't stop living! I'm not planning to stop anytime soon.
Thank you for reading and I hope you enjoy my posts. I'm honored to be a blogger on this wonderful new website!
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?