I started showing symptoms for RA when I was 17, but it took about six months for a diagnosis. I was misdiagnosed with fibromyalgia by the nearest pediatric Rheumatologist (who was a two hour drive away, and never stayed in the room with me longer than fifteen minutes). I was unable to see an adult Rheumatologist until turning 18. But once I got in with a good doctor, I was diagnosed correctly and started on treatment.
What advice would you give to someone who has just been diagnosed with RA?
First off: Take a deep breath. Pour yourself some tea/soda/coffee, cup it in your hands, drink slowly and don’t you dare worry about one thing until you’ve finished your cup. Take five minutes to sit still and quiet.
If you have an overactive imagination and a good friend or family member, begin the research of the RA by asking your friend/family member to do the google search for (or with) you. When I was first diagnosed, my mom did the intense research and then told me what I needed to know. Since just seeing some of the pictures made me sweat and cry, this was a good way to hear bad news in a gentler way. As I got used to the idea of it, I began to do more of the research independently.
Do you use any mobility aids?
Right now I always have a stretchy medical bandage thing for finger physical therapy, and I’ve spent time in and out of braces. I need to invest in a good bottle opener.
How has living with RA helped to improve your life?
I think living with an autoimmune disease can be a gift, because it forces me to live consciously.
Recently I had to have surgeries on my fingers (see below). Before my second surgery, I found myself just laying my hand flat on my desk and staring at it. For those two or three weeks before I thought I’d lose the ability to ever straighten that finger, straightening it was a blessing—it became a miracle. RA makes me appreciate what I have.
Do you have any visible signs of RA?
Pre-this summer, I had significant swelling in my pinky and pointer fingers on my left hand and on my middle finger on my right hand. A few months ago, my joints began to collapse with no warning. I’ve had fusion surgery on my pointer-left, which has left my finger scarred and frozen (won’t bend anymore). I had surgery my right-middle, but unexpectedly the doctor was able to save the joint. This means more scarring and a lot of physical therapy, but at least it still bends. The pinky’s still swollen until later this fall, when I expect I’ll be having a third surgery.
I also have Raynaud’s Syndrome, which means cold and blue feet.
Can you please describe some of your favorite coping strategies for living with RA?
Before the collapse of my joints, I would do small, quiet things that brought me joy at least once a week. For me, that was going to a local coffee shop with a favorite book, buying fresh bread, or hanging out in a book store.
After the collapse of my joints, I’ve found I need an extra push. So I am beginning to do small impossibilities in increasing doses. I try to do one small impossible thing a day (like taking the time to eat a salad or stretch), one bigger impossible thing a week (giving myself the HUMIRA shot or going to a dance class), and one really impossible thing a year (travel abroad or write a book). Since I started doing these things, consciously, I’ve found I feel more in control and confident.
Blogging has also done wonders for me. As a young adult trying to deal with this when my peers were all caught up in the latest fads and gossip, I often felt very alone. Blogging allowed me to express what I felt—the good and the bad. It is also a huge encouragement going forward, as I’m able to look back at some of my entries and remind myself of my optimism (or sometimes remind myself that this pit isn’t the only one I’ve been in). Recently I discovered that by being honest on my blog, I also opened the door for others to be honest in their struggles. It’s a great way to create a community and to get support.
Can you please describe your current medical (traditional and alternative) treatments?
HUMIRA, Methotrexate, Plaquenil, Prednisone, plus tons of vitamins.
Is there anything else about yourself that you would like to share?
I’m in my third year as a college student, getting my undergraduate degree in English/Creative Writing. I work part time during the semester and full time at breaks. I travel a lot, and have gone into third world countries to do aid work. I’ve written three full manuscripts (novels), and hope to one day be a published author. All this to say—RA might try to take our hands, our joints, but it can’t stop us from doing what we love (unless we let it). C.S. Lewis said, “You do not have a soul. You are a soul. You have a body.” I cling to this whenever I feel myself slipping. I am who I am, and RA can’t cripple that.