I was on a trip to Texas in 2011 when I noticed some pain in my left elbow. I thought perhaps I had injured it on the plane, awkwardly shoving my bag into the overhead compartment or something. When it still hurt several days later, I went for some x-rays and was told that I had tennis elbow. I was advised to wear an elbow brace and take ibuprofen. Within a month, I couldn't straighten my arm. I couldn't wash my face. The pain was intense. I saw a number of doctors, and all of them assured me that, yes, I definitely had tennis elbow.
Two months went by, and my feet became so stiff and painful that I couldn't walk down the stairs in my own home. I literally had to sit and scoot down the steps on my behind, like a toddler. I went back to my primary care physician and insisted on a battery of tests, because by then I knew something was really, really wrong.
I was tested for gout, rheumatoid arthritis, Lyme disease, and a slew of other diseases. When my rheumatoid factor came back positive, I finally learned what was wrong with me. I learned that I had RA.
When I heard the diagnosis, I was sort of relieved. It was comforting to know what I had -- to actually put a name to what was happening to me -- and I was happy to find out that I wasn't crazy.
Of course, the reality was that I didn't fully comprehend how devastating this disease truly is, and how disruptive it would become in every area of my life. Before my diagnosis, I worked long hours and traveled frequently in a job that I loved. One of my favorite ways to relax was going bowling with my husband and our two kids. I was an active, healthy person. And then, quite suddenly, I wasn't active or healthy. My hands were swollen. I was in serious pain. I couldn't go to work.
Even then, with all of these profound changes in my life, I was in something of denial, because when my rheumatologist told me we were going start on methotrexate I figured that would be a major help. I was suffering so much that I thought any treatment would be a huge improvement over what I was going through. But I was wrong. The methothexate was only minimally helpful. After several months, my rheumatologist prescribed a biologic, and that was a game changer. All of a sudden I could walk. I had energy. I wasn't falling asleep while getting my hair cut, and I thought, "Okay, I might never be cured, but this works. I'm good."
It wasn't long, though, before I got terribly sick from the combination of that biologic and methotrexate, and had to go off everything at once. My body seemed to keep the RA at bay while it battled an awful infection, but once I finally got over that, the RA came back with a vengeance.
After two years of this back and forth, of changing rheumatologists and trying different medications in various doses, I finally screwed up the courage to ask my new rheumatologist if the pain in my elbow and hands and feet would ever go away. She told me no, the RA was causing permanent damage and that I would hurt for the rest of my life.
I suppose I mark the part of my life when I began really and truly living with RA from that moment, two years after my original diagnosis. That was my wakeup call. I couldn't fool myself anymore.
I'm still working -- although at a more flexible job than I had five years ago -- and that's a blessing. I work as a program coordinator at a pediatric hospital in Baltimore, helping kids at risk of obesity, high blood pressure, diabetes. I've been really happy there, because everyone who works in the hospital is familiar with diseases and diagnoses, and I'm able to be pretty open about my RA.
But it's still tough. In fact, when I'm by myself, driving home from work and my thoughts are sort of running free, it can be especially bad. Probably once a week everything just hits me all at once, and I have to remind myself -- and this is crucial -- that it's not my fault I have this disease.
Yes, it makes me sad when my kids want to go bowling and I have to tell them that I simply can't do it. Every weekend I inject methotrexate, and it knocks me out for a day or two. And then there are the times when I feel I'm a bad mom because I let the laundry go for a few days -- which is ridiculous on all kinds of levels. But that's the sort of thing that you'll beat yourself up about. Thankfully, my husband is great about reminding me that I have to take care of myself, and that helps me put things in perspective.
And I have to say, the online community of people out there sharing their stories and advice about RA is really amazing. What I especially like about it is that you don't have to put on your best face in order to take part. You don't have to sugarcoat what you're going through. You can open up, anonymously or as yourself, and there are so many people ready to lend support or even just share an encouraging word.
When you're having a rotten day, that sort of help goes a long, long way.