"Now we can do something about it."

Sandy Barnhart
Chapter 1
The Long Road to Diagnosis

I was officially diagnosed with RA when I was 33 years old. But I suspect that it really started when I was in college, and I had no idea what it was. I was active when I was younger, played softball in the summer, but in college I started noticing changes. Really bad bursitis would just flare up once in a while in my shoulders, and I would end up in the ER. They'd give me some Vicodin, tell me to go rest for two days, and everything would be fine.

But when I was 31, I was diagnosed with Graves disease. I gained weight, because they radiated my thyroid, and when I was trying to lose weight I took a Zumba class. I kept up with the instructor for a while, but then I couldn't move for something like three weeks. I went to my doctor and told her that I really thought that I had to have some kind of arthritis. She was highly doubtful, but when they eventually tested my rheumatoid factors, my sed rate was though the roof. That's when my doctor, who had been with me for years, told me, "Yeah. You have rheumatoid arthritis."

Chapter 2
Validated

It struck me as a strange diagnosis, because at that point, other than hearing old people when I was little talking about how they "had the rheumatoid," I really didn't know what it meant. I had no idea. Like a lot of people, probably, I just thought it had something to do with aging. So at first I was sort of like, "Wait a minute. Are you sure about this?"

But pretty soon, I found a certain relief in the diagnosis because in a way it validated the pain I'd been experiencing for so long. It was a way for me to put a name to the source of the problems I'd been dealing with for most of my adult life. My reaction, as soon as I accepted the diagnosis was pretty much, "Okay, so we have a diagnosis. Now we can do something about it."

Chapter 3
Take Control

One thing I would tell anyone who came to me asking for advice about how to deal with RA -- something that has, in fact, happened to me, by the way -- is that they need to develop a close relationship with their rheumatologist, and be proactive in their treatment. That might sound like pretty obvious advice, but it took me a while to really learn it and understand it for myself. Get involved in your own treatment, because you really can take control of it and there's a good chance that you can have a decent quality of life.

For example, like everyone else, I find stuff online, and if it's something that I'm confused about or want to know more about, I will bring it to my doctor's attention and ask, "What do you know about this?" The fact is, with my experience working in ophthalmology research, and with a Master's degree in public health, I know that you can make the data say whatever you want it to say, so whatever information you find you really do have to consider the source, and make sure there are multiple citations.

Chapter 4
Pleasant Surprise

One of the things I have found that has been a pleasant surprise is that as long as I am taking care of myself, I can still do pretty much everything that I need to do. Let me say, though, that I feel kind of bad emphasizing that, because I know that in some people the disease is absolutely debilitating. But I guess that when it comes down to it, I feel extremely lucky in that regard. I do find that as long as I keep myself moving -- even if it's on a bad day, and I can only take a slow walk -- as long as I keep myself moving, I find it's not so bad. And I'll take that.