During the three weeks between my diagnosis and my first appointment with my rheumatologist, every time I walked by a book store, I would slink in and nonchalantly find my way to the DISEASES section to check out their rheumatoid arthritis stock. (Couldn't they name that shelf something else, like the things that might be ailing you shelf, or, the I don't have one, I'm just curious about them shelf?) For the most part, every store seemed to only have one or maybe two books at the most. Clearly, I had gotten a loser disease. There weren't even any celebrity books about having RA. (Since then, Kathleen Turner has written one!)
Slowly, I got a little collection together, and every night after work, I would sit at my kitchen table and read about everything horrible that was going to happen to me, or might happen to me, or could happen to me, all of which was really depressing. There was a lot of crying during these sessions.
Words like chronic, progressive, systemic, pain, fatigue, damage, deformed, disability, and surgery
screamed out at me from the pages, and even though the authors were all
trying to be very nice about it, there isn't really anything nice about
any of those words, especially when they suddenly apply to you.
Scarier, though, were all the new words and acronyms that I didn't know yet, like BRM's, DMARD's and NSAID's, all of which refer to different classifications of drugs used to treat rheumatoid arthritis, and it seemed like a pretty good bet that I was going to end up on one of them post-rheumatologist visit.
The options didn't look so hot. For instance, one of the drug treatments for RA is injectable gold. INJECTABLE GOLD???? I mean, hey, I like gold as much as the next person, and I enjoy wearing gold, but never in my entire life have I ever had the desire, inclination or inspiration to inject it into my body. No need to worry, though, apparently you can also take gold orally. No thank you.
Another fun option was steroids. Again, no thank you, I'd rather not. As I read through all of the different drugs, I zeroed in on one in particular that I realllllly really didn't want to have to take. Unfortunately, it was also the one that, from what I could tell, was prescribed the most: methotrexate. I think part of my immediate aversion to it was that it is used, in much higher dosages, as a chemotherapy drug. The idea of putting something into my body so toxic it can be used to kill cancer just felt wrong, wrong, wrong. And here was the other thing: you cannot, absolutely not, drink alcohol. Not. A. Drop. It's evidently so toxic that drinking alcohol while on it could cause your liver to up and quit.
Great, so now, not only was I sick, but I couldn't even have a drink? I made up mind I would inject and swallow all the gold in the world if I had to, but I did not want to be on methotrexate.
The three weeks slowwlly creaked by, as did I. November 7, 2007 (7 is my lucky number, so I hoped this would be a good omen) finally arrived, and with it, my first appointment with my new doctor, Dr. R. I walked into the huge Beth Israel complex at Union Square and felt incredibly intimidated. I wondered if any of the doctors there would look like Patrick Dempsey (alas, so far, no McDreamies have been located).
I made my way up to the rheumatology division, gave them my name, paid my copay ($50, at that point) and sat down. Surprisingly, there was another young woman about my age in the waiting room. I wondered if she had what I had. There were also several older women, one of whom had a cane, another had a walker, both had huge, orthopedic shoes on and I hoped, perhaps selfishly and maybe meanly, that they had something different from what I had. I sat down and waited, again, to be called by the nurse to go back and see Dr. R. (I have gotten very good at this- one could classify me as an expert waiting-for-the-doctor-er.)
Now, one word about what it feels like to be told you have a chronic illness at the age of 29 (or any age, really) and be at your first appointment with your new specialist doctor, ie: doctor who is in charge of your medical fate from this point forward. It feels big. It feels huge, earth-shatteringly important, scary and urgent. To you, that is. What you realize when you enter into the big medical engine that is our health care system (and I hope you never do if you haven't already), is that while it is the most huge, earth-shatteringly important, scary urgent thing to happen to you, everyone a specialist deals with every day is also experiencing a huge, earth-shatteringly important, scary urgent illness or they wouldn't be there, so in fact, it is just business-as-usual for everyone who works in that office, and you are the only one freaking out about what is happening to you.
So it was that day. When I was called back for a nurse to take all my vital signs, they were very nice, but totally relaxed, discussing what they were going to order for lunch that day like it was just another day at work (oh, right, for them it was just another day at work). I was shown into the exam room, where I waited some more. As my grandmother used to say, I was as nervous as a witch. (Don't ask where that expression comes from, we none of us have any idea.) Every time I heard someone walking up to the door, my stomach twitched and quaked and made gurgling noises. Finally, she came in, and I liked her instantly because she had a really approachable, warm smile. This was a good thing, since I'd read in all my books how important it was to like your rheumatologist and have a good relationship with her. I wanted things to start off on a good foot.
She looked over my information and started asking me questions (including 'do you drink', to which I replied with a resounding 'yes'), and took down my patient history (ie: the story of the toe). She then looked over the copy of the test results I'd brought with me from my regular, non-specialist doctor, and then said, 'Yep. You've got a pretty straightforward case of RA, but otherwise, you're perfectly healthy.' (gulp.) 'I want to do a physical examination, and then we'll talk about treatment.' (dun dun DUNNNNN-my methotrex-fate was about to be handed down.)
I changed into the lovely, very fashionable haute couture hospital gown, and she came back in and looked at all my affected joints, asked me to lift this, move that, etc. I said 'ow' a couple times. Then she listened to my heart. And kept listening to it. 'Did you know you have a heart murmur?' I didn't. She told me she wanted me to go to a cardiologist to have it checked out, but assured me I'd probably had it since birth and that it was most likely benign. Great, something else to possibly be wrong with me?
Then I changed out of the haute couture trash bag gown into my normal clothes, Dr. R came back in, sat down, and I knew the moment had come-it was time to hear the verdict.
'I want to put you on plaquenil. It's an older drug, but it doesn't tend to have a lot of side effects.' WHEEE! HALLELUJAH! (even though I'm not religious.) I had escaped!!!! Of course, in all my time reading about the drug I didn't want to be on, I hadn't spent as much time reading about the others, so I didn't know all that much about this plaquenil thing, though she mentioned it was originally used for malaria. One possible side effect, though, was that it could detach my retina (wait, that sounded bad...), so she informed me I'd have to go to the ophthalmologist to get tests done, and then go a few times a year to have it monitored. Hmmm. OK. She wanted to see me again in six weeks to see how the plaquenil was working, and she warned me that it could take anywhere from a few weeks to six months for it to kick in fully. She also wanted me to continue taking the naproxen my other doctor had started me on. She gave me the name and number for the ophthalmologist, the name and number of the cardiologist, and also one for a neurologist since I told her I've had migraines but had never seen a doctor about them. Good lord. Within the span of 20 minutes, I'd gone from having one doctor (not including my midwife/GYN) to five. How had that happened?
As I left, prescription and eight million referrals in hand, my head was spinning, but one thing was clear: I was going to go home that night and pour myself a big glass of wine.