So I have done it: I've hit my first anniversary of being diagnosed with rheumatoid arthritis. And what a year it has been -- full of so many volatile ups and downs that it could give the stock exchange a run for its money.
Just a year ago (to me, it feels more like an entire century), had I been writing about my experiences, I would have been singing quite a different tune than the one I've been singing lately. Back then, it was hard to lie down, to stand, to sit, or to walk. Moving hurt and not moving hurt too. As my joints swelled, my world shrank. I didn't see friends as much. I cut out many of the activities I used to do, like my meditation class and teaching yoga. I stopped baking cakes and cookies for friends or to take into work. If something wasn't essential, it didn't get done, because when you are in that much pain, everything costs you more.
One of the things I have noticed with my experience of RA is that there is an amnesia that comes with it. After a few months of being in tremendous pain every day and only getting an hour or two of fitful sleep a night, I got to a point where I could no longer physically remember what it felt like to feel good. I had no body memory left of what it felt like to not be in pain. The constant pain and depression were like a cloak around me, blocking out any remembrance of what it was like to be pain-free.
It's really amazing what meds can do. Now that I am feeling better and am (knock on wood) managing my RA pretty well, a different, protective amnesia has set in like a thick fog. I remember that painful period of time, but very distantly, like remembering a book I read a long time ago. I'm sure this is some kind of safety mechanism to shield me from remembering exactly how horrible it really was, but every now and then, something will trigger a deep memory and send me back with excruciating detail to what my life and body were like then. Although these memories are painful and sad, they do give me an opportunity to mark all the progress I have made and not take it for granted.
So, as a way to commemorate the ups and downs of the last year, I have made a list of things I wasn't able to do then without great pain and, in some instances, some savvy tricks, which I can do now:
1. Washing my hair. This was really difficult because I wasn't able to lift my arms very well, my right especially, due to the inflammation and pain in my collarbone joint (what a nasty little sucker that one was). In order to wash my hair, I had to make use of my ridiculously small stand-up shower. I would wedge my right elbow into the corner and then slowly, with hot water pouring on me, walk closer to the corner so that my elbow would be forced higher and higher up the wall, thereby lifting my arm up over my head and supporting its weight so that I could work up a lather. Very happy not to have to do this anymore. In fact, I'm lifting my arms up and down right now to celebrate!
2. Brushing my teeth. This hurt my shoulder, elbow, wrist and finger joints, especially my right pointer finger, which was so swollen I couldn't bend it. I never developed any handy tricks with this one. At my last dental appointment, my dentist offered to make me a handle for my toothbrush if it ever became difficult to hold again. Sweet, but information that would have been helpful, I don't know, a year ago?
3. Getting dressed. Depending on the item of clothing, this was no small feat. For anything that had to get on over my head, I would bend over and put it on upside down. I found that without gravity resisting me, it was easier to get my arms over my head. I also used this technique to dry my hair. For small zippers, I would use a pair of pliers to hold the zipper head. Putting on my bra was a big fat pain in the ass. I won't go into details here, but let's just say it involved some wrestling around and cursing, and one time, a huge moment of panic when I thought I really wouldn't be able to do it and had to go to work. I am not one of those twiggy women who can get away without one. I need support.
4. Opening bottles. One time, I got a bottle of water while waiting at the airport for a flight. Usually, even if I had a really hard time with it because I couldn't make a fist very well, I could get it open after a while. After trying several times, the guy sitting next to me offered to open it for me. I hated that he probably thought I was just a wimpy girl, but I hated the fact that I couldn't even open a stupid f****** water bottle on my own anymore.
5. Walking, especially down steps. The bottoms of my feet ached and hurt so much, my toe was the biggest bastard I'd ever seen, and my knees and hips were disaster areas. My formerly manic New York pace was slowed down to that of a snail on Xanax, and I had to start taking the subway or bus when, formerly, I would have just walked.
6. Yoga. I went from being able to practice advanced arm balances, inversions and dozens of caturangas (kind of like push ups, except more evil) to only being able to lie down on my mat and breathe. And even that hurt.
7. Washing dishes. Now, the 12-year-old in me would have rejoiced at having such a great excuse to get out of helping wash the dishes. Not so much the case when you are 29 and live alone and do not have an electric dishwasher. You either do them, or get roaches. EWW.
8. Clean my apartment. Changing sheets was sheer agony. Getting down on all fours to scrub my shower was murder. Forget little things like dusting. It just didn't happen, and for someone who has been compared to Monica from the TV show Friends more than once, this sucked.
9. Carrying anything: my laundry, groceries, packages, whatever. Luckily, in New York, you can get just about anything delivered or picked up, but only if you have the extra funds to do so. Most of my extra funds were going towards specialists and drugs (not the fun kind).
10. Sleeping. I had to prop up both of my arms at the shoulders, elbows and wrists with pillows, as well as my hips, knees and neck. I basically had to create a fortress of pillows around my entire body. Just as well I didn't have a boyfriend or husband, as there would have been no room for him!
11. Cook. Because you have to be able to lift heavy pots and pans and move things around quickly. And, if you are cooking in my kitchen, you have to be able to reach up high and crouch down low to get anything you need. Yeah. Right.
12. Stand for any length of time. It was awful. I hated all the people on the subway who got on before me and got seats.
13. Sit for any length of time. This was awful, too, as my hips would begin to freeze up the moment I sat down. I remember one day at work when it was particularly bad. Every time I got up, I would have to stay hunched over and limp for the first few (or fifty) steps until my hips loosened up a bit more. I looked rather like a crazy, witchy old hag from a Disney cartoon.
14. Turn my head. My neck was so frozen most of the time that I lost the ability to swivel my head from side to side or look up or down too much. For the most part, I could cut this out, but walking around a city full of crazy drivers, bikers and people, you need more than your peripheral vision. You need to be able to move your freakin' head.
15. Chew. My jaw was severely affected, so often, I wasn't able to close my jaw all the way, which meant I couldn't really bite down on anything or chew it easily. Hello, soft foods. Conversely, I also couldn't open it all that wide, which made brushing my teeth even more challenging, as well as eating big juicy burgers or opening wide for the dentist.
One year later, I have gotten back way more than I ever dreamed I might have and quite quickly, all things considered. But things are different. I can practice yoga, but it is a very different practice - no arm balances or headstands since my wrists and neck are still too vulnerable. When I can find a way to make something easier on me, I do. My neck and jaw don't always cooperate fully. I still use pliers to open bottles every now and then if I feel like my wrists or fingers are feeling tender that day. But, all in all, I try to relish the small victories as much as I can. The ability to wash my dishes and my hair are hard won, and I don't intend to take them for granted or to relinquish them again without a fight.
Bring on year two!
Published On: October 21, 2008