RA (Rheumatoid Arthritis) Sucks

I'm Gumby, Dammit!

There's an old adage that says, "We make plans; God laughs."

In my new RA life, however, I'd change that adage to "I make plans; RA laughs."

One of the most frustrating things about having RA is that I've been forced to become ultra-flexible (and I don't mean joints-wise). I used to be able to make plans weeks (or at least days) in advance -- and subsequently keep those plans. Nowadays, however, since I'm no longer sure what I'll feel like on any given day (okay, achy, tired, etc.), I may be forced to change plans at a moment's notice.

For example, during the holidays, I occasionally was unable to accompany our guests to planned and spontaneous museum or store outings (activities of which I wanted to partake) because I was just so fatigued. The only thing I could do was nap. I can't tell you how disappointing this was.

I never was a terribly rigid person (obstreperous, yes. Rigid, no.). But RA is causing me to be bendy and twisty all over my life. And I hate it.

Of course, when I was a kid (lo, these many years ago), I used to think that hyperflexibility was ultracool. Remember how we used to stare in admiration and amazement at kids who were double-jointed or who could bend their middle fingers back all the way to their wrists?

The deep irony in all of this is that even as RA has forced me to become flexible in my life's activities and plans, it is making my joints become more and more rigid.

This disease is a bitch.

I just can't wait until the day that RA makes plans, and I'm able laugh.

Wound up to Unwind

Eric and I are two weeks away from our Disney vacation -- and after spending 6 weeks on sticks, I'll need it. I am pretty close to physically and psychologically "done."

But even if I weren't nearing the end of my metaphorical rope, having spent a butt-load of energy and effort planning my time off, I'd probably still need to vacate. I mean, consider what actually goes into the making of a "vacation:" tickets, reservations, tee times, car rentals, itineraries, plans to meet up with others, packing lists, 3-1-1 (pfffft).... Is it any wonder that we actually need a vacation by the time it's time to take vacation?

Of course, there's no small irony in the fact that we get ourselves all wound up in order to unwind.

"Unwind" can be an odd sort of word, if you think about it. And lately (due to some books I've been reading), I've been thinking about it in an odd way. More specifically,I've been thinking about the way in which clocks and watches can be "unwound" or reset, and about the way in which truly "unwinding" time would allow us to have do-overs. Mulligans, if you will.

The following list represents some Mulligans I wish I'd been granted:

1. I would have tried to be more patient and less stubborn (just in general).
2. I would have been more demonstrative and less hide-bound emotionally in my youth.
3. I would have been more gracious -- in victory and in defeat.
4. I would have followed the spirit of the law more than the letter of the law.
5. I would have tried to be an optimist (even though it's a total waste of time).
6. I wouldn't have broken my sister's tooth by throwing the Atari game controller at her while we were playing Frogger (see #3 above: gracious in defeat). Instead, I would have just punched her in the arm.
7. I would have beaten the crap out of Jeff Davis in 7th grade for putting Tabasco sauce in my punch. What a douche.
8. I wouldn't have given myself highlights two times in two days. (!)
9. I would have worn a helmet. (This has nothing to do with #7.)
10. I wouldn't have lied to my parents about where I was going, what I was doing, and with whom I was doing it on Friday nights. Nah -- that's not true. Lying to them was one of my wisest decisions.
11. I would have insisted on meeting my mother-in-law BEFORE the engagement.

Of course, there are some things that I'd never change. And those things are probably more important than the desired Mulligans:

1. I still would marry my husband (despite # 11, above).
2. I still would drive our riding lawnmower into the deep end of our inground pool (primarily because it makes for a good story).
3. I still would get bitten by a dolphin (ditto). And a donkey (again). And a monkey (yep).
4. I still would speak my mind with conviction, often stepping in shit along the way.
5. I still would go to the University of Virginia. (FIRE AL GROH!)
6. I still would teach safe-sex classes and do condom demonstrations for prostitutes.
7. I still would be ordained an Episcopal priest.

Nothing in there about RA: Interesting....

ZENbrel

Back BRA (that's "Before RA" -- though, with my recent weight gain, I surely could use a back bra for those annoying new jigglers...), I was something of a prescription and medication whiz kid. Simply because I've always been interested in both medicine and chemistry. (Yes, I am a total goob. A potty-mouthed goob, but a goob nonetheless.) In college, in fact, I did a double-major in chemistry and psychology, and seriously considered medicine as a career.

Anyway, you could say, on a certain level, that I "loved drugs." Really and truly loved drugs. For example, I knew brand names and generic names, effects and side effects, mechanisms of action, and medications in similar classes. I was a walking PDR (Physician's Desk Reference, the "medical bible" on all things prescriptive) whom family and friends would consult for advice on medications. I was so interested in this stuff that I kept the actual PDR (for light reading, not for extra toilet paper) in my bathroom.

But something strange happened to me ARA (that's "After RA").

Sure, initially, I did all of the research on the meds I was trying: As a chemotherapy agent, Methotrexate depresses the immune system... which explains why I got colds and cold sores after every dose. And Leflunomide, well, that causes alopecia (the technical term makes hair loss sound much less threatening, don't you think?), which explains why I developed (and have yet to recover from, dammit) granny hair and had to -- good God! I mean, it's so '80s -- GET A PERM! (So now I'm fat, bald, and slightly fuzzy. Oh, the indignities.)

I actually became obsessed with RA meds. Mostly because they're so scary. Turns out black boxes aren't just found on airplanes, and when you have to consult them, they both contain information you really don't want to have to know.

My obsession had me consulting and re-consulting, poring over information about the bad things that could happen, and becoming hyperaware of my own body: "My throat is hurting a little bit: am I getting a cold?" "OMG -- where did that bruise come from? Do I look pale? Is something happening to my blood?" "I have some specks in my eye. Should I discontinue the Plaquenil?" "I have abdominal cramps: Is that from the Leflunomide or is it from my period? Oh, wait... I don't have a uterus. Nevermind." "Oh God, please, no -- I HAVE A HANGNAIL! What could that mean?"

I was driving my poor husband crazy. Okay, forget about him, I was driving MYSELF crazy.

But one day, something happened. I guess you could call it a cosmic karmic crisis. I just became completely overwhelmed, depressed. I wouldn't get out of bed or eat -- couldn't get out of bed or eat. I actually lost weight. I cried. And cried. And cried. This went on for several weeks. (Again, my poor husband.) As a former therapist, I observed with scientific interest and accuracy my symptoms. As a human being, I absolutely loathed what I was going through. Finally, I realized I was miserable enough both to get myself some help (on a variety of levels) and to seriously change my approach to RA and to living.

So I did.

I can't say it was easy, and I admit to having the occasional relapse into my old behaviors. But I just won't do that any more. I can't afford to do that anymore -- spiritually, emotionally, physically.

So I tossed out my PDR. And when I get a "consultation" these days, I respond peacefully, "I just don't know. I'm afraid you'll have to look that up yourself."

Because what will be, will be. I'll deal with it as it happens, if it happens.

And when people ask me what medications I'm on to treat my RA, I tell them, "I'm on ZENbrel."