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.

Disconnect

Despite what I write here on a somewhat regular basis, I'm not a complainer.

Now, yes, I absolutely love to bitch and cackle with glee at other people's stupidity, but, in general, I do not complain about my own circumstances.

I may occasionally mention that I have a migraine or that my hands and feet hurt, but the only person to whom I mention -- not whine or complain about -- my chronic pain is my husband.

It's kinda like what Margaret Cho says about her period: Considering how often it happens, I hardly talk about it at all.

Mostly, I suppose this is because I was raised to suck it up. In addition, however, for a variety of what I'm sure are psychologically deep reasons, I continue to view the expression of pain on my part as a sign of weakness.

I think this puts me at a disadvantage for a number of reasons.

First, it makes me less likely to receive the medical help I need palliatively. Unless I'm pretty much at the "Holy shit, I can't bear this anymore" stage, I'm unlikely to say anything until the pain gets so bad that it's nearly impossible to break the pain cycle. So, I probably live with more pain than I need to.

Second, it makes it that much more difficult for those around me to understand the depth of my pain. For example, yesterday, I had one of the worst flares I've had in a very long time. It was one of those flares that nearly left me in tears. I spent the entire day in bed, just lying there, with my hands curled up. Every step I took was agony. To break the monotony of (and the back pain caused by) lying in bed all day, I came downstairs to check e-mail and post yesterday's (already written) entry. As I was sitting at the computer, Eric said to me, "So what's the plan for today?" I asked him what he meant. He said, "Well, we were going to go grocery shopping." I told him there was no (I might have said "fucking" at this point) way I was going to go grocery shopping, and then I got up and went back to bed.

Now, he had seen me spending all day in bed, basically creaking around like an old person when necessary, making liberal use of the bannister to get up and down the stairs.... And then he asked me if I wanted to go grocery shopping....

Somewhere in there, there exists a major disconnect. I'm not sure where it is. And because I don't know where it is, I don't know how to fix it. If I can't fix such a glaring disconnect in my relationship with my husband, how can I ever hope to fix similar disconnects with the rest of my family and friends?

Operator assistance, maybe? Sigh. I dunno.

Update

Angie from RA and Me asked me about my hip arthrogram/MRI. The arthrogram itself went pretty well: like most of us, I can basically stand a buttload of pain, so I didn't mind the discomfort. And during the MRI portion, I actually fell asleep and had a hynogogic jerk, so they had to repeat a portion of the test. Can we say "moron?"

Anyway, I got the results yesterday, and I have a 2.6 cm tear on my labrum. I also might have some slight impingement caused by a bulge on the head of my femur. Anyway, I'm going to have surgery -- as long as the insurance company approves. I was told that I'd be on crutches for 6 weeks. I'm just kinda hoping that I'll be more-or-less okay by the time of my Disney World trip in late September (I'm a Disney geek), since I'm supposed to be meeting some friends there. And I definitely want to have the surgery before the Chicago winter hits!

My 9 year-old nephew descended upon us last night, so the next nine days will find me trying things like Extreme-Theme-Parking for People Living with RA; Extreme Museum Incursioning for People Living with RA; and so forth. I can't imagine how creaky I'll be! Vicodin, here I come. Oh, and Celebrex, too.

Joey watched me give myself an Enbrel injection last night (pre-filled syringe), and I thought the poor kid was gonna pass out. Oh well. It's good to have him around.

I'm going to try to update at night when he's (hopefully) sleepy, but I may wind up passing out before he does. Ah, youth....

Today's schedule: Cubs game in the rain (he WANTS to go, dammit!) and cornhole league in the evening. Because you haven't had a true midwestern experience until you've been cornholing.

Have fun, all!

"Sorry" Seems to Be the... Easiest... Word

Back when I was a mere pup, Elton John composed a song entitled "Sorry Seems to Be the Hardest Word." Now, I have to admit that I never was a fan of this song: It always struck me as an incredibly maudlin piece of dreck (though, being nine, I wouldn't have used those precise words at the time). Plus, Sir Elton's near-falsetto made it an incredibly difficult song to sing.

Up until about 10 years ago, however, I would have agreed with Elton's sentiments. I had an incredibly difficult time apologizing and saying "I'm sorry" -- primarily because I viewed an apology (as opposed to expressing sympathy; I'm not referring here to the expression of sympathy [as in "I'm sorry for your loss"]) as an admission of wrongdoing.

This view no doubt was related, in part, to my childhood experience of my mother forcing me to say I was sorry for committing some egregious sin -- when I was not, in fact, sorry for having committed said transgression. For example, if I whacked my sister on the head with a toy, I must have done it because she deserved it. Why would I be sorry for that? Being forced to say "I'm sorry" when I wasn't sorry merely left me resentful... and raring to trespass again!

So, "I'm sorry" never really came easily to me when I was a child.

When I was in my 20s, I detoured around this expressional difficulty by learning to say, "I'm sorry you feel that way." Now, this clearly was a "cop-out" -- an expression of sympathy cleverly disguised as an apology. I was not sorry I had acted in a certain way, after all; I merely was sorry that the offendee had taken offense at my offense. You see? And that little sleight of words worked wonders for a while.

It worked until I got a job in... well, let's just call it "human resources." Saying anything more would expose my secret identity, and we can't have that, can we?

Anyway, my "human resources" job caused me to run around willy nilly; I was pulled in so many different directions that there was no question I disappointed a lot of people a lot of the time. Suckage -- both for them and for me!

And yet, something interesting happened to me in my HR position: I wound up genuinely having to apologize -- to say "I'm sorry" and mean it: "I'm sorry I'm late." "I'm sorry I won't be able to do that for you." "I'm sorry I disappointed you." "I'm sorry I wasn't able to get those figures for you."

I'm telling you, it was like I had a damned parrot on my shoulder, demanding, "Polly want an apology [squawk]. Polly want an apology [squawk]." And I'd dutifully pony... er... parrot up the apology.

You could almost say that apologizing became a habit for me. And it wasn't the worst habit I could have developed. In fact, while I initially resisted apologizing, I eventually came to admire its charms. Why? Well, I discovered that apologizing and accepting responsibility for a fuck-up really and truly disarms people. It is a significant social lubricant that helps people get along. And, it turns out that it cost/s (me, anyway) so very little.... How unexpected.

Since I'm no longer in my HR position, however, I find that I'm becoming annoyed with the whole apology habit. Why? Because I still find myself apologizing a lot -- but mostly for various things of which RA is the root cause: "I'm sorry, but I'm just so tired right now." "I'm sorry. My feet are really achy right now." "I'm sorry, but I just don't think I can." "I'm sorry, it turns out I won't be able to make it after all."

My husband keeps telling me, "Kim, you never have to apologize for being sick." And I really appreciate his attitude, and I love him for it.

But it's hard not to apologize for the shit that RA puts us, our families, and our friends through.

Just as it's hard not to get angry for having to apologize in the first place.

RA sucks.

RA Hash Recipe

I'm aware that this issue already has been mentioned, discussed, and chatted about numerous times and in numerous places. I won't be covering new territory with this post. Still, when the mood arises or the circumstances present themselves, you sometimes have no choice but to gather all the ingredients together and make some (re)hash.

Having said that, here is my general recipe for RA Hash (a little dish that's whipped up when you try to explain RA and its effects on you / your life to a person unaffected by chronic pain / illness):

Ingredients
2.5 cups ignorance
1 cup apathy
1 cup incomprehension
1 tablespoon impatience
1 teaspoon pity or sympathy

Combine all ingredients, being sure to blend only until a stiff mixture is formed. Firmly press the unpliable mixture into an ungreased, fluted tart pan (to make later removal difficult). Set oven temperature to the "pain, inflammation, and erosion" setting. Bake until fatigue, frustration and irritability have set the mixture so that it has a hard crust. Remove from oven. Serve with a smile.

Obviously, I'm being a bit snarky here (sigh. This is a character flaw. Oh well.).

But what ingredients or elements would you add? How would you change the temperature? Is there something I'm missing?

Teach and Learn

My nine year-old nephew, Joey, will be staying with us in Chicago for a week and a half this summer. While I know that some people might view a visit from a nine year-old as a reason to groan, I'm pretty psyched about it.

After all, Eric and I (childless forty-somethings) lead fairly sedate lives. But a visit from an incredibly active, physical, and inquisitive kid who has never traveled on his own or visited a big city is bound to be full of exciting activities in which I wouldn't typically engage -- activities like Hurricane Harbor Water Park and Six Flags Great America, for example.

Unfortunately, physically, I'm not the person Joey knew up until about a year ago. Though you'd never know it just by looking at me, I'm creaky and slow and in constant pain. What's more, I seem to have a physical "max" beyond which I cannot go without risking a severe level of grumpiness. (And let's face it: If Kim ain't happy, ain't nobody gonna be happy.)

So you see the problem, don't you? I so desperately do not want to disappoint Joey (or myself). But I'm afraid I might. Or maybe I should say I'm afraid RA might.

Despite these fears, I have before me an extraordinary opportunity -- because Joey doesn't know that Aunt Kim has RA. Joey doesn't even know what Rheumatoid Arthritis is. When he visits us this summer, I'll have the chance to teach Joey about RA and invisible disabilities.

What would you do here? What would you say? What would you teach an active nine year-old about this disease that has so drastically changed our lives?

"Those" People

Back when I was 18, this was how I imagined my life would be now, in 2009:

I'd be 43, gorgeous and slender, with a full head of hair marred only slightly by flecks of gray. My award-winning personality would ensure that I'd have an ever-expanding circle of friends who would bask in the glow of my charisma. With my student loans having been repaid (years earlier), I'd be a busy and successful reconstructive surgeon, happily married to another successful surgeon (perhaps a cardiac guy? Who knows? I was flexible.). Our house in the Manhattan suburbs would be filled with the sounds of dogs barking, children playing, and of course, a nanny screaming in the background.

But I never, ever thought I'd be one of "those" people.

You know the ones I'm talking about, don't you? Those people whose gaze it's sometimes difficult to meet. Or those people in whose wake follow whispers and looks of sadness, pity, puzzlement, or occasionally, even suspicion. Or those people who are greeted with the words, "But you don't look sick: you look GREAT!" Or those people whose conditions make other people think, "Wow. I'm glad I don't have what s/he has...."

But it turns out that, for better or for worse, I am one of "those" people.

Because I have RA.

I have a chronic, systemic, autoimmune disease that can cause joint deformity and bone erosion, cardiovascular difficulties, fatigue, excruciating pain, and even early death. And the treatments for said disease generally involve ingesting or injecting poisons -- yes, poisons -- that cause their own set of difficulties.

I've gotta be honest with you: This sucks, and sometimes, I get really pissed off about it. Generally, I'm not one of those people who placidly accepts inexplicable edicts of fate, circumstance, or whatever you want to call it, with sanguineness and equanimity. Instead, I tend to act -- to rage against the machine: I repeatedly push the on/off button, try to reboot or flash the BIOS, re-install the software, or occasionally even throw the damned computer against the wall.

For me, this fight is part of my identity as one of "those" people. Identity? RA as part of my identity? You bet. It affects me as much as my marriage does. It is an ever-present and familiar (if not welcome) companion on my daily walk. I know its taste, its smell, its touch, its reach. And at this point, I can no more throw it off than I can discard my identity as a wife, a daughter, an older sister, an aunt. Like it or not, RA beats a daily rhythm in my life, and it's here to stay.

Of course, that sounds an awful lot like acquiescence, doesn't it?

I guess it's probably most accurate to say that with regard to RA, I walk a sometimes drunken line between war and peace, between acceptance and rejection, between chaos and calmness, and even between hope and fear. And until there's a cure, I'll probably continue to weave back and forth, miserably failing my RA field sobriety test.

That's okay: After all, I'm one of "those" people.

You know the ones I'm talking about, don't you? Those people who somehow hold on to realistic hope in the face of realistic fears. Those people whose strength in adverse situations makes others think,"Wow. I can't believe s/he has RA." Those people who continue to strive for something... better, something... more.

One of "those" people?

You bet your ass I am.