Chronic Twenties

My brain wakes my body up early.  There’s so much to do, so many challenges to tackle, that from a logical perspective, the early bird gets the worm.

My body, on the other hand, wakes up slowly.   Stiff and swollen, I can’t physically move all that quickly until my body adjusts to this new awake state.  And it adjusts must faster if there is no alarm clock involved… From a physical perspective, the early bird gets the stiffness.

I’m an early bird, and I know that I can’t always move fast enough to get the worm.  Sometimes I’m good at reminding myself that it’s ok, that I don’t need so many worms to get through the day.  Other times, I get bummed out about all the worms (today it was cool yoga classes) that I miss out on.

So this bird has been considering being retrained as a night owl.  Unfortuntately, however, I’d still miss out on some worms (early yoga), even though I could stay up late and get some different worms (like blogging) with little oversight at all.  It’s a matter of balance, no doubt.  But the twenty-something brain doesn’t seek out balance, it just sees a worm and wants the worm–the body’s just supposed to keep up and make the brain get what it wants.  Right?

That’s not how RA-land works.   We have to accept that there are some things we just can’t do or some worms we just can’t catch.  Stiff or otherwise, chronics have to live by different axioms, different sayings.  Though, at only 10:20pm, I’m having a hard time keeping my eyes open to find anything appropriate.  Any ideas?

Pretty much every time I visit my rheumatologist, he tells me, “you look good. You’re in remission.”

Unfortunately, by the time I get to his office, I’ve usually been awaken for about three or four hours minimum and the worst of the “morning stiffness” is over.  My body has had time to adjust to itself. Sometimes I wonder if the pain stops or if I just adjust and don’t notice it as much…

So he says I’m in remission.  But when I think of remission, I think of cancer.  I think gone.  No more.

So you say I’m in remission.  But I wake up stiff.

So you say I’m in remission. But I don’t want to get up to walk to the bathroom because the pads of my feet are painfully swollen.

So you say I’m in remission.  But I swell up teaching a heated yoga class.

I want remission to mean gone.  Isn’t that what it means?  Guess not.  RA has different rules.

The other day, I realized it had been nearly a month again since I’ve written here. I don’t have a lot of RA-related epiphanies these days, I guess.

In any case, to find more fodder for this blog, because I believe this is an important perspective that is rarely shared with the world, I finally set up a google alert for the term rheumatoid arthritis.   Now, I get all the news on my disease, straight to my inbox — how convenient, if I’m not in a down-on-myself-because-of-my-health mood.

Yesterday, I got my first google alert on the topic.  And after sifting through a host of information on the the prescription drug market, I discovered RA Guy (http://www.rheumatoidarthritisguy.com/).  This chronic thirty-something writes about his superhero disease status.

His blog is so uplifting.  We are all superheros dealing with this crazy disease that attacks our bodies from the inside out.  Being a superhero is also a good reason for not revealing his true identity — which we have a policy about around here too.

The best thing about discovering RA Guy is his blog roll.  I’m so used to suffering in silence that I never thought to find others and talk.  Thanks for that RA Guy, and thank you google for your little pervasive technologies.

Now, all I need is a clever pseudonym and I can join ranks.

Amongst elders, there’s a commonly understood, but usually unspoken, rule:  Don’t ask a lady her age.

It’s impolite.  It’s unprofessional.  And it makes people uncomfortable.  There are just way too many ways to get the answer “wrong.”

Although I write this blog anonymously, under a banner that clearly states that I’m in my twenties, I don’t like to talk about my age.   As it turns out, I’m more than a little defensive about it.

People look down on twenty-year-olds.  Frankly, when I look around at my peers, I tend to look down on them too.  Maybe it’s resentment, maybe it’s that my chronic situation (among other things) makes it harder for me to relate.   Whatever it is, I don’t appreciate getting lumped in with “young people.”  I don’t feel young.

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What brought this rant on?

The other day, after teaching a yoga class, one of the students made a comment to me about my age.  He said to me, “you’re really young.”

I had three near simultaneous reactions.  At first, I was indignant. I thought, what difference does my age make?  Can’t a 20-something have wisdom to share?

My second response was, “yup.” As I write this I find myself more in the indignant camp.  But at the time, I recognized that I could take it as a statement of truth–though from my current seat, it seems unlikely that’s how it was intended.

The third and final response was more of a non-response.  And this is how I handled the conversation with the student in the moment.  I sort of himmed and hah-ed until he left and I took a shower, and the day carried on.

I’m sure there’s a right response somewhere in the “isn’t it great that I found this healing practice at my age” variety.  But I realized later that the whole thing kind of ticked me off.

I’m angry and defensive.  I’ve been through more than a lot, and while I’m aware I’m not the only one, I want all this crap to mean something.  I want my family drama, my childhood trauma and my chronic status to make me a stronger, wiser person.  Sometimes it just makes me angry and resentful.

Yes, I’m twenty-something.   Please know that I’d prefer not to talk about it.  Ok?

The other day, I received the final survey for a research study I’ve been participating in for nearly three years.  My first thought was, “WAH-AT? There’s no way I’ve been in a study that long… Have I even had this disease that long?”

Clearly, I have.

It’s not a fluke.  It’s not going to spontaneously going away.  I have rheumatoid arthritis.

Thirty months is a long time.  And in that time, the disease has pretty much been tamed by the battery of meds the doc has me on.  But it’s kind of crazy to think how much time has passed since I’ve been diagnosed, since I first got involved in the study.

Since then, I’ve moved three different times; I’ve been the maid of honor in two weddings; I’ve been through two break-ups (one more significant than the other); and I’ve changed careers.