A recent study found that libido is negatively impacted by rheumatoid arthritis.  This by way of a site called Celebrities with Diseases, through my google alert of course.  :-)  I was a little disappointed that the site that reported on this research didn’t name any celebrities affected by the disease or its side effects–I kind of thought that’d be the point.

In any case, at first glance I wasn’t surprised by this at all.  In fact, I have at various points in my treatment and life since diagnosis experienced this problem.  And, admittedly, I didn’t tell my doctor about it.   I had chalked it up to remnants of my childhood sexual abuse and didn’t realize it could be related to the RA or the RA meds.  Certainly I had found myself at points too stiff or uncomfortable to pursue or allow intimacy.   However, and I thought this was just me, there was always a personal or interpersonal thing to point fingers at for the lacking libido.

My personal experience and feelings aside, here’s study by the numbers:

• 1,271 RA patients surveyed
• 47% reported an absence of libido
• 24% reported stiffness in joints like knees, wrists and fingers that affected sex life

While Celebrities with Disease did not share the ages represented by the study, their source (Yahoo News) did.  Apparently the average age of those studied was 64.  I would love to see a break down of the impact on sexual relationships by age.   I don’t really expect to have an extremely active libido at that age.  More importantly, I’m fourty years younger than the average participant.   Is no sex what I have to look forward to?  Dubious.  In fact, I find that very unlikely indeed.

The most interesting piece reported in this study is the reluctance of the participants to address these issues with their doctors.  Are we still that prude?  Truth be told — I know I didn’t want to acknowledge the connection, because it felt so outside of my control.  Have you experienced this connection?  And have you talked to your doctor?

It’s my birthday.  Yes, there is going to be much celebrating.  Yes, there will be cake, and yoga, and Ethiopian food and all the other things I love (including my fabulously supportive fella D).

However, in the back of my mind, I’m always concerned about what comes next.  I was diagnosed a little over four years ago — timing I’ll never forget because the doc told me that I’d need to be on meds that I wouldn’t be allowed to consume alcohol on… Not something you want to hear right before your 21st birthday.

In any case, what I’m really concerned about are these future kids I want to have.  I told myself I’d have them early; I set this year in time as an initial and slightly unrealistic benchmark for myself… I always wanted to have kids early.  And the RA was another reason to do that–as I get older, I suspect it’ll get harder for me to chase them around, get up in the middle of the night to tend to them, etc.   That would be the case for anyone, but I know there’s a good chance I’ll be in pain.

Trouble is that you can’t force children, and I’m not in a place to have babies yet.  So this birthday serves as an odd reminder of my own impermanence and internal clock.  It’s been a happy day so far and I know it’s going to be a good celebration. But I have to acknowledge that this is the first birthday that I’ve actually cried about.  I am afraid to get older, afraid to miss things because of this stupid disease.

I’ve never felt that fear before.  When I was younger I used to relish the thought of getting older, being on my own, taking care of myself.  Now, painfully aware of my own internal tick tocking, I know I’m living a good life.  I know I have everything I could ask for in my life.

And still, tick, tock, tick, tock…

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?

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.

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.