Chronic Twenties

A girlfriend and student of mine turned me on to the Chronic Illness Cat, a sort of LOL catz for chronics. The pal has her own chronic status and we bonded over that — it’s amazing how you find the support that you need, when you need it. But I digress.

Chronic Illness Cat cracked me up, especially this one.  What Chronic Twenty-something hasn’t been told, “but you don’t look sick.” I’ve had people tell me I must be lying (thanks for your compassion, jerk).

Regardless, it’s so nice to be able to have a laugh about it.  Where do you go for a good chuckle when you’re down?

A few things have become clear to me in the past few weeks:

1. I have a general aversion to pain.
2. I get quite pissy when I’m agitated.

At first glance, these both seem obvious and potentially experiences that are universally human.  So let me explain.

Pain Aversion

Rather than feeling pain, physical or emotional, I tend to change the subject, start a conversation or look for someone to talk to, walk away from things that are too painful to do or deal with, or eat.  Rather than actually feel the pain, I intellectualize it or drive my mind to distraction.

Pain is agitation.  That brings us to pissy.

Quite Pissy

So here’s the deal. When I actually feel pain, my emotional response can be unfortunately predictable.  If left unchecked, pain turns to agitation, agitated turns to pissy, and then we arrive at a helpless, angry feeling that turns cyclical.

Cyclical anger and self-pity is a big problem. It’s all judgement. Why do I feel this pain? Why can’t I do the things that other twenty somethings can?  Why can’t I just be normal?

Inflammation Awareness

Mornings are painful.  The pads of my feet swell up.  This makes walking generally uncomfortable.  However, when I’m aware of the inflammation, where it is and how much stiffness there is, I can better support my body.  I make better choses around footwear or morning activities (for example, I don’t practice hot yoga before 10am now as a rule).  In part because of this disease, I’ve created a life around flexibility.  That wasn’t a joke about yoga, that was to say that my days are not structured around 9-5 business hours or a more traditional Western ideal largely because it doesn’t work for my body.  Frankly, I don’t think it actually works for anyone, but I digress…

Point is: You have to be able to feel the pain, learn what your body is asking for and respond appropriately.  Otherwise, you’re just contributing your own stress and inflammation levels by playing into the judging response.

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 Google alert continues to bring me odd information about my disease.

Yesterday, I came across this article over at DrCutler.com discussing the results of a study at the Georgetown University Medical Center.  According the article, “Researchers studied 76,643 women between the ages of 50 and 79 for their results. They found that consuming any amount of tea carried a significant risk of developing RA and women who drank four or more cups of tea per day had an increased risk of developing RA compared to those who drank none.”

At first glance, in plain Englsih, that seems to say that tea causes RA.  After reading the article, I had to remind myself of something my high school science teacher liked to tell us at any opportunity:

Correlation does not mean causation.

It would definitely appear that this study found a correlation between tea and RA.  However, there are so many other variables unaccounted for here.  For example, are tea drinkers generally more stressed than non tea drinkers?  Stress has been linked to RA time and time again.  We know RA is first and foremost a genetic condition.  Perhaps these tea drinkers used tea to destress, but have already reached their anxiety peak point to trigger RA. 

Regardless, these types of studies don’t do too much for those of us who already have the disease.  Will tea drinking aggrevate our condition?  Who knows.  But I’m going to keep drinking it because it’s soothing.