The Single Gal's Guide to Rheumatoid Arthritis

How to boy-proof your apartment if you have RA

If you have rheumatoid arthritis and plan to start dating, it's inevitable that at some point, assuming your efforts are met with some degree of sucess, you are going to end up seeing one another's home.  Now, there is peril enough in this moment for the average healthy single gal or guy making their first trip over to their date's apartment (what is that weird odor? Oh my god, that used to be a block of cheese? Is that seriously a poster of Yanni on their wall?), but when you are laced with a chronic disease that you don't yet want the new person in your life to know about- and they are coming over to your apartment for the first time- the situation becomes even more fraught with danger.

I mean, for starters, there are needles. And bright red sharps containers with big bio-hazard signs on them under the bathroom sink. And a suspicious number of vitamins, supplements and prescriptions strewn about on the kitchen table.  In fact, the entire medicine cabinet is stocked well enough to sedate a herd of cows. One innocent glimpse inside could be enough to raise the alarm. There are also weird boxes of medicine lurking conspicuously in the crisper at the bottom of the fridge instead of lettuce.  And, upon closer inspection, numerous prescription receipts, insurance claims and doctor bills just sitting out unabashedly on the desk, waiting to be discovered so they can out you.

So not only do you have to worry about taking care of the normal things when expecting company, such as clean hand towels and hiding embarrassing romantic comedies from the 80's (I mean, not that I have to do that), you have to remember to put away that refrigerator calendar that enbrel sent you and to stash all your meds some place where they are unlikely to be casually revealed.

And, it doesn't stop at proofing the apartment.  When you are dating and hiding a chronic, rather high maintenance disease, there are others things to consider. Any and all band aids covering recent injection sites should be removed. Pills normally taken out in the open during dinner need to be covertly tossed back when your date goes to the bathroom. Remember, although you have become accustomed to such behavior, most people in their 30's don't swallow three pills with their evening meal.

Frankly, it's a lot to contend with, especially when you aren't even sure how much you like this person yet, or how long they might stick around.  But, given that telling someone about said chronic, high maintenance disease isn't usually considered good first, second or possibly even third date material, the above precautions may be necessary to ensure that your date goes smoothly. 

Make sure you're prepared.

Comic Strip #11: The Crux of it all

Who would ever think about turning down a free trip to Austria?  Someone with RA, that's who.  Read all about it here and see the accompanying comic strip!

Has RA kept any of you from going on a trip?

CVS: Answering my wanted ad

You may remember my comic strip post from several months back lamenting the difficulties in managing a chronic illness.  Whether you like it or not, getting a diagnosis of RA means you've also just gotten a brand new job, and even when your RA is under control, there is no getting around the fact that it takes time, work and organization to stay on top of everything. 

One of the most aggravating (and endless-feeling) tasks for me is the renewal of prescriptions. Every time I turn around, it seems like it is time to renew another one, because of course none of my prescriptions are synced up with one another. I know it doesn't seem like this should be so difficult, but when you have a million things to fit into your day, remembering what needs to be dropped off when and then picked up is a major pain.

So imagine my surprise, befuddlement and delight when, a few weeks ago, my mobile phone rang out of the blue while at work. I picked it up even though I didn't recognize the number (something I rarely do, but I guess I had a feeling).  There on the other end of the line was a cheery voice informing me that said cheery voice was from my pharmacy, CVS, and that it looked like it was time to renew my plaquenil prescription-did I want her to go ahead and fill it? 

There was a pause.  I felt sure this was some kind of joke or trick question. I mean, was CVS really calling and offering to take care of this annoying task for me? Were they really keeping track of when all my prescriptions were due? Turns out, they were. I said 'yes, that would be great' and the cheery voice let me know that it would be ready for me to pick up at my convenience.

Well, hot damn!  There has been nothing convenient about having a chronic disease thus far, and even though their new service doesn't include making the prescription magically appear at my doorstep (yet?), it is one hell of a welcome favor!

And, just to prove that it wasn't a fluke or a hallucination, this past week, CVS called again because my enbrel prescription was almost up.  This time, I pretty much fell all over myself thanking the pharmacist and telling her how much this new service ROCKS MY CHRONICALLY ILL WORLD!

I mean, really, they have no idea.  Or actually, maybe they do, and that's what's behind this brilliant brainstorm of a service.

Normally, I wouldn't plug a big corporation, but this is almost too good to be true. If you have a CVS in your area, call them to see if this service is available to you, or go online, where you can sign in and manage all of your prescriptions, including setting refill reminders or refilling them online.

It's almost as good as having a personal assistant.

The only living girl in New York

According to my horoscope, 2009 is supposed to be the year of love for me (and all of you fellow Librans, fyi).  Apparently, the stars haven't been aligned like this for me since 1997.  In fact, if my horoscope is to be believed, I ought to find myself tripping over love and romance any minute.

I'm not holding my breath.

Maybe it's the New Yorker in me, but I've grown a little cynical.  Meeting single men who are nice, honest and socially adept is no easy task in this city (or, perhaps, anywhere? ) 

Nonetheless, I've decided it's time to try. As many of you have read, I put a full stop to my dating when I got diagnosed with RA a little more than a year ago.  I declared a moratorium-partly because I was tired of going out on bad dates, but mostly because I knew I needed to focus on myself and not have to worry about anyone else's needs-and, seeing as how I was single, I could afford to do just that.

But, now a year has gone by- I'm doing much, much better, and feel like maybe it's time to face that final frontier.  To that end, I am (sigh/cringe/shiver) going back online.  Oh how I truly wish that I could just run into someone decent on the street, or in a starbucks, or hell, even at a bar, but I'm pretty sure it's more likely that scientists will discover a cure for RA before that actually happens. So there you go.

Don't worry, in the unlikely event that I actually start dating or (gasp!) end up in a relationship, I'm not going to start posting sappy, intimate details about my personal life on this blog (my mom reads this, after all), but I do think that dating with a chronic illness is worth writing/talking about because it does add a whole other category of complication into the mix.  Oh lucky me. I know, I know- any guy who is truly worth having around won't mind that one day he may have to help feed me (and way before I'm 80), but knowing that and finding that guy are two totally different things.

In the meantime, I am fortunate to have some kick ass girlfriends to spend my Friday and Saturday nights with.  As a matter of fact, I just got home from doing the most stereotypical single gal event ever: going with a group of eight single girls to see He's Just Not That Into You.

But hey-it's 2009 now, so maybe he will be...you never know.

Happy Valentine's Day!

RA: The Loser Disease

Let's face it; rheumatoid arthritis is kind of a loser disease.  I mean, if you have to get saddled with a disease, getting a popular one would make some things about the whole ordeal a little easier to take. For starters, when you told people what you have, they wouldn't: A. stare at you with a blank, slightly puzzled expression while trying to emit sympathy even though they have no idea what you just said or what that is, B. easily dismiss it because they have it, too, in their knee, their ankle, their shoulder....ahem, or C. tell you that now is the time to have RA thanks to the superdrugs out there, and besides, it's not like it kills you. (Never mind the fact that it painfully eats your joints, makes you feel like Death's best friend, and can land you in a wheelchair.)

If you have RA, chances are you know what I'm talking about.  Just once, I'd love to get an email or a facebook invite from a friend asking me to a benefit for the disease I've actually got instead of some other one.  Wouldn't it be lovely to be able to take yoga or pilates classes especially designed for people with RA? How comforting must it be to go to the bookstore after being diagnosed and see rows and rows of books all about your disease. Multitudes of books telling you what to eat for it, how to exercise for it, treat it and survive it. How to laugh about it, talk about it with your partner, your kids, your doctor, your boss, neighbor and that random person you bump into on the street.  When I got diagnosed, I was so dismayed, not only to find out that I had a disease (obviously), but also to find out that I'd gotten stuck with a crappy, lame one that nobody seemed to know or care about.  Restless leg syndrome had more books sitting on the shelf of my local bookstore than did rheumatoid arthritis. Nothing against restless leg syndrome, but seriously?

Part of the reason why having RA is so damn difficult, aside from the symptoms itself, is because, chances are, you didn't know what it was before you got it, and now that you have it, no one else knows either, unless they happen to have read a lot of Jane Austen. So not only do you get RA, but you get a kind of weird inferiority complex, like 'my disease isn't as good as yours since it doesn't have any bling, good merchandise or Lifetime movies about it.'  We don't even have a celebrity as a spokesperson. Kathleen Turner finally revealed that she has RA in her recent biography, but sadly, it didn't make a big splash, and even if it had, next to all that juicy backstage gossip, her struggle with RA took a backseat in the telling of her story. 

Sadly, for those of us who got stuck with RA, it is neither popular, well-known nor full of faux-glamour.   Why do some diseases seem to capture the national empathy spotlight while others are relegated to the back of the bus?  It's not just about the mortality rate, because heart disease is the number one killer of women, but breast cancer is a much more identifiable, better-funded, and well, popular, disease. It gets all the attention. Shelley Lewis, author of the sharply funny Five Lessons I didn't Learn from Breast Cancer (and One Big One I Did), writes about this phenomenon in her book, and it got me thinking. Why is RA at such a disadvantage?

For one thing, the fact that it won't kill you is a drawback in terms of being able to dramatize it in the media. In terms of having this disease, it is a really big plus, but compared to personal stories of struggle and triumph with illnesses like cancer or Parkinson's, it's just not tragic enough to pull on the heartstrings of the public (so far, at least). And, since it is a chronic disease, there is no 'Shout from the rooftops, I SURVIVED IT" moment.  There are only smaller, harder-to-portray moments of glee and glory, such as 'HOORAY! My drugs are working! I don't feel like utter shit today!' But RA isn't ever really over, it's just dormant at times-- if you get lucky, that is. 

From a publicity standpoint, RA is a hard case to crack. Its effects are often invisible from the outside, so most of the time, it goes unnoticed.  Even in my sickest days, no one was ever going to look at me and think I was unwell, so how do you get people's attention about it, particularly on a large scale?  I don't think there are any colors for an awareness ribbon left, though I suppose we could move on to patterns. Maybe RA could be polka dots or a perky Scottish Tartan? The idea of having a big walk for RA strikes me as being a little flawed (Arthritis Foundation does have one) given that many people with RA either can't walk, can't walk without assistance, or can't walk for long periods of time without suffering some real, no-holds-barred pain.  I know I can't. I could get through it, but the thought of walking 5K, even for a cause so directly related to my well-being, doesn't exactly inspire me to go and sign up for one if I'm being really honest.

So, where does this leave all of us?  I'm not sure I have the solution.....yet!

If you have any ideas, leave a comment!

Comic Strip #10: The Flare Factor

After my flare last month subsided, I was still brewing and stewing about it, so I decided to make it the topic of my latest post at RACentral.com. Read the The Flare Factor and see the latest comic strip here!

I'm curious to know how others deal with flares, so drop a comment down below or over at RACentral!