I do not (yet) have an overall plan for this blog, but today I decided to bite the proverbial bullet and begin this thing, in an attempt to a) help myself understand the last ten months (and likely all the future months) of my life with a chronic disease, and b) to combat my looming frustration at not being able to find any books, blogs, groups, etc. that reflect me - a young, single woman, living in an exciting but difficult city while dealing with a chronic illness on top of everything else (getting ahead in my career, dating, having an active social life, making the most of my youth- you get the picture).
The day after I got my official diagnosis (more on that later), I did what the good, former straight A student in me would do-I started to research, thoroughly. I went to the closest Barnes & Noble and bought all the books I could find on RA (which, by the way, totaled one), then scoured the city over the next few weeks to amass a small library about RA and started to read and read and read and read.
Granted, I did get lots of info about the disease itself (most of which scared me shitless, but again, more on that later) but when it came to patient profiles or tips for living with RA, most of what I found applied predominantly to women in the middle of their life, living in suburbs with husbands, children and minivans. I in no way intend to diminish the experience of all of these women, but this was definitely not what my life looked like.
For instance, the tip to ask my husband to carry the grocery bags from the car into the house was not really so useful to me, given that I have neither a husband, a car nor a house (three strikes on that one). Same with the advice given on making some household tasks easier, such as laundry, by keeping all of the things you need to do laundry within easy reach of the washing machine in your laundry room (I don't even have a washing machine in my building, let alone in my tiny, Manhattan studio apartment-I have to haul it down the street).
All of this left me wondering- what happens to those of us that don't have husbands/boyfriends/girlfriends, cars and laundry rooms? Are we just screwed and left to fend for ourselves? And what about some of the (admittedly vain) questions I had on top of all my serious ones, like do I have to trade in all my high heels for orthopedic tombstones? Where was the chapter on how to be fashionable with RA? What about the chapter on the politics of dating when you have a chronic illness (massive fatigue and swollen finger joints do not equal sexy, trust me). How about some hard and fast advice on how to keep up at a job that requires late hours, seeing performances multiple nights a week, and being really really social?
I suddenly felt like one of the lone, female penguins from March of the Penguins that never finds a mate. If you've never seen this film, it's great, but really kind of depressing. The narrator makes a point of letting us know that- just like in New York- female penguins outnumber male penguins by a huge, startling number, and that after making that long, harrowing trek to find a mate, some of the females are just plain old out of luck. It has nothing to do with how tall or thin their thighs are, it's just a numbers thing, apparently.
And then that's it-we never find out what happens to them. Do they just go back from whence they came, to make the trek again the next year and hope for better luck? Do they freeze to death or fall into the icy water and drown? Do they buck the mating trend and form their own all girl club to tough it out together? Who knows. All I know is that after reading a handful of books about coping with RA and cruising the internet, the needling question underneath all of my fears was, when it comes to living with my new, super-fun illness, had I just become the human equivalent of the out of luck single female penguin?
So that brings me to starting this blog. 10 months into this crazy illness, I obviously haven't figured out most things-about my illness or about life in general. This blog will not posit lovely, inspiring lessons on why I'm so thankful for my RA (because I'm not) or attempt to give advice or make judgments on how other people should deal with or treat their RA (I believe emphatically that everyone figures out what is best for them, period, including me). But I am further along in answering some of my own questions about what my life looks like with RA as a part of it, and I'm sticking it all out there just in case there are other young women whose lives resemble mine more than Martha Stewart's who are trying to navigate their life while dealing with a chronic illness. You should know you aren't the only single penguin out there.