The Single Gal's Guide to Rheumatoid Arthritis

Wedding bells will ring!

Not for me, silly, but I'm off today to San Francisco (pending good weather and good airline luck!) for my sister's wedding.  And, I'm wearing some kick ass heels even if it kills me.

Hooray!

Shout out for 'Here Comes the Weather'

Lest you think I am the only blogger/writer in my family, let me set the record straight.  My sister is the real writer in the family, following in the steps of my grandmother before her.  Luckily, she writes about food, and not as the result of some terrible, unfortunate health circumstance.

Her fiancé, however, started his blog after suffering a traumatic brain injury about three years ago that has left him with near permanent vertigo and killer migraines, among other super-fun things (and we thought having a wacked out immune system sucked!).

But, like me, he decided to try and make something good come out of this horrible thing, and in the midst of dealing with his injury, picked his guitar back up and began writing a song.  That song turned into an idea to put together an album as he rediscovered one of his original loves: music.

I'm proud to report that he has posted his first finished, fully recorded song, Here Comes the Weather, online (including on itunes), and it's great.  Seriously, or I wouldn't be writing about it publicly.  But enough from me.  If you want to check out more about his story and hear the song, head over to his blog, Cerebellum Blues.

Skinny jeans and all!

Ladies and gentlemen, I have entered the safety zone. 

My totally boring, new healthy-eating regimen actually seems to be working, and for the first time in over a year, I was able to put on my skinny jeans (and not be horrified) today!!!! Hooray!!!!  I even wore them out in public!

Now, I still have a bit to go before I lose all of my RA Freshman 15, but I have lost nine pounds of it so far over the last two months through diet and exercise, and that's nothing to sneeze at.  I guess my metabolism didn't completely kick it after all. (Metabolism, I take back all the hateful things I said about you this past year.)

Given that it's difficult for me to be as active as I was back in the day when I practiced two-hour sessions of yoga a few times a week, I may never lose 100% of what I gained during Ye Olde Winter of Slothdom and Suffering, but you know what, that is OK.  It feels really good to FINALLY feel more fit and able and get back into skinny jeans land. Plus, I won't feel so bad at my sister's wedding festivities next week, where I plan to indulge a wee bit in all the yummy, not-part-of-my-diet foods like kick-ass wedding cake, champagne, and who knows what all else.

RA: Kiss my skinny jeans-clad ass!

Comic Strip #5: What a year!

I have finally hit my one year mark on being diagnosed with RA.  Read all about it and see the comic strip by Jane Samborski here.

A remedy for my rotten ways

Sadly, my exercise plan has hit some roadblocks, the biggest one, of course, being me. Or my RA, rather, but at times it is hard to tell.  Am I having a hard time rousing myself in the morning because I am truly zapped and sleep is what I really need more than anything else (quite possibly), or am I just being lazy and unmotivated (perhaps)?

Who really knows.  What I do know is that, for the most part, the mornings are my only guaranteed time to exercise, but for the last two weeks, when my alarm has gone off, instead of getting up, I glance at it scoffingly as if to say, 'Seriously? After working 10 hour days all this week, you really think I'm getting my ass out of bed now????'

You can imagine the rest of the conversation yourself, and the result.  This is not to say that I haven't been exercising at all, but certainly nowhere near five times a week (what was I thinking???). In my defense, I will also mention that it has been getting dark quite early here now that winter is approaching, and if it isn't light outside, my body does not want to get up, and neither do I.

But, since I am still determined to get back down to, or at least within earshot of my pre-diagnosis weight, and because I know that I have an indulgent streak in me which ought to be tamed a bit (especially after a quite decadent birthday week), I have cut out most fun things that I like to eat and drink. I have done this kind of cleanse a few times before (even before the RA) as a way to help boost my energy and give my liver and insides a break for a few weeks, and I do always feel better afterwards, though quite ready to run fleeing into the arms of a nice medium-rare steak and side of frites:

Honestly, though, since I have already cut out red meat, caffeine and refined sugar, I am half way there. The other half of this heinous sacrifice cleansing diet means that I have to give up alcohol (choke, choke), all meat except for fish/seafood, dairy, wheat and starchy foods. 

Frankly, it's boring as hell, and if I had my druthers, I'd be chowing down on a pepperoni pie from Nick's right about now, sipping a glass of red wine and looking forward to some kind of sugary, sticky-sweet dessert as a nightcap.

Instead, I am eating two soy dogs and some asparagus.  Really pales in comparison, doesn't it?

The good news?  This WILL NOT be forever (would life be worth living without champagne, cheese and chocolate?). It's working (I have lost three more pounds!!!).  It is genuinely good for my poor heart, my weary liver and my goddamn RA. So there you have it. I am being healthy. Blah.

Comic Strip #4: Having RA doesn't make you virtuous!

Or at least, it didn't make me more virtuous. Maybe some of you have fared better.
Here's the latest comic strip and post!

Ding Dong, the wickid 20's are dead!

I woke up on my first day of being 30 in my little studio apartment, wished a happy birthday to myself, and felt infinitely wiser than I had the day before. OK, I'm exaggerating slightly, but god it felt good to turn that mental page over and let everything I went through in the last ten years sail into the past!

I treated myself and took a half day off work, so at 2pm, I walked out of the office and strolled my usual route from Chelsea over to Union Square.  The day was crisp and gorgeous- autumn in New York really is storybook wonderful, and I felt good, too.  As I approached Union Square, I realized I was hungry and decided to indulge in a nice lunch at Blue Water Grill, where I sat outside and enjoyed the blue sky, people-watching, and some quiet time to myself to mull over my last 30 years.  I have to say, all things considered, including the RA, I feel pretty happy with where my life is at the moment, and that feels lucky (even if Wall Street is on the brink of imploding just a few blocks downtown.) I could never have predicted I would end up where I am, but things could be a whole lot worse. It could be last year this time!

After that, I headed uptown and got a pedicure and a manicure in preparation for party #1 that evening
at the Campbell Apartments, which are tucked away in Grand Central.  I was all dolled up in my party dress and some three inch heels (aka taxi shoes), and joined by a few friends who would be out of town for party #2, and my sister, who was luckily in town for a business trip! We were promptly sat at a table in the back.  The Apartments do make you feel like you are stepping back in time, and their classic and vintage cocktail menu includes drinks called prohibition punch and flapper's delight (both of which I imbibed.)  We toasted to the next decade, sat back, and had a grand time. After going to Campbell's, my sister and I continued the evening for a brief drink at Stone Rose Lounge (where they turned the lights on us before we had even gotten near the bottom of our drink- lame) and capped the night off with a little more champagne at my place.  It was a damn good night.

And, because one party isn't nearly enough to mark the achievement of making it to 30, this past Saturday, I threw a big party for myself at Flatiron Lounge. This involved party dress #2 and these:

First, though, my sister took me out to a wonderful dinner of oysters, shrimp cocktails and sushi at Lure Fish Bar, then we taxi'd over to Flatiron and headed downstairs to a table.  I was sufficiently fete'd all night, and I felt more than grateful to have the kind of friends I do. The whole evening was spent with most of the people I love most in the world. I mean really, besides a healthy, functioning immune system, what more could a girl wish for on her 30th?

So, bring on the next decade!  I have no idea what it holds in store, but so far, so good!

Comic Strip #3: Pill-popping and shooting up!

Check out my latest comic strip post at RACentral.com.  Who knew that taking your medications could be so kinky!

Let me know what you think!

(Comic drawn by Jane Samborski)

Turning 30!

 
So I have officially entered my birthday week, and I am really planning to celebrate for the entire week! Well, much of it, anyway. Work already surprised me on Friday with champagne and a gift certificate for shoes (they know me soooo well!). Next, I am going out here on the actual day with a few close friends who won't be in town this weekend when I celebrate with a big party here.  The icing on the cake is that my sister will be in town for a business trip, so she'll be able to come along for both (we hope) and dinner for the two of us here to boot!

I know some people don't necessarily look forward to turning 30, but I can't wait. I've never had much of a hang up about getting older to begin with, but after what my late 20's have put me through, I am raring to get out of this volatile decade, thank you very much.  I've been excited about turning 30 since I hit 28, and this last year has only made me want to vacate this decade even more and start a whole new one.  Although some good things have surely come out of my 20's (living in London, Prague and New York and traveling tons), the last ten years have also borne total heartbreak, family woes, including the loss of two beloved grandparents, and of course, the loss of my formerly pristine health. After all of that, reaching 30 feels like a goddamn accomplishment! Besides, most people I know in their 30's tell me that the 30's are way better than the 20's. 

Here's hoping!

Shouldn't we be screaming about this?

I know that my posts often have a dose of humor in them, but at the moment, I'm not feeling funny, I'm feeling pissed.

I just finished watching a documentary called In the Family, which was made by Joanna Rudnick, a young woman who found out she carries the BRCA gene, a hereditary mutation that substantially increases the risk of developing breast and ovarian cancer.  She was 27 when she got tested.  By the age of 30, when she began making this film, she was deep in the process of deciding whether or when to have prophylactic surgery to remove her breasts and ovaries and essentially eliminate her risk of getting either of those devastating diseases which had already affected multiple women in her family. 

Although cancer is a decidedly different illness than RA, there are so many aspects of her story that hit home for me.  She is young-essentially my age.  She is single and does not have children yet.  She now faces some pretty serious decisions about her health that will impact her future in lasting ways. She has to go see doctors all the time, and her health is constantly on her mind. The film begins with her wondering how or when you tell someone you've just started dating about your health, something I think about all the time.  She has fears that someone will not want to be with her once they find out.  Ditto.

The film follows her story and includes the stories of other families that are dealing with genetic testing and, in some cases, cancer.  To watch some of the incredibly young women in the film contemplate being tested and, for some of them, find out they are positive, to know that their lives are forever changed, is intensely difficult and heartbreaking. Though due to different circumstances, I know what that feels like.

The film was lent to me by a close friend of mine who is in the same position as Joanna.  She is positive for the breast cancer gene, in her mid-thirties and single, and she is planning to have both surgeries within the next few years.  Watching this film and thinking about her and about me, I started to feel a well of anger open up deep inside.  I have four close friends, all of whom are in their late twenties/early thirties, who are dealing with serious and complex health issues.  In addition to my friend who is positive for the BRCA gene, another has colitis, one has ankylosing spondylitis, and another was recently diagnosed with MS (or MFS, multiple f****** sclerosis, as she calls it).  Is it just me, or does this beg the question: what the hell is going on here?

Since starting this blog, a number of women have responded to tell me that they are in the same position I am- young, single and struggling with this crappy disease. Has it always been this way?  Are we just more aware of others who are going through this now because of advancements like the internet, or are we really getting sicker at a younger age? At the risk of sounding like Carrie Bradshaw, I can't help but wonder why so many young people are getting so sick? 

When the movie ended, I started crying and all I could think was, I don't want to be sick. I just don't. want. to be. sick. I don't want my friends to be sick.  I don't want to have to think about my health all the time and wonder what's in store for me. I don't want to worry that my sore throat is going to turn into a bad infection my body can't fight.  I don't want to think about my increased risk of heart disease or lung cancer. I don't want to think about what happens when the medicine stops working, or what else I'll end up developing as a result of the medicine working. I don't want to worry that it may be complicated for me to get pregnant, or what I'll do if I have a flare afterwards and can't hold my baby without pain. I don't want to feel like a giant liability to anyone that might choose to spend a significant portion of their life with me, let alone forever. I don't want to have to think about any of these issues at this point in my life. I don't want to think about it at all.

Unfortunately, I don't have a choice about any of that, which I have to accept, but I do get a choice in what I do about it. Feeling angry and looking at the bigger picture makes me want to take action.  In a very small way, I've started by beginning this blog and beginning to write about it, but much more can be done.  Why aren't we all screaming about this and demanding more funding for research?  Why aren't we asking louder questions about the causes that are behind so many of these autoimmune diseases? Why are so many of these diseases barely understood by most people when they affect so many? 

I don't have the answer, but I think the only way I can stand to deal with all of this is to figure out some way to do something more about it. Maybe it's time to start some kind of network for young people dealing with serious health crises.  

I'd like to invite anyone with any ideas, or anyone who just wants to pipe up to either leave a comment or send me an email. The louder we are, the better.