This past weekend, I went to a party in the East Village for friends of mine who are getting married next month in Baltimore. I had noticed a nice looking chap when I arrived, and although I am officially on strike, I'm still up for some flirtatious negotiations here and there when the occasion presents itself. And, since I was feeling a little spunky and all together good that day, when he went to refill his glass with sangria, I took the opportunity to head in that direction as well, and what do you know, we ended up chatting.
He seemed nice and normal enough, and things seemed to be going rather well, though I was having to carry most of the conversation. (I feel that this happens a lot, and I have to wonder if the art of conversation has truly become lost or if I'm just not talking to any of the right people). We spoke for a good little while, mostly about his job and the usual New Yorker banter: how long have you lived here, where do you live, oh really? What street? I know a (fill in the blank) up there, etc. No red flags had been raised, but as he continued to explain the nuances of his job, I noticed some funny thoughts going on in my head. Thoughts that, before my diagnosis, would not have occurred to me, such as: is this someone I would want around me when I feel like utter crap? Is this someone who would be willing to be around me even when I feel like utter crap, and would he be supportive or utterly crappy himself? I wonder if he would think I am less attractive if he knew I had a freaky chronic illness? Would he run for the hills or be ok with it? Would he even understand what it means for me, and could I imagine myself wanting to tell him at some imaginary point in the future? Hmmmm.
Now, these thoughts can be troublesome for a variety of reasons. For starters, how could I possibly know the answers to any of these questions after talking to someone for 20 minutes? And, TALK about getting ahead of myself and projecting waaaayyyy into the future. I wasn't even sure if I was interested in this person yet, so what the hell would it matter how he would react to my RA, if I ever told him?
On the other hand, let's face it, having a chronic illness changes the way you evaluate people and relationships and provides a pretty good litmus test for determining who you want to have in your life. After my diagnosis, it became clear to me that some of the relationships I had were not ones that I wanted to keep anymore, or keep in the same way. It's just true. And, though it can be difficult and lonely going through this illness by myself, my diagnosis also made it crystal clear to me that my Ex would never ever have been able to support me in the way I would need to be supported, and that I was in fact much better on my own than with him.
So now, what should be a pretty lighthearted and easy conversation suddenly feels immensely complicated and laden with risk. When you don't have a lot of energy, you have to be careful how you choose to spend it. What are you willing to take a gamble on? With RA, everything costs you more than it did before, including chatting up a guy you just met.
Ho hum. All of this is a perfect example of why I just don't feel so superhot on the idea of starting to date again. Soon after these thoughts began to swarm around in my brain like vultures anticipating a kill, he stepped away to go to the bathroom, and when he came back, didn't approach me again (I can't imagine why). It felt a bit disappointing, to be honest, but also removed a layer of worry I'm not sure I want to face yet.
How do other people feel about this? Am I a total headcase that makes Bridget Jones appear reasonable (I realize this is a possiblity), or are other people also having this internal dialogue every time they meet someone new?
As I wrote about here, I am on a crusade to really, truly, finally do my best to get back into shape. I decided that the most important part of this crusade was to get back on the exercise wagon - not only with the goal of losing my post-diagnosis weight, but also because exercise is one of the best things one can do to help protect your joints and fight back against RA. Movement = Good (if you can do it.)
The good news is that, after vowing to exercise everyday for 14 days straight, I made it! Even when my work life or social life made it oh-so-hard to crawl out of bed at 6:30am in the morning, I did it. Granted, I had to resort to putting my alarm clock across the room on a chair with my yoga mat or walking shoes (no running for this gal), which caused me to leap out of bed on high alert and fly across the room in order to turn it off. This was probably not so great for my nervous system, or for my morning stiffness, which still persists. But, it worked and got my ass out of bed.
The not-bad-but-not-great news is that I think my metabolism is truly in the throws of a mighty death grip. I did lose a little weight- three pounds to be exact, which is certainly better than gaining weight would have been, or staying exactly the same, but it felt pretty lackluster. I mean, I've been busting my ass and have cut out sugary desserts (EVEN the alfajores from Buenos Aires) and red meat for two weeks!!! I admit that I was hoping for better, quicker results, and I didn't really get them. BIG sigh.
Now, I know, I know, muscle weighs more than fat, blah blah blah, but that doesn't really make me feel all that much better.
A good friend of mine reminded me that it hasn't been all that long since all of this began, and that I should just be more patient and keep going. As much as I didn't want to hear that, I had to admit it was true. I took yesterday off from exercising, but today, I got back up and did my physical therapy exercises, bumping up the number of reps I do from 13 to 14. I can tell that I'm getting some of my strength back, so that is progress to be happy about.
My goal this week is to exercise at least 5 days of the week and (gulp) to cut back on alcohol. (Though if you think that I am not going to have champagne at The Bessie Awards at Spiegelworld or the Crossing the Lines Festival opening reception at Diane Von Furstenberg's, you are dreaming! Could it be that my work is interfering with my health? Hmmmm. Fodder for a future post.)
This week is Invisible Illness Awareness week, and boy have I got one. This topic has been on my mind since I began this blog a few months ago, so the coming of this week is a perfect opportunity to bring it up (even if I'm a little late).
It's funny- for awhile, I didn't realize that my illness was invisible to others until I went to my neurologist for the first time back in January. After my initial visit with my rheumatologist, I was referred to a neurologist (among other doctors) to see about my increasing migraines. By the time I got an appointment (she's one of the top neurologists in the city), I was a pretty seasoned patient, and therefore, used to the usual routine-like manner that abounds when seeing specialists. You can imagine my surprise when I was called back to see her fairly quickly, and I was completely caught off guard by her amazing candor and bed-side manner. I felt like she had been waiting to see me all day, and that she had no other place to be or anything else on her mind. I immediately loved her for making me feel like a real human being.
She sat me down and went over my entire history, listening and asking questions in a very personable manner rather than a clinical one. Actually, it was more that she was listening to my story, rather than my medical history, and trust me, there is a vast difference.
After I was done talking to her, she gave me a neurological examination. She was immensely compassionate about the things I couldn't do (for instance, walking on the balls of my feet in a straight line. (The balls of my feet would have protested mightily in the form of sharp pain.) She had me sit on a bed as she tested my reflexes and strength. It was striking how much I couldn't do -when she asked me to hold my arms out straight in front of me, I was hardly able to lift them, and when she asked me to resist her as she pushed them down, they gave away completely. She finished the exam, and then said something to me that I'm sure plenty of people had thought, including myself, but had never before been verbalized:
'It's weird. You look perfectly healthy and fine, but it's clear from a closer look that you're struggling.' That comment so affected me because it was the absolute truth. I was struggling, but to most people, I looked fine. No one was going to look at me while I was on the subway during rush hour and offer up their seat. No one was going to look at me and think I would have trouble pushing a door open and do it for me. No one was going to look at me and see someone deeply in pain. Despite all that was going on inside my body, to other people, I looked like a perfectly healthy, fit young woman, and I was treated accordingly.
It was a double-edged sword, though. In many respects, I was not ready to admit that I needed help- that I needed that seat on the subway, or someone to open a goddamn door for me, and I was relieved that people couldn't automatically tell something was wrong with me just by looking at me. Though it was difficult, I needed to be able to go to work everyday and have a routine and not have people stare at me with that 'Oh god' pity look or feel uncomfortable, and so the guise of being healthy helped protect me in some ways.
On the other hand, when I was in need of assistance and not able to ask for it (my own issue, granted), the invisibility factor was awful. It is, in fact, and I never knew this before my diagnosis, profoundly difficult to truly ask for help, especially from strangers who have no reason to assume you need it. If you are very elderly, or have a cane or some kind of visual cue that you are unwell, most people will actually be gracious and help you (even in New York.) But if you look healthy, you are out of luck. Although there were times I was so exhausted and in pain that I thought I would genuinely fall over if I couldn't sit down on the subway, I was not brave enough to break the social taboo that runs thick in New York City and ask if someone would give up their seat for me. I just couldn't do it, because it was a layer of admittance I wasn't ready to peel away.
I haven't mastered this tricky aspect of having RA yet, partly because I started to feel so much better and needed less help after I started taking enbrel. Now, how I feel is pretty close, at least most of the time, to how I look to others. At my follow up visit my with neurologist today, she remarked, 'you are doing fabulously!' Ironically though, now that I am in less pain and less symptomatic, I feel that having RA has become a bigger part of my identity than when I was suffering from its effects constantly, which makes the invisible factor even more prominent. I mean, all things considered, I feel pretty good. I look like a healthy person, and yet, I'm not cured. I still have RA. I am still dealing with what this means for me and will mean for me. I still get crushingly tired and have flare ups of pain, but no one would ever know unless I speak up, and pain is a shitty secret to have.
One good thing this has done is make me realize more and more that people, even if they don't show it, have a hard time. I think about that so much in this city because I am constantly confronted by so many people in such public but private moments. People struggle in this city all over the place. I try to remind myself that, even when it isn't obvious, the people around me may be suffering greatly. This does not mean I have become a saint (see this post). I still get angry at people who block the door of the train or push me out of the way to get on one. But my own experience has made me more aware of what isn't always evident, and I guess that's something.
I'd love to know how other people feel about this aspect of living with RA, or other invisible illnesses, so I'm looking forward to reading other people's posts this week, and hope people will share their experiences or impressions here.
Don't worry, I'm still on strike, so not that much has changed. I'm still waiting for overall conditions to improve (I can't afford another bad date), but I am also on a crusade to get back into the shape I was in about a year ago and finally take off this damn RA Freshman 15 (which is down to a Freshman 10 at the moment). Vain, perhaps, but it's the truth, folks.
A year ago from now is when it all started. It's also pretty much the last time I fit into my cute skinny jeans or went on a date, save a disastrous one post-diagnosis that was just destined to be bad, bad, bad. I mean, how much fun can a girl be who's just found out she has a chronic disease? The poor guy didn't have a chance in hell. We met up really late at night (9pm) and after only 45 minutes, I was about to collapse into my drink out of exhaustion. All I could think about was getting into bed (I mean by myself). As you can imagine, I didn't hear from him again.
After that, I pretty much gave up on dating, full stop. It's not like I had time anyway, with the millions of doctor appointments filling up my schedule. I spent the winter flying solo, adjusting to the idea and the grim reality of having RA on my own.
Now, thank god, I'm feeling much better thanks to the miracle meds, but, I'm still not dating. It may seem silly or shallow, but as I said to one of my friend's yesterday, until there is less of me around, there will be no getting around. It's time to get back into dating shape.
To that end, I am back on my exercise regime of practicing yoga, my physical therapy routine (Marco would be oh-so-proud), and walking briskly around the reservoir in Central Park (about 3 miles if you do it twice). In fact, I'm vowing to exercise everyday for two weeks straight to make sure I create a habit, and to hopefully resurrect my pathetic metabolism from its death rattle slumber. I'm also (very, very sadly) cutting out red meat, refined sugar (well, at least as soon as I finish the alfajores I brought home with me from Buenos Aires...) and coffee and caffeine. It's moments like this when I wish I drank soda by the gallons so that I could give it up and drop 10 pounds instantly, but alas, I haven't been a soda drinker since I was in school.
I'm hoping I'll be back into my former savvy shape in time to wear my skinny jeans this winter, and then, maybe I'll think about dating. Until then, since I can't have an actual boyfriend, I have decided to have a virtual celebrity boyfriend, and I have picked Joshua Radin (lucky him). I mean seriously, he's dreamy, pretty much says everything a girl would want to hear anyway, and he sings it to you! For now, it'll do.
There is no getting around the fact that having Rheumatoid Arthritis, especially when you have so much of your life ahead of you, sucks big time. That's pretty obvious. But, if you have to have it, you may as well get some fun things out of it when you can.
For instance, when I told my family about my diagnosis, once they got past the initial shock and sadness, my mother and sister immediately went to work planning a trip for the two of them to come to New York City the weekend after I visited my rheumatologist for the first time. And this would not be just any trip, my mother informed me. This would be a fabulous, extravagant, it-sucks-you're-sick-but-let's-make-the- best-of-it kind of trip. (It's no mystery who I inherited my indulgent streak from.)
If you ever have someone close to you get diagnosed with a chronic disease, and you don't know what to do for them, and you have good credit, then may I suggest the following:
My mother and sister arrived safely, one from Virginia, one from San Francisco, just in time for a quick breakfast before our facial appointments at Bliss. Not only is it a kickass spa, but they have sinful brownies to snack on while you are waiting for your treatment. Or after. Or both. (I'll give you one guess what I chose.) After our facials, we checked into this swanky hotel and felt sufficiently smug, then had a cocktail before we met a few of my friends at my favorite lounge for a quick drink and then headed here for a cozy, scrumptious dinner.
When we got back to the hotel that night, my sister and I filled out the room service breakfast menu for the next morning. I think we might have been a touch tipsy, because at 9am, the following appeared at our door: coffee, orange juice, eggs benedict with potatoes and asparagus, pancakes topped with strawberries, Irish oatmeal with caramelized bananas, croissants, bacon and sausage. Yeah. There wasn't even enough room on the table to put everything on it, so we all stood around in our white fluffy bathrobes, walking about from table to bed to night stand, eating a little of this, then sauntering over to have a little bit of that. It was ridiculously excessive, but so much fun. We made a pretty good dent in all the food, too.
In order to work off our morning feast, we went shopping, starting at one of my favorite boutiques. We crossed the city from the East Village over to Chelsea, then to 5th avenue, then back to Chelsea, where I got one of these. (I'm a big baker. It's something I learned from my grandmother and have always enjoyed doing, but once the RA struck, things like whisking and beating batter with a hand-held mixer were really painful and put a lot of stress on my wrist. Not anymore!)
We then headed back to the swanky hotel and got ready for dinner here. It was a truly divine dining experience. We had foie gras served three different ways, including a foie gras creme brulee. (Who knew?)
Post-dinner, we thought we'd check out the action upstairs at the hotel's bar and lounge (complete with swimming pool), but it was really too noisy and too much of a scene for us, so we retired for the day.
The next morning (sans ridiculous obscene breakfast), we reluctantly checked out and loaded everything into a cab to go uptown to my place, where I realized that my entire apartment was smaller than our room had been at the hotel. Sigh. In one last stroke of indulgence, we went to get pedicures nearby, and then off they went back to their respective homes, and me back to reality.
None of this cured my RA, clearly, but it did do a great job of making me feel cared for. I laughed a lot, and it took my mind off all the heavy real life issues I would be confronting from then on.
And now, I'm going to head into my kitchen to make some cupcakes with my favorite consolation prize. Take that, RA.
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