The Single Gal's Guide to Rheumatoid Arthritis

What's the verdict? Healthy, or sick?

 

This week's New York Times Health section is a veritable feast of topics for those of us in the chronically and/or seriously afflicted world. This essay about the concepts of health and sickness especially resonates with me because it's something that has been on my mind a lot lately. Upon reading it, I immediately hearkened back to a comment my rheumatologist made on my first visit when she pronounced me as 'otherwise healthy.' Logically, I knew what she meant - aside from the RA, I was in good shape and was, basically, healthy.  But I still find no end of irony and plain bizarreness in such a statement.  After all, how can a person with a chronic, possibly degenerative illness be considered healthy in any way? How can you be healthy if you have to be on drugs for the rest of your life?  

Yet, in many ways, it is still so deeply ingrained in me to consider myself healthy that I am frequently taken by surprise when something happens to sharply remind me that I'm not.  For instance, while on the internet one day, a pesky little ad came up soliciting 'young women in good health' to be egg donors, and although I'm not remotely in the market to become an egg donor, it hit me that I no longer fit into that classification. I may be young and a woman, but nobody's gonna want my eggs but me. It's silly, but in that moment, I felt rejected, unfit and, well, sick in some larger sense of the word. It didn't feel like a label that should belong to me when I haven't even hit 30. I mean, come on!!!

Granted, it's a big blow at any age to find out you have a disease, but for me, it feels like a particularly striking blow given that I am so young and not yet in a stage of my life when I would have considered my health to be fleeting or in jeopardy. Health is supposed to belong to the young and sickness to the old, or older-than-me, at least.

Back in the dark, deathly days of last winter when I was completely in the grips of RA, I did feel and think of myself as sick, but now that the enbrel is working its magic, I often feel healthy.  But, since there is no cure and I still have RA, am I technically still considered sick?  What would a doctor say?  Are sickness and health mere feelings, outside perceptions or actual states of being? And how do you determine the line between the two when so often it is blurry?

When I found out I that I had a nameable, knowable disease with no cure, it felt like a line had been drawn in the sand between being healthy and sick, and I had no choice but to step across it. It was the proverbial Before and After. But I have found since then that the line isn't so impermeable or solid. To most people, I look like I always did. Even on the days when I feel sick, I'm able to pass as a perfectly healthy person on the outside.  I don't have any telltale signs that automatically mean sick to other people, and yet I do have this horrible, awful disease.

Sigh. It's all a bit of a mindf***, isn't it?

There are a lot of swollen toe joints out there.

One of the funny things about having a blog is that you can see how people have found their way to your site (at least in some cases, but no worries, I can't see who).  For instance, if you click on a link to my site from another site, the first site you were on will show up under my stats. If someone searches for something on google and then ends up at my blog, that also shows up, including the words they typed in that got them to me.

One of the top searches is swollen toe joint, which inevitably pulls up this post about how my RA first presented itself in the form of a huge swollen toe joint even though I had a date at Jean Georges that afternoon (how very rude). Sometimes, there will be several searches for this in a single day, and I always feel a little sorry for whomever it is typing that in. I wonder if, when they click on over to my site, they are swept up in horrible sudden fear that their swollen toe is also the harbinger of a chronic disease that will eat their joints.  After all, their swollen toe could be swollen for perfectly innocent reasons that have nothing to do with RA, but I know that, if I were them, I would be absolutely convinced that I now had a horrible, chronic disease. 

Interestingly enough, some other google searches that have landed people at my blog are how to shoot up pills with needle (my personal fave), take off your top, sympathy cupcakes, dumped by voice mail, funky rain boots and cartoon physical therapist.

The fact that all of these searches in some way point to my life makes me feel like I am living a much more interesting one than I had previously thought. Go me.

 

Call your representatives today!!!! Arthritis Act is getting a vote!

Hello to anyone who is reading this blog!

I just got this from the Arthritis Foundation this morning. I also just called my representative to ask her to vote yes.  It took a total of two minutes. And now I am calling on you to call your representative and do the same so that this very important act gets passed. 

From the Arthritis Foundation:

Arthritis Act Scheduled for Floor Vote Today!

Call your representative this morning

The US House of Representatives has scheduled a vote expected today, on the House floor on HR 1283, the Arthritis Prevention, Control and Cure Act. 

PLEASE CALL YOUR REPRESENTATIVE THIS MORNING AND ASK THEM TO VOTE YES ON HR 1283, the Arthritis Act. 

Offices will be open from 8:30 am- 6:00 PM EST.  We need all of you to please call the Capitol switchboard at (202-225-3121) or call your Member directly and ask him/her to VOTE YES on the Arthritis bill, HR 1283.

To find out who your representative is and how to call them directly, click here!

It's 11pm. Do you know where your dinner is?

Yeah, so it's 10:42pm as I sit down to write this.  I have just gotten home after a nearly 12 hour day, following yesterday's 13 hour day, and tomorrow will likely be at least 10 hours, if I'm lucky. I've been running around the City in heels (not high ones) since we had a board meeting this evening, so my feet hurt.  My choice and my fault, but still.

I was too tired this morning to get up and walk around the reservoir, like I should have, so I have now skipped two days of exercise already this week, meaning that I have to have to have to exercise for the next four days straight if I'm to keep on my exercise schedule in a scheme to revive my metabolism.

I had a granola bar for breakfast at 9am, a sandwich at 12:30pm, and a small glass of red wine at 7:45pm prior to a show. I still have to take my shot tonight, along with my other meds, oh, and eat dinner (which is heating up in the oven). And post something onto my blog since it's been three days.

Moments like these, I find it a little peculiar that this is the life I have chosen for myself, and I wonder a bit if it has contributed to my current health status, or at least (to be sure) has exacerbated it. I also wonder about my mental health status.

And yet, I just got back from watching an amazing, brilliant, dirty, sexy, witty work of art performed by incredible dancers and created by someone whom I regard as pretty much a genius.  Furthermore, it was an invited dress, so I knew most of the people in the small audience, and also most of the people involved in making the show happen, on and off stage.  To be part of an evening like this felt special, intimate and exciting, and like something that could, or would, only happen in a city like New York.

So what is a gal to do?  Stick it out, I guess.

The trip of a lifetime: Part 3

Click here for parts 1 and 2 if you need a recap:

Katie, Em and I said a final good-bye to Cuzco early in the morning and headed out to catch a short flight to Puerto Maldonado, where we started our journey into the Amazon!  The flight went fine, and we were super lucky and got to take part in an emergency fire drill at the Cuzco airport before we boarded the plane and took off. Nothing like a good fire drill to get your adrenalin up and running.

We touched down in Puerto Maldonado and were thrilled to instantly feel warm, balmy air seeping in from outside.  We waited for what seemed like forever for all of our luggage to show up at baggage claim (but were grateful it all did show up, eventually), and then we walked outside and were greeted by sunshine and a bright smile from Natalia, who had a sign with our names on it and would be our guide for the next two days.  We crowded onto an already crowded bus and were debriefed.  First stop was the office where some people would leave bigger luggage behind, then we'd load up on water and other supplies and head off to the second stop, a dock where we would catch a boat to the eco-lodge.

I loved how different all the greenery and even the sky was from everywhere else we'd been in Peru. And, after a few very cold evenings up in Lake Titicaca, I was ready to get a little sweaty.

 

I was looking forward to the boat ride on the Tambopata river - it had been one of the things I'd been looking forward to the most. We climbed gingerly into a long, banana shaped boat that rocked back and forth quite a bit as the rest of the group slid and stumbled in. We all got arranged and put on our life jackets (very fashionable ones, I might add) and then sped off!  They passed out a box lunch for us to eat that wasn't half bad. It wasn't exactly half good either, but it took care of things. I was as happy as could be, feeling the wind in my face and watching the shoreline dotted with palms and wild jungle pass by.  Our boats had little roofs over them, and it was a good thing, as about 30 minutes into our ride, the sky darkened and let loose with some pretty ferocious rain. I would hate to see what it is like in the wet season.

Lucky for us, it didn't last long, and by the time we arrived at the lodge, the sun was back out.  We had a brief orientation with Natalia and met the couple who would also be a part of our group, then we got our cabin assignment and marched off to find it.  The lodge only had electricity in the main cabin where we would eat our meals, and there was no hot water, but all in all, I wouldn't say we were really roughing it too badly.  I mean, we had cheetah print bedspreads, for god sake.

 

At the Explorer's Inn, they don't waste anytime getting you out on the trails. We got ourselves sorted out, and then met Natalia just as the sun went down 'to uncover everything that moves,' as she put it.

Flashlights in hand and covered with a thick layer of mosquito spray, we set out, literally, into the jungle. It was awesome.  Now, as I have written before, I am not exactly nature girl.  When I was in sixth grade, I went on a girl scout camping trip and ended up spending the second night in the minivan with my mom (also not a nature girl)  because I was over sleeping with spiders and whiny, complaining 11 year old girls (even though I was one of them. ahem.) But, these days, get me out in a place I've never been to before, and suddenly, I am all about finding spiders, bugs, beetles, ants that can paralyze you, and tree frogs.  Here are a few of the little buggers we found that night (and yes, that is a tarantula nest!)
 

Natalia informed us that it was mating season, and that this was a 'sensitive time' for the animals. As we trooped through the jungle, walking over deep chasms and trickling rivers on little wooden plank 'bridges,' we could hear sounds all around us.  About this time, my flashlight batteries began to fizzle. For real. In the distance, we could hear a deep, throaty roar.  We asked Natalia what she thought it was.  She paused until we heard it again, and then said 'A cat. Probably looking for a mate.'  Cat. As in jaguar?  Hmmm.

Just then, we ran into a colony of fire ants and had to skip over them as quickly as we could. Meanwhile, the deep, throaty roar sounded like it was getting a little closer to us.  Then, it was definitely getting closer to us.  My flashlight conked out for good right around this time, so I had to depend on Em and Katie to help light my way. Not exactly the position one wants to find themselves in as a 'cat' is roaring through the amazon at you.

 Suddenly, Natalia stopped and asked us to be quiet.  We stopped dead in our tracks.  I found it a little thrilling, though I sorely wished my flashlight hadn't croaked.  It was pretty damn dark out there. Poor Em was not into it at all, though, and I have never seen her eyes so big. I figured as long as Natalia didn't seem worried, we were probably ok.  We could hear the roar pretty close to us.  We stood stock still, watching Natalia for cues. She was not moving at all. The cat roared again, and then we heard it swish past us just about six feet away in the bushes, which snapped and parted as it swooshed by. Natalia paused for a moment, I guess to make sure it was gone,and then began to lead us out of the jungle back to the lodge, though not before we spied some monkeys up in the trees throwing things in our direction.  All in all, it was a pretty exciting first walk!

The next morning, we rose at 4:30AM and hiked 5km to a lake.  On the way, we spotted more bugs, lots of beautiful plants, some macaws feasting on tree tops, and more monkeys:

At the lake, we got into little canoes and were paddled around the lake by our guides in search of river otters, but sadly, didn't spot any.  We did see tons of different birds, some bats and some piranha action in the water, though, which was pretty cool. Then, we took a different trail back to the lodge, ate some lunch, and had the afternoon to do as we pleased.  I was zapped.  Between hiking 10k in total and the heat, I was plum exhausted and took the opportunity to nap after a nice, cold shower.

The agenda that evening included watching the sunset over the river:
and then going caiman hunting before dinner. This was a really great part of the trip-back out on the river in the little banana boats in near total darkness and an almost full moon.  Natalia stood at the helm of the boat with a giant flashlight (the only one on the boat), skimming the surface to spot caimans by the eerie red reflection their eyes give off when caught by light.  We saw several, moving along in the water, and this one on the shore:

We spent our last night in the Amazon, and in Peru, out on the deck of the lodge drinking pisco sours and quizzing one another with a very old set of trivial pursuit cards, enjoying being hot and looking forward to Argentina. It was probably one of the best nights of the trip.

Me vs. RA on the trip of lifetime scorecount: 7 and 0

Next up: Paradise = Iguazu Falls. Who doesn't love waterfalls, steak, pools and cocktails?

More reasons to be a tea drinker

I stumbled across this article the other day, and thought it was worth writing about, most notably because I have recently given up coffee (and caffeine, for the most part) and converted to tea in an attempt to improve my diet and my overall health. 

I made this decision in June after I had a small flare that I feel may have been triggered by drinking coffee. (I have no idea if this is really true, I admit I mostly just wanted to blame the flare on something, and coffee was an easy culprit.) So I woefully gave up my morning routine of stopping at this cute little place on W. 17th st. for a cappuccino AND my afternoon hit-me-up here (I think it has the best coffee in the city-seriously) and began drinking tea instead.  It is also, I should note, a much cheaper option, and I do feel better without all the caffeine coursing through my veins all the time. I think it helps even out my nervous system, which in turn, helps keep my RA in check.

Luckily, I do genuinely like tea.  When I lived in London and Prague, I drank it all the time, so it has been nice to reconnect to that tradition. And, it makes the fact that I've ended up collecting quite a few tea sets during my travels the last few years make a lot more sense.

The article doesn't mention anything specific about tea having anti-inflammatory effects or RA, but it does seem like time and time again, studies similar to this one come out hailing the many wonderful, and often not entirely understood, benefits of drinking tea- green tea, black tea, herbal tea, any kind of tea. I figure, if any of this is true, then it is bound to be good for RA in some roundabout way, especially since some of the benefits cited in this article relate to heart disease and cancer, two diseases folks with RA have a higher risk of developing (groan).

Has anybody else out there found tea helpful for their RA?  What about the coffee/caffeine factor? I'd be interested to hear what your experience has been.

My life as a comic strip

My first comic strip is up on RACentral.com!  For those of you who have been following my blog, it is an excerpt of Pleasure to meet you, now take off your top.  I think it's pretty funny - let me know what you think!

So now we are supposed to take worms?

Well, that isn't exactly what they are saying, but check out this article from the BBC on a possible new avenue of treatment for RA and other inflammatory diseases.  Read it and squirm!

(And I thought injectable gold was wacky....)

Worth the risk?

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?

14 days and counting

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.)