The Single Gal's Guide to Rheumatoid Arthritis

The trip of a lifetime: Part 2

Back in Cusco, Em and I picked up another friend, Katie, who had flown in from New York to join us for part of our trip. The three of us met seven years ago when we all lived in London, so we were excited to be together traveling again. I can't say we were so excited about the next form of travel we'd be taking though, which was a nine hour bus ride across Peru to the city of Puno.  Yep. Nine. Long. Hours. 

Actually, it wasn't too bad.  We stopped at four different sites along the way to visit churches and Inca ruins, and we also stopped in a little town for lunch. I have to admit that, though I was stuck on a bus and my hips were cranky, being able to watch the landscape of Peru change as it passed by the window was one of my favorite parts of the trip. (Good thing, huh.)  And, the chance to have a restful day after all that hiking was a welcome one.

Though we planned most of our trip ahead of time, this was the part of the trip that we were totally winging. We arrived in Puno, which is perched on the shore of Lake Titicaca. Puno is not really so picturesque; it's more of a bustling hub city abuzz with cars, people and bikes with carts mounted onto them (some carrying sheep) trying to make their way through the streets.

We were approached quickly by a woman offering to take us to a hotel.  We are pretty seasoned travelers, all things considered, so we weren't going to be taken for a ride, but the price she quoted was what we were planning to pay, and the hotel had a triple room all ready for us. So, off we went. I love how I would never in a million years do this in New York, but in Puno, it seemed perfectly sensible, and what do you know, turned out fine.  Our hotel was, in fact, really nice. We went out on the town that night and found us a good night club playing, what else, 80's music, so despite my sourpuss toe, I danced my heart out to Bonjovi, and I am not ashamed.

We had initially wanted to head over to Bolivia at some point, but we found out that they now charge US citizens $135 for a visa.  I can't really blame them, but given we would only have been there for two days, there was no way we were going to fork over that much money.  Instead, we decided to stay on the Peruvian side of the Lake and visit the Floating Islands of Uros our first day, and then head out to Amantani Island for a homestay on our second.

I highly recommend doing the solo tour of the Floating Islands.  (We also stopped there on our way to Amantani, but the experience is much better when you are only heading to Uros for the day.)  We didn't want to go through a tourist agency since many of them are a little sketchy and keep most of the money for themselves, rather than it going to benefit the people who actually live on the islands and depend on tourism for much of their economy.  So that meant that we had to go it alone, which turned out to be very easy, if you are willing to just go for it.  We simply walked down to the dock, found a boat that said 'Uros,' paid a guy some money to get on it, and left.

If you want to read more about the islands themselves, go here. We motored out about 30 minutes or so from Puno, and suddenly, an entire city aloft on the water greeted us. 

It was like nothing I had ever seen before.  We toured two of the islands and enjoyed lunch on the second one: After a boat ride on one of their reed boats, we got back on the motorboat and headed to Puno for another night.

The next morning, we headed back to the docks, found the boat that said 'Amantani,' paid a guy, and got on board. (Sound familiar?)  This excursion took us out three hours onto the Lake (did I mention it is a HUGE lake?) to the small island of Amantani.  We had no idea how the homestay was going to work exactly, but we soon found out.  During the trip, they passed around a legal pad with instructions to put down your name and how many people were in your party.  When we approached Amantani, you could see a line of small, brightly clad women forming at the dock.  As we got off the boat, we were doled out to the next woman in line, who turned out to be Innocensia, who turned out to be one awesome, fierce lady. The three of us followed her to a little house up a ways (we were all handily out of breath by the time we reached it given the altitude) and got settled.  She and her daughter, Marena, fixed us an amazing lunch of homemade quinoa and vegetable soup and a cold salad of beans, vegetables and boiled potatoes. After lunch, we unwittingly ended up on the hike from hell #2, but it was worth it because, though our lungs were practically bleeding and our bodies hurt (did I mention I have RA??) we got to see this:
and this:

That night, we hung out in the town square for a celebration of the island that is held each August (good timing), then went back with Innocensia and Marena for another homecooked soup and an omelette.  Since there was no electricity, we bundled up for the night by candlelight and then fell fast asleep.

We woke up with the roosters and had time for a quick breakfast (yummy crepes with homemade jam) before Innocensia escorted us back to the dock to catch the boat.  From there, we crossed over to the island of Taquile, where, in order to reach anything on the island, we had to first climb up a flight of f****** evil steps to the very top of the island.  It took an hour, and I was as close to hating life as I could be in such a beautiful place. Hiking straight up a mountain in high altitude must be like running a marathon while sipping air through a tiny straw. HELL. But we were rewarded with another great view at the top (oh, the things I will apparently do in the name of good view):
We also encountered a huge bull rambling down the little windy path and got out of his way. We wandered around the island and ate some lunch before it was time to go back to the boat for another three hours on the lake returning to Puno.  I felt weary, but honestly, pretty damn good all things considered.  We headed back to Cusco (via another nine hour bus ride, choke choke) the following day, and spent one last night in Cusco.

Me vs RA on the trip of a lifetime scorecount: 4 and 0

Next up: the Amazon!!!! Tarantulas, piranhas and insane macaws.

I'm a comic strip!

When I started this blog a few months ago, I had no idea what it might lead to, but I certainly didn't imagine it would lead to me becoming a comic strip. Nonetheless, that is exactly what has happened! Beginning this month, I'll be writing for MyRACentral.com, which is part of the HealthCentral Network, and some of my posts will be featured as a comic strip called Single in the City, as drawn by cartoonist Jane Samborski.

You can check out my first post here and get a preview of what I look like as a cartoon! And, if you haven't ever checked out MyRACentral.com, there is a pretty great community over there, and the site is full of information, tips and people sharing their own stories and asking questions. It's pretty cool.

The neurologist and the invisible disease

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.

The Within Our Reach Campaign

I thought I'd share this link that was sent to me by my google alert today.   The American College of Rheumatology Research and Education Foundation (that's a mouthful) is busy on a campaign to find a cure for rheumatoid arthritis.  I'm all for it, especially after news like yesterdays.

Wouldn't it be amazing?

Simple times

So my new virtual celebrity boyfriend, Joshua Radin, has a new album coming out on itunes tomorrow called Simple Times.  (The album itself won't be in stores until the end of the month.) Needless to say, I'm very proud and telling everyone I know (and those I don't) to go get it. Really.  Granted, I may be a little biased, but I think he's really talented, and his music is great. I've heard him play live, and the man knows what he's doing.  I've heard a few songs already and can't wait!

To shoot up, or not shoot up.

News like this just plain freaks me out and reminds me that I am still largely a guinea pig for medical science.

When a friend emailed me after reading this to see if I was on any of them, it brought up a dilemma that I think many people with RA and other autoimmune diseases struggle with all the time - at least I do: which is worse, the disease or the meds? I think it is increasingly worrying when you are young and know you have decades (potentially) ahead of you on these meds, or others like them.

It's a bit of a 'possibly damned if you do, definitely damned if you don't' situation.  Back in November and December, I was on a fast track to not being able to walk without assistance, among other things, and in so much pain and so f****** tired that the choice to go on enbrel didn't even feel like a choice. It felt like a necessity.  I knew that there were risks associated with it, including a higher risk to infections, more serious infections and, according to some, a higher risk of lymphoma since the meds work by suppressing my immune system.  I've reacted pretty well to the meds, luckily, without troubling infections (knock on wood!!).  Although it's always lingering in the back of my mind that no one out there really knows the long term impact of these drugs, I mostly don't think about it because I'm so beyond grateful for what I've gotten back since being on them.

News like this drives home the fact that there really is a lot of unknown territory.  So what is a gal to do? I guess not much, other than to be as vigilant as I can be about my health.  I'm not willing to forsake the drugs that are keeping me mobile and a part of my life, at least not until something scarier comes out about them (let's hope not!!!).

It's one hell of a choice, though.

An auspicious date

September 4, 1919:
My grandfather, George S. Wood, was born.

September 4, 2001:
I move to London, embarking on my post-college life and all it would lead to.

September 4, 2007:
My grandmother, Sara Crawford Towe Wood, passed away.

I woke up with throbbing pain, completely unable to move my left wrist for no discernible reason, and it dawned on me that something might be seriously wrong with my body.

Comic relief for the chronically ill:

Seriously people, go here! They are hilarious.  I am buying one (or two) right now even though I'm at work, and think I know what some of my friends and family are going to be getting for the holidays. . .

An update on dating

 

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.

The trip of a lifetime: Part 1

Despite my travel-day jitters, all my flights went just fine, so I landed in Lima, Peru and met up with my friend Emily at the airport just as planned. We only spent about six hours total in Lima, most of them either asleep or filled with giddiness, so I have only this picture of Lima as proof we were there, which I took on the way back to the airport the following morning.  We boarded another flight and headed to Cusco, where we stayed for two days getting acclimated to the high altitude (thanks, in part to the magical coca de mate tea).  We also, as I wrote before, naively embarked on hike from hell #1 (pictured below), where I claimed my first victory of the trip against RA.

Then, it was off to Aguas Calientes and Machu Picchu. We had decided not to hike the Inca trail when we originally planned the trip and instead took the train. (I may be fierce, but I'm not masochistic). Only thing was, in order to get the train, we had to first hire a taxi to take us to another town, Ollantaytambo, which was about an hour and a half away, where we would then board the train to Aguas Calientes. (In New York, you could never just hire a taxi off the street to take you to a city an hour and a half away, but in Cusco, this is apparently no big thing. Good to know).

Once we finally arrived in Aguas Calientes, we marched ourselves up to the hot baths directly and enjoyed some cocktails while gazing up at the beautiful mountains all around us. The next morning, we got up at the crack of dawn to head up to Machu Picchu only to discover that it was pouring down rain.  As in cats and dogs rain. Hmmmm.

Now, the city-gal in me may not always dress appropriately in bad weather, but intrepid-traveler me had come prepared. I slithered (ok, stretched, pulled and strategically maneuvered) into my lovely spandex long underwear (I will spare you the actual picture), waterproof/sunproof hiking pants, waterproof parka (with hood) and waterproof hiking shoes, wolfed down some breakfast, and then Em and I joined a couple of hundred other crazy intrepid-travelers already gathered to catch the first few buses up to Machu Picchu. It was 5am.

*Note to those who want to see the sunrise at Machu Picchu: We had intended to get up there in time to see the sunrise and have our magical moment, but unless you manage to get on the very first bus, which means getting in line at about 4.30am, or maybe even earlier, you won't get on the first bus, which means you won't make it up in time.  Don't worry-the place has so much magic oozing out of it that you are pretty much guaranteed a moment of true awe, sunrise or not. 

By the time we waited in line and got onto a bus, it was approaching 6am and the sun was just beginning to come up. I have to say there was something pretty incredible about starting at the bottom of the mountain in near total darkness, unable to see anything around you, and then having everything around slowly revealed as we traveled up the winding road to the very top. Talk about enlightenment.

It was breathtaking. There was fog everywhere, the kind that moves quickly and completely covers you, only to be shed moments later, uncovering one of the most magnificent sights I've ever seen.  The weather may have made things a little uncomfortable, but seeing Machu Picchu shrouded in that mystical fog created a sense of amazement and mystery.  I was spellbound.

We spent the morning taking a guided tour of the old Inca site, which I would highly recommend so that you actually know what you are looking at. The tour took about two and a half hours all in all, and was well worth it.  By the time it finished, the sun had risen higher and burned off most of the fog. Em and I decided not to tempt fate and hike Wayna Picchu, the big mountain that stands behind Machu Picchu.  Given all the fog and mud, it seemed a pretty formidable hike to begin with, and after hearing from our guide that people have literally died on it, it didn't feel like something we needed to do to have a complete Machu Picchu experience. Instead, we climbed up higher to some of the terraces that overlook the main site, then hiked a good hour around the back of a mountain to see an Inca Bridge.

After all of this, we were pretty knackered, so we sat down on one of the terraces and tried to soak it all in. Nothing as big and tremendous as Machu Picchu can ever really be captured by a lens. Part of the beauty and amazement came from seeing this magical place tucked away and surrounded by snow-covered mountain peaks as far as the eye could see, and that can never be fit into a photograph. Nonetheless, I tried:

We spent a good six or so hours at Machu Picchu before taking the winding bus-o-death back down the mountain (zero guard rails, but plenty of confrontations with other buses on a road the width of my studio apartment in Manhattan. 'nough said.) to Aguas Calientes.  We had a leisurely lunch before packing up and taking the train/taxi back to Cusco, where the next part of our trip was about to begin.

Next up: 9 hour bus rides, Lake Titicaca, floating islands made of reeds, and Innocensia and the hike from hell #2 (and number 3).

PS: Wondering where the RA is in this post? That would be NOWHERE, because it wasn't really a factor at all while I was at Machu Picchu!  Other than a few toe tantrums (which are normal) and me being cautious about my energy levels, it didn't play a part, and it certainly didn't stop me from doing anything that day that I wanted to do.

Me vs RA on the trip of a lifetime score count: 2 and 0