Monday, September 16, 2013

What It Feels Like…To Have Lupus and RA In The City

For some people, moving to New York City is the pinnacle, a true Cinderella story.  Not for me.  For me it has brought up a lot of issues that I didn’t really have to think about before.

In Michigan, I had a 10-block radius in which the majority of my life took place in.  Of course, I went beyond that, but it basically assured that even on bad days, I could get where I needed to go and get home, even if I was feeling pretty bad.

That’s not the case here.

I also have never had to deal with a commute before, let alone one that takes me so far away from home.

Some day I can tell my future children that I had to take a bus, subway, and train – over an hour commute – and then walk 25 minutes uphill to get to school.   

And let’s talk about anxiety.  When I first got sick and was diagnosed, my world felt totally crazy, so I began taking anxiety medication.  New York, by design, makes my anxiety worse.  It’s sensory overload times a thousand.

The subway is its own particular brand of anxiety-inducing.  Imagine what it feels like to be surrounded by darkness, in a metal contraption that is moving at high speed.  For me, I feel totally claustrophobic.  Not to mention the fact that the train tends to rock back and forth in such a way that you feel like you are on water rather than land.  Due to lupus, I have balance issues, which aren’t conducive when you have to stand up on a crowded subway.  Lupus also causes me to be very sensitive to smell – so I will smell something – and it will literally stop me in my tracks and make me nauseous.  Not a good thing when you are riding the subway in ninety degree weather. (I’ll let your imagination do the rest)   

And it’s just like who ever came up with the idea to stick giant tubes with wings in the sky?  It gets people where they need to go, to be sure, but it doesn’t have to make people feel good while it’s happening.

And the city is totally unforgiving.  It’s crowded and fast-paced.  If you can’t keep up, you don’t stand a chance.

When I get home at night, I get into the elevator, and I almost always collapse against the back wall.  I am exhausted to the max.  While other people might have energy saved up, my energy stores are beyond empty, and sometimes I wonder how I will be able to get up and function the next day.

In a city characterized by walking and public transportation, it doesn’t leave much room for those of us with health issues.  We are at the mercy of what is available to us.  The subways are full of stairs, and if you take them two at a time, you’re likely to be left in the dust.

I feel like I’m back in my first year of grad school in Michigan, when all I did was go to class, sleep, eat, and read.  That’s pretty much all I have energy for at the moment.   

And in the concrete jungle, my joints take a beating.  But right now it’s the mind-melting fatigue that I’m really trying to manage.

In general, for me, RA means mainly joint pain and fatigue.  Lupus brings with it nausea, dizziness, headaches, and rashes.  I sometimes wake up feeling like I’m hungover, like I’ve been hit by a truck, and flattened against the wall. 

Right now, we are living with my boyfriend’s dad until we find our own place, which means we have the luxury of a doorman and an elevator.  But my boyfriend tells me that every amenity adds to monthly rent, and that having an elevator can add up to $500 more to your rent a month.  I lived on the top floor of a three-floor walk-up in Michigan, and there were days where I would practically have to crawl up the stairs at the end of the day. 

I wasn’t made for this always-on-the-run, push-your-body-to-the-max lifestyle.  It isn’t me, and it’s not conducive to trying to manage multiple chronic illnesses.

In the city that never sleeps, all I want to do is crawl into bed.

Tuesday, September 10, 2013

Lupus And RA Have Brought Me Here

So I’ve been eagerly waiting to tell you all what I am doing in New York.

There were various reasons why I couldn’t really talk about it publicly, until now, but I’m so glad I can finally spill the beans.

The main reason I am in New York is because I was accepted into the Health Advocacy Master’s program at Sarah Lawrence College.  I know, I already have a Master’s and PhD in Sociology, but health advocacy has really become my passion over the last several years.

My experiences in higher education had two main consequences.  First, they helped me to realize that I do not want an academic job in sociology.  Second, they helped me to realize that there is a massive hole in the higher education system that does not work to the benefit/favor of chronically ill students, and this is a hole that I am determined to fill. 

I found out about the Sarah Lawrence program rather serendipitously.  A few years ago, I was asked to do a review of the book The Patient’s Checklist, by Elizabeth Bailey, for my blog.  Elizabeth was a student in the Sarah Lawrence program, and the forward of the book was written by Laura Weil, a professor in the program.  I never intended to do more schooling after my PhD, but in this case, it felt right.

The Health Advocacy program at Sarah Lawrence was the first in the country, and maintains a very high level of selectivity.  I can already tell that I am in the company of like-minded people, which is such a change from my previous graduate school experience, in which my health issues and the passions that came from them were silenced rather than celebrated.    

So I researched the program, realized that it was perfect for me, and applied.  I was accepted in February, and had orientation last week.  Classes start this week.  And I’m trying to get used to being back in classes, rather than teaching and working on my dissertation. 

I also will be working at The Partnership For Palliative Care as their Healthcare Social Media Intern.  It is really exciting to be using the skills I have gained as a chronic illness blogger in a new environment.

On the blogging front, I am excited to be joining the blogging team over at Creaky Joints under the auspices of The RA Academe.  I am also excited to have joined the blogging team at, a new and great site by Health Union

I’m getting used to life in New York City, of which my next post will discuss what it’s like to have RA and live the city life.  But for now, I’m so excited and grateful for all of the amazing opportunities that have come my way. 

The last time I saw my rheumatologist, right before I left Michigan, he told me that I seemed different, more confident and sure of myself.  I told him my future plans and how my illnesses have been a driving force of what I hope to do with my life.  He thanked me for my willingness to use my experiences to help others.  And it’s really the first time that I realized that we are on the same team.  We have the same goals.  And if it weren’t for these illnesses, I’m not sure what I would be doing right now, but it probably wouldn’t have been the right thing.

It’s always a bit strange and surreal to find the good out of the chronic illness experience.  But I can say for sure that if it weren’t for lupus and RA, I wouldn’t be where I am right now.

While I miss Michigan and my family and friends greatly, this is a really exciting time in my life.  I think I have finally found my niche in terms of the education and work opportunities that I am embarking on (city life not so much…yet…)!