New City, New Care = So Far, So Good

Well, establishing care in New York hasn’t been as easy as I’d hoped, but the care that I have received so far, other than at the student health center, has been pretty good.

I have student health insurance, so I have to get referrals from the student health center.  I went there, and was honestly less than impressed, but have basically set up a relationship so there is someone I  can e-mail there when I need a referral.  This means I do not need to make the trip to the student health center every time I need a referral, and I think this relationship works well for all parties involved.  I don’t think they really want to deal with my complicated situation, and I’m not sure I really have a lot of faith in trusting them to deal with my complications.  (And I don’t think this is necessarily unique to this one student health center, certainly my prior experience suggests otherwise)  So now that, that’s out there…

I got a recommendation for a primary care doctor, but when I tried to get an appointment with her, I was told she was no longer accepting new patients.  Strike one.  When I called to get an appointment with the rheumatologist I wanted, I wasn’t able to get an appointment until the beginning of December.  Strike two.      

But that was a function of me not having my new insurance information until the beginning of September – and the student health center being unwillingly to help me set up care over the summer – because I think I’d be crazy if I tried to suggest that there is a shortage of doctors in New York City.

Anyway, I was able to pick a different primary care doctor, who I was able to see a few weeks ago, and she gave me a recommendation for another rheumatologist, who I will be seeing at the beginning of November.

So far, I’ve noticed some major differences from the care that I had previously that I am pretty impressed with:

They actually – both doctors and support staff – know how to use their electronic medical records (EMR) system.  My previous care team, a year into using the system, still had no clue what they were doing, and this caused a lot of extra work for me.  But my new care, not only do they push the system on patients, but they actually utilize it, and do it well!  And it’s funny because they actually use the same system that my previous doctors use.

In New York, while I was able to transfer my prescriptions, I was told that they only allow one refill with the transfer, so I would need to get new prescriptions.  My doctor submitted all of them directly to my new pharmacy so they will be there when I need refills. 

Another major difference was that my blood was drawn in the exam room, rather than being sent to a lab somewhere else, either onsite or offsite.  That’s a nice change! 

I also didn’t feel like a sick person.  Maybe that’s a weird thing to say, but I didn’t.  Maybe part of it was the fact that I didn’t have to go sit in the waiting room of a lab where I was the youngest person, and everyone looked at me with pity.    

Every time I call to get an appointment, as soon as I give them my information, they say How can we help you today, Miss Rott?  I don’t feel like I ever got that kind of respect from my previous medical care team.  In fact, the support staff were usually pretty disrespectful, if not downright mean. 

And so I have to wonder, what’s the difference?

As my boyfriend pointed out to me, there are several major hospitals in the area, and because they are competing for patients, the quality of care and treatment that patients receive is better than it might be elsewhere.  For example, where we lived previously, there was really only one game in town as far as a major teaching hospital was concerned, and so, knowing this, I think they skimped a bit sometimes.  Or maybe they just didn’t care because they knew they were the only game in town. 

It’s not necessarily that I didn’t receive good care, but the extra touches weren’t there.  And I guess I didn’t really know they weren’t there until I now have care where they actually exist. 

Sometimes change is a good thing!  And sometimes a little competition is healthy!  

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.

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 rheumatoidarthritis.net, 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…)!  

Moving With And Packing Up Lupus and RA: New Beginnings And Bittersweet Endings, Baby Steps And Quantum Leaps

In preparation to move from Michigan to New York, I had to get rid of something I’ve been holding onto for the last five and a half years – all of the prescription bottles since I got sick. 

 They became, to me, what felt like the only tangible mark of illness. 

Just by looking at me, you probably wouldn’t know that I’m sick.  Aside from the litany of doctors’ appointments and tests and procedures, the only thing amiss is the fact that I take a bunch of pills. 

My therapist told me that someday, when I had the validation I needed, I would get rid of them.  And I guess, in a way, he was right.  I have a man in my life who has embraced me despite my illnesses.  And I am at a place in my life in which my life and my illnesses no longer seem completely like opposing parties.  I am more comfortable with who I am in spite of my illnesses. 

It was definitely hard to part with all of those bottles.  It felt like a part of me was going away.  But it simply did not seem realistic to take them with me.   And in reality, they were more of a crutch than anything else. 

In some ways, getting rid of those bottles feels a bit like leaving me with nothing to show for the last five and a half years of illness.   

 And it’s weird.  I sort of feel that way about the last six years that I spent in a PhD program.  All I have is a piece of paper.

And I got this key chain and card case.  I guess this is kind of my gold Rolex. 

But the reality is, I have so much to show for the last six years.  Maybe they aren’t tangible things, but I have learned so much, matured a lot, and learned what the important things in life really are.

And those things are just a key chain and card case, and they aren’t a ridiculous amount of empty prescription bottles.  There will certainly be more of those in the years to come, and I can certainly amass the collection again if I so desire.

On the other hand, it is in some ways liberating to be without them.  They were a big part of my life, but they weren’t the only thing.  So it was a baby step to part with all of those prescription bottles, but it was a quantum leap to move to New York City. 

 I have so much more to talk about – my move, what it’s like to live in New York City, and why I’m here and the wonderful, new adventure I am embarking upon.  So this is a quick update for now, but I’ll be back soon.  

Patients For A Moment: Social Media Edition

For the July/August 2013 edition of Patients For A Moment, I asked bloggers to talk about the influence of social media on their illness experience.  They could either write one statement in no more than 140 characters and explain it, write a post that had many statements in no more than 140 characters each, or answer the question, “How has social media impacted your illness experience?”  Any and all iterations of this were fair game, and there were some great responses:

                                                                                                                  

The always entertaining Duncan Cross came up with a very creative “twitmeter” in relation to his IBD, and also discusses the importance of social media, in the post, “PFAM: Social Media”.  Duncan, I like how you think!

Sarah Bramblette, of Born2lbFat, in the post, “Healthcare and Social Media – Empowering Patients”, traces her social media evolution, and combines social media into her post.  Thanks, Sarah, I really enjoyed reading this!   

At My Brain Lesion and Me, Rhiann Johns talks about the positive experience she has had with social media and its ability to connect people even when in the throws of illness, in the post, “Social Media and the Chronic Illness experience”.  Thanks, Rhiann, for sharing!

Ms. Rants, of the blog, Chronic Rants, writes in the post, “Finding health solutions outside the doctor’s office”, about how social media has provided the answers to some questions that doctors have not been able to answer for her. Thanks for your post, Ms. Rants!

                                                                                                                                                              

Thanks to all who submitted posts for this edition!

If you didn’t submit a post but have a related one, please feel free to link it in the comments – only related posts, though, please.

The next editions of PFAM will be September 15, 2013.

I am in need of hosts for the September, November, and December editions.  Please e-mail gettingclosertomyself@gmail.com, if you are interested in hosting.  Or you can throw in your hat for the 2014 editions, as well. 

You Can Call Me Doctor Rott

Well, not that kind of doctor…

But on Friday, I defended my dissertation, so I am now a Doctor of Philosophy in Sociology. 

It’s hard to believe that I am basically finished with my graduate program.  It has been a long and difficult six years, punctuated by being diagnosed and living with multiple chronic illnesses.

It meant so much to me to have my family at my defense (literally and figuratively) – my parents, sister, aunt, and grandparents, my boyfriend, and several good friends, one of whom flew all the way from Seattle to be there for me.   

And it made me realize that while getting a PhD is a huge accomplishment, what actually means more are the people that I am surrounded by, who have helped and supported me along the way. 

Because I couldn’t have done this alone.  It certainly wasn’t easy. 

Even the defense was difficult.  My committee peppered me for over an hour with really hard questions.  But in the end, the revisions I have to make are minimal, and I feel that I stayed true to myself and the kind of dissertation (hopefully one day book!) that I set out to write.

It really is a surreal feeling to be done.  I am still trying to wrap my head around the idea.  When I woke up Saturday morning, it was a huge sigh of relief to realize that it’s over.  And to know that I never have to face the firing squad ever again – amazing! 

It also feels good to finally be in a place where, as both as a person and a scholar, I can be myself.  So much of the past six years was spent making other people feel okay about my situation.

I’ve talked about it a lot before, but when you are in a strenuous graduate program, the assumption is that all of your time and energy will be spent concentrating on school.  And if you’re not doing that, for whatever reason, you might as well not be here.  As I have discovered over the years, this is not specific to my discipline.  This is the nature of the graduate school beast regardless of subject area, specifically if you are in a PhD program. 

But aside from that, it really has been a crazy ride.  And I made it. 

There were definitely times when I wanted to quit.  Where I felt like it would be easier if I just threw in the towel.  But that’s not my nature, and the more people told me that I should leave, the more I wanted to stay.  And not only stay, but finish. 

 
And despite everything, I am one of only a few people in my cohort who have finished so far.  It took me six years, and considering everything I had to deal with, it’s pretty amazing not only to finish, but to finish “on schedule”.    

Without listing the acknowledgements from my dissertation (which is three pages long!), I have to say again that there are many people I couldn’t have done this without.  And I am so grateful to each and every one of them.

And I am grateful to all of the readers of this blog who have supported and encouraged in ways that many of the healthy people in my life could not.  They say it takes a village, and it totally does.  While the researching and the writing of the dissertation was all me, seeing this program through to the end was an amalgamation of all of the supportive people in my life. 

Even if I can’t write prescriptions, it is pretty cool to be a doctor.  I might just let that go to my head a little bit.     

Now on to the next adventure…