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…

Interview With Author Suzie Edward May: “Arthritis, Pregnancy, and the Path to Parenthood”

I recently read “Arthritis, Pregnancy, and the Path to Parenthood” by Suzie Edward May.  Suzie is a mother of two from Australia who has rheumatoid arthritis.

I had been eyeing this book for a long time, but wasn’t sure I wanted to order it all the way from Australia.  However, it is really the only book of its kind out there, and I would say it is a must for any woman who has RA and is hoping to some day have children.

I talked a bit about my personal experience with this in the previous post, “Arthritis, Pregnancy, and the Path to Parenthood”.

But I’ve invited Suzie here today to tell you a little bit about herself and her book. 

I love the cover of your book.  You look so happy, despite the trials and tribulations that can come with getting and being pregnant (and a mother) while dealing with RA.

First off, can you tell my readers a little bit about yourself?

SEM:  I am a 38 year old mother, wife, author and lawyer.  I live in Perth, Western Australia and I have lived with chronic inflammatory RA for 12 years.  I am an active health consumer with ‘Arthritis and Osteoporosis Western Australia’ and ‘Arthritis Australia’.

Why did you decide to write a book specifically about pregnancy?

SEM:  When my husband and I decided to start a family I looked for guidance as to how to do it.  I knew I had to come off my medication but it was very frightening to contemplate.  When I found no information as to how to achieve this, I decided to write a book to fill this gap.  I knew there must be other women around the world who had been through this process before me, so I worked hard to find them, speak with them and share their stories (and my own) through this book.

How much did you know about RA and pregnancy prior to becoming pregnant?

SEM:  Being my first pregnancy, I only knew what I had read in ordinary pregnancy books.  I hadn’t read anything about arthritis and pregnancy as such, as there was no information available about it.  I had lived with RA for 5 years so I had some experience with it, but my real understanding and test of my body came during pregnancy.

Despite the issues that come with RA and pregnancy, did you always know you wanted to have children?

SEM:  Absolutely.  I was always going to be a mother.  I never contemplated not being a mother.  I was certainly never going to let RA (or anything else) stop me from becoming one. 

One of the biggest components of becoming pregnant with RA is getting off of meds.  Can you describe some of the challenges that come with this?

SEM:  The challenges are twofold.  They are physical and psychological.  While I expected the physical pain and fatigue (although perhaps not to the extent that I experienced it), the emotional turmoil was very unexpected and difficult to deal with.  After getting used to taking medication in order to function, I now had to trust my body and stop taking these medications, it was frightening. 

I totally get that.  It seems completely antithetical to go off of meds.  What are some of the other challenges that come with getting pregnant with RA?

SEM:  Some women fall pregnant easily while others take longer.  Some women find that the more active their disease, the harder it is to fall pregnant.  Some women need IVF treatment (even just to ensure they fall pregnant quickly rather than waiting months and months while off medication); while some women find it difficult to fall pregnant at all.  It is different for everyone.  There is little information about fertility and RA.  Women need to speak with their Rheumatologist about their particular situation.

What are some of the positive aspects that come with getting pregnant with arthritis?

SEM:  For me, I felt confident that my body could do something right for a change.  When we feel like our bodies fail us (with our pain and disability), it can be a wonderful feeling to see our body doing something correctly.

Trusting your body when you have RA can be a very difficult thing.  How important is, not just your rheumatologist, but your entire medical team, in getting and staying pregnant with arthritis?  And at what point in the process do you bring them in (i.e. how helpful was your rheumatologist in talking to you about pregnancy before you became pregnant?).

SEM: Your medical team is always crucial in the management of your RA.  During pregnancy, this is particularly so and you will likely be seeing more specialists such as an Obstetrician and/or a Gynecologist.  I think it is important that your Rheumatologist (and any other specialist you usually see) knows that you want to become pregnant so they can help you through this process.  They continue to play an important role during and post pregnancy, especially if you don’t go into remission and/or have a post-birth flare.

Some women go into remission during pregnancy.  Others flare badly.  Some women flare badly after giving birth.  What advice would you give to women to be prepared for these varying possibilities?

SEM:  Be prepared!  You may be lucky enough to go into remission, you may not – you may have a post-birth flare, you may not – you won’t know until you are there.  So, the best thing to do is put strategies into place so you (and your family) are supported during these potentially challenging times. 

How much time did you have in between pregnancies?  How long were you on meds before you had to go off of them again?

SEM:  After giving birth to our first child, it took 26 months to become pregnant with our second child.  This was due to a number of factors such as my choice to breastfeed (nurse); the time I took to detox off medications before attempting conception and the time it took to conceive the second time.  I only returned to medication for four months between pregnancies. 

Your book addresses pregnancy, but not infertility. Can you speak to this decision?

SEM:  I did not find enough evidence linking infertility and RA to warrant including it in the book.  It is a very interesting issue and I hope more research is developed in this area.

Some of my friends have started to have babies.  While I can’t specifically speak to their experiences, it seems easy.  What do you say to women with RA who want to have children, but know they will have a very different path than their healthy friends?

SEM:  The fact that we live with RA (or any other form of arthritis or chronic health issue) means that we are living a different path from our “healthy” friends already.  I also believe it makes us stronger as we overcome challenges everyday.  I don’t believe parenthood is easy for any mother or father – I think it is the hardest role in the world – even if you are “healthy”.  But it is also the most rewarding, incredible and worthwhile role you could do.  If you are fortunate enough to have a child, the love and joy you feel for your child outweighs even the worst arthritis pain.  I have no regrets and if I had my time over, I would do it again.  My children are my world and while everyday brings challenges, they are worth it.

Would you recommend that partners read this book? I think it would be helpful to give my boyfriend a window into what our future might look like, but I’m also a little worried that it will scare him.

SEM: I think it is imperative that partners, family members, your friends and even colleagues and health care professionals read this book.  The more you can help people close to you understand what you live with and what challenges you may be facing in the future, the better equipped others are to support you.  The fact that our partners are with us, despite our RA, means that they love us.  Preparing your partner for what lies ahead is so important.  The more you educate others, the less alone you will feel.

That’s really good advice.  What have you learned from your experiences?

SEM:  I have learnt that we are not alone.  That there are issues affecting women (and men) with arthritis that people are not talking about enough – like pregnancy and parenting.  I have learnt that women with RA are strong and that they can achieve anything they put their mind to.  I have learnt that information is power and that the more you understand, the less fear and isolation you feel. 

What do you hope readers will get from your book?

SEM:  Accurate, honest stories of women who have been through the process of having a family while managing chronic arthritis.  An honest outline of the potential challenges you may face from pre-conception through to when your baby is 12 months of age.  But most of all…hope, inspiration and a sense that you (and your RA) are understood and that you are not alone.

What’s next for you?

SEM:  I have a couple of other projects in the pipeline that will be complementary to ‘Arthritis, pregnancy and the path to parenthood’.  I look forward to telling you all about them soon. 

Thank you so much for your interest in and support for my book.  I wrote this book for you and your readers, so it is wonderful to connect with you all.  Feel free to email me with questions or just for a chat at suzie@suzieedwardmay.com.

Thanks so much for talking to me!

Thanks, Suzie for sharing your story!  And thanks for stopping by Getting Closer to Myself today.  And thank you for your e-mail to me when I ordered the book, before we talked about you doing an interview for my blog – and the personal note that you sent to me along with the book.

I purchased this book directly from the author, and you can, too!  Visit http://www.suzieedwardmay.com/.