It’s Personal And It’s Political

I’ve been absent from my blog for a while now.  It’s not that I don’t have anything to write about.  I do.  I had surgery in November that I haven’t even talked about.  There are other things that have happened, too.

It’s personal…and…it’s political. 

Personally, I’ve experienced some growing pains in writing for some of the other health sites that I used to write for.  I feel like Johnny in “Dirty Dancing.”  But instead of telling me I can’t do my kind of dancing, someone told me that I can’t write what I want to write.

I’ve been restless.  I’ve felt unfulfilled.  I’ve pulled back on a lot of my advocacy efforts.  Partly, it’s me.  But partly it’s by virtue of the things that I’ve been involved in.  I don’t think I’ve changed that much. 

I don’t mind edits, and criticism.  That’s not the problem.  But when I am told that I can’t write what I want, and then that because I’m not gaining enough readers to merit being a consistent contributor, I can write on a freelance basis, I have to walk away. 

I draw the line at my voice being changed, at the sentiment of the message not being my own. 

Worse than boring is being status quo, and is not standing up for what you believe in.  It means saying no even when that might mean turning down opportunities that you once would have taken without question.  It means remembering why I’m here, where I started and where I’m at now.  And reminding myself that it’s not a popularity contest.    

Because when it becomes more about the voice of the sponsor or the image of the company and less about the patient voice, that is a problem. 

In the end, I don’t represent a company or website, I represent myself.  And if I’m not representing myself and my fellow patients, then what the heck am I doing?

I haven’t worked as hard as I have to be a patient advocate in order to be a voice for the status quo.  I haven’t gained the following I have for writing anything less than the truth, be it ugly or upsetting or otherwise unpopular. 

And I think that this is a representation of the broader political climate, which is currently KILLING me.

I've seen so much infighting lately between chronically ill people that were formerly friends and I believe that’s exactly what this administration wants.  I have friends who post things like “those who have employer-based health insurance aren’t immune.”  It's a privilege that I can and do work, I know that.  But it’s not easy.  My job takes the majority of my time, energy, and attention, which has meant that this kind of advocacy has had to take a backseat.  I’m not complaining, I’m just explaining.

And to be clear, my health insurance status since I got sick has literally spanned the spectrum.  I’ve had amazing faculty-level student health insurance, mediocre student health insurance, insurance through the exchange, Medicaid from two different states (not at the same time obviously), and now employer-based health insurance.

I actually just found out that I’ll be getting new health insurance through my employer soon as a result of the current insurance company raising my company’s rates over 50% as a result of the uncertainty in the market that the current administration has caused.  My company has done a good job, so I’m told, of finding coverage that is comparable to what we currently have.  But the prospect of starting over again in this realm is overwhelming.  While I had the same health insurance for all six years of my PhD program, in the four years since then, I’ve had five, and soon to be six, different insurances.

For someone like me, who sees a doctor more than once a year, the prospect of a new insurance plan is anxiety-provoking.  So for anyone who is under the false impression that a job guarantees you health insurance, it’s rocky and tenuous, even under the best circumstances. 

I’m scared and I’m worried daily, if not hourly.  I’m worried that at some point sooner rather than later, I won’t be able to afford my medication or insurance.  I’m worried that I won’t be able to get the care that I need.  And I’m worried that friends of mine will lose their quality or life, or their lives altogether, because of the very real possibility of the concerns that I just mentioned.  And I’m frustrated that in this time of great uncertainty, I don’t have the time or energy to devote to the fight that is so, so needed right now.  

And in reality, I know I am healthier than many of the people I know that have my same illnesses.  But I too worry about the vicious cycle of not being able to afford my medication or appointments, thereby not allowing me to work, thereby not having insurance.  It’s an everlasting loop of suck, or worse, debility and death.   

So that’s why I haven’t been writing.  I’ve been pondering the past, present, and future.  I’ve thought of how best to express all of this, and I’m not sure I’ve captured it adequately here. 

But I’m here.  I’ve been here for nine years this month.  It’s hard to believe.  And I don’t plan on going anywhere.  So keep reading.  Be patient.  Don’t give up on me.  Because together, we have a lot of fighting to do (and not with each other – that has to stop now). 

We are patients.  We are important.  Our voices need to be heard.  And we need to stick together.  While I don’t think it has ever mattered who is sicker or who has a job and who doesn’t, I think it matters even less now.  Our commonalities have to be stronger than out differences.    

#Iwillnotbesilenced AND #Wewillnotbesilenced

Am I Enough?

Sometimes I feel down about myself.  In the past, a lot of it was related to being sick.  But as other things have happened in my life, there are other reasons why I feel down.

When you’re applying for jobs, which can be a demoralizing experience, it can really hurt your self-esteem, and the struggle has definitely hurt mine.  I try really hard to stay positive, but when it seems like a lot is going wrong in your life, it’s hard.

After spending two and a half years in New York, it sort of feels like a failure that I couldn’t make it work.  Even though I tried really hard.  Being back in Michigan is where I know I need to be.  For some people, New York is the center of the universe.  It’s the only place that some people can imagine being.  But it just wasn’t for me. 

It’s easy to listen to the negative comments and let those be the ones that keep coming up in our minds, even when there are positive ones, too.  I don’t know why it’s so easy to focus on the haters when it is often hard to listen to compliments and praise. 

This includes blogging.  I love getting positive comments about posts.  But sometimes the comments that stick out the most are the ones that tell me that I’m not doing something right. 

I’ve been struggling.  I’ve had a lot of change in my life over the last few months and years.  And while I am lucky enough to be surrounded by love and support, some of what resounds in my mind are the comments from those who aren’t coming from a place of love and support. 

And this hurts, even when I know that the comments have no merit and are completely untrue. 

And sometimes, when you rely on others to build you up, and they don’t, you’re only left with the negative.

But having gone through everything that I have, and being able to come out on the other side, I know that I am better and stronger than some people make me out to be. 

And I need to surround myself with the people that love and support me, and try and squelch the negative as much as I can. 

The thing that’s important to know about me is that I speak my truth and I own it, and I’m sorry if that truth is not acceptable to others.  But it’s mine, and I don’t shy away from it.  Sometimes the truth hurts.  And sometimes, the truth can set you free. 

So as I sit here grappling with my truth, I also grapple with the question of Am I Enough?

I’m beginning to realize that just because I wasn’t enough for one person, doesn’t mean I’m not enough for anyone. 

And if you’re grappling with whether or not you are enough because of the struggles you are coping with, you are.  You have to believe that.  You cannot let the negative win over the positive. 

I’m trying really hard to work on this myself. 

So the answer is:

Yes, I am enough.

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.  

The Gifts We Give Others And The Gifts We Give Ourselves

Well, I can’t believe that I’m writing this, but this is my 500^th post.  Incidentally, the 5^th anniversary of my blog came and went in April, and I kind of forgot.  That’s what happens when you are writing a dissertation and planning for the future, all at once.

I feel like I can say (and hopefully don’t jinx the fact that) things have finally started to fall into place for me.  I can’t disclose all of it right now, but I feel like I’ve found my niche, in life and in love.  I feel like I’ve found where I belong.   

I am slowing cutting ties in Michigan, which is harder than I thought it would be.  I will finish my volunteer position, which I have held for almost four years, next week.  As the next few months move forward, I will close out more and more of this chapter, as I am preparing for the next chapter. 

And it’s so strange.  I got sick here, and diagnosed here.  This blog began here.  I met my boyfriend here.

So many things have happened here.  I’ve been in this town for a total of 10 years.  A little more than a third of my life has been spent here.

And now I have to start over, make new memories somewhere else.

But I won’t be alone.

I’ve learned so much over the last several years, but mainly I have learned that there is life in spite of illness.  It can be very difficult at times, downright sucky, but it is possible.  I have had to accept my limitations, which isn’t always easy. 

And I’m learning to trust.  I had a lot of bad guy experiences following when I first got sick.  And it felt like it was me.  Like I wasn’t worthy, like I was damaged goods.  So I relied on people to build me up, who couldn’t possibly. 

But I have found that person.  And although I have to pinch myself some times to remind myself that it’s real, I can trust him.  And of course, I worry.  Of course there are moments when I’m sleeping 18 hours a day that I can’t imagine why he would hang around.  But I think were past that.  I think he’s here to say, and so am I.

So this is a reflection, but it’s also a celebration.  Somewhere along the way, I did something right.  I’m not sure what it was, because for a while it only seemed like bad things could happen to me.

My health is okay.  Not totally stable, but not careening through the universe at lightening speed, either.  I’m trying not to think too hard about the fact that when I move will come with it new insurance and new doctors. 

I don’t know who I’d be without illness.  That’s no longer an option.

Sometimes I don’t feel my age.  We’ll go out, have a drink or two, and I’m down for the rest of the weekend.  

But I also know myself better than I did before.

Sometimes I feel totally in control and sometimes I feel like I have no idea what’s going on.  Being sick has taught me that in many ways, we aren’t in control. 

It’s weird to think that illness may have been a gift.  It’s kind of a macabre thought.  But as I look back, I could see ending up insanely unhappy if I would have stayed directly on the path that I was on.  It took illness to make me see what was truly important, and what I am truly passionate about.

Now on the days when I can’t get out of bed, remind me that I said this.  But for right now, things are different than I expected them to be, and that’s not necessarily a bad thing. 

This is my story.  And this is only the beginning.

Just a note that my blogging may be less consistent over the next several months, as I finish my dissertation, defend it, move to another state, and begin the next chapter.  I hope I have loads of time to keep blogging, but if not, you know why, and know that it is only a temporary hiatus.

So please keep reading.

I owe so much to the community that has been created here.  So thank you, from the bottom of my heart.

This blog has been a gift for me.  You all have been gifts.  And I hope that I have helped or inspired or made you think or laugh or cry.