Sunday, May 7, 2017

I Lead A Good Life And I’m Not A Burning Down House (Or Shit People Say To People With Pre-Existing Conditions)

First, Senator Pat Toomey (R-Penn) compared people with pre-existing conditions to burning down houses, stating that it’s pointless to insure a house that’s already on fire, and so the same follows that people who are already sick aren’t worth insuring (1).

Then, Representative Mo Brooks (R- Al) said that healthy people are people “who lead good lives” and are those that have “done things the right way” (2).

And you’re probably thinking what the what.  Of all the stupid shit…

So if you’re a sicko like me, I guess that means you’re a burning down house of a bad person. 

The Government is trying to beat us at our own game.  They are trying to make us feel inadequate.  They are trying to reinvigorate feelings that you may have had when you were first diagnosed. 

I know that when I first got sick, I wondered if my life was going to be worth living.  And I wondered what I had done to deserve being sick.  I thought I had been living a life that would keep me from harm.  But I was wrong.  And for someone to suggest that any of us are to blame for our chronic illnesses is disgusting, shortsighted, ill-informed, and just plain wrong. 

What I have come to realize over the last nine years is that, yes, my life is worth living.  And no, there was nothing I did or didn’t do that caused me to get sick.  Other than living in this country, that is.  If you’ve seen previews for “An Inconvenient Sequel,” it makes me wonder if living in a country of privilege like America has caused the uptick in autoimmune diseases.  And all of the other money that our government is cutting is just going to make that worse.  But I digress. 

This is not the country my great grandparents fled to from violence and religious persecution.  This is not the country where I have had dreams of raising my future children.  The past, present, and future hinge on the decisions that our government will make about us and the worthiness of our lives and our place in the fabric of America because we are sick.    

We currently live in a country where those in power think they have the right to say stupid shit about people.  Why?  Because Senator Toomey and Representative Brooks know that most of us with chronic illnesses are out living far better lives than the ones they are.  Minus the money and influence, of course.  

Our government is building a wall, people, but it’s not between America and Mexico.  It’s between the healthy and the sick.  And maybe it’s a wall that has always existed.  I know that I have felt envious of my healthy counterparts since the day I got sick.  But the wall they’re creating is a bigger than that.  And it might ultimately mean a wall between the living and the dead.      

Dear Government,

One day, you’ll get sick.  And while it’s likely that your money will get you farther than my witty banter will get me, it won’t do everything.  One day, your money won’t get you anything but dead, just like we’ll all end up one day. 

So here’s a few tips, because having money and influence doesn’t make you a good person.  Neither does being involved in politics. 

-         Think before you speak.  Now there’s an idea. 

-         Words matter.  The things you say matter.

-         Stop using big words you don’t understand. 

-         Take a refresher course about how insurance actually works since you seem to be missing the point of it.

-         Stop throwing shade at the people who are paying for your unnecessary vacations while those very people struggle to pay for the medications and medical care that keep them alive.   

-         Power and influence don’t matter if you don’t use those powers for good.

-         Having empathy and compassion make you a good person.  Putting yourself in the shoes of someone whose personal experience is completely unlike your own and trying to understand their situation is a helpful life skill.  People will like you.  Your mother will be proud.

I am not in politics.  I don’t desire to be in politics.  But I desire to create change.  I want to make the world a better place.  And I think that’s more than can be said about a lot of the people that seem to be influencing our government right now.

I know the difference between right and wrong.  I know that what these politicians are saying is wrong.  I know that the potential consequences of their actions is wrong.  I know that providing access to quality healthcare for ALL is right.  And I know that leaving out the sickest among us is WRONG WRONG WRONG! 

Yes, I understand that I feel passionate about this because I am a “sick” person.  I am also passionate because this negatively impacts a lot of people I know and love.  But I’m also passionate because I was once a “healthy” person.  And when I became a “sick” person, I learned that the distinction between “healthy” and “sick” is a tenuous one.  We unknowingly teeter on the border between healthy and sick until we are no longer healthy any more.  Then we are sick.  And for some of us, we never become healthy again. 

But that doesn’t mean that we did something wrong or did something to deserve our illnesses.  And it doesn’t mean that we deserve to pay more money – money that we don’t have and can’t afford to pay – for healthcare because we are sick. 

The richest among us are proving that they don’t want to share the wealth or the health.  That they don’t play well with others.

Jimmy Kimmel is brave.  He’s using his powers for good and not evil.  And yet there are those who are pushing back, who are saying that they do not want to pay their money for his sick child (3).

But this is the way insurance is and has always been.  If you’re healthy, you pay for insurance so that if something happens, you won’t be bankrupt and destitute because of it.  And if you are sick, you have insurance so that your life doesn’t completely fall apart.   The reality is, we will all get sick someday.  And when we need it most, we will want insurance to be there so our lives won’t fall apart any more than they already have. 

My today could be some Republican’s tomorrow.  Or anyone’s tomorrow.  No one is immune, literally and figuratively. 

I’m lucky.  I know that I’m privileged in that I can stand on a soap box and don’t have to worry about losing my job.  Because my employer knows I’m sick.  They knew prior to day one.  And I’m lucky that I didn’t fear not getting my job because I am sick.  But I know that, that is a reality for many.

So I want to speak for those who are frustrated, angry, and disgusted but do not feel they can publically voice it.  I am mortally scared that employer-based health insurance will no longer be affordable and that I will lose coverage, and as a result of that and my multiple pre-existing conditions, I won’t be able to afford any insurance at all.  And that will render me without doctors and without treatment that will quite likely and relatively quickly leave me in pretty bad shape.  In unworkable and non-functioning condition.

Premiums for rheumatoid arthritis and other autoimmune diseases could rise to $26,580 per year (4).  That’s one of the highest premiums for any disease that isn’t cancer.  And that’s more than I make in SIX MONTHS PRE-TAX (so I don’t actually take home that much at the end of the day at six months).  So I would literally be working to pay for health insurance.  I wouldn’t be able to afford food or rent or my student loans.  And I probably wouldn’t be able to work at all because it’s unclear what spending all that money would get me, other than insurance, which would literally be a plastic card that I could wave around with my arthritis-ridden fingers. 

So thank you.  Thank you Senator Toomey and Representative Brooks.  Thank you for saying stupid shit about people with pre-existing conditions.  Thank you for giving us a reason to use our voices and fight for rights that we clearly don’t have but clearly deserve. 

(I could have posted this a week ago, but I was going to be traveling and didn’t want to risk the plane being shot down or ending up on the “do not fly” list)



(Photo credit @HugoOC and @TheLizArmy)


Tuesday, May 2, 2017

A Thank You Note To My Rheumatologist

At the end of February, I went to see my rheumatologist in Ann Arbor.  When I moved back from New York, it was an easy decision to start seeing him again.  I couldn’t see him right away since I had Medicaid, but once my insurance through work kicked in, I was able to start seeing him again this past August. 

I thought we were going to have a fight over the pneumonia shot.  That was the fight I was prepared for.  But I wasn’t expecting him to say what he did.  He’s leaving the state. 

Since I live about 45 minutes outside of Ann Arbor, it’s not super convenient anymore, especially since I currently don’t drive.  But aside from the rheumatologist I saw in New York, this is the only rheumatologist that I’ve had.  He’s the one who diagnosed me.  He’s the one who believed that my symptoms weren’t all in my head.  He’s the one who at our worst helped me become an empowered patient, and at our best, showed me that you can build a relationship with your healthcare provider.

It’s crazy to think that this month, I will have been diagnosed “officially” with lupus and RA for nine years.  At my appointment, when he kept saying we’ve known each other for the better part of a decade, I thought yeah right.  But it’s true.  And I know I have joked before, but this is the second longest relationship I’ve had with a man, and the first longest was with my dad.  So despite the ups and downs we’ve had, there’s something to be said for building lasting relationships with our health care providers.   


Dear Dr. R.,

I’ve been thinking a lot about the news you gave me at my last appointment.  Oddly, it wasn’t news that had to do with me or my health.  It had to do with you.  And it wasn’t news that I was expecting.  When you told me you were leaving, I think the air was sucked out of the room.  But I harbor no hard feelings.  You do what you have to do.  And it really touched me that you got emotional.  That meant a lot.  So now I’m doing something that I hope will mean something to you. 

Rarely do I write thank you notes to medical professionals.  It’s not because I don’t have gratitude or appreciation, because I do.  But rarely do they truly deserve it.  You do.

You are one of a few people who got me to where I am today.  It is with your help that I can say I got two master’s degrees and a PhD, while battling lupus and RA.  Well, let’s be honest, most of that was my dogged and pig-headed determination.  But if you hadn’t been willing to pursue treatments and understand my goals and what was important to me, I wouldn’t have been able to do any of it.  And we both know that all along the way, it certainly wasn’t easy.  But I hope you agree that it was worth it.

Like Max Kellerman says to Baby in “Dirty Dancing,” “If it weren’t for this man, I’d be standing here dead.”  I truly believe that if it weren’t for you, my quality of life would be significantly diminished.  Or maybe I wouldn’t have a life at all.

I truly don’t know where I’d be, but I cannot imagine the last nine years without you.    

I know we haven’t always agreed on everything, and maybe we weren’t even too fond of each other at first.  But you diagnosed me with lupus and rheumatoid arthritis.  You saw me through the worst of it.  And you’ve also seen me at the best place I’ve been, so I’m glad you’re leaving on a high note. 

I can only hope that I find another rheumatologist to spend the next decade with.

There’s more I want to say.  But it’s hard to find the words.  Because how do I adequately express what you’ve done for me?  I can’t.  I truly can’t.  So I’ll leave you with this.  Two words.  The most simple, yet profound words I can come up with.  Thank you.  Thank You.  THANK YOU. 

Please let me know if there’s someone I can forward this letter to, because I’d like others to know the profound impact you have had on my life.  I know you don’t do what you do for recognition.  And I know it must not be easy to see people day in and day out that you know you can maybe help but probably never cure. 

So please know that you make a difference.  You helped a scared 22 year old who thought her life was over.  Thank you isn’t enough, but thank you.     

With much gratitude,

Leslie Rott 


Now I embark on the path of trying to find a new rheumatologist. 

It’s not something I’m excited about, but I don’t have a choice.  I actually had been told about one prior to finding out my rheumatologist was leaving, but had made the decision to stay with him because of the history.

Now I just have to bite the bullet and make an appointment.