Friday, August 11, 2017

Dear Dad, It Has Been Three Years...

Dear Dad,

I can’t believe that it has been three years since you’ve been gone.  It’s so hard to imagine that time has gone by without you.  And yet, it has.  I remember, in the beginning, feeling like I would never be able to breathe again, feeling like I would never be able to put one foot in front of the other again. 

I can still remember going out to celebrate my birthday, unaware and carefree.  I remember getting home, seeing pictures of the flood on Facebook, and texting mom to make sure everything was okay.  I will never forget her telling me that she didn’t know where you were.  I’ll never forget the text Molly sent me at 6:00 a.m. the next day, telling me that you never made it home.  I remember calling the Michigan State Police from New York and telling them that they had to look for you, that someone needed to look for you.  And they assured me they would.  They didn’t.  No one did.  Only your family did.  And in the end, the stranger you talked to that night found you the next day. 

And I remember the call that came at 9:00 p.m. on August 12, 2014, from mom, telling me that you had passed away.  I remember crying uncontrollably, and repeating over and over again that I didn’t understand.  In all honesty, I still don’t understand.  I don’t understand how something like this could have happened to you.  I don’t understand how something like this could have happened to us. 

And I remember booking a flight.  I remember showering at 1:00 a.m.  But I don’t remember packing a bag.  I don’t remember the taxi ride to the airport.  I don’t remember waiting for the flight.  I don’t even remember the plane ride.

I do remember getting to Michigan and hugging Molly the tightest and hardest I ever have.  I remember her friend trying to coax her to eat a bite of a bagel.  And I remember thinking that I never realized that 20 year olds could display such compassion and selflessness. 

I remember seeing you in your casket.  It’s an image that will never be erased from my mind.  I remember thinking that you looked like you but not.  I don’t remember how I held it together, but I think I barely did.  I couldn’t breathe, I couldn’t think.  The heart takes much longer to process what the mind already knows.    

And I remember that I was shocked at how many people came to your funeral.  Not because I didn’t know that you were loved, but because I didn’t know how much and by how many people.  And it showed how many lives you had touched in your own way. 

I remember bits and pieces of the service.  Someone told us that they saw a goldfish cracker lying under a pew at the funeral home.  YOU.  I remember a moth flying around the limo on the way to the cemetery.  You were there.  And, in my greatest time of need since you died, you were there.  I know you were, you had to be.  And I have to think that going forward, you will be there even though you won’t physically be there.  In the moments that I need you.  In the moments when I want you to be there. 

It’s so unfair all of the things that you’ll miss in the future, and all of the things you’ve already missed in the last three years.      

In three years, so many things have changed…

I graduated from Sarah Lawrence, my then boyfriend and I broke up, I moved back to Michigan, I got a job, I got a new boyfriend, I got an apartment, Bubbie passed away, Molly got into PA school, and Molly graduated from Wayne State. 

This is not just a list.  There has been sadness and happiness.  And it has taught me that I can still feel, whether good or bad. 

And in three years, so many things remain the same…

I am angry.  And I don’t want to be.  But the efforts I put forth to make your death matter have failed.  And I’ve seen first-hand other families go through what we went through.  Except, in a way, we were lucky.  We were lucky that our ordeal “only” lasted 24 hours.  We were lucky that you were found, even though we will never know what happened to you. 

We weren’t lucky that you died, but we were very, very lucky that we had you in our lives for the time that we did.     

I love you, Dad, always and forever,


Tuesday, August 1, 2017

Book Review: “It’s Not Yet Dark”*

“I was once invisible.  I moved among you, invisible in my disguise. Now I am difference made manifest” (p. 2).

It’s not often that you start a book and finish it the same weekend.  It’s also not often that you find a book that makes you laugh, cry, think, question, and wonder, all at the same time. 

Once I started reading “It’s Not Yet Dark,” I couldn’t put it down.  I didn’t want it to end, even though we all know what the ultimate end to the story will be.   

In 2008, Simon Fitzmaurice was diagnosed with Lou Gehrig’s Disease (ALS).  He was given three to four years to live.  That was nine years ago.  In that time, he has lost the ability to use his arms and legs.  He can no longer breathe on his own and relies on mechanical ventilation – a lifesaving technology that he almost wasn’t allowed to have because of his diagnosis. 

But he has also gone from having two children to having five.  He has continued his career as a film director.  And he has written this book.   

Simon Fitzmaurice wrote “It’s Not Yet Dark” by using eye-gaze technology.  I can’t even imagine the time and effort that went into it, but the result is truly amazing.  It’s written from the heart.  It’s a labor of love. 

It’s a feat.  Because the book is rich, lyrical, honest, and poignant.  The author faces his mortality head on because it is his reality.  And it really is all our reality, but for some it is more real than for others.

It is clear that while the author’s body has broken down, his mind has gotten sharper.  I can’t explain it, but the way the story is pieced together, it’s impossible to put it down.  It’s written with an honesty and a clarity that many people never develop. 

But the feeling I got from the book, my evaluation of it, isn’t coming from the fact that the author is fighting an incurable, degenerative disease.  It’s because the writing is that good.  It is one of the best books I have read in a long time. 

“It’s Not Yet Dark” will be available for purchase on August 1, 2017.  It can be purchased on Amazon

There is also a documentary of the same name, which you can learn more about by visiting:  I really hope that I get a chance to see the film.   

This review isn’t doing this book justice because I just can’t say enough about it, and my best advice is for you to go ahead and read it yourself.      

Do me a favor.  Do yourself a favor.  Even if you have only the time in one weekend, read this book.   

“But that was before.  This is after.  Never before had I felt that split, but now a fault line has opened between our past and our present, and there is no going back.  ” (p. 2).

* I received a free copy of this book from the publisher.  However, the review presented here is solely based on my personal opinion of the book. 

Monday, July 3, 2017

I Do Have Lupus And RA After All…

16 days after my appointment took place, the new rheumatologist that I saw called me with my test results.  Keep in mind that these results were available on the patient portal, which I was given access to immediately after my appointment.  So in reality, these results were ready between one and five days after my appointment took place.  They were results that I had already seen. 

Results that showed the following:

-         Elevated ALT
-         Elevated AST
-         Elevated ESR
-         Elevated Hematocrit
-         Elevated Hemoglobin
-         Elevated Potassium
-         Elevated Protein
-         Elevated Sjogren SSA Antibody
-         Elevated Vitamin D
-         Decreased Lymphocytes

But that’s all totally normal, right?  She also ran tests for multiple myeloma.  She didn’t even tell me she was doing that.  Thank you, Dr. Google.  If that was really the case – if I had cancer that had gone untreated for nine years – I’d probably be dead.    

And what she didn’t test for was also telling. 

No ANA.  No Rheumatoid Factor.  Confirmatory diagnostic tests that should have been run, especially since in person, she didn’t believe that I have lupus and RA.   

Why it took her 16 – yes 16, not seven, not 10, not 12 – days to contact me, especially when I had left several messages for her, is beyond me. 

Of course, when I talked to her on the phone, she had changed her tune a bit.  She told me on the phone that my diseases are stable.  And I really wanted to say, “Oh!  You mean the diseases you told me that I may or may not have?”  But I didn’t.  Inside I seethed.  But over the phone, I tried to remain calm.  With everything she said, I replied with something like “okay” or “uh huh”, the way you respond to someone who you’re supposed to respect but don’t. 

The first time she called me – Day 16 – was on a workday at 10:15 a.m. on my cellphone, so I missed the call since I can’t have my cellphone out at work.  She had my work number and I had told her she could call it, but she didn’t.  It’s like, yes, I’m sick, but I work.  Sorry if that’s so hard to believe.  We finally talked on Day 17.  But I wasn’t counting or anything.  I’m immortal.  I’ve got nothing but time.

She also gave me numbers from the labs that were wrong – I had seen them all already and had pretty much memorized them.  And someone kept coming into her office while we were on the phone and interrupting her, so she kept telling me to “hold on.” 

Not only did she have no regard for me as a patient, but she also had no regard for me as a person. 

I knew that nothing she would say would come as a surprise.  And nothing she could say or do at this point could hurt more than our first encounter.  And nothing she could say or do could repair the damage that was done during that first encounter.

To the point where that first encounter will likely be the only encounter.  It was the first and likely the last.  I wish I could say it never was.  But it’s not that easy to shake off.  To be told after nine years that you don’t have the diseases you think  you have, and that you’ve been misdiagnosed and treated incorrectly, when the person telling you this has no evidence to base that determination around other than some mysterious beef with your old rheumatologist, it’s truly the stuff of nightmares.  It’s the kind of thing that I know happens to others, but I didn’t really think would ever happen to me.  But clearly I’m not immune.  And clearly after all these years of craziness, I can still be surprised…in a bad way...  

I entered that office with hope and I left with desperation.  Doctors have power, and this particular doctor used that power for evil rather than for good.  I’ll never really know why, but I’m 99% certain that she is not the doctor for me.    

I’ve already made an appointment with a different doctor at a different practice.  I made that appointment on Thursday and received the paperwork in the mail on Saturday.  The doctor’s office that I went to claimed to have sent me their paperwork twice and I never got it.  I’m noticing a difference already. 

I understand that everyone wants to be the hero in someone’s life.  But after nine years of living with lupus and RA, I am never going to be that person for this doctor, or any doctor.  I need management, not diagnosis.  I need compassion, not reaction.  I’m not a science experiment.  I’ve been there and I’ve done that. 

This is my life.  And lupus and RA are an excepted and recognized part of that life. 

I knew in my head and my heart that this doctor was wrong.  She made pronouncements without evidence or reason.  And when it came down to it, she wouldn’t even admit that she made a mistake.  All she could do is tell me what I already knew.  That my diseases are much more stable than they were nine years ago.  That they are in a different state, and yet they are same.

I have lupus and RA. 

July of 2017 is no different than April of 2008. 

Same story, different day, different month, different year. 

And I can breathe again. 

You can’t throw the baby out with the bathwater, not when the situation doesn’t call for that.    

This chronic illness thing is not a static journey but an active one.  No matter how much we hurt or how fatigued we are, we go on.  And we deal with so much crap along the way.  We let others inflict hurt upon us in the name of health.  We let doctors literally “play” doctor.  We find people we can trust, and sometimes we find people that we cannot.    

I knew I didn’t need Arthritis Foundation brochures about lupus and RA.  I could have written those brochures.  And if you think about it, I spent eight years in graduate school and I’ve been sick for nine years, so that’s 17 years worth of experience.  I think that might just trump medical school.  And if that doesn’t, well, it’s my body.  I think I am more of the expert in that than anyone. 

If anyone’s keeping score, I won this round.  But I’m back to the drawing board as far as rheumatologists are concerned.  I can only hope that the next appointment with the next new doctor goes better than the last one did. 

(I also had an issue with my insurance and needed a different prescription for one of my meds.  Neither she nor her office could seem to be bothered with that.  Somehow, my old rheumatologist took care of it.)

And in case you’re are wondering or missed it, I had an incredibly successful nine year relationship with my last rheumatologist – you can read about it in the post, “A Thank You Note To My Rheumatologist”.  Losing him is literally the only reason I would put myself through the hell of finding a new doctor.     

Bye, bye brochures!  Enjoy your time in the landfill.

“Nobody said it was easy,
No one ever said it would be this hard.”

-         “The Scientist,” Coldplay

Monday, June 19, 2017

10 Things Phlebotomists Should Never Say

When I first got sick, I was totally scared of needles.  After getting 27 tubes of blood drawn – yes, I’m not exaggerating, I counted before I passed out (just kidding, I didn’t pass out, shockingly) – at my first rheumatologist appointment, that knocked the fear out of me real quick.

But that doesn’t mean I enjoy getting blood drawn or that it is a particularly pleasant experience.  In fact, most of the time, it’s not.  I’m a hard stick and I’ll be the first to admit that.

After my recent hellish appointment with my new rheumatologist – read until I fire her – the phlebotomists at her office stuck me four times to no avail.  I’d like to blame it all on the fact that I hadn’t eaten lunch or had anything to drink because I ended up spending three hours sitting in the doctor’s office.  But the next day, I went to a hospital lab in the morning, after just eating and drinking, and got stuck four times, as well.  Thankfully, at least the second time around, they were able to get all the blood they needed.

But in the process, between both labs, a lot of pretty dumb stuff was said.  Most of it isn’t stuff that I haven’t heard before.  But the more I hear it, the more annoyed I get. 

So, without further ado and in no particular order:

1.       “You don’t have any veins.”

Clearly I have veins.  I am alive.

2.      “You really are a hard stick.”

My body may be a lot of things.  Weird is definitely one of them. And unpredictable.  But one thing I know with certainty is that I AM A HARD STICK!!!  Don’t say I didn’t warn you.

3.      About those attempts where no blood flows, but as soon as they pull the needle out, out comes the blood:

“Well, at least it’s bleeding now.”

Literally, if another phlebotomist says this to me ever again, I will probably punch them.  This isn’t cute or funny.  It’s called DO YOUR JOB and GET IT RIGHT.

4.      “I bet that didn’t hurt at all.”

Yeah, well, that’s something that I wouldn’t bet money on, because you will lose that gamble.

And don’t ever, ever tell me how I should or should not feel.  Until you’re sitting in my seat, having a stranger poke and prod you, you have no idea what it’s like.

5.      “Can you straighten your arm more please?”

No I cannot.  I have ARTHRITIS.  What part of that is so difficult to understand?  Thanks for asking nicely though.  You get an A for effort and an E for execution.

6.      “Are you sure you’re okay/don’t want any juice?”

I’m super, thanks for asking.  But in reality, if you really cared, you wouldn’t ask that question because you know that the answer is “no”.  There’s nothing enjoyable about the experience, whether it goes “well” or terrible. 

I know that you just want to make sure that I’m not about to pass out and hit my head on the floor and make your job even more difficult than it already is. 

This isn’t my first rodeo.  I’ve never passed out from a blood draw and I’m not about to start now.

7.      “I’m going to try one more time…”

Don’t get me wrong, there’s nothing I love more than getting stuck with a needle, so I could let you poke me all day if you really want to, but if you’ve tried twice and failed, you’re out.  Do not pass go, do not collect $200.  And I don’t care if the lab you work for allows for three or four sticks per phlebotomist.  If you try twice and get nothing, there is a high likelihood that you won’t get anything no matter how hard, or how many times, you try. 

8.     “Wow, the last lab did a really bad job.”

You’re only allowed to say this if you do an arguably better job.  So in theory, if the previous lab stuck me four times and didn’t get any blood, and you stick me four times and get blood, you did a slightly better job.  But to me, unless you get everything in one or two sticks, you haven’t earned the right to bash whoever maimed me previously. 

9.      “You’re going to feel the teensiest, tiniest, little prick.”

And you’re just a prick, no size required.  So I guess it all balances out in the end.

10.  “That’s going to leave a mark.”

I know I bruise easily, and in some ways, it comes with the territory.  But if you’ve stabbed me in such a way that you can already tell I’m going to bruise, we have a big, big problem. 

So please don’t state the obvious and don’t pat yourself on the back for a job NOT well done.  Sorry if I’m not signing your praises.  Sorry if I don’t want to see you ever again.  Don’t quit your day job.  Oh wait…this is your day job…

So there you have it.  If you’re chronically ill, you’ve probably heard some variation on many of these phrases.  And if by chance a phlebotomist or future phlebotomist happens to be reading this, please don’t take a page out of this book.  This is a guide of what not to do. 

Sorry if I sound angry.  But if something had been done to me unwilling and without my consent, and I had the bruises pictured below, it would probably be considered assault.  So forgive me if the routine is starting to wear on me. 

Last Week’s War Wounds

It’s all a little too reminiscent of That Time I Got Manhandled By A Phlebotomist

Wednesday, June 14, 2017

The Storm After Years Of Calm

What’s one of your worst fears?

One of my worst fears, for as long as I have been chronically ill, is seeing a new doctor who disagrees with my diagnoses.

That’s exactly what happened yesterday.

My old rheumatologist is leaving the state so I needed to find a new one.  I opted not to stay within the system my old rheum was in because he and I talked about it, and it wasn’t particularly convenient for me proximity-wise, and he had heard of the doctor that had previously been recommended to me by a family friend.  He felt that my illnesses are at a stable enough place where I didn’t need to stay within the same system if I didn’t want to.

I’ve been waiting several months for this appointment.  My hope was to get in while my old rheum was still practicing, but that didn’t happen.

So finally, the appointment was yesterday.  I went in feeling very prepared.  I had a notecard with my current medications and a notecard with my past medications.  I had a list of hospitalizations and procedures.  And I had a list of current issues that I wanted to make sure I touched on.    

I wasn’t prepared.  Not by a long shot.

This appointment felt eerily similar to my first appointment with my old rheum.

Questions being thrown at me rapid fire.  Asking me why I had listened to my previous doctors, all the while expecting that I am going to listen to everything this new doctor is telling me. 

It felt the same.  Almost.

Except that back nine years ago, I was on a quest for answers.  And now, this one appointment has seemingly refuted or called into question everything that, that appointment nine years ago sought to make clear.

That I thought was clear.  That I had accepted as given.  That I had accepted as my life.    

This appointment was 50,000 times worse because this doctor refuted the last nine years of my life.  Like it’s a lie.  Like it’s some kind of joke that I haplessly fell for.  Nine years. 

Nine years of experience can’t be wrong, can it? 

I know how I felt then.  I know how I feel now.  I know that I’ve been on a lot of medications that did not work.  And I know I am currently on a regimen that is keeping me feeling reasonably well. 

Basically this new doctor is saying that I may have lupus and RA, but I may not.  And that she is 100% sure – from NOT looking at my records, not having any current labs or x-rays – that I have fibromyalgia.  But as for the rest, it’s up in the air right now.

So if I don’t have lupus and RA, how does one explain why the medications I’m currently on have worked and have made me feel better?  Clearly it’s not just a placebo effect, that the very act of taking pills makes me feel better.  Because I’ve been on plenty of medications that have made me feel far worse.    

It’s not like being told you have cancer and then someone saying that, actually, you don’t.  That is probably the kind of news that most people in that situation would be glad to hear.

It’s not as if lupus and RA are small potatoes.  I would love not to have these illnesses, or any illnesses at all, for that matter.  But I do.  And I’ve been working within the confines of these diseases for nine years. 

Everything makes as much sense as it seems life ever makes with lupus and RA.

I know who I am with these illnesses.  I’ve accepted the life I will have because of these illnesses.  In many ways, I am who I am today because of these illnesses. 

Take that away, and who am I?  I don’t know.  The hurt and confusion that I’m experiencing right now is deep. 

It’s not like the things this doctor is saying click and make sense, and I’m finally seeing everything clearly for the first time in nine years.  In fact, for the first time in nine years, since I was diagnosed, I feel the way I felt before I had a diagnosis, before I had a name and diagnostic code to slap on myself.  I feel lost and scared.

I’ve felt lucky that I had labels to put on my diseases and that I had concrete evidence for having those diseases.  Is it possible that my lupus and RA are in clinical remission, but I’ve developed fibromyalgia secondary to that?  It wouldn’t surprise me, if, after spending so much time in pain, that my body misreads the pain signals and creates pain even when it’s not actually manifesting in my organs and joints. 

But to say that I don’t have lupus and RA at all and that I never actually did?  I truly don’t know what to say to that.  It’s incomprehensible.    

I’ve built the last nine years of my life around these illnesses, and for that to be taken away?  It’s unexplainable.  It’s devastating.

I’m not a science experiment.  You can’t just act as if what I’m telling you and what I’ve experienced doesn’t matter.  I know my body better than some doctor that I’ve never seen before and who literally knows nothing about my history. 

So maybe at our next encounter, maybe I will stand up and fight harder.  But I was so taken aback, so crushed, that all I could really do is sit there and shake my head.  Like is this really happening? 

I got beat down.  And I slowly have to get back up.  I’m trying to convince myself that no matter what, I belong in and to the autoimmune disease community and that all of the work and advocacy I have done over the last nine years matters.  And it breaks my heart to think that, that might not be the case.    

The worst part of the whole interaction was that there was no care or concern.  It wasn’t that this doctor seemed genuinely concerned about me being on medication that I don’t need to be on or that I had been treated unsuccessfully for two diseases for nine years and now it was time to find answers.  It seemed like she just wants to be right.

And I’m not convinced that she is.

And I have to wonder about her end game.  Does she want me to go off of my meds to see what happens and how I and my labs look without my current medications?  I don’t think I will be functional for a week without them.  I’m not sure I’d even be functional without them for more than a day.  

Maybe it’s too soon to be writing this post.  None of the labs or x-rays are back.  But I had to get it out.  I had to turn to the one place that I have documented everything since this journey began nine years ago. 

I think part of the most insulting thing is that when I was leaving, she handed me three brochures created by the Arthritis Foundation – one for lupus, one for RA, and one for fibromyalgia.  I will read them, cover to cover, only so that I can note down all of the symptoms that I have to prove a point.

But I don’t need them.  And I don’t deserve to be handed them as some consolation prize.  I’ve been doing this for nine years.  It’s insulting that that’s the impression she got of my knowledge of my own illnesses.    

But when your bedside manner paralyzes a patient and takes them back to where they were when they had no clue what lupus was and thought arthritis only happened to old people, that’s a problem.  When you take someone who is stalwart at advocating for others and cause them not to be able to advocate for themselves, that’s a problem.  And honestly, that’s on her, not me.  So let’s get one thing straight.  I am not that scared 22 year old that I was when I was diagnosed.  I’m a stronger, better person than I was then.  And I need to muster my strength because apparently, I’m literally and figuratively just getting started.  

(I had originally planned after the appointment to try my hand at vlogging, but that’s not happening because I would just be a hot, crying mess)

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)