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)

#HealthHasNoParty

#Iamapreexistingcondition


(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.  

Wednesday, April 19, 2017

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

Friday, February 24, 2017

Product Review: Spoonie Essentials Box

** I have been given this product as part of a product review through the Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. **

Seems like whenever I go AWOL from my blog lately, I come back to do a product review.  I promise to have several posts soon that aren’t product reviews.  But for now, this is a review for the Spoonie Essentials Box.

Watch the unboxing below and then read the rest of the review about the individual products and overall impressions of the box.  I wanted to put a lot of time and effort into this review as clearly a lot of time and effort went into creating this box. 


I was super excited about this since I’m really into various subscription boxes lately. 

Items are listed in the order I took them out of the box.

1.       Stickers – These are super cute.  I already have a project planned using a couple of them.


2.      Bark Thins – These look awesome!  I have wanted to try these, but haven’t had the chance to.

 

3.      Veggie Chips – I always love these.  A great (somewhat) healthy snack.


4.      Candy – As a general rule, if you’re doing edibles, I would do pre-packaged only.  This bag of candy tore open in transit.  It went straight in the garbage. 


5.      Bath Bomb – Smells amazing.


6.      Lotion Bar – Smells amazing.


7.      Chronically Fabulous Tumbler – I love this!  It is super cute and sparkly.  Will be taking it to work to use to increase my water intake.  Perfect! 


8.     Tea Bags – I love tea, so it’s nice to have a few tea bags that are different from the standard boxes of tea that I have. 


9.      Chronic Illness Warrior Keychain – Love it!  It’s already on my keychain.


10.  Organic Gummy Bears – We’ll see about these, not sure if I even like gummy bears…


11.   Paint Brush/Paint Set – Probably will donate this to my work’s collection of art supplies. 


12.  Spoonie Necklace – This is not my style, but very cute.  The thing I like the best about it is that it is created by a fellow spoonie. So that part is awesome!


13.  Happy Pills Pouch Cross Stitch Kit – I hate sewing!!!  Plus it’s kind of difficult with the arthritis in my fingers.  So I will probably pass this along to a friend.  But it is super cute! 


14.  Heart Socks – Love these! 


15.   Party Popper – This must have popped in transit, as there was confetti all over the inside of the box.  I couldn’t figure out what the plastic part of it was at first.


16.  Candle – Smells good, and is in a cute little jar.


Overall Impressions

To me, when I get a subscription box, my goal is to see unique things that I might not be able to find anywhere else or a grouping of things that I know I would not be able to get for that price elsewhere/separately.

I would say that this box sort of meets those requirements.  I’m a huge fan of the spoonie themed items, and for the most part, I love the items in the box. 

I appreciated that since it is February, the theme was about love and Valentine’s Day.  That and the spoonie theme, and it was a good combination.  I felt that the box basically stayed true to the theme.  And I loved the personalized touches from the creator of the box. 


I also love the packaging of the overall box.  It’s fun and bright, and I love the overall “I am visible” message. 


The two things that I am considering dislikes are mainly because they arrived damaged/broken. 

The first is the party popper, which appears to have “popped” in transit, as the confetti was all over the box and the popper was empty.


The second is a hand-packaged bag of candy.  This came torn open, so I ended up throwing away all of the candy that was loose and not individually wrapped. 

This didn’t bother me so much since I didn’t have to pay for the box, but I imagine that if I had paid for it, I would be disappointed if anything in the box arrived and was not in usable/edible condition.

Aside from these two items, everything else appeared to be totally fine other than the fact that there was something in the box, the smell of which permeated the entire box, which makes me think you have to be careful when you are including scented non-food products and food products together.  However, once everything was out of the box and I let it sit for about a day, it seemed fine. 

Would I purchase this box for myself on a monthly basis?  Probably not.  And for the price, I probably wouldn’t necessarily order this for a spoonie friend, either.  

However, I could see purchasing it if there was a quarterly option.  I personally love subscription boxes, but get overwhelmed by the volume of products in them, and I felt a little bit that way with this one. 

This box was definitely fun and unique.  It is also clear that a lot of time and effort goes into creating something like this.  I think this is great for spoonies who are worried about committing to a more generalized product subscription box.  It is also great if you are having flares and are looking for a pick-me-up.  

I am a huge fan of subscription boxes and the like because they give you the opportunity to try new products.  The Spoonie Essentials Box has a ton of stuff in it!  I mean, it took me almost six (6) minutes to unbox everything!  You can enjoy 10% off your purchase if you use the code “Chronic Blog”.  

Finally, here’s a recap of everything in the box:


 

Wednesday, January 11, 2017

Are We All Just Paying To Die?

I wrote a post in September, Doctors Are Part Of the Problem, But They Can Also Be Part Of The Solution, about a terrible appointment I had with my (previous) primary care physician (PCP), in which I was degraded and basically accused of faking my illnesses. 

But then the situation got a little bit worse. 

BECAUSE I GOT BILLED FOR IT. 

Not only that, but it was a bill for $125 for an “extensive physical examination.”   

When I get bills, I pay them.  Even when the amount is painful.  Even when the bill gives me sticker shock and I see red.

AS LONG AS SERVICES ARE RENDERED.

But if you try and charge me for services that were not rendered – and that we both know clearly were not rendered – I will fight back. 

(Cue “Ferris Bueller’s Day Off” – This is where Leslie goes berserk)

All I received was a lecture, and a misguided one, at that.  And then, to add insult to injury, I was billed for it.

I still can’t get over it.  Clearly.  The gull of the doctor.  Apparently he didn’t realize who he was dealing with.

I was so angry that I handwrote a letter.  I just couldn’t stop myself. 

I’ve included the letter here, both pictures of the handwritten version (which I promptly sent) and the text so you can read it (names have been redacted).

***** 



To Whom It May Concern:

I will NOT pay this bill.  On this date, at this appointment, there was NO examination.  Nothing was done other than Dr. _____ yelling at me for no reason.  I was accused of faking my illnesses.  I’m sorry that your office staff sucks, but as a patient, that is NOT my problem, and should not be taken out on me.  You can send this bill to collections if you are that petty, but I will fight it.  If Dr. ______ cares at all about anything other than the bottom line, this bill will be wiped.  It’s the right thing to do and he knows it.  My _____has an established relationship with Dr. _____ and I don’t want this to impact their relationship.  However, if this bill does not disappear, there will be a big problem.  I’ve never been treated the way I was that day by any doctor ever.  And I’ve seen a lot of doctors.  I will not pay money for services that were not performed.  That borders on malpractice.  I sincerely hope other patients will not be treated the way I was.

Leslie Rott

*****

Should I receive a call from a lawyer or a collection agency, I will be happy to them exactly why this bill will not be getting paid, and why, quite frankly, this doctor should not be practicing medicine. 

Additionally, I recently learned that, bloodwork I had put off and then had done, even though I have since made the decision never to go back to this doctor, not only did not confirm his belief that I was faking my illnesses, but did confirm my belief that he believed I was faking my illnesses. 

He ran a variety of tests, including anti-nuclear antibody (ANA), which is a diagnostic test, a confirmatory test, for autoimmune diseases, like lupus and RA.  If he was really curious, this is a test that he would have run when I first started seeing him.  But no.  There’s something cold and calculated about him running that test when he did that makes the situation all the worse.


I always knew that doctors like this existed, but I had never experienced one firsthand. 

Aside from the moral problems I have with this entire situation, I also have a practical problem.  Unfortunately, sick people need doctors.  I am chronically ill, and as a result of this situation, I no longer have a PCP.  And based on my past negative experiences – although this one being the most negative – I’m not too excited about finding a new one. 

But I need one.  And it feels like a lot of work. 

So I am left to wonder.  Are we all just paying to die?

Are we all paying to stay well and avoid becoming ill at all costs?  And then when we get sick, are we paying not to die?  Which, in the end, leads to the same, unfortunate, inevitable conclusion?

My Bubbie passed away at 90, and was pretty healthy until almost the very end.  But I watched the end of her life become the most physically and emotionally painful, and also the most costly.  I am 31.  I am not healthy.  So by that calculation, I will pay and continue to pay not to die.  The most costly times, health wise, are still in front of me, and in the end, I will die anyway.   

I can only fear that in our fast approaching new political climate, this situation is only going to get worse.  We will get poorer quality services at a greater cost to us.  And in the end, we will be sicker for longer, and we will die, sicker.    

We’ve already seen what happens when people in power use it against those who do not have that same power.  I’m not trying to get political here.  But I am using my voice.  And unfortunately, even though one of my New Year’s Resolutions for 2017 is to get un-angry and to focus on the positive, one power I do have is not to stay silent and to expose medical “ills” where I see and experience them.  Therefore, I am sharing this experience, despite the fact that very little good can be found in it. 

Because doctors like this are not doctors at all.  They use their power for evil instead of good.  They give the medical profession a bad name.  They make patients feel badly about themselves, they accuse patients of faking their illnesses, when they, themselves, in fact, are playing the system.  They are charging patients for services they did not render in the hopes that no one will have the time, will be too sick, or will not pay enough attention to take a stand and fight back.   They also make those who are healthy feel that doctors are too cumbersome, so they avoid them at all costs, until they become sick and have no choice.