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

Failing As A Patient Advocate (And A Granddaughter)

I’ve been absent from my blog for awhile now.  It’s not because I haven’t had anything to say or write about, but more so because I wasn’t sure how to write about the things I was dealing with, or the things were in the midst of happening and I was trying to privately process everything that was going on.

The most recent thing I’ve been dealing with is the hospitalization, and ultimately, the death of my Bubbie (grandma).  She died November 30, 2016, at the age of 90, after spending almost a month in the hospital. 

Yes, I understand that she was 90 years old.  So please don’t provide lame platitudes about how she lived a good, long life.  I get it.  But that’s not what this post is about.  This post is about the complete and utter failure of our medical system, and the fact that as a patient advocate, I stood by and watched it all happen and felt powerless to stop it. 

My Bubbie went into the hospital on November 1, 2016.  She was released from the hospital on November 11, 2016.  She went back into the hospital on November 13, 2016, and never came out, much to my family’s complete and utter shock. 

Prior to this hospitalization, my Bubbie was exceptionally healthy for her age.  She lived independently.  She cooked her own meals and cleaned her own house.  She did everything.  We celebrated her 90^th birthday in May and it seemed like there was no sign of her slowing down.   

However, after feeling tired and unwell for several weeks, she went to the hospital and was diagnosed with pneumonia.  She was put on oxygen and antibiotics.  She seemed to improve enough to go home.  She was discharged from the hospital, without oxygen – which she had never needed prior to this – for a day and a half. 

She started having additional breathing issues, and much to her disagreement, we made her go back to the hospital.  We were told that the pneumonia had resolved, and that the doctors weren’t exactly sure what was going on. 

And quite honestly, they didn’t really seem to care all that much.  I could tell by the way some of the doctors talked to her that they had written her off because of her age without getting to know her, and learning that she was sharp and clear-headed.  Unless of course she was deprived of oxygen or her carbon dioxide levels were allowed to get too high, and then she became disoriented.

But seriously, they talked to her like she was three years old, and they acted like she wasn’t capable of making decisions for herself.  They talked about her, around her, everywhere but at her. 

Part of the problem is that my Bubbie ended up spending so much time in the hospital, and most of that time confined to a bed, which caused fluid to build up and her muscles to weaken, amongst other things.  And we all know that the longer you stay in the hospital, the more likely you are to get sicker.  That’s exactly what happened to my Bubbie.  Although the pneumonia she was originally treated for had resolved between the first and second hospitalizations, my Bubbie developed hospital-acquired pneumonia. 

My Bubbie’s own primary care doctor, who was – operative word “was” – also a family friend, failed her because he was able to deal with her when she was healthy and only needed to be monitored routinely, but as soon as she required more, he was nowhere to be found.  He didn’t bother to call once or visit her in the hospital, despite knowing full well that she was there. 

And his associate in the hospital was an absolute joke.  When it was explained to us upon my Bubbie’s second admission that the reason she was sent home without oxygen the first time is that she was denied it, I asked the associate what would happen if she was denied it again upon discharge.  Ultimately, we never got to that point, but the doctor told me that it was a good question, but she didn’t know.  That answer was unacceptable and I told her so. 

Most conversations that were had were as effective as the previous one.  I wondered why we were having conversations about invasive heart surgeries that neither my Bubbie nor the rest of my family wanted her to go through, when our collective goal as a family, and my Bubbie’s own goal for herself, was to get her home. 

When it became clear that my Bubbie likely would not return to her previous state of independence, we were provided with the opportunity to talk to the palliative care team.  This occurred six hours before she passed away.  SIX HOURS.  When my Bubbie was sedated and could no longer make a decision for herself, when it fell on us because there was absolutely no other choice. 

These conversations don’t happen when they need to.  Or they don’t happen at all.  I totally understand now all of the stories I’ve heard of people saying that their family member entered hospice just a few days before they died.

Obviously, no one ever leveled with us and told us what was really going on, and what the likely outcome would be.  And this is despite the fact that unless it was the middle of the night, my Bubbie was never alone.  There was constantly a family member with her.  And we still couldn’t prevent all of the failures that occurred.         

I will say, the experience wasn’t all bad in that the nurses were incredible during this experience.  They were so kind and attentive.  They treated my Bubbie like she was a person and not like she was merely someone else’s family member.

However, my Bubbie did everything right.  She went to the doctor religiously.  She paid for good health insurance.  Again, up until this experience, she was in exceptional health for someone her age. 

It’s hard that she’s gone, but the hardest part is the guilt I feel for not doing more.  This is what I get paid to do.  I failed at my job.  But what’s worse is that I failed my family.  I failed one of the most important people in my life. 

I didn’t ask the hard questions.  I didn’t do a good job of shifting the conversation.  I didn’t do the things I felt needed to be done because I wanted to respect family dynamics and didn’t want to rock the boat.  I became passive, and I am not a passive person. 

As someone with a chronic illness, I’ve experienced firsthand how our healthcare system fails sick people, and now I’ve experienced firsthand how our healthcare system fails healthy people, who become get sick, and who die. 

I hope my Bubbie knows how much we love her and that we were there with her until the very end, even when we unknowingly ended up there.  I hope she knows that if we had been fully aware of what was likely to happen, we would have taken her home when that was still an option, when that’s what she wanted, when that’s what we all wanted.  

So take a good, hard look at the picture below.  My Bubbie was everyone’s Bubbie; that’s the kind of person she was.  This could be your grandma.  This could be anyone in your family.  This could be you.  

Eva Rott

May 27, 1926 - November 30, 2016

Advocacy Of A Different Sort: Justice For My Dad

Where have I been, for like, the last year, you’re wondering?

Other than sharing that my dad died, I didn’t really get into the specifics of what happened.  I wasn’t ready, and was trying to see how some things going on in the background played out.

In an effort to protect those involved, I tried to stay as silent as possible while trying to do as much as possible.  But it has become clear that such tactics will get me nowhere.  And now I am ready to share about this publicly in the hope that sharing this will move things forward in a positive and productive way.

As many of you do know, there was a severe storm in Michigan on August 11, 2014, that caused widespread flooding.  My dad was trying to make his way home from work.  Eventually, my mom could not reach my dad and had a vague description from him about where he was. 

My dad was never 15 minutes late, so my mom became extremely worried, given that and the dangerous nature of the storm, after more time went by and my dad was still not home.  She attempted to file a missing person’s report at all of the local police departments in the area, but they all refused because my dad had not been missing for 24- to 48-hours.

As it turns out, this waiting period is a fictitious rule that has been popularized on TV shows.  It’s encouraging to know that, that’s how some police departments come up with their policies – TV. 

Ultimately, while my dad was noted as missing, he wasn’t put in the state database, which would have prompted law enforcement to look for him.  With him simply being in the county database, nothing was done.

My dad was found almost 24 hours later, dead in his car.  He wasn’t found by the police, but by a man who had seen him (alive) the night before.

For my family and I, the question we will never stop asking is whether things might have turned out differently if the police had been out looking for him.  Of course, those in law enforcement make themselves feel better by saying it wouldn’t have mattered, but they don’t have to live with that question for the rest of their lives like we do.     

There are many things I have done already.  I share this so that if people have other ideas, they can let me know, but I won’t end up with tons of comments telling me to do what I’ve already done:

-         Wrote a letter to my parents’ local police department to express concern about the way the situation was handled, including botched death notification.

-         Had a terrible phone conversation with a lieutenant from the above department, who told me that my dad didn’t warrant departmental resources, which prompted me to write a letter to state officials. 

-         Obtained police report via Freedom of Information Act request, which caused me to question why my dad had not been entered into the statewide database.

-         Wrote letter to state officials.

-         Worked with several offices to see what could be done about this situation.

-         Contacted detective that was assigned to my dad’s case.

-         Obtained death certificate.  Cause of death is listed as “atherosclerotic heart disease.”  The problem with this is that according to this NPR article - http://www.npr.org/sections/health-shots/2015/05/20/408011861/map-reveals-the-distinctive-cause-of-death-in-each-state - atherosclerotic heart disease is the most common cause of death in the state of Michigan.  Do they just throw that on every person’s death certificates when they don’t know for sure?  I have maintained throughout this past 15 months that the cause of death was not natural because if it hadn’t been for the storm and the lack of law enforcement action, my dad would still be alive.  

-         Tried to get in contact with the person who my dad had spoken to on the street where he was found.  Unable to do so.

-         Spoke to someone high up in Michigan law enforcement administration that was referred to me by one of the representatives I was working with.  I was told that legislatively, nothing can be done.  I’ve been told that a law that goes back to 1968 says that people may be entered into the database immediately, but this is not a requirement.  There are two problems with this.  First, if missing persons are entered into the database at the discretion of local departments, this will continue to happen.  Second, there are protections for children and the elderly, but apparently, everyone aged 18-75 doesn’t matter.  I am told that if everyone “missing” is entered into the database, it will be a strain on resources, but this has not proven to be the case in states that have adopted similar legislation.    

-         Decided to no longer remain silent.  Started change.org petition. 

Something I have struggled with over the last year is grappling with this tragedy while also living with my chronic illnesses.  When I first got sick, I selfishly thought that getting sick was the worst thing that could ever happen to me.  Then, when my dad died, the worst thing that ever happened to me, happened to someone else.  That has rocked me. 

I have always been open and honest with my readers, and it has pained me not to share this experience with you.  I have been wanting to.  But I needed to do it at the right time.  Is there ever a right time?  Probably not.  But right now is the right time.

Here’s what I need from you:

I ask that you please sign and share the following change.org petition - https://www.change.org/p/michigan-state-house-michigan-state-senate-pass-neal-s-law

You don’t have to live in Michigan to sign!

I am so grateful to those that have already signed, shared, and posted comments of support. 

I’m working on a book about this experience, which I will hopefully have some time to work on more in the next few months.  I ask that you assist me with this when the time is right.

I have been told that nothing legislative can happen, but I don’t believe that, hence the petition.  What I have told those in the system is that I will no longer remain silent.  I will share this story far and wide until something gets done so that no other family in Michigan experiences what my family and I did.

Although my dad was missing for “just” 24 hours, I can’t describe to you the feeling when you don’t know where your loved one is.  It’s indescribable.  It was the longest 24 hours of my entire life.  So I can only imagine what those people go through whose loved ones are missing for longer or are never found at all.  No family should have to live with the question of whether their loved one would still be alive if law enforcement had acted expediently.

This is the mantra that I will live by in order to persevere although many in power stand in my way:

“Whoever destroys a soul, it is considered as if he destroyed an entire world.  And whoever saves a life, it is considered as if he saved an entire world.”

– Mishnah Sanhedrin 4:9; Yerushalmi Talmud, Tractate Sanhedrin 37a

Adventures In Boston And At The American College Of Rheumatology (ACR) Conference 2014*

My original plan was to write two separate posts about my weekend in Boston, one about the Joint Decisions Empowerment Summit, and the other about my experience at The American College of Rheumatology (ACR) conference.  But I decided to combine these two things into one long post so I didn’t have one that was profoundly positive and one that was profoundly negative.

I arrived in Boston on Friday night.  I had a few minutes to settle in before attending a welcome dinner for members of the Janssen Biotech and CreakyJoints teams, and the patient bloggers.  It was amazing to see the friendly faces of those I have met in person before, including Hurt Blogger Britt, Inflamed Angela, Cathy Kramer of The Life and Adventures of Catepoo, and Spoonless Mama Rachelle; and new faces but definitely not strangers Carla of Carla’s Corner, Wren of Rheumablog, RA Guy, All Flared Up Amanda, Titanium Triathlete Dina Neils, and Mariah Leach of From This Point. Forward.

On Saturday, most of what we did was share our patient stories.  While we all know each other via our blogs, being together in person and actually talking was incredibly powerful and uplifting.  I was so lucky to be in the company of so many amazing, amazing people.  We also got to hear the amazing story of Tina Wesson, best known for winning the second season of Survivor, who also has RA. 

It’s events like these that uplift me, inspire me, and inject positivity, enthusiasm, and the sense of family and community in living life with RA. 

Sunday, was more business than personal.  We gave a lot of feedback about the Joint Decisions webinars, which was the collaborative effort of CreakyJoints and Janssen.  We also had the opportunity on Sunday to go to ACR.    

I have to admit that when I was told I would have the opportunity to go to ACR, I was more than a little excited.  Call me a dork, but I have been wanting to attend since I first got sick.

I had high hopes for what would be in store.

I only had a few hours before my flight, but I was grateful to have the opportunity to check it out and see what it was all about. 

I really only made it through the area where the pharmaceutical companies are set up.  To say that they each have their own booth is an understatement.  They have these visually and technologically advanced spaces that can only be described as show pieces.  Most booths had plush carpet and elaborate little cafes and sitting areas inside. 

But that’s where the glitz and glamour ended.

I happened to wear my “I Am The Face of Arthritis” T-shirt.  I love this shirt and would wear it all the time if I could. 

But within  two minutes of entering the convention center, I felt like something was up.  I was being stared at and given dirty looks.  I asked somebody I was with if I was crazy to feel like people were staring at me, and she agreed that it was definitely happening, and often not very subtly, I might add. 

I may have RA, but I am not blind.  Hello all you people, I see you staring at me. 

I was very taken aback by this response.  Why are you in rheumatology if you can’t handle the realities of this disease?  Maybe most of the people I encountered were researchers with little patient contact, at least I hope that’s the case.  Because otherwise, I really don’t understand. 

And unfortunately, the odd behavior didn’t stop at dirty looks. 

The minute we mentioned we were patients and bloggers, people didn’t know what to do.  One woman turned around and walked away without saying a word.  Some people wanted to know what a blogger was.  Not smart because if you knew what a blogger was, you would know that I would write about and share your rudeness with the world. 

I understand that in the capacity the pharma companies were in at ACR, they are concerned with being accused of trying to sell drugs directly to patients, which is a big no no.  But, it doesn’t mean that they have to be rude and ignore us.  You can welcome us to ACR. 

I’m sorry people, but let’s be real.  Us patients help you pay your bills and keep your families fed.  You might want to be nice to us.

First and foremost, ACR is an academic conference.  That was made abundantly clear.   But if “patient” truly is a dirty word at ACR, than the priority of who is being served needs to change. 

To be fair, one booth was very friendly to us.

Here are a few selective live tweets from ACR:

And the members of Janssen Biotech who were present and  hosted the Joint Decisions Empowerment Summit in conjunction with CreakyJoints, were amazing.  They treated us like celebrities, really listened to our experiences and feedback, and pulled out all the stops for us while we were in Boston. 

In finding out that ACR is pretty not patient-friendly, made the rest of my Boston trip so much better because of how amazing it was. 

I’ll be the first to admit that I only got a small glimpse of what ACR is all about, but what little experience I did have, really didn’t meet my expectations. 

I’m sure that in writing this post, I will probably end up on the ACR blacklist and will never have the opportunity to attend again.

And of course, illness didn’t stop there.  I got to the airport to catch a plane to New York, and was told by TSA that I was moving too slow.  Really?  Do you see what my shirt says?  Learn to read and then tell me I move to slow.  When I got to the other side of the security checkpoint, I feverishly grabbed my belongings, not wanting to be rebuked a second time for my speed or lack thereof.  And the security guard on the other side of the checkpoint told me to take my time to make sure I didn’t forget anything.  Come on government employees, pick a side.  I’m considering looking into TSA-pre for the simple fact that I won’t have to go through the whole thing with taking my coat and shoes off, taking my laptop and toiletries out of my bag, and then having to put it all back together again.   

Overall, I will say that I suspect that some of us bloggers don’t get out much, considering the antics that occur when we’re together, including finding a million and one ways to screw with the cardboard cutout of Matt Iseman. 

Aside from ACR and TSA – see, nothing good can come of abbreviated organization names – I truly had the most amazing time with my fellow RA bloggers.  Old friendships were strengthened and new friendships were forged.  And I’m still standing, despite the dirty looks and slow comments. 

I know what you're thinking.  Way to keep it classy, Leslie.  But I am keeping it real.  This goes out to lupus, RA, ACR, anyone that's ever doubted me because of my illnesses, and whoever keeps calling my cellphone and asking for my dead dad.  

* Janssen Biotech paid for my travel arrangements to Boston for the Joint Decisions Empowerment Summit and my attendance at ACR,  however, the views and opinions expressed here are my own.  

Lupus, RA, And The ALS Ice Bucket Challenge

You know me.  When it comes to gimmicky advocacy efforts, I tend to be a curmudgeon. 

In the past, my major beef has been with the “Pinkification” efforts for breast cancer awareness that take place every October.

I’ve always felt that it is really dangerous when any one condition dominates the consciousness of the American public.   

To be honest, I’ve been really grateful that given what has been going on in my personal life, people have been considerate enough and no one has nominated me to do the ALS Ice Bucket Challenge, because I won’t do it, at least not right now. 

At first, I thought that the purpose of the Ice Bucket Challenge was to numb people in a way that mimics some of the symptoms of ALS.  But that doesn’t seem to be the case. 

I actually would understand it a little bit better if that was the goal of the challenge.  But it’s not.  The goal is to raise money and raise awareness.

On the money side, the Ice Bucket Challenge has prevailed.

In the awareness department, I’m not so sure.

Pouring a bucket of ice water over your head makes you uncomfortable for a few minutes, at most, but it doesn’t raise awareness about what it’s like to live with this devastating disease.   

While all measure of celebrities, and even the President of the United States, have videoed themselves taking part in the Ice Bucket Challenge, few of these videos provide any education whatsoever about what ALS is and how it impacts the patients who are diagnosed with the disease, and their families.  

It isn’t awareness, if, when you ask probably 99% of the people who have done the Ice Bucket Challenge what ALS is, they probably can’t tell you much more than the fact that it’s a fatal disease, if they can tell you that much.

Doctors are even warning against the challenge (http://www.forbes.com/sites/jvchamary/2014/08/25/ice-bucket-challenge/ and http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11294023). 

And I know that many people with RA involved in social media have questioned whether taking part in the challenge could have an adverse affect on their health and their joints. 

As it turns out, a recent e-mail in my inbox from the Arthritis Foundation was about Healing Hands For Arthritis.  On September 17, 2014, Massage Envy Spa will donate $10 from every massage and facial, and 10% of sales of select skincare products to the Arthritis Foundation (http://www.massageenvy.com/healing-hands-for-arthritis.aspx).

I some ways, I understand this a bit more than the Ice Bucket Challenge because many people with arthritis benefit from massage therapy.

However, if there is no educational component about arthritis provided along side the donations on September 17, then this too fails to really raise awareness.

I guess we have to ask ourselves what the goal of any advocacy and awareness campaign is.  Is it simply to raise funds, even when there isn’t a clear direction to where all of those funds will go?  Or is the goal to really raise awareness, not just imprint the name of a disease on the public consciousness? 

As of yesterday, since July 29, 2014, $94.3 million have been raised for ALS.  Last year, during the same period of time, only $2.4 million was raised (http://www.alsa.org/news/media/press-releases/ice-bucket-challenge-082714.html).

So maybe for those of us who are skeptical, the joke’s on us. 

It’s great to give to charity.  But it’s not really a sustainable effort if people are giving blindly, and/or due to peer pressure. 

ALS is a horrible disease, and research efforts into finding a cure for this disease are extremely important and necessary.  But there’s also the fact that we need to share the wealth. 

I don’t mean that to sound selfish.  But there are many diseases out there, including Lupus and RA, that are really misunderstood by the general public, and even so by some doctors and some patients.  

So it’s great that ALS has finally had its 15 minutes (and $94.3 million worth) of fame. 

But before you dump a bucket of icy water over your head in the name of ALS, or any other disease for that matter, maybe you should think about it, rather than just doing it.