Wednesday, November 11, 2015

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 - - 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 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 petition -

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

Wednesday, October 28, 2015

Insurance Is Preemptive, Except When You Need It

For many people, insurance is preemptive, it’s for the what ifs in life.  What if I’m in an accident?  What if I’m diagnosed with cancer?  The list goes on. 

But for me, and most other chronically ill people, having insurance is vitally important.  It’s not for the what ifs but for the right now.  I didn’t ask to get sick, so it’s frustrating that there are so many hoops to jump through, not only to prove that you deserve help, but also that you aren’t playing the system. If you know someone who is hard up enough to fake having lupus or RA, will you please hit them in the head for me?

When I first got sick, I had amazing health insurance.  Because I was a graduate student and teaching, I had faculty level insurance.  I had no premium, and very small co-pays.  And truth be told, a small reason as to why I stuck out my PhD program was that I had insurance that allowed me to walk into any of my doctors’ offices, have any tests and procedures they required, and I never had to worry about what it was going to cost me (and my parents didn’t have health insurance at the time).  I think the biggest amount I ever owed at one time with that insurance was $75.   

I realize now how blissfully lucky I was, and also how blissfully unaware I was of the troubles that plague people who don’t have good insurance or who don’t have insurance at all.  But now, I’m right there with the masses of people who are trying to get adequate health coverage. 

My student health insurance wasn’t the greatest.  I needed referrals for everything.  I paid a $3,600 a year premium, which seems kind of high now that I think about  it, and had co-pays, plus I paid 20% co-insurance.  It was a big headache, especially compared to the plan I had in my first stint in graduate school, but it was insurance and it was guaranteed.  The school couldn’t strip me of my coverage for any reason.   

Because my current employer is not offering me health insurance, I was without insurance for the month of September since my student health insurance through school only lasted until the end of August because I graduated in May.  And because the Exchange required a letter from my employer verifying my on and off employment with them, I missed the deadline to get insurance starting in September (that’s a whole other issue).

I lived through September on pins and needles.  I was able to afford, just barely, my medications out-of-pocket, and received financial assistance for the one that I couldn’t.  And I hoped and prayed that I wouldn’t need to see a doctor, which I didn’t. 

I found a plan that I can marginally afford through the Exchange, meaning that I am getting a great deal on an otherwise expensive plan, but it still means having to really save to cover it every month.  But that’s okay.  I struggled to find a plan that I liked, and more importantly, that my current rheumatologist accepts.  Then, another snag.  My insurance company will be closing as of January 1st, meaning I’m back to the drawing board to find a new plan, and it’s proving a lot harder than I imagined because there are no plans available that are even comparable to mine.  Now why they even let me enroll in a plan for October when they knew full well that they would be folding is a whole other story, and a whole other frustration! 

I’m looking at plans where the lowest deductible is $2,000.  While I would quickly hit this, it means that I have to have that money up front in order to pay for it, which I don’t  Most of the plans I’ve seen also have very high co-pays for hospitalizations, for example, $1,500 after deductible.  That’s just not affordable for someone who has a part-time, temporary job, and could become unemployed at any time.  For me, the hospital coverage is for the what ifs.  In the last eight years, I’ve had two hospitalizations.  But as far as my doctors’ appointments and medications are concerned, those are non-negotiable.  I need those if I’m going to live some semblance of a life.    

I don’t want to get political here, but there is something fatally wrong with the system. Until now, over the past eight years, I’ve had a variety of coverage, but none of them have put me in danger of not being able to afford my rent.  Sure, my health comes first and in the last eight years of being chronically ill, I’ve had to make some sacrifices, but those were more personal than out of necessity.

I don’t want to sound whiny or like a bleeding heart, but this is a serious issue, and I realize now that I am lucky that this is the first time since I got sick that I am facing it.

Right now I am paying $151 a month premium, my deductible is $250, and my co-pays are reasonable.  So some might say that this is the exact reason for why the company is going out of business.

I wish I could go back to being blissfully unaware, but I can’t.  And I can’t keep quiet because the struggle is real, and it’s real for a lot of people, and not just me. 

The other issue at work here is that a lot of employers are keeping employees just below full-time so that they don’t have to pay for insurance.  In my mind, if someone is working 15 hours a week, I get that.  But if someone is working 27, 28, or 29 hours a week, they should be eligible to receive at least something.  In my mind, this shouldn’t be allowed. 

I wanted to write this post long before now, but worried that if I posted it in September and put it out to the universe that I didn’t have insurance, something catastrophic might happen.

Monday, October 5, 2015

Stanford Medicine X 2015: This Is My Fight Song

It has taken me a week to recover from Medicine X and my #MedXHangover for me to finally put my thoughts together about my second year in a coherent way.

Last year when I attended Medicine X, I felt totally lost and overwhelmed.  This year was still overwhelming – if Medicine X isn’t overwhelming, you must be dead –
but I went with an agenda.  Or maybe not an agenda, but a plan, that I had and I was determined to see that plan through.  I knew going into the application that I wanted to do a talk; that I wanted to share my story in the hope of inspiring others.  I was so excited to get the chance to speak at Medicine X Ed.

Medicine X Ed was new this year, and it was such an amazing honor, not just to be included, but to have the opportunity to share my story with current and future medical professionals.  My talk focused on how doctors need to take patient’s pre-illness lives into account, and understand that patients’ lives don’t end at diagnosis.  I focused on how I was determined to get my degrees, even when most people were telling me that I should quit school.  I also talked about how the best lessons learned in life happen outside the classroom, and that should go for doctors, as well.

I was oddly emotional after my talk.  With the help of Janice, our speech coach, and the amazing support of ePatient Advisor Hugo Campos, I think I went out on stage and owned it.  But after it was over – and let me tell you, 5 minutes goes fast – I thought I was going to cry.  As I reflected on the moment, I realized that although I am used to telling my story in writing, this is really the first time that I have gone out and laid myself bare in front of strangers.  I left my little bubble, not knowing what the response to my talk would be.  Sure, I’ve spoken on panels before, but I’ve never really shared my story in a medium such as this.  I’ll share here a few of the responses from Twitter, because I was blown away with how my Twitter feed blew up after my speech:    

This year, there were some interesting additions, aside from Medicine X Ed.  There was more of a focus on mental health, more of a focus on health as it relates to gender, and an amazing discussion on chronic illness and intimacy.  People with different conditions were also represented this year that I didn’t see last year. 

This year, I was so excited to get the chance to room with Britta Bloomquist.  She and I have known each other through blogging for seven years, but had never met in person.  I think we had a great time together.  I also got to see some old friends and make more new ones. 

My main takeaways from this year is that much of life is about experiences and not degrees, and the power of the patient story and the patient voice – sharing your story in a way that feels authentic to you.  

At Medicine X, I’ve made lifelong friendships in the span of just a few days, and it doesn’t feel weird that we’ve known each other in real life for such a short time.  Despite our different illnesses, the conference brings all of us patients together and creates a cohort of people who share the same goals and aspirations. 

Medicine X is more than just a conference.  It’s a Commitment – to being better, to doing better, and it inspires those in attendance to strive to make healthcare better for all.

So the million dollar question is whether or not I will be back next year.  Going into this year, I was convinced I would not come back for a third year.  But I have so many ideas for next year.  I have drank the Medicine X Kool-Aid.  So I’ll keep you posted on that! 

Once my Ignite video and talk are up, I will make sure to post it here, as well as on social media because I am looking forward to sharing it with you!  And for many of the people who I got to meet at Medicine X but who weren’t at Medicine X Ed.

For now, you can check out the Just Talking Podcast, which shares some of our reflections about Medicine X: ABOUT STANFORD MEDICINE X 2015. (Thanks Chris for including me!) 

“[…] This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me […]” 

Friday, September 18, 2015

If You Need Me In The Next Two Months...

This is where I will be (because I do not know how much blogging I will get in between trips).  The green boxes are when I am working and the pink boxes are traveling for various conferences, including Stanford Medicine X, ePatient Connections, and Patient-Centric Clinical Trials.

I will be traveling for about a third of each month in September, October, and November. 

Try and keep up!  I do not know if I will be able to...

Wednesday, September 2, 2015

“I Feel Your Pain”: Four Words That Anyone Living With Chronic Illness Or Chronic Pain Would Like To Hear

A lot of us hope to receive compassion and understanding from those we are closest to.  However, most of us feel like we would never want our loved ones to get sick, and that’s the only way they would understand. 

But at some point, they will experience pain, too, even if it is just acute pain.  And it’s how they experience that pain that is really critical to those of us who deal with chronic illness and chronic pain on a daily basis. 

Recently, my BF had back pain.  He was laid up with an ice pack and it hurt him to move.  I tried to be supportive to him because he’s supportive to me when I’m in pain.

But this was more than that. 

He said, I don’t know how you do it all the time.  I knew where this was going, but I wanted to hear him say it.  Being in pain.

For him, one day of intense pain was enough to basically make his life miserable.  So multiply that by 24-7-365 and you’re looking at my life in a nutshell for the past eight years. 

Now you have to understand, my BF and I have been dating for three and a half years.  And we have pretty much spent every day together since we met. 

And maybe that’s what it takes.  Not just spending all that time together, because there are plenty of people that do that and still don’t have any understanding of what their loved one is going through, but to really be open and honest with each other.  

My BF is one of the only people that I am really open with about when I am in pain and where, because most other people just don’t want to hear it or just don’t care.    

Recently, it’s come to my attention that some people have viewed my behavior as aloof and standoffish.  But when you’re in pain all the time, it’s hard to be happy and cheerful.  I do the best I can to put on a brave face, but it might not come across that way.  And even if it does, I really have no other choice but to live with and through the pain.  Otherwise I would never get out of bed or be able to do anything.  But I get up in the morning, for the most part, and get myself to where I need to be.  And to me, that’s enough.  But for some people, that’s not enough.  But if they haven’t experienced pain, or they’ve never extrapolated their pain experience onto someone who lives in pain, they aren’t going to get it, and they aren’t going to understand that sometimes doing the best you can is really all you can do.   

And until you’re not in pain anymore, you don’t realize the negative impact that near-constant pain can have on your life.  It wasn’t until I got a very successful cortisone shot in my hip, in March that, not only myself, but others around me, noticed a distinct difference in me.  People told me I seemed lighter and happier.  And I am.   

Because pain is a drain on our bodies and our brains.  It takes everything you have to work through it.  And sometimes, no matter how hard you try, you just can’t.  And that’s okay.  There’s a time and a place for that. 

While my BF didn’t directly say I feel your pain, by saying that he didn’t know how I dealt with pain on a daily basis based on his experience of one day of significant pain, made me feel that progress had been made.  That maybe he’s one step closer to getting it than almost anyone else in my life. 

And it’s important to have that with the person you spend the majority of your time with.  It takes time.  And not all people know how to be empathetic.  Some people will never get there.    

Being in pain is more than a number on an arbitrary pain scale.  It’s about living life to the best of your ability in spite of being in pain.  Whether that happens gracefully or not, I don’t think matters.  What matters is when someone in your life, even if only for a day, gets a glimpse into what you are going through.

Tuesday, August 18, 2015

What Med X Means To Me: My Feelings The Second Time Around

I can’t begin to describe how excited I am for Medicine X this year. 

I was super excited about it last year, but then my dad died and pretty much everything in my life took a backseat.

The first day of the conference was the funeral of one of my best friend’s dad, who died three weeks after my dad died.  She drove across the state of Michigan to attend my dad’s funeral, and I felt awful that I couldn’t be there to attend her dad’s funeral.

Needless to say, I was a basket case.  I knew I was going to California for Medicine X, but how I actually made it there and back, I’m not really sure. 

I enjoyed the experience, to be sure, as much as I could given the circumstances  that occurred in the weeks leading up to Medicine X. 

If it would have been up to me, I probably wouldn’t have got to Medicine X last year, but my mom told me that I had to keep my prior commitments, that that’s what my dad would have wanted. 

I felt bad going, though, because my head wasn’t in the game – I wasn’t able to give it my full attention.  I wasn’t even thinking that much about health, to be honest.  I was hoping that I wouldn’t flare after my dad died, but given all of the emotional turmoil, I wasn’t sure how I would fare.

Luckily, I had an amazing roommate who made sure that I had people around me.  I felt included, though if I hadn’t had the support, I would have felt completely alone and probably wouldn’t have appreciated the experience to the full extent that I did. 

The effect that Med X had on me was profound.  I was completely overwhelmed by the amazing people that were involved, and the way patients, specifically, were treated.  There is, in my opinion, nothing else like Medicine X. 

I’ve heard some people bashing it lately, and I wish that everyone who wanted to be a part of it could, because it’s a life-changing experience.  I walked away last year with a much clearer sense of who I am as a patient, and how patients have the power to really make change in healthcare. 

I was so affected by the Ignite talks that I started writing mine in my hotel room at Medicine X last year.  I was so inspired by others, and really wanted to share my story with other people.  Last year I was on the Engagement track, where I basically had to Facebook and Twitter the heck out the conference.  In fact, Medicine X is really where I got my Twitter prowess from.  I’m glad that’s all of the responsibility I had given everything else that was going on. 

But this year, I knew I wanted more.  I feel like I came into my own at Medicine X last year.  When I applied for last year’s conference, I really wasn’t too sure about exactly what the Medicine X experience would be like.    

This year, I’m so excited that I’m going to be giving an Ignite talk during Medicine X ED, which is new this year.  I’m excited to share my story.  I’m excited to see old friends and to make new ones.  I’m excited that my roommate this year is a fellow blogger who I have followed online since right after my diagnosis, and I finally get to meet her in person.  And I feel extremely grateful that I’ve had the privilege of experiencing Medicine X not just once, but now what will be twice.     

Excited to be seeing some of you in Cali in about five weeks!