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 1^st, 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.

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 […]” 

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...

“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.

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!

Dear Dad (#4)

Dear Dad,

Today is August 13, 2015.  Officially a year and one day since you passed away.  How does it feel?  Everyone says the first year is the hardest.  So is there some magical moment that propels you from year one to year two?  Am I supposed to feel different today?  Lighter?  I don’t.  Recently I’ve been having these nightmares where I wake up with a start and am filled with dread that you died.  Then I realize it’s not a nightmare.  It’s real life.  It actually happened.  You are gone. 

Two days ago was my 30^th birthday.  It was such a bittersweet day.  I’m glad I’ve been alive for another year, but it is weird not having you here.  And today is the day that my world stopped turning one year ago.

According to Elizabeth Kubler-Ross, there is anticipatory grief.  I guess what I mean is that in the back of my mind, I knew you would die someday, but I anticipated that I would be well into adulthood when that happened, like I would be your age when you died, not that you’d be 62 and I’d be barely 29. 

You didn’t keep your promise dad, and it’s a promise that everyone makes that they can’t keep.  You said you’d always be there and you’re not. 

Are you happy where you are?  Or is there only nothingness?  Nothingness like the hole in my heart that exists because you are gone. 

When I got home from celebrating my birthday last year, I discovered that there had been massive flooding in Michigan and that mom didn’t know where you were.  On the morning of the 12^th, Molly texted me to say you had never come home.  I remember being filled with such emptiness, trying to imagine where you might be or what might have happened to you.  I tried to do what I could from New York, calling the Michigan State Police, calling anyone I thought would listen.  But nothing seemed to work.  Then mom called me at around 9 p.m. on the 12^th to tell me that you had died.  The world fell out from under me.  I remember repeating over and over again, through my tears, that I didn’t understand.        

I am still waiting for you to walk through the door, say, “Hey babes!  I’m home.” And act like you’re still here, like you were never gone.  But I can’t hear those words out loud anymore.  I can only hear them reverberate around my own head.

At your funeral, I was crying so hard, I couldn’t breathe.  I didn’t know how life would move forward.  And now it’s already been a year.  How is that possible?  I guess we have two choices.  We either stop living, or we move forward even though life no longer makes sense.

Sometimes, some random guy will pass me on the street and will be wearing your cologne.  It’s disarming.  It makes me happy and sad at the same time.  And I have to look really hard to make sure it isn’t you. 

I still struggle with the religious aspects of your death.  As Jews, we commemorate death on the Hebrew calendar, and the date changes every year.  And I wonder why I am forced to focus on another day, when there isn’t a day that goes by when I don’t think of you. 

Being in New York, I’ve found it hard to go to services.  And I feel really guilty because it’s something that you took such pride in doing for your own father.  I am doing my best to find other ways to make your life and death matter.     

I went home to Michigan for the yahrzeit and it was good to be surrounded by Mom, Molly, Bubbie, and Nancy.  We also unveiled your stone, as is tradition.  It’s weird to say, but the stone is nice.  When you died and we were at the funeral home, they asked us if we wanted the same casket we had for Zaydie or if we wanted to look for a different one.  No one else wanted to, but I was hoping that something would speak to me.  It didn’t.  But the stone, if it has to be here and you’re not, is dignified.   

I don’t think there’s ever really enough time in life.  And we only realize this when it’s too late.  There’s so much I would have liked to have said to you.  So many more times we could have talked.  So many things that you have already missed and will miss in the future.  You didn’t get to see me graduate from Sarah Lawrence College with a second Master’s degree.  You won’t get to see Andrew and I get married (assuming he proposes) and you won’t get to be a grandfather to my future children.

All that I have left are pictures and memories.  Some days that feels like enough, but most days it definitely doesn’t. 

“Summer has come and passed/ The innocent can never last/ Wake me up when September ends”

-         Green Day

Love,

Leslie

If you are interested in reading the other Dear Dad letters, you can read #1, #2, and #3.

Gifts For Chronically Ill People

RA Guy recently spearheaded the Hope Care Package Exchange.  The rules were simple.  You would have one person assigned to send you a care package, and you would be assigned one person to send a care package to.  There was a $20 to $25 limit on each package.   

I wanted to send a care package that had some fun, but useful, illness related items. 

Here is what I sent in my care package:

C.O. Bigelow Hand Sanitizer – http://www.bigelowchemists.com/bath-body/hand-soaps/c-o-bigelow-lemon-anti-bacterial-hand-gel-no-1020.html

Ouch! Big Girls Don’t Cry Band-Aids – http://www.funslurp.com/ouch-big-girls-dont-cry-band-aids or http://www.amazon.com/Big-girls-dont-cry-plasters/dp/B002EVGIV8

Spa Sister Eyelid Gel Mask – http://www.amazon.com/Spa-Sister-Eyelid-Gel-Mask/dp/B005GXQNDO

Human Gear GoCup – http://store.humangear.com/dp/B00AFMEPV8 or

http://www.bigelowchemists.com/brand/humangear-gocup-collapsing-cup-small.html

“Thank You For Existing Card” Tiny Card – Emily McDowell Studio – http://emilymcdowell.com/products/145-t-tiny-thank-you-cards-set-of-10-thank-you-for-existing (This is the same person who has gotten a ton of press for creating Empathy Cards for those with chronic illnesses)

With the exception of the cards, which I bought online, I bought everything in the care package that I sent at C.O. Bigelow.  They only have one store, which is located in New York, but they also have an extensive website, although it does not include every product that they sell in the store.

I had a lot of fun picking this stuff out.  Honestly, I love giving gifts.  I like making other people happy.  Even when my wallet is running on empty, I get more joy from gifting others than I do from gifting myself.  

  

Here is what I received in my care package:

Jack Black Intense Therapy Lip Balm SPF 25 – http://www.amazon.com/Jack-Black-Intense-Therapy-Natural/dp/B000MIH34Q/ref=sr_1_1?ie=UTF8&qid=1438736655&sr=8-1&keywords=682223030042

Scented (French Lavender) Soy Wax Aromatherapy 8 oz. Massage Candle in Square Tin – http://www.amazon.com/Scented-French-Lavender-Aromatherapy-Massage/dp/B00UY1PEM4/ref=sr_1_fkmr0_1?ie=UTF8&qid=1438736708&sr=8-1-fkmr0&keywords=LA-40VC-5TRK+083351123666

Two Old Goats Lotion Foot Balm – http://www.amazon.com/Two-Old-Goats-Lotion-Foot/dp/B0091H9XI8/ref=sr_1_1?ie=UTF8&qid=1438736745&sr=8-1&keywords=689466107043

This care package came with the following note, as it was sent from Amazon.  

  

This is actually a great idea.  If you have favorite products you want to share with someone else, and you know exactly what they are, you don’t even have to leave the house.  You can simply go to Amazon, order them, and have them sent directly to the recipient. 

I’ve never tried any of these products, so I am excited to try them!  

  

I also recently had a chronically ill friend who was hospitalized, so I took a care package to her.  It’s easier to give a care package in person because then you aren’t really limited in the size of what you take, whereas when mailing, shipping has become pretty expensive, so I try to keep those things small. 

I know my friend was interested in adult coloring books, so I took her a coloring book and markers.  I also know that my friend is really into Korean beauty products, so I bought her a few of those, as well.  When assembling care packages to people you know rather than strangers, it’s easier to be a bit more personal and targeted in what you include. 

Stress Less Coloring: Paisley Patters – http://www.amazon.com/Stress-Less-Coloring-Patterns-Relaxation/dp/1440584877/ref=sr_1_1?s=books&ie=UTF8&qid=1438782066&sr=1-1&keywords=stress+less+paisley+patterns

Crayola Super Tips Washable Markers 20 Count – http://shop.crayola.com/art-and-craft-supplies/markers/washable-markers/washable-super-tips-with-silly-scents-20-ct.-5881061020.html#prefn1=craProductType&prefv1=Super+Tip&start=1

Tony Moly Brightening Mask – http://www.urbanoutfitters.com/urban/catalog/productdetail.jsp?id=32482259&category=BRANDS&color=072

Tony Moly Hand Cream – I purchased Cocoa scented but could not find online.  My second choice was Peach –http://www.urbanoutfitters.com/urban/catalog/productdetail.jsp?id=31754682&category=BRANDS&color=067

Finally, I currently have a friend going through some significant health challenges.  I wanted to change it up a bit and get her something that was more meaningful than giving her products she could use as she’s going through a lot right now and I didn’t want to overwhelm her or assume that she is knee deep in knowing that she is ill.  I wanted to get something that was inspirational but not religious.  A care package, per se, like the others, didn’t feel quite right in this situation, so I went with: 

Willow Tree – Thinking of You – http://www.willowtree.com/Thinking-of-You/26131,default,pd.html#start=17&sz=12

 

I don’t share all of these different things to toot my own horn about the gifts I give.  I did this because I love gifting people, and especially when talking about chronically ill people, I wanted to do something that would brighten each person’s day just a little bit.

And I wanted to give you ideas of what kinds of gifts you could give to the chronically ill people in your life – or even for yourself – for you, from you!