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Reese’s Cups and Hamster Wheels

I first fell in love with memoir as a junior in high school during a course aptly titled Rewriting A Life.  There, I was introduced to the work of Mary Karr, and to this day I soak up her words like a sponge absorbs a misplaced glass of cabernet: fully, and scattering droplets where they are most needed (the only clean part of the carpet, for example).

Here’s a droplet:

When you’ve been hurt enough as a kid (maybe at any age), it’s like you have a trick knee.  Most of your life, you can function like an adult, but add in the right portions of sleeplessness and stress and grief, and the hurt, defeated self can bloom into place.

-Mary Karr

That’s sort of how I feel lately.  The perfect storm of life stressors- past, present, and future- has left me questioning my moral successes and failures, my worthiness as an advocate, and where to go from here.  The answer is that there is no black or white response- only more questions, and more places to go.  The best work I can do at the moment is simply to voice this.

I am angry that our fellow people with diabetes are dying because insulin is inaccessible and ludicrously expensive.  I am angry that the people who can afford insulin- myself included- are under the constant pressure of maintaining positive disease outcomes with rusty toolboxes.  I am angry that we do not have a cure.  I am angry that we are so fragmented as a community, that when we voice dissent we are quickly hushed by the status quo of comfortableness and the diabetes industry- luxuries that so many others do not have.  Finally, I am angry that I am angry, that I have scapegoated much of my anger on diabetes, and that I have not always handled life’s difficulties with the grace and dignity that I know dwell within my heart.

However, I am grateful that despite the bad stuff, there are friends and supporters who still believe in the good stuff.  Their love has never wavered, and has inflated into a life raft when needed most.  (Thank you).

Rewriting A Life does not mean you get to copy and paste a Cinderella ending to your story.  You simply get to live it, and to describe the good and the bad in detail that has the potential to resonate with someone else who desperately needs to hear you.  Perhaps you desperately need to be heard, too.

Recently, emotional and physical health have felt like running on the hamster wheel while nursing a sprained ankle and a hangover.

So, I switched things up and adopted a guinea pig.

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This is Reese.  She is colored like a Reese’s cup.  

She is currently petrified of me, but I hope the same thing that I hope for you, or me, or any living creature: that she feels loved nonetheless.  

 

 

 

Insurance Sans Reassurance

Insurance isn’t all it’s cracked up to be.  We’ve been over this on Twitter.  Out-of-pocket expenses remain ludicrously high for many of us, and in my humble opinion insurance gets off the hook way too easily while the media yells at Pharma (which is, of course, its own beast of an issue- but that is an argument for capitalism that goes beyond the intent of this blog post).

It is open season for insurance enrollment, so you would think that the necessary information consumers need in order to select a plan that suits their needs would be front and center.  Far from it.

I am under the impression that no one is an “expert” in healthcare anymore.  Healthcare is too complex, and varies too much by individual situation, for anyone to truly grasp each nuance at a level of expertise.  I am certainly not an expert.  But I do have lots of healthcare experience at a young age, having worked in healthcare for many years, lived it as a diabetes advocate, and earned a Master’s degree in healthcare administration while graduating at the top of my program.

Despite all of the above, healthcare remains a Rubik’s cube of complexity, and I have grave concerns with where we are heading from here.  How on earth can we expect someone who doesn’t live and breathe healthcare as a total nerd to ever figure this stuff out?  We don’t.  And that is how insurance banks on us.

Ever since news broke of CVS Health’s  ridiculous 2017 formulary removals, which included Sanofi’s Lantus, I have scoured the internet for more information.  Would my current insurance provider (which consults with CVS Caremark as a mail order pharmacy supplier) be offering any coverage for my trusted Lantus?

Insulin, too, is its own monster in the healthcare market.  While we need more affordable, accessible options for diabetic folks all over the globe, this has created a pharmaceutical conundrum.  Pharma companies have answered the call with biosimilar development promised to be more reasonably priced than the name brand options.  The Affordable Care Act encourages cost containment, so we cannot be surprised when companies make moves to curtail costs.  My main concern with both the ACA and pharmaceutical development, though, is that consumers must still have an element of choice if we expect them to achieve positive outcomes (and, therefore, to control costs in the long-term).

Despite however biosimilars are marketed, we do not know for sure that they are bio-exact.  I have worked too hard to relearn the insulin wheel since ditching my defective insulin pump to return to multiple daily injections, and I am not interested in being a biosimilar guinea pig right now.  Why mess with the good thing that has been a lower A1c and better quality of life on Lantus?

Bottom line: If I am going to stick with my current insurance plan and provider in 2017, I absolutely need to see in writing if the insulin that keeps me alive each day is covered.  A 45-minute call with a Caremark representative this week had us both scratching our heads and simultaneously sleuthing around on the internet and insurance website, desperately trying to find formulary documentation for 2017.  Google yielded last year’s list, and searching “formulary” or “Lantus” on the insurer website came up with no matches.

Finally, the Caremark rep found the formulary list buried under a certain tab on the insurance website.  My hunch is that insurance companies do not actually want us looking up this information for fear that we may hop over to a competitor offering better coverage of our medications.  The good news for me is that Lantus will be covered for me next year, albeit at a higher price.  When all is said and done, the biosimilar version (Lilly’s Basaglar) is not that much cheaper…

What a convoluted runaround for not that much gain, which is the moral of the insurance story in recent years.

 

 

*If you use FEP Blue, I highly suggest clicking here, here, and, especially, here to learn about 2017 coverage.

 

 

Hope in November

No, this isn’t another corny November election pitch.  I’m talking about hope during National Diabetes Awareness Month this November.  What better way to foster hope than to write letters to the families of newly diagnosed T1Ds?  You can learn more about @mumoftype1’s (Maureen’s) kindhearted project, Letters of Hope, by clicking here.

This is my Letter of Hope:

Hi!

Firstly, I want you to know that whatever you are feeling- anger, sadness, fear, anxiety, exhaustion, cautious optimism, a mix of all of the above- is totally okay.  Even many years removed from the hectic time of a type 1 diabetes diagnosis, you are still allowed to feel these things and to express them out loud, if you so choose.  Not everyone will “get it,” but some good eggs will rise to the occasion and offer support.  The aspect of diabetes that is not discussed enough is how you will see the light in others, and yourselves, more clearly now.  Empathy is just as important of a prescription as insulin.

With empathy in mind, I would like to share some diabetes advice that I wish my family had received upfront:

Life will go on, with some adjustments intertwined to ensure safety.  If your child was diagnosed with T1D, allow him/her to go to diabetes camp, or sleepovers, or field trips.  Have a preparedness plan in place: extra diabetes supplies packed, phone numbers to be reached in case of emergency, teachers who are aware of the diagnosis and know the basics of how to help.

Freaky diabetes situations will pop up from time to time, but trust in your knowledge and abilities to take care of things and to move forward.  Sometimes diabetes just has a mind of its own and you did not do anything wrong to deserve it; every new morning is a “reset button” where you have a clean slate to try again.  Above all else, your child will still get to be a kid, to enjoy school and sports and playdates.  If you are the type 1 diabetic of any age, you will continue to be the person you were before diagnosis.  Your perspective will change for the better; suddenly you will understand just how strong and resilient you are.

Words matter.  We “check” blood sugar, as “test” implies pass/fail.  “Manage” rather than “control” diabetes.  Remember that blood sugar numbers are not “good” or “bad”; they are a guide for making informed treatment decisions.  The person’s character is never implicated by a wacky blood sugar value.  It’s type 1 diabetes; wonky numbers will happen, and you will handle them- sometimes gracefully, other times not so much.  Remember that your job as a person with diabetes, or as a caretaker, is more complex than most people would ever realize; go easy on yourself.

Offer guidance in a supportive manner, rather than lecture.  The islet cells have misbehaved, leading to type 1 diabetes; but the person is never to blame.  Even if there are days where diabetes management seems to slack, remember what it was like to be a teenager yourself.  Be understanding.  Do not try to rewrite the diabetes wheel all at once.  Hone in on one time of the day that seems to need improvement- breakfast, perhaps- and start there to make the process manageable.

Diabetes discussions are inevitable, as you may collaborate on insulin dosing decisions, carb counting, and similar technical items.  Yet once you sit down for a family meal, try to leave diabetes behind.  T1D gets enough air time each day.  Dinner is for enjoying one another’s company, laughing about the funny anecdotes from work or school, being a family that is so much more than the diagnosis of a health condition.  Reserve that time for yourselves.  Take vacations and splurge a little; added insulin will cover ice cream for dessert, and your kids will thank you for giving them that freedom one day.

If and when you want peer support, there is a large, engaged community online- from Facebook groups to blogs to the diabetic online community (#doc) on Twitter.  These online interactions can lead to in-person meet-ups.  The friendships are real and the bonds are solid, whether they are formed online or offline.  We are here for you.  Although we have not met you in person, we are thinking of you and praying for you during this time of transition after diagnosis.

Sending love, and extra coffee!

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Diabetic Alert Cat?

Why is Dad scratching at the door like a goofball?  And why hasn’t he given up yet?  I’m so tired!, I mused, finally rousing from bed.

My body moved through hypoglycemia-induced-quicksand as I turned the doorknob.  Much to my surprise, Tootsie, our 12-year-old cat, was the actual visitor.  This was not a prank from a human family member.  In fact, this was not a drill.  My blood sugar had been hovering quite low for an extended period of time.  Tootsie knocked in her own way, and, thankfully, she snapped me out of a deep sleep to answer.

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I gulped down some fruit juice from the ever-present nightstand bottle and crawled back into bed.  Although I am allergic to Tootsie and she usually detests venturing to the second floor of my family’s home on Cape Cod, here she was- settling in to keep watch.

 

She knows.  She knows I’m low!, I realized.

As a child, whenever I would wake up in the middle of the night plagued by nausea, I begged my mother to sleep at the foot of my bed.  Don’t talk to me.  Don’t touch me.  Don’t do anything.  But please just stay with me.  Mom obliged and kept her guard post until I drifted back to sleep.

Tootsie got the same memo.  Normally, she would be purring and climbing all over me; but she now understood that the best way one can support a friend during a hypoglycemic event is to simply be a present observer in the moment.

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Continuous glucose monitors and mg/dL readings and Humalog are all foreign things to Tootsie.  She may or may not have identified the low blood sugar scent that alert animals are trained to pick up.  Whatever the problem may have been, Tootsie seemed to know that something was wrong.  She persisted in her attempts to alert me to the issue.  Tootsie did the right thing, and she stayed the course.

Perhaps the human side of healthcare can learn a thing or two from a cat’s display of empathy?

Food for thought…  Pass the Meow Mix.

 

Tequila Shots?!

Okay, Lantus shots.  Almost as much fun, right?

Many thanks to Jeremy of 70-130.com for his insightful piece on various insulin pump and insulin injections perspectives.  I found it therapeutic to reflect on my journey from shots to pumps and back to shots again.  You can read Jeremy’s blog profiling some #doc viewpoints here.

 

 

 

 

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Platforms of Courage

“One who has passed away from earth life has said,

‘Kind words and liberal estimates and generous acknowledgements, and ready appreciation, unselfish delight in the excellence of others, these are the best signs of a large intellect and a noble spirit.  To be true, to be loving is the secret of Christian growth.'”

A few weeks shy of Stanford Medicine X (#MedX) 2016, I bawled into my coffee mug, deeply moved by Mrs. Jane Lathrop Stanford’s words.

My time at the Cantor Arts Center at Stanford University, as well as our MedX ePatient delegate newsletter, taught me more about the Stanfords.  They were a prominent family involved in politics and the railroad business in the late 1800s.  The Stanfords’ son, Leland, Jr., was a curator who passed away from typhoid as a teenager.

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To honor their child’s memory and love of learning, the Stanfords founded Stanford University in 1891.  Mrs. Stanford composed a heartfelt speech commemorating the event, which I encourage you to read in its entirety here.

For me, the most striking aspect of Mrs. Stanford’s speech was her handwritten note after-the-fact of the inaugural celebration: “Not read as expected as I did not have the courage on that opening day of the University- so important in our lives.”  She signed and dated the note Oct. 1891.

As I publish this blog post in Oct. 2016, I am cognizant of the poetic symbolism that makes my undergrad English major heart flutter.  Firstly, I admire Mrs. Stanford for being an outspoken, successful woman in the time in which she lived.  But I respectfully disagree that she “did not have the courage on that opening day.”  The anxiety, perhaps?  Yet the very act of voicing that anxiety in her notes, in the 1890s nevertheless, is an example of bravery.

Courage was surely present in Mrs. Stanford. Courage molded something out of grief and loss, creating a topnotch university where disease is studied and tamed, where support abounds to this very day so perhaps others are spared the pain that the Stanfords endured.

As a type 1 diabetic for almost 26 years, I, too, have searched for a greater purpose in community despite health woes.  Stanford Medicine X is a good place to start.  For instance, while my continuous glucose monitor (CGM) alerted to high levels of glucose in my blood, Sophie Thacher’s simultaneously sounded off to an urgent low.  We are both type 1 diabetics, connected deeply by our friendship and our willingness to work through the challenging moment together, rather than run from it.

#DOC (diabetic online community) at #MedX love!

Whether attending the conference as advocates, pharmaceutical innovators, healthcare providers, tech developers, students, and so on, #MedX reminds us that healthcare is a human story first and foremost.  Here, you will find everyone included™.

With Yoko Sen’s calming voice as our guide, we pondered aloud the last sounds we would like to hear before we die.  The Ignite! talks of recently-dubbed MedX Scholars such as Danielle Cosgrove, Jeri Burtchell, Liz Salmi, and Terry Marlin moved us to tears.

We found joy in the coffee break conversations, too- with compassionate leaders like Dr. Bonnie Feldman, who understands firsthand why those of us with autoimmune disease want to safeguard future generations from our conditions.

We shared cocktails, laughter, and inside joke swear words with Elizabeth Jameson and her caretakers, Sheri and Catherine.  This dynamic healthcare team is the epitome of grace, resilience, and love.  I will carry your example in my heart forever.

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Rockstar Charlie Blotner (you’re never losing that nickname!) moderated our MedX panel called Ah-Ha! moments in mental health and chronic disease management, which included myself, Danielle Edges, Mark Freeman, and Sarah Kucharski as panelists.

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Panel group selfie via Mark Freeman

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Photo courtesy of Charlie Blotner/Stanford MedX flickr

We were humbled by the standing-room-only attendance for our panel, and we want to highlight the want and need for the mental health discussion to be ongoing within the context of managing chronic conditions.  As Mrs. Stanford’s note illustrates, sometimes stating what you feel empowers others to do the same.

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Photo courtesy of Charlie Blotner/Stanford MedX flickr

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Via Twitter

 

There are days where I physically do not feel well and I am angry at diabetes.  Angry that it hurts.  Angry that I cannot always hide that fact from my loved ones.  Angry that I’m angry.  (It’s definitely a thing!)

But then I look around at Medicine X, and all I see is hope.  This does not mean complete denial of the bad stuff.  Acceptance does not mean giving up.  Hope is found in the camaraderie that we share, the things that are said and the unspoken understanding of what does not have to be said, the head nods and the bear hugs.

If I did not have diabetes, I might not be an advocate with the honor of attending Stanford Medicine X.  I might not have the privilege of watching my friends Natalie Abbott and Cassius explain Moebius syndrome to a global audience.  I might not hear Danielle Edges’ laughter over the phone.  No matter how or why I got here, I am eternally grateful to be part of this MedX family.

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Life is not about the “I might not’s”.  Rather, MedX has taught us that life is about the “How might we…?’s”.  How might we be brave, and good?  How might we make healthcare better for all?  

Together is how we might, and how we are.

Mrs. Stanford may not have stood on the podium and delivered her speech at Stanford’s inaugural ceremony.  Yet I cannot help but to think that she now smiles from her heavenly perch as Medicine X rises to new heights each year.  The platform was already there for us; we have chosen to use it courageously, honorably, and generously as we connect the healthcare dots to form a more empathetic world.  I pray that those who come after us will continue to build upon this structure of innovation, creativity, and goodwill.

As we like to say, the best is yet to come…

#MedX

 

Images shared are from Stanford Medicine X 2016 and related events.  

I attended Stanford Medicine X 2016 as a junior member of the ePatient advisory panel.  As such, I accepted a partial scholarship for my participation.  My disclosures can be found here.

 

WEGO Health’s 2016 Health Activist Awards

If you feel so inclined, I would greatly appreciate your endorsements for my nominations to WEGO Health’s 2016 Health Activist Awards.  In my opinion, we are all health activists by virtue of being engaged in our own healthcare stories, as well as being supportive members of online (and even offline!) communities.  Your interactions over the past 2 years have been invaluable to my healthcare journey, and I hope that I have offered that same level of support in return.

To endorse me, please see the link here.

Many thanks to WEGO Health for all that they do to make healthcare better!

 

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Image credit: WEGO Health