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.

 

 

 

 

UHC/MDT Debacle Through the Lens of a Bruised Insulin Injector

If I were to fit the stereotype of a self-absorbed Millennial, I shouldn’t give an albino squirrel’s @$$ that UnitedHealthcare will solely cover Medtronic insulin pumps in the near future.

^ Albino squirrel spotted in Washington, DC.  He told me that a laboratory cured him of diabetes!

 

Well, albino squirrels are real, and so is this Millennial.

I do care.

My insurance provider is not UnitedHealthcare.  I walked away from my Medtronic insulin pump over a year ago.  Currently, I manage my type 1 diabetes using Lantus and Humalog insulin pens, the traditionalist method of being certain that insulin is getting into my body.  My stomach bears the bruises to prove it.

Disappointment still lingers when I think about the divorce from my Medtronic insulin pump.  I identified an infusion set defect, and spiked high ketones with every site change.  I pleaded with Medtronic to help, to find an alternative solution, to listen and to trust me.  For awhile, they did.  But then the problems kept happening, and I kept emailing, and they finally chose to stop responding.

They walked away.  If only I could abandon my type 1 diabetes so easily…

I have been vocal about my insulin pump tribulations, but I have always given Medtronic the benefit of the doubt at the end of the day.  My situation was a rarity; most people have good hearts; the manager who did not respond to my emails was told to do so by higher-ups who feared a lawsuit; she went home at night and felt a twinge of guilt, wondering if I was still sick with ketones from my failed pump sites.

At least that’s how I try to imagine it.

When I first saw the headlines about UHC and MDT teaming up, I was frustrated but not surprised.  Finally, people were seeing the light.  Rather, the darkness.

Our healthcare system involves give and take, tug-of-war with patients’ quality of life and companies’ profits at stake.  Although the Affordable Care Act gave us coverage for pre-existing conditions, the ability to stay on our parents’ plans until age 26, and supposedly lower costs, the reality is that in order to receive, we also have to give.  To cut costs in one place, costs have to shift somewhere else.

Medtronic and UnitedHealthcare are not the only companies out there striving to make a profit in a newly-designed medical playing field.  Perhaps their business arrangement was intelligent for their own financial reasons.  Public relations-wise, not so much.  Only time will tell the true breadth of this so-called deal.

As we over-emphasize cost-cutting, we must be careful not to also snip choice and patient autonomy.  Reducing costs sounds great in the short-term, but we cannot disregard the long-term.  If patients’ health is compromised by inadequate access to resources, all the costs that insurance companies may have saved upfront will later be seen in hospital bills and subsequent treatment.

Under my current insurance plan, a preferred provider organization (PPO), I can go out-of-network if I so choose and if I have the capability to pay more for that care.  There are times where I believe wholeheartedly that an out-of-network provider is the absolute best shot at achieving better health.  That is my prerogative, and, understandably, my financial situation to figure out.  While the pricing may not be pleasant, what is most important to me is that I am able to access that care.  If high-quality care means sacrificing my own money for a vacation or a fancy new car, that is my choice.  If my financial situation changes later on, perhaps I will have to reassess and fall back to an in-network provider.  Yet such ability to choose should never be limited by the government or by insurance providers.

Collusion of insulin pump coverage is concerning not only for the diabetes community, but for healthcare at large.  Imagine the ramifications of collusion in multiple disease categories, of various insurers, corporations, and pharmaceutical companies.  Sure, big business is big business, but ethics should be ethics, too.

Notably, in “socialized healthcare” situations all over the globe, we must concede how much give-and-take is occurring.  Patients may have to wait months to be seen by a provider, and that provider may be mediocre.  Such is the sacrifice for limiting the free market.  On the flip side, we have gargantuan healthcare costs here in the U.S. because we roll the dice on access and affordability of treatment in the name of corporate greed.  If the grass is apparently always greener, well, it looks pretty yellow from my point of view, no matter how or where you slice healthcare financing.

Next weekend I will walk at my Commencement ceremony, having completed my Master of Science in Healthcare Administration and Management degree in December of 2015.  The UHC/MDT situation reminds me of a moment in our Public Health course.  As our Professor detailed how “money talks” in medicine, a longtime nurse in the class shook her head, visibly horrified.

“Is that really how this all works?  People don’t simply want to help others who are hurting?” she asked, bewildered.

She was like the little kid learning that Santa is not real, her innocence suddenly dissipating before our eyes.

The reality of healthcare is that money does talk.  Yet, like my classmate, we have to keep the hope alive in our hearts that some of us good eggs are in it for the long haul, for improving lives and fostering genuine human connection in the process.  Medtronic and UHC have called such goodhearted concepts into question, which is why we are now experiencing #AllOfTheFeelings.

Circling back to my personal, weird insulin pump scenario: The things that kept me afloat during such dire straits were my compassionate healthcare team, and the ability to choose.  When my Medtronic pump was no longer a good fit for me, some semblance of hope remained.  I could always sidestep over to a different insulin pump brand, for example.  Or, I could return to multiple daily injections, which I ultimately decided to do.  My doctors and nurses listened to me; they trusted my judgment as an informed, engaged patient; and they lifted me up on the days when it all seemed too heavy a cross to carry on my own.

Not one second of that ordeal was easy.  But we did it, somehow.

My advice to those overwhelmed by anxiety about access to health technology in light of the UHC/MDT deal is that you will survive somehow, too.  It may not be enjoyable.  It royally sucks that such a violation of your trust as a consumer has occurred, and that your freedom of choice has been stripped away.  It is morally reprehensible that this is happening under the guise of expanding innovation; limitation of choice, in fact, stifles creativity at all levels.  You have a right to be angry as hell.  Lean on each other liberally.  Remember that there are people overseas, or even in our own backyards, who do not have access to insulin.  Our voices must lift them up, too.

Hard times boil down to the good eggs and the bad, the people who answer emails filled with desperation and suffering, the companies which accept responsibility and troubleshoot the issues, the patients who never stop advocating no matter how sick they feel, and the medical teams which have their backs.

Healthcare is a complicated equation.  But we are on the right side.

We are the people who care.

Medtronic and UnitedHealthcare, do you care enough to join us?

 

 

 

Milestones.

This week will be my final class before graduating with my Master’s degree at the end of December.  The saying about a weight being lifted is true.  As I handed in my final paper last week and my classmates hoorayed, happy to see one of their own crossing the finish line, I instantly felt relief.

Unless you live under a #doc Twitter rock, you know that I was on an emotional rollercoaster last week.  I second-guessed whether I would get my final paper done in time.  Mostly, though, that doubt was due to the anxiety of moving forward in life, of leaving behind the structure, love, and discipline that grad school has blessed me with over the past two years.

As much as I have complained about homework on the weekends, truth be told, I will miss the academic environment very much.  There is a definable purpose there, a working towards something greater than oneself, a joy of learning amongst peers and professors who are just as passionate about healthcare and making the world a better place.

Grad school becomes a part of one’s identity, and I am scared out of my mind to not cling to that role soon.  My go-to introduction spiel at cocktail parties has been, “I’m Ally.  I work fulltime at _____ and I go to grad school at night at _____ and have I mentioned how freakin’ busy I am all the darn time?!!”  As fulfilling as these different components of my life are, it is now time to put what I have learned to good use and to explore new opportunities- after taking a much-needed vacation.

My identity as a graduate student may be shifting, but I do not necessarily have to be lost.  Perhaps I have already been found, and that is what is so scary- those moments of truth where you reconcile who you are, with who you have been, with who you want to be.

Complicating such notions is the fact that today marks my one year shot-o-versary, or the anniversary of returning to a multiple daily injections regimen after a decade of insulin pumping.  I have beaten a dead horse over this, but in case you are new to Very Light, No Sugar: Insulin pumps are great.  Sadly, I experienced product defects with mine and watched my health slowly slip away as a result.  The pros of using injections for me, personally, outweighed the cons, so here I am.  Do what works for you.

My current apathy about the shots milestone surprises me.  In many ways I expected to be just as proud about the shots as I am about my impending Master’s.  But I’m just… not.  Shots are my new normal.  Some day that may change (diabetes cure, please!), but for now, this is what I am working with.

And to be honest, I think that apathy is a good thing.  It means that I have made peace with some of the previous bitterness, that I have chosen to chalk up the pump company’s ignoring of my email pleas as being due to an overloaded pump rep.’s inbox, even though I know in my heart that was never the case.

I now experience the freedom of insulin getting into my body every time I inject, and those #JerkFaces also known as ketones do not hang around much anymore.  I have proven to myself that I am stronger than I ever believed, and that it is good that we have many options in our diabetes management tool boxes.

Every day, I have access to life-sustaining medication, something I will never take for granted again.  Others are not as fortunate, and I am attuned to their suffering because my faulty insulin pump taught me what it feels like to lack insulin.  It is a brutal, desperate torment.  Only insulin can fix it.  And while I feel blessed to have escaped my insulin-delivery mishaps, I will always remember and pledge to help those who do not have access to insulin.

I recall emailing my doctors a week into our shots trial and implying, “Hey, I tried.  Time to call it quits and return to the pump?”  And I remember my dismay at their gentle urging to stick it out one more week, one more month.

Today- one more year- I am happy that I listened.  The difficult days are still here.  But the good days are back, too.  Any day not spent battling ketones on the couch is a day that I must be thankful for, and I am.  I just need to work on expressing that more often.

So here it goes:

I am thankful to have enjoyed the opportunity of receiving a graduate-level education.  During the days of my insulin pump saga, when the ketones were syrupy-thick in my blood and the couch was my home, grad school was the bright light that I could focus on.  I read and read and read and repeatedly told myself that one day I would feel better and have my degree.

Today, I am happy to be here to see that internal mantra come to fruition.  Thank you to everyone who has rooted for me along the way.  My gratitude is best expressed by leaving you with the prayer said on my long drive to Boston before difficult medical appointments:

“In every circumstance and in all things

I have learned the secret of being well fed

and of going hungry,

of living in abundance and of being in need.

I can do all things in Him who strengthens me.

Still, it was kind of you to share in my distress.”

-Phillipians 4:12-14

 

A 1 c.

My A1c was lower at my recent endo appointment.  Not by any earthshattering amount (and we still have a long way to go), but “lower” is enough for me right now.  In fact, my recent A1c was lower on a shots regimen than it had sometimes been while using an insulin pump.

I thought I’d write some overly-emotional, 2000-word essay on how much the lower A1c means to me being back on shots.  Instead, I’ll take my lack of wordiness as being one step closer to making peace with what happened to me and as a reminder to continue to advocate for others who need insulin.

Frankly, I am still bitter about how much I suffered due to defective insulin pump products.  A few tech glitches per year are understandable, as tech does not equate to properly-functioning islet cells by any means, nor should it pretend to do so.  But to have bi-weekly episodes of near-DKA due to tech issues is inexcusable.  It breaks my heart to think of other people out there who may be going through what I went through, who simply want someone to believe them and to make it all better.

Thankfully, through the support of the #doc and some topnotch doctors and nurses, I am still here, I feel alive again, and I am getting into a better diabetes groove on multiple daily injections.  The bruises are a visible reminder that diabetes does not go away no matter which treatment one pursues, but for me they are a small price to pay for the assurance that insulin gets into my body every day.

I’ve said it before and I’ll say it again: do what works for you, whether that be insulin pumping or injecting or artificial pancreas-ing or Afrezza-inhaling.  I just want all of us to feel good every day.  But I also want those who experience tech problems to know that they are not crazy or “bad” diabetics.  We are human beings; technology is technology; and, ultimately, #weneedacure. 

But what about the people who don’t have a plethora of options?  Having spent many days in bed with ketones when my insulin pump malfunctioned, I often find my thoughts traveling to Spare a Rose nowadays.  I will never take insulin for granted again.  When insulin was not getting into my body, I was like a fish out of water, slowly and painfully fading away.  Kids without insulin suffer like that each day.

We must work hard to improve their access to life-sustaining insulin. 

Diabetes is difficult enough to tame with insulin, never mind without it. 

Favorites and Forgiving Diabetes

My favorite post is one that mostly flew under the radar:  24. P.S. I forgive you.

This post describes how I chose to forgive diabetes for the bad and to reflect on the good I have received during my 24th “diaversary.”  While it was not my most popular post of all time, it openly represents my emotions on a day that is always bittersweet.

Stephen’s short yet powerful comment on this blog post meant a lot to me, as did another I received via Facebook from the mother of a diabetic child who thanked me for writing the things that her son could not yet articulate at a young age.  Those little moments make blogging so worth it.  We can use our words to connect with and encourage others who face similar obstacles each day.  #DOC in a nutshell!

If Beauty & The Beast participated in #SpareARose…

If you want the emotional side of why I think #SpareARose is such an important advocacy endeavor, please see here.

One more emotional plea for good measure: Ketones suck.  They shouldn’t exist; no one should have to endure that level of discomfort and danger.  Thinking of little kids across the globe suffering ketoacidosis while waiting for life-sustaining insulin that may not get there in time- well, it just gets to me.  It’s not fair.  Even if we can’t remedy their suffering overnight, it is our moral obligation to do what we can here and now to help them.

On the lighter side of things, I’ve been thinking a bit about Disney.  What if Beauty & The Beast had spared a rose?  They would have cut to the chase with living happily-ever-after a lot quicker, and they would have also spared us that annoyingly-catchy Gaston pub crawl song.  (Sorry it’s stuck in your head now).

Since we can’t rewrite a Disney film, let’s spare the rose for them now.  Let’s chase these ketones away from people who do not have the blessings of accessible insulin that many of us have each day.  We know how hard diabetes can be, even with various sophisticated tools of the trade available to many of us.  Imagine not even having the bare minimum in treating diabetes.  In 5 seconds with a few clicks of a mouse and $5 donated, we can give those less fortunate than us a chance at their own happily-ever-after’s.

Please spare what you can: the cost of your morning cup of coffee, a movie ticket, your favorite type of ice cream.  However you choose to find ways to give, please #SpareARose this February.

Thank you