Healthcare loop-de-loop

This blog post serves as a simplified example of the complex headache that is the “healthcare loop-de-loop.”  Ironically, I pledged to write about this topic last year as an offshoot of a blog about diabetes needles.  Today, I again blog about diabetes needles, and how many hoops we must jump through to obtain minimal elements of surviving diabetes.

Many have it more difficult than me, their basic health needs unmet.  Frankly, I have somewhat decent healthcare coverage through my employer, and I have also studied healthcare at the graduate level and understand its nuances.  My point being: Despite all of this, healthcare remains an untamed beast, from the lower administrative levels all the way up.  If I have it “good” and experience this, what about all of those slipping through the cracks merely due to circumstance?

The healthcare loop-de-loop reemerged last week when I went to refill an insulin pen tip prescription, which was promptly denied by my insurer.  (I use two different types of insulin pen tips- the 4 mm BD tips for Lantus and the 8 mm tips for Humalog.  My doctor and I found that the smaller Humalog volume was not being absorbed by my body with the 4 mm tips, so we begrudgingly opted for the larger 8 mm’s.  Your diabetes may vary.)

Allow me to further explain, via Twitter rant:

pen tips twitter1

pen tips twitter2

^ Because of the confusion about the needle length sizes and what had previously been refilled/what needed to be refilled currently, insurance flagged the new prescription as something to deny.  In reality, it was simply a new prescription for a different needle length, granted by my doctor to alleviate some pain from multiple daily injections.

pen tips twitter3

^ I cannot make lengthy phone calls at my job because my job duties would be compromised.  And I need to work for reasons of insurance and paying healthcare bills.  Many of us are in the same boat here.

^^ “This probably should’ve been a blog.”  …Yup, now it is.

pen tips twitter4

^ As maddening as this phone call marathon was, Spare a Rose puts it all in perspective.  Although our healthcare situation is far from ideal in the United States, we are blessed to have what coverage we do have.

 

At first I felt dramatic for live-tweeting my everyday diabetes grievances.  Later, I was pleasantly surprised by how many people validated my feelings, unfortunately having experienced similar irritations of their own.

The resounding theme was: This isn’t right.  Whatsoever.  Amen.

Healthcare is a complicated, multidimensional goliath.  I just so happen to love learning about it.  But when healthcare bites back at me, it is a reminder that I am still a little coffee cup in a big sea of healthcare coffee beans.  Socioeconomic status, insurance coverage, and corporate power are just a few of those beans playing in the healthcare game.  The stakes are high: Quality of health, and, therefore, quality of life, are on the table.

I recognize that my tiny roar may not jostle healthcare mountains.  Currently, there is too much bureaucracy and red tape to allow many of my suggestions to move forward.  But in order to do my part rather than sit back and complain behind the shield of my laptop screen, I must recommend some changes.  If they are heard outside of the confines of my own mind, then it is worth expressing them.

I will start small, with the insulin pen tip example:

“Hi, my name is Ally.  I have been type one diabetic for 25 years.  One day I am confident that there will be a diabetes cure.  We always keep that faith alive.

However, that cure is realistically still far away.  In the meantime, I will require insulin every day in order to survive.  This insulin should be affordable and accessible.  Anything less is morally reprehensible.  The same logic goes for any other life-sustaining medication for any other serious illness.  We can and we must do better.

If a type 1 diabetic is not using an insulin pump, he or she requires insulin syringes or insulin pens (glorified insulin syringes for ease of user experience).  Insulin will be delivered into the body through a needle at the end of the syringe or insulin pen.

Because I require insulin to live, and because I use injections rather than an insulin pump to manage my blood sugar, my skin must be pierced by needles every day until I am cured.  Insurance could make this more bearable by not causing obviously-necessary prescription refills to be a royal pain in the @$$.

The Endo clinic could edit their coding system, so that pen tips can be ordered by millimeters, rather than gauge.  No one likes to say, “Can I refill this 0.99784567325 X 54321 infinity pen tip needle, please?”  Just say 4 mm in your system.  Thumbs up emoji.

Kindhearted pharmacist who empathized with my worries over the insurance-endocrinology clinic ping pong battle deserves a coffee on my dime.  So does insurance representative who patiently worked through the mix-up in order to get my supplies.

Understandably, BD does not want to market their insulin pen tips as “8 mm LARGE, will leave giant bruises; 5 mm semi-large, still may bruise; or 4 mm, smaller but you’re still jabbing yourself with a needle!!”.  However, calling the pen tips “Short (8 mm), Mini (5 mm), and Nano (4 mm)” all indicate “small” in the minds of patients, providers, insurers, and pharmacists.  You can see the root of the miscommunication.

Below is a color-coded chart, created by yours truly, for future reference.  Feel free to disseminate to all parties involved here.  It will lessen monthly Advil bills.

BLUE = 8 mm   “Long needle.  Only intended for use by badasses.”  Lamely called “Short” in real life.


PURPLE = 5 mm  “Medium-length needle.  Sassy.”  Lamely called “Mini” in real life.

GREEN = 4 mm  “Small.  Dainty needle for dainty pain.”  Lamely called “Nano” in real life.

ALLY = happy that you listened

Happy Ally

Thanks for hearing me out.  Until the next prescription refill…

XOXO,

Ally”

 

 

 

 

 

 

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“I never meant to make you cry, but tonight / I’m cleanin’ out my closet.” -Eminem

My apartment could easily get selected for a TLC special entitled Hoarders: The Diabetes Edition. I have mountains of old supplies stocked up just in case the apocalypse ever occurs and I for some reason need a 6-year-old infusion set for an insulin pump that I no longer utilize…  (Note: Proper medical guidance instructs never to use expired supplies.  I am in no way recommending that you do so.)

I have trouble discarding diabetes supplies because they represent my lifeline, even if they are expired.  The thought of running out of supplies freaks me out.  Temporary relief arrives when my mail order pharmacy prescriptions knock at my front door, providing life in predetermined 3-month packages per my insurance provider.  But what if I drop and shatter a vial of insulin accidentally?  I may need my fridge stockpile to get me through until my next order.  Most of us are privileged enough to obtain medication through various means, however much of a longwinded telephone loop-de-loop headache that process may render.  If we lived somewhere else or during some other time, we may not have been able to count these blessings.  My bedroom’s diabetes supply closet is a constant reminder of this privilege.

There are certain items that I can’t bring myself to throw out, but probably should.  I returned to multiple daily injections in December after going through the hardest time of my life- a period in which the only type of infusion set that would work with my body type just so happened to have a product defect in multiple lot numbers.  I spent a majority of my time on the couch chasing ketones and brainstorming with insulin pump company representatives and my medical providers as to how we could correct this problem.  I fought going back on shots tooth and nail, bitter that an infusion set component measuring only a few centimeters long could have such dire effects on my health when it was not functioning properly.

“My quality of life will be ruined on shots!” I exclaimed.

“Can you honestly tell me that you have much quality of life right now?  You’re on the couch with ketones every day fighting for your life,” my wise doctor replied.

And so I finally caved and returned to a Lantus and Humalog regimen.  It was rocky at first, but I am now enjoying my time (mostly) ketone-free.  The blood sugar management still has its ups and downs, an inherent trait of type one diabetes.  There are days when I miss the insulin pump’s fine-tuning aspects wholeheartedly.  I still glance down at my waist to check the time on my pump from time to time, only to discover that what was once such a major part of my life is not there any longer.

When I first transitioned off of the pump, my resentment was palpable. Screw you, pump! I’m moving on! This was a mental game in which I tried to convince myself that this was the right move.  A majority of modern day diabetics use pumps, and I felt crazy that this was not a viable option for me.  Yet time and time again, my infusion set changes proved that this was not working for me personally.

Subsequently, I grieved the pump’s loss under a mask of anger and sarcasm.  During some particularly emotional days, I still think it’s Halloween mask time.

Yet after this struggle, there remains a part of me that cannot bear to throw out the pump supplies.  They have defects, so I cannot donate them to charity for fear of putting someone else through ketone hell.  Instead, they crowd my coat closet by the front door, my bedroom closet from floor to ceiling, the space under my bed, and other spots below stacks of grad school books. I might need these supplies again one day, right? They are a lifeline to another time, another method of managing this jerk of a disease.

Perhaps I will try again.  Not yet.  But perhaps.  The pain is still too raw and we still have too much work to do on the shots before a new decision can be made.

I would be lying if I said that I am not still processing my frustration and disappointment in the entire faulty infusion set situation.  Heck, I’ve certainly blogged about it enough.  But I am more cognizant of the concept of forgiveness and enjoying the present moment now.  I saw firsthand how quickly health can change, what it feels like to watch yourself dwindle away into nothingness.  If it was not for determined doctors and nurses who believed me and did not give up, I may not still be here.  But I am here, so I need to make the most of this life.

Just in case I ever need the insulin pump collecting dust on a shelf, its infusion set and reservoir packages will decorate my room for now.  Whenever I move to a larger residence, I will box them up and put them in a storage closet, packed away neatly with the other memories of my life.  Out of sight, out of mind.

Honestly, though, whether insulin pump enthusiasts or shots supporters, we do not need bigger apartments with huge walk-in closets.

What we really need is a cure.

pump boxes

“Shots, Shots, Shots, Shots! Everyyyybodyyy!!”

(Thank me later for getting that LMFAO classic stuck in your head.)

May 6 will mark six months since my return to multiple daily injections (MDI), or, as I like to say, “shots.”  Let’s call it like it is, people.  It’s sticking a needle in your arm, butt, back, stomach, leg many times per day to deliver life-sustaining medication.  It is not a cure, but it gives us life each day.

At a recent doctor’s appointment I proclaimed, “This rollercoaster isn’t working.  I need to return to the pump!”

To which my doctor countered, “And you told me the same thing about the pump before you went back on shots, Ally!”

I responded with a stunned face that only a googley-eyed emoticon can convey.  My doctor was right.  Diabetes is not as simple as insulin pump versus shots versus Afrezza versus whatever floats your boat.

If I have learned anything in the past six months, it is just how different everyone’s diabetes is and just how different our treatment methods may be- whether out of personal choice or simply out of necessity.  I’ll give another plug for Spare a Rose here: Most of us in the #doc are blessed to have any access to insulin, never mind the added bonus of having some flexibility in treatment options.

With that said, I know I seem like a broken record about the insulin pump.  I want to set things straight here once and for all, while providing an update about my shots journey for those who may be interested.

Insulin pumps, when functioning optimally, are amazing devices.  Going on the pump in high school opened up a whole new world to me.  My parents breathed a sigh of relief that I could enjoy being a dorky kid with a bit more freedom back then.  There are things that I miss immensely about insulin pumping: fine-tuning insulin doses, temporary basals, basal adjustments in one minute flat, carb-count/correction factor/insulin on board “wizards,” stability in blood sugar values on the good days.

If the pump works for you without many issues, all the more power to you. I want you to use whatever makes you feel healthy and happy- the same goals that I want for myself. In my rare case, going on shots had to serve that immediate interest in order to save my health. Do what works for you.

You can achieve a healthy lifestyle on shots, but it is more of a clunky, awkward sort of dance.  Once that Lantus is injected, it’s there for the day.  On Friday, my pancreas decided to rev up a notch (sarcasm), and for some odd reason I could not get my blood sugar to rise all day despite having taken the same dose of Lantus that I take every single day and hardly bolusing Humalog.  I force-fed myself almost all of the leftover Easter candy to no avail.  Good Lord did I miss the temp basal feature of the pump then! I longed for the personalized touches of modern technology that brick and mortar insulin injections simply do not afford.

I would ultimately like to ease into an “untethered” regimen of background Lantus in case of pump failures coupled with insulin pump usage again. However, this is quite complex, and we are not quite there with the shots yet. More details need to be worked out in terms of my basal and bolus plans. We are not settled into our comfort zone at this time, but we will get there.  For now, we are enjoying the fact that insulin is getting into my body without technological glitches causing ketones each day, a freedom that I will never take for granted again.

Many topnotch brainiac doctors have looked into my pump issues. We know that the product did not work for me personally. But we also know that a pump-centric solution has not yet been provided. Right now, we do not need to add another factor to the equation. We’ll give shots a shot (see what I did there?) for another few months, at least.

I find myself daydreaming about a cure so often now: the party on the tropical island with the entire #doc; the sugary drinks consumed without having to stop and bolus- whether that be via insulin pump or shots; the happy kind of tears.

As a child when that elusive diabetes cure was “ten years away” (cue inside diabetic joke laughter), my father used to tell us about the enormous cure party we would have. There would be a table in the middle of the front yard with a sledgehammer on it. We would smash my blood glucose meter, syringes, and other diabetes supplies into tiny pieces to signify victory over a vindictive disease.

The sentiment was well-intentioned, although today I must admit that I laugh a bit at that particular daydream. If I were cured tomorrow, all of those diabetes supplies would immediately be donated to people who needed them in the interim. The supplies have nobler uses than being crushed by a sledgehammer.

We should be thankful for the supplies that we have keeping us alive right now. If an insulin pump does its job for you, perfect. If Afrezza is your drug of choice, inhale away. If shots suit you better, go for it. However you choose to do so, just fight the good fight until there is a cure.

Please keep those cure daydreams alive by continuing to advocate so well. #weneedacure