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.

 

 

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.

 

 

 

 

Whole Milk With The Disclaimers

This will not be my most popular blog post ever.

 

You may not agree with me.  That is okay.  In fact, it is a good thing.  If we all nodded our heads along to the beat of the same drum in this world, well, we would be a boring orchestra.  Renza wrote a great piece on this notion recently, which can be found here.

One of the largest issues we face in the United States today is the “battle of the egos.”  We see it play out on our Facebook newsfeeds each morning:

“I’m voting for so-and-so and I must be right because it’s my opinion and I said so and I can scream louder than you!!!”

Yes, we have a right to say such things.  But do we really need to completely write off the other side of the opinion in the process?  If we do, quite frankly, we are only hurting ourselves.  Very rarely in life are issues so cut and dry, 100% right or wrong.  When politics falls into the gray zone, which it so often does, our greatest hope for the best world possible is to hear and consider all opinions, to put aside our personal biases and to think about what truly matters.  We are way too quick to judge.

“He looked like a thug.  He must have done something wrong.  He would have shot first.”

We do not always pause to think of the psychosocial reasons why he is in the wrong place at the wrong time, or why we are in the right place at the right time- safe from injury or premature death, judging from afar.

Or, we roll our eyes dismissively, choosing to believe a social media rant from someone who has never seen combat, or public service in a rough neighborhood:

“The cop had more than a split-second to make a life-or-death decision; his life, or the alleged suspect’s?!  He doesn’t go home at night sick to his stomach about taking another’s life, whether or not the the law supports his defense…”

We do not always concede that maybe, just maybe, in this particular case, we are speaking of a human being who perhaps acted in fear, rather than hatred.

At one point or another, we are all guilty of not placing ourselves in the other’s shoes.  It is easier for us to say that one side is 110% wrong, and we are 110% right.  If only morals and ethics were so mathematically easy…

We do not always think about how unique individuals are, how we cannot check them off like bubbles on the SAT, fitting a prescribed correct answer to each situation.  Maybe there is none.  Let’s sit in the scariness of that idea, together.  Let’s be more loving and considerate than we have been as a society in recent weeks.

 

Admittedly, I have been disappointed in the diabetes advocacy world for similar reasons of us not seeing all sides of the equation lately.  There are days where the #doc rallies and we do something that is so obviously good: honoring Kycie Terry this month, for example.

Regularly, we laugh together, cry together, share our lives with diabetes together.  This is what makes us tick, what gives a distinct purpose to this disease in which we are, despite it all, somehow able to rise above.

My concerns, though, echo Tom Goffe’s wonderful post regarding the impending FDA decision on potentially dosing insulin based on Dexcom continuous glucose monitors (CGMs).

***(Disclaimer: I am not a medical professional; do NOT consider any of this blog post to be medical advice intended for treatment purposes.)

My personal opinion on diabetes management is more of a Libertarian view, if we want to talk politics.  I am perfectly okay with individual patient-centricity in disease management.  Diabetes falls on a spectrum of manifestations; what works for me, may not work for you, and vice versa.  If you want to dose according to Dexcom and you are comfortable doing so, by all means, that is your prerogative, and I truly wish you all the success in the world.

Although I no longer use an insulin pump due to a freaky product defect hullabaloo that I encountered, I am happy for all of those who still have access and great results from insulin pump technology.  That same mindset goes for those who experience phenomenal Dexcom CGM accuracy and ease of dosing insulin accordingly.

Every great innovation in society has come by those who are brave enough to take risks.  Think no further than the Open APS and #wearenotwaiting folks in our own community.  Their courage, creativity, and selflessness are beyond measure.

My #DoseWithCGM worry, though, begins with this being a rushed decision.  CGM technology is not quite there yet in my opinion, and to have a trusted federal agency say that it is- under pressure from one side of the equation, rather than all sides- is a slippery slope.  

Dexcom is- again, in my own opinion- the most innovative diabetes company in the market right now; I am absolutely confident that their technology will only go up from here; but we should not compromise safety and swap out access to other products in the interim.  Generally-speaking, the government can curtail efficiency in health tech, but this is one rare occasion where it serves as a proper check and balance.  As far as CGM dosing, don’t ask, don’t tell; do whatever you want (as an informed, experienced, safety-focused patient), but leave the government out of it.

There are the obvious physical dangers to insulin dosing, at any time and using any product as a baseline judge of BG; diabetes can be a conniving JerkFace.

Sure, I have 25 years of T1D under my belt and have a good sense of the disparities between my CGM’s interstitial fluid reading, and the blood sugar reading of my meter.  But what about a newly-diagnosed family?  What if Mom boluses 7-year-old Jenny based off of the CGM’s 300, when she is really 180?  What if she is advised that this is an appropriate treatment approach by a federal agency set in place to keep her safe?

Sadly, insulin can be as life-taking as it can be life-preserving, and the reality is that it can sway from either extreme quickly and easily- through no fault of the patient’s or caregiver’s.  This disease has a mind of its own, and even technology can never truly replace a fully-functioning pancreas.  Again, #weneedacure.  A real cure.

“I guess if you ate low carb and had a steady line at 100 all day, dosing off of CGM wouldn’t be that bad considering the tiny boluses,” I said, shrugging my shoulders.

“Actually, I think that could be more dangerous.  There’s less of a BG cushion if something goes wrong,” a doctor replied.

Very true.  That, or what about the T1Ds (myself very much included), who are not always smooth sailing at 100 mg/dL all day.  Sometimes you wake up with a 55, rebound up to 224 when your liver releases sugar as the juice kicks in, correct and go back down to 78, eat lunch and sit at 162 for awhile, and  then somehow see a 340 by dinner because your menstrual cycle begins and unleashes hormonal hell on your body.  How in the heck can we ever expect a machine to keep up with that?!!

While I have seen the argument about meter reliability, I find it a weak one.  Let’s attack the issue at the root cause: meters need to improve.  But, they are still a better, more immediate guide than interstitial fluid ever will be.  Together, the two are a wonderful pair, showing us real-time data, trends, alarms, and so on.  I am not knocking either option, but I want to ensure that I have proper access to both in the long-term.

When I was normal person sick (NPS) last week, my CGM could not keep up.  Neither could I, but I used all of the tools in my toolbox, to include my own diabetes intuition, to get out of the murky waters.  Thankfully, I manually checked my blood sugar before dosing insulin at bedtime:

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I in no way want to stifle innovation by expressing this opinion.  I admire (and consider as friends) many of the advocates who are fully in support of this CGM dosing proposal.  I also respect the major diabetes organizations which are onboard.  Despite not agreeing wholeheartedly with their rationale in this case, I have no doubts that they want to see a better world for all diabetics.  We all do, in our own ways.

My experience in healthcare leads me to believe that this decision will ultimately restrict our access to test strips, as insurance agencies will look to cut costs.  And heck, as business leaders, they should; the ACA rewards and encourages cost reduction, and many consumers supported these measures vocally and at the polls.  Regardless, this is beyond anxiety-provoking for so many of us.  Test strips are ludicrously expensive already, and to imagine that we may be limited to a few checks a day to calibrate an imperfect CGM apparatus is maddening and disheartening, to say the least.  Pass the coffee.

Imagine the current healthcare loop-de-loop.  Imagine the Medtronic/UHC debacle.  Actually, do not imagine- because we are already living it.  And we know how unpleasant it is.  Now pretend that your insurance has restricted your test strip supply, and you do not feel comfortable dosing via CGM.  You have to get a letter from your endocrinologist, or perhaps a mental health care provider, indicating that you need more test strips to manage your chronic, lifelong condition which will never go away until there is a real cure.  Nonetheless, you have to jump through this paperwork hoop every 3 months, missing time from work to argue with suppliers about why you need life-sustaining medical supplies.  And maybe insurance will grant you 7 test strips per day instead of 2 when all is said and done…  While this example is (hopefully) extreme, it is still possible.  And it’s scary as heck for many of us.

“But Medicare won’t cover CGM.  Or how will this affect the Libre?”

Again, I think we are attacking the wrong sources- deflecting one issue onto many others.  By potentially limiting a test-strip-saavy demographic in the name of providing wider access to all is a total cop out.  Instead, hold our government more accountable.  CGM is a reliable tool, illustrated to be life-saving and absolutely quality of life-improving.  For these reasons, Medicare folks (or swap in folks who want Libre access), deserve to have better technology on hand.  But to substitute one option for another is silly, given that both CGMs and blood sugar meters have plenty of room for improvement in the current market.

Online polls and petitions do not represent the whole.  From a science and data standpoint, they illustrate a sample demographic from which we can make some educated-inferences:

1.) Most of these people have computer/smart phone/internet access.

2.) This enlightens us as to their ballpark socioeconomic status.

3.) That gives us some idea of their access to and quality of healthcare.

Convenience samples are fine as long as biases are disclosed.  We must say upfront that this is one side of the very large diabetes equation, and that this sample is not representative of The Whole.  While we cannot all leave our fulltime jobs or school courses to lobby in front of Congress or the FDA, those representing us should be enlightened as to how we all feel, and should act accordingly.

As Erin Gilmer has respectfully pointed out on numerous occasions, there are marginalized demographics who cannot obtain the most basic of diabetes care: dental visits, for example.  Yet we are up in arms over insulin pump collusion.  Or, in this case, CGM dosing.  The marginalized folks are not likely to be invested in this discussion because they do not have access to what is at stake; heck, they do not have access to the bare minimum.  While we raise our voices, we must take caution not to further drown theirs out.

In many of the presentations of the CGM dosing issue on social media, I saw big fish in the diabetes pond introducing the topic as, “Here, this is good, hop aboard and get involved!”.  This mindset is positive, for sure.  But we are not whole if one of us is not heard, if different viewpoints are not given adequate opportunity to be discussed.

What about the school nurse who wrote into the debate on a Facebook status post?  Did we listen when she said she would be uncomfortable dosing a child in her care at school based off of a CGM reading?  Do we care?

On the flip side, if someone has great CGM accuracy and wants to lessen the finger pricks his type 1 toddler endures, am I hearing him out?

 

Que será, será.  Whatever will be, will be.  Ultimately, a decision will be made regarding the FDA and dosing with CGM.  But we should all have a voice in it.

This is a long post and I surely will go to bed and realize I left out a few other big points.  But this is food for thought for now.  Although I am a little fish in the diabetes pond, it is my moral responsibility to use whatever platform I do have to improve life for diabetics.  In my personal judgment, voicing this opinion has merit towards that cause.

I also promise to be upfront about my own diabetes biases.  In the past, I have gotten on my soapbox and pledged up and down the river that we need a cure.  But perhaps I have not listened to the other advocate on the soapbox next to me, who may be more focused on an artificial pancreas and who may feel that it is too painful to believe in a cure after years of disappointment.  I have to respect that voice, too, because that person is part of The Whole.

So, here are my disclaimers:

1.) I can only represent my own opinions, but I hope that I can connect with others and help them by writing authentically and openly- whether we agree or disagree on various points.

2.) I will always hold out hope for a diabetes cure.  Even if it does not benefit me in time, I want future generations to live in a better world.  My blog focuses on this concept often, but please know that I respect everyone who strives for a better world for people with diabetes, however that world may be achieved.

3.) I will do my part to be more inclusive of The Whole.  Firstly, I will feature more about cystic fibrosis-related diabetes (CFRD) on my blog.  The CF community has so much to offer, and they have a valid seat at our diabetes table given CFRD/the risk of CFRD.  Let’s learn more together.  More to follow.

 

Too much skim or 2% milk leaves out a talented, diverse sample of people with diabetes.  For the time-being, instead of taking my coffee very light (with cream), no sugar, I pledge to focus more on The Whole.  

Thank you

 

 

 

 

 

 

Spare.

Spare.

Dictionary.com defines the verb as “to give or lend, as from a supply, especially without inconvenience or loss.”

At that rate, why wouldn’t we spare roses this February, and perhaps all year long?

The premise is simple: click here, donate $5- the cost of a rose you may normally give to a loved one on Valentine’s Day (or, set up additional monthly donations if you can!), and save a child by providing life-sustaining insulin through your donation.

If you are reading this blog post from a cell phone or a computer screen, chances are you have $5.00 to spare.  If you do not, that is okay, too; instead, please help to spread the word about #sparearose.

What is $5.00 worth?

-one medium coffee and one donut from your local coffee shop

-half of a movie ticket  (What use is that?!)

-crappy red wine and a headache you don’t need, anyway

-an overpriced bottle of water at a sporting event

 

*****-And oh, yeah, A LIFE!!!!!!!!

 

Close your eyes and think of a time when you did not receive a viable amount of insulin for a few hours.  We have all been there: a kinked insulin pump cannula, diabetic ketoacidosis (DKA) during diagnosis or severe illness, or whatever the case may have been.  We have felt the heartburn and nausea of high ketones, the unquenchable thirst, and the longing for comfort that takes too long to get there.

For most of us, those days represent acute instances of distress.  Scary, yes.  Life-threatening, sometimes.  But if we are reading this blog post today, we somehow escaped diabetes’ wrath and are feeling better thanks to the insulin taking up all of the shelf space in our refrigerators.

Without insulin, kids in developing countries know that type of suffering intimately.  Those of us who are more fortunate cannot lay our heads on our pillows at night and be okay with that.  We understand diabetic ketoacidosis.  We have a moral obligation to curtail DKA as best we can before it senselessly takes any more lives.

If my words come off too harsh here- well, it is a risk I am willing to take.  If our moral obligation leaves us momentarily uncomfortable in our realization of its truth, so be it.  These kids are more than uncomfortable as they await insulin that they should have to begin with.  We owe it to them to do the right thing.

If you can, please spare a rose this February.  Through the simple act of sparing, we can dry so many tears.

Thank you

spare a rose 2015

 

 

 

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. 

Adirondack Chairs in the City

No, it’s not a dramatic Nicholas Sparks novel.  It’s just what happened yesterday.

I’ve been waging an epic battle against the “Hormonal Hell Highs”- that thing that happens for the younger female crowd once a month and is emotionally and physically draining, diabetes aside.  But then diabetes hears the terms “emotionally and physically draining,” and it is all about joining the party.  It’s diabetes.  That’s what it does.  It’s just a fact.

If there were a diabetes Tampax commercial, it would show a bunch of insulin-pump-wearing, happy women prancing around the neighborhood with picture-perfect CGM graphs.  Let’s get with the program here: That isn’t reality for most of us.  Not many things are as frustrating as doing everything you’re supposed to do- checking your blood sugar often, increasing boluses, raising basal rates, trying to keep Grumpysaurus Dex in its lair, and more- and seeing that steady yellow line indicating “high” on the CGM for hours and days on end.  Some months are better than others, and in typical diabetes fashion, what works one month rarely applies to the “hormone play date” of the next month.

For someone who is accustomed to working hard and seeing that hard work pay off in terms of job opportunities, GPA, and other objective measures of “success,” it has been a tough pill to swallow- rather, a painful injection of insulin to take- to make peace with the fact that I am trying my best and those blood sugar numbers, although elevated, are the best that I can do right now.  I am not rolling over and letting the diabetes waves swallow me.  Instead, I am throwing on the insulin life preserver and trying to stay afloat until the hormonal college mixer going on inside of my body quiets down.  It is okay to have those moments of hormone-fueled tears, but I still have to ride the diabetes wave and get back to shore safely.

*****

Yesterday at work, many of us participated in certification testing to measure how well we understand the medical and legal aspects of our job.  It is about as un-fun as it sounds, but it has to be done.  We all filed into the office like nervous teenagers before the SATs, coffees freshly brewed and pencils newly-sharpened.  The test was divided into morning and afternoon sessions.  After finishing the first half of the test, we had an extended lunch break with a heavy emphasis on coffee-refueling at the local shop.

My first word upon leaving the test-taking haze was not “coffee,” though.  Instead, it was “LANTUS.”  I went to the bathroom, jabbed the needle into my backside, and felt immediate relief as I watched the life-sustaining insulin leave the pen and enter my body.  Must. have. insulin.

“Work Mom” texted me about getting coffee, but I neglected to respond due to the Lantus shooting up session.  (The Millennials crowd truly cherishes our connections with “Work Moms,” those kind souls who keep a watchful eye on the young professionals in the office.)  My Work Mom later found me in the coffee shop, where she knew I would be all along.

“Do you want to get out of here and go for a walk or something?” I asked.

And so we strolled through Providence until we found the perfect resting place: Adirondack chairs in the middle of a local college campus.  We parked ourselves there and chatted about anything and everything, never pausing while I checked my blood sugar or injected Humalog into my abdomen.  Work Mom’s empathetic presence in the Adirondack chair indicated that she understood what I needed to do and that diabetes did not have to interrupt anything in that immediate moment.  Amen. 

Here’s where I’ll sound like Nicholas Sparks in a corny, yet heartfelt, manner: How often do we get to pause and enjoy those little moments, removed from the hullabaloo of the world around us?  As college kids bustled by our Adirondack chairs on their way to the dorms, we simply soaked up the sunshine and the good company of one another.

I am not happy that diabetes has run my patience rather thin during this time of the month. But I am thankful that this time around, I do not have guilt about how I have handled the highs and the lows.  It does not mean that I have failed if I feel like crap sometimes.  I am trying my best.  Right now that means being present in the moment, sipping on coffee in the Adirondack chairs.

Thanks for the perspective, Work Mom.

“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

Thumbs Up for the New Endo

Transitioning from one endocrinologist to another can be emotional and stressful.  We’ve been over this.

As many people expressed similar anxieties about perhaps having to switch doctors at some point in time when I first blogged about this topic, I wanted to provide a quick update on that front:

Today I met my new endocrinologist, as my former endo relocated far away.  New Endo was kind and understanding.  There were no lectures, which automatically earns her many (sugar-free) brownie points in my book.  We set realistic goals which will help improve quality of life a bit.  (Think along the lines of decreasing basal rates to avoid treating multiple lows in the early morning hours with old Christmas candy stash goodies.  And of course, I renewed my vows to put on my brave face and try to take more insulin each day.)

A lot of this stuff seems so obvious now that I’m writing it down.  But it helps to just speak it out loud to a knowledgeable endo’s ears and to have her input in making adjustments which can have big impacts on my health.

We’re going to get where we want to be in terms of my diabetes management eventually.  It has been a year of SO many big changes, but I am learning that change can be good, especially if you have the right people in your corner helping you to keep on, keepin’ on.

Insulin Angels in Hotel Mini Fridges

Please note: I was asked as a member of the diabetic online community to provide feedback on Insulin Angel and I am happy to do so.  I did not receive compensation in any form for writing this blog post.

Let’s be honest, no one designed hotel mini fridges with the intention of storing insulin at safe temperatures.  I was always under the impression that the original hotel mini fridge engineer wanted just enough tilt when opening the door to rustle a few alcoholic beverages and drive up your bill.

When most people open a hotel mini fridge, their objective is to quench their thirst.  My main concern, however, is just how cold the beverages in the fridge may be- because if the beverages are borderline frozen, well, so is my insulin.  You’ve all heard enough of my griping about ketones to last you a lifetime, so I’ll spare you the story this time around.

Bottom line: We all know that we need insulin to survive.  Insulin that is too hot or too cold compromises the efficacy of the medication, and, therefore, endangers our health.  Forgetting that insulin in the fridge when going out for the day is not highly recommended, either.

Mike Hoskins of Diabetes Mine provided a detailed take on Insulin Angel, a product which will alert users to unsafe insulin temperatures and inadvertent moments of forgetting to carry insulin by utilizing that handy dandy thing called modern day technology.

While I have not personally used the Insulin Angel product yet, I feel comfortable stating why I think this concept has potential:

1. Insulin Angel’s marketing strategy catches my attention because they are reaching out directly to those who their product will help: the diabetic community.  Through crowdfunding, diabetics will drive this idea.  Insulin Angel understands their consumers because they understand life with diabetes.

2. Have I mentioned how I just want a nice cold iced tea from the hotel mini fridge without thinking twice about insulin temperature yet?!

3. Fun activities like going to the beach in the summer should stay carefree.  Let Insulin Angel do the worrying about insulin temperatures for you; you can correct any potential insulin temperature problem early on, rather than suffer the consequences later.

4. This product offers possibilities in a world that is not always diabetes-friendly. 

As an example, diabetes is often considered a medically-disabling condition of military service.  Although we have heard of people with diabetes who are able to remain in service in some capacity, one big reason why the military and diabetes don’t jive well is because of the need for insulin refrigeration; this proves technically-burdensome on deployments.

While I in no way, shape, or form am implying that Insulin Angel’s product will be helpful to allow diabetics to join or stay in the military (nor do I want to start a debate here), the main takeaway in raising the example is this: Previous/current limits on diabetics- whether self-imposed or societally-imposed- may one day be lessened due to this product.

Insulin Angel has the potential to give us another useful tool in our diabetes toolkits.  It eliminates one of the many “I wonder if I’m high because of ______?” factors in that we can cross “unreasonable insulin storage temperatures/forgetting my insulin at home” off that list.

Think of it what you will.  In the meantime, I’m ordering my #SaveHotelMiniFridges bumper sticker.