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

 

 

 

 

 

 

If Diabetes Were A Cinnamon Cure

 

I’m a big fan of Katy’s wit and attitude in Bigfoot Child Have Diabetes, so I wanted to stay true to her suggestion for today’s food-related theme for DBlog Week.  Alas, I am embarrassed to say that I am on the “grad school diet,” a fad that I do not endorse for full health benefits.  It amounts to guzzling coffee at all hours of the day, eating handfuls of peanuts in the car while driving to and from work/school, and scarfing down frozen dinners at 10:00 pm.  Ahh!!

Therefore, I’m playing the Diabetes Personified wild card today, but I’ll keep it food-related! 

One more disclaimer: As a former college English major, I must admit that my take on this exercise does not 100% meet the definition of personification.  Cinnamon “cures” are not people, but they do affect people’s attitudes.  So, please play along with the diabetes-cinnamon analogy here.  Mostly, I just really freakin’ wanted to write this!

If diabetes were to take the form of a cinnamon “cure” concoction that actually worked in a non-spammer world, would I pour it in my coffee and watch the Dexcom CGM line even out with each sip?

Would it fade that scar on my right lower back?  The one where the needle didn’t quite stick in all the way- so the nurse had to fiddle around with it until she could secure it with medical tape?  When she quietly asked if she was hurting me as I fidgeted under her grasp, would I still mutter “It only hurts a little bit” through clenched teeth?  Would my doctor still look on and pretend to believe me, mostly for the sake of my stubborn pride?

Would all of the needles and sleepless nights get swept away in a sea of cinnamon?

Would we inhale it like Afrezza, or tell Uncle Brad to “Pass the cinnamon, please” at Thanksgiving dinner?

Would we keep calm and bolus on?  Or would we keep calm and cinnamon?

If diabetes were a cinnamon cure, would insurance still want Prior Approval?  Would we be limited to one dab of cinnamon per month instead of the five that we might require to live healthy lives?  Would paperwork swallow us whole?

Would some people not have access to cinnamon?  Would we advocate long and hard for them?

What would the spammers say when the cinnamon cure suddenly worked for diabetes as advertised, its years of falsehood erased by a magic wand in the sky?  Would the spammers tap the Staples “That was easy!” button in unison?  Would they move on to the next groups- the cancer and the cystic fibrosis heroes?  Would they diminish the battles that these human beings face each day by promoting a “cure” so ludicrous that society rationalizes its way out of the burden of easing their pain?

“It’s your fault. You didn’t eat the cinnamon.”  And just like that the moral compass gets readjusted!

Would Wilford Brimley still say diabeetus?  Would he order a very light, extra cinnamon coffee at the drive-thru before breaking out in a dance?  Because of course he still has two functioning legs. He didn’t lose them like your grandma’s best friend’s tabby cat’s brother’s cousin did because he “failed” to “control” an autoimmune disease that doesn’t like to follow orders.  He was cured by cinnamon.  You heard it here first!

Would the #doc become the #coc- the Cinnamon Online Community?  Would we have weekly #CSMA chats?  Cinnamon Social Media Advocacy, it’s what all the cured kids are doing!

What happens to a cinnamon cure deferred?  Does its powdery dust make an audible “poof” as it dissipates?

#IWishPeopleKnewThatCinnamon is silly, mon! (Said in best Jamaican accent)

Cinnamon pleases the taste buds, not the islet cells.  If diabetes were as simple as a cinnamon cure, we wouldn’t enjoy all of the hidden blessings that we have grown to love through the complexity of managing this disease as best we can. It’s just not the same having a Kerri / Cinnamon, a Cinnamon Unconference, a @CinnamonCherise, a #dayofcinnamon Symplur hash tag, or a Cinnamon Hands Foundation- to name a few.  The real life diabetes versions of these people, organizations, and events bring far more goodness to the world than cinnamon ever will. Perhaps our virtual paths would not have crossed if silly cinnamon cures actually worked.  #Coc just doesn’t have the same ring to it as #doc, unless your mind is in the gutter!

Occasionally I sprinkle cinnamon in my coffee mug.  Then I check myself in the mirror.  It doesn’t hurt anymore, but the scar is still there on my back, a reminder of a disease that cannot be remedied by simple measures like cinnamon, a visible testament to the care I receive from others despite the pain, part of what gives us perspective and gratitude for the good days.

The needles are still required.  There will be more tears, more laughter, and more perspective gained along the way.  A sprinkle of cinnamon cannot make up for the other ingredients which have shaped our lives.  Wacky cinnamon cure theories do not do justice to the crosses we have carried.

There are no Nutrition Facts on the packaging that is life with diabetes along for the ride- not the other way around.  When we come together as a community, things are sweet enough to enjoy this #doc life for what it is without the artificial flavoring of ridiculous cure remedies.

For now, I’ll take one large coffee.  Very light, no sugar.  Hold the cinnamon, please.

Diabetes Campfire Stories

“Back in my day, we used pork-sourced insulin when I was diagnosed!” I may one day proclaim to my future grandchildren.

At this point in time, there will be a cure for diabetes and they will laugh off my fireside tales of the struggles of the past, oblivious to the hardships that generations before them have faced. Honestly, that’s how it should be if we aim to improve the world during our brief time here.

So many changes have occurred in diabetes treatments since my diagnosis just before my third birthday in the early 1990s. And I have not endured half of what rockstars like Supreme Court Justice Sonia Sotomayor have lived through regarding diabetes management processes! Change does not have to be a comparison battle, rather it should grant a clear perspective of just how blessed we are today despite a conniving autoimmune condition.

Almost one year ago I began using the Dexcom CGM (continuous glucose monitor) in the hopes of alleviating anxiety surrounding my diabetes. From the first day, I was absolutely floored by this product. Sure, it is technology and it is not the same as a properly-functioning pancreas. I have to carefully prep my insertion sites to avoid blistering rashes. And I am still waiting on my winning lottery ticket so that I can make my first purchase: a fulltime nurse who will check my blood sugar at night and will perform Dexcom insertions on me so that I do not have to do the one-handed pretzel move to get a sensor in my lower back.

Despite these minor issues, Dexcom is, in my humble opinion, the best quality product on the diabetes market. Due to many diabetes hurdles this year, I cannot boast of an A1C that drastically improved while on Dexcom, but I can say that my mental anguish regarding diabetes has lessened substantially thanks to Dexcom’s accurate readings. That, my friends, is half the battle. I still fear overnight lows, but I am much more confident that I will wake up thanks to Dexcom rattling and alarming from an empty coffee mug on my nightstand. I owe my life to Dexcom, as do many others. In the past, we all had to make do with what we had, and plenty of us survived prior to CGMs. But Dexcom is an added safeguard that makes life less complicated. It is the sort of change that is easy to embrace.

The Dexcom Facebook group was my true introduction to the diabetic online community. For the most part, this group is wonderfully supportive and non-judgmental- a place where we can all feel at home. We are able to share our scary moments and our triumphs with an audience who “gets it.” As I ventured off into the blogosphere, I fostered genuine friendships with others in the community, but I will always have Dexcom to thank for being the springboard to finding some of my largest supporters in fighting diabetes.

In grade school my mother used to drive to the auditorium to check my blood sugar every day at lunch. These were the infamous NPH and R days, and lunchtime was primetime for lows. My mother recalls seeing me file into the cafeteria with the rest of my class looking white as a ghost; she does not know how I had enough energy to even walk on some occasions when my blood sugar hovered in the 30s and 40s. There was no Dexcom back then to alert my teacher to the rapid decline.

On the playground in fourth grade, Michelle spoke the unfiltered truth. “I’m sorry that I didn’t invite you to my sleepover for my birthday. You could come if you weren’t diabetic, but my Mom doesn’t know how to take care of your diabetes so you can’t sleep over.”

In fairness to Michelle’s Mom, after twenty-four years of diabetes, I’m still trying to crack its code. I give her credit for recognizing that this disease is much more serious than an herbal cure remedy. Perhaps she could have coached her child on her delivery of the bad news a little more, but we can’t always have it all.

When I see the parents of children using Dexcom CGM post in the Facebook group about little Joey or Susie attending the first big sleepover of the school year, it never fails to bring tears to my eyes. Those kids put up with enough pokes and prods, fingersticks and pump site rotations, Dexcom insertions and limited cake consumption that they warrant having some fun with their friends every once in a while. They deserve to stay up all night eating popcorn and watching movies, forgetting that diabetes exists while Mom and Dad rest comfortably at home watching the steady line of the Nightscout Project’s Pebble watch display or the Dexcom Share apps.

Enjoy that good type of change. Remember the freedom that this product affords us, even on the days where the calibrations seem a bit off. After all, we are dealing with type one diabetes; diabetes’ “calibrations” to everyday life are rarely on the mark. Innovative products like Dexcom CGM allow us to live life in the moment, to have an additional security blanket onboard, to do things that diabetics in the past may not have been able to do.

To the parents of the kids going to the sleepovers where Dexcom gets the invite, too: Your kids will thank you for allowing them to just be kids one day when they are old enough to realize the sacrifices that you made for them. One day we will all sit with our respective families around the campfire and talk about that first sleepover as a diabetic, the first time fast-acting insulin was introduced, and so on, until we can finally talk about the first big meal after the cure.

Keep up the good work.

Beginning of the End(o)

This week my endocrinologist is transitioning to a different medical office which is, realistically, too far away for me to travel to for future appointments.  This endo not only is a kind, non-judgmental doctor, but in my head she is dubbed as the “Basal Insulin Wizard.”  She has a knack for knowing which little adjustments need to be made to prevent or to fix huge problems.  She also deals with an inundation of emails in her inbox, mostly from me.  I pride myself on being an engaged patient, but I also understand that doctors do not have much time in the day to get everything done for every patient.

A few months ago I asked her, “Do your other patients email you like this?”

“Not really…” she replied.

And then we both had to take a moment to compose ourselves through a mutual fit of giggling.  Without saying much, we both totally got it.

I am intense in my emails, but I am also fighting for my health.  I appreciate a doctor who recognizes that and works with me.  Current Endo has done that, and I will miss the comfortable relationship we have built over the past few years.  Her new patients are blessed to have her on their team.

So, what am I going to do now?

I’ll tell you what I should have done: started searching for a new endo a few months ago when I was first told of Current Endo’s impending departure.  She gave me a few recommendations for a new endo at that time, and my nurse proclaimed, “If I were a type one diabetic, I would definitely get treated by _____!”  Naturally, I should have then booked an appointment with Endo _____.

But I didn’t.  Perhaps it was a bit of diabetes burn out, and I must now own that.  Perhaps it was a bit of denial that Current Endo was leaving.  Perhaps it was the fact that from a practical sense, I am tired of commuting many hours roundtrip for my diabetes care, albeit I feel strongly about the top-notch care I receive in Boston.

All I can do now is make a plan.  I will pick up the phone and schedule a new endo appointment this week.  Diabetes doesn’t take a vacation, and it certainly doesn’t care that my endo is switching offices.  I will rely heavily on my nurse during this transition period while I wait to meet my new endo.  This situation makes me so thankful for a nurse who is willing to put in the extra effort to help me to stay well.  She will rise to the occasion, and now I must do so, too.

New Endo will not replace the relationship- and possibly not the same skills- as Current Endo represents for me.  And that is okay.  People are inherently different in their attributes, and I am optimistic that whatever my relationship may become with the New Endo, it will be its own unique entity with positive results.  I must be thankful for the calm guidance of Current Endo, and I will remember her for that.

Warming up to New Endo may take some time.  I am a patient highly involved in my own care, and I’ve also made many major changes in my courses of treatment this year (Dexcom CGM, returning to multiple daily injections versus insulin pumping, and taking much larger insulin doses).  This is a lot of information for all of us to process, and sometimes the road may not be free of bumps.

For now, we’re just going to ride with it.

24. P.S. I Forgive You

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You have been a part of me for 24 years– which is 8,760 days- you selfish, conniving, jerk.

You have pierced my skin over 160,000 times.

On occasion, you have damaged my kidneys and my psyche, my relationships and my view of the world.

They were freak events- both my diagnosis and the insulin pump product defects that plagued me in my twenty-third year of dealing with your crap- but they happened to me, a living, breathing human being who did nothing to ever deserve that amount of suffering.

None of us did.

Today I am not mad at you, though.  I have spent enough time asking “Why?” to know that you don’t care why.  You just do as you do, whatever your flavor of the week is.  Sometimes the stars align and I get my insulin doses right for a day.  Other times, I go to bed frustrated with myself that I didn’t do better, although I know rationally that most of this is not that simple.

I want you to know, however, that there are things that you have not taken from me in 24 years of being an unwelcome guest dwelling in my body.  Through your efforts at taking, you have actually given me things: perspective, friends, academic opportunities, a passion for helping others, the therapies of writing and talking.  There is some reason for all of this, and many times I have known that God- and God-sent people- were the ones who got me through.

Why did I survive a disorienting and quickly-declining 46 mg/dL blood sugar value in my twenty-third year as a type one diabetic?  Frankly, without Dexcom CGM, I wouldn’t have survived, so that’s why.

Why do I read Facebook posts about children with diabetes, fighting back tears as their Moms and Dads document their struggles?  Because I know that these kids will grow up to be kinder, smarter, and more considerate for having gone through it.  And if we have to go through it, we might as well turn out as the type of people everyone would want to have as friends.  We might as well turn the bad into as much good as we can.

Why- as I sat in a waiting room in Boston, the sickest I had ever been with persistently high blood sugar that would not budge no matter what we did, scared and alone- did a doctor sit next to me quietly?  Why did she urge me to receive her treatment after I had run from it months earlier?  Why was she so confident that we could do this?

Why was she right?

We are doing this, and we’re going to continue to do this- to fight back, to live well.    

Why am I blessed when there are thousands of people all over the globe who may not have proper access to insulin and medical professionals?  I don’t know why, but I am cognizant of this idea today, especially.

Now, in my almost twenty-seventh year of existence, I have reached marker number twenty-four with type one diabetes.  It has not been easy, but it has been… something.  Some people never have this chance.  Some people are not diagnosed in time.  Some people die waiting for life-sustaining medication.

“Some people” are people who have feelings and families, and who could have bright futures, too.  Spare a Rose, Save a Child / Life for a Child get it right; those of us who are fortunate enough to have access to insulin can pay it forward with a few clicks of a mouse and a few dollars donated.

At least for today, diabetes, I want you to know that I forgive you.  I haven’t had it as hard as some.  In fact, I can count my blessings because of the perspective that you have given me.  There will be many more times that I will scream my lungs out in frustration with your stupid games.  But if I don’t forgive you right now, I will live however many more diaversaries there may be with a sense of embitterment at the life that I could have had without you in it.

Instead, today I recognize that living despite having you along for the ride is a gift in and of itself.  Please know that I am going to make the most of that life.  Thanks for reminding me to do so.

Move along, Negative Nancy!

Truth be told, I haven’t posted as much because I’ve been a little too Negative Nancy and not enough Very Light, No Sugar for my liking.  Consider this an apology of sorts.  This disease, in my adulthood, has changed me.  I miss the carefree kid in high school who was a dorky, yet extroverted, fun-loving person.  Nowadays, I don’t know what happened to that girl.  I’m still Ally, but on the rough days, I’m Angry Ally.

“Anger is a secondary emotion,” my friend said last week, when we chatted about the typical emotional twenty-something-year-old female stuff.

I have always known that, but the way she said it just stuck with me.  She’s right.  There’s more depth to my anger.  I’m hungry, for starters.  On the bad pump days when my blood sugar hovers in the 250s and 300s, I avoid carbs as if they were the Grim Reaper.  Sometimes it takes the entire day to recover after a pump problem, and I have just adapted to the growling in my stomach and the hunger pangs lodged in my ribcage.

“You look skinny to me- skinnier than when I last saw you. It’s all of this ketone stuff with the pump, huh?” my nurse asked gently as she tried to identify good insertion sites for the pump.

“No.  I’m actually gaining weight from the grad school diet,” I defensively replied, convinced that she was wrong.

That night I stepped on the scale and was surprised to see the 5-pound weight loss.  While it is an easy coping mechanism for all of us to laugh it off and say, “Well, maybe ketones bring one positive to the table,” the reality of that statement is that it is not a joke. Losing weight due to ketones is never a good thing. It is your body burning fat for fuel. It is another painful pump site because you’re out of cushioning. It is how diabetic eating disorders can begin, and it is harmful to the body no matter the circumstances leading up to it.

 

Full disclaimer here: I wholeheartedly intend to eradicate ketones from existence whenever possible, and I would rather gain some pounds than suffer one more day with ketones. But I am mindful of how easily this could escalate into a larger problem. I believe that this is an issue that needs to be discussed more often in the diabetes community, so here is my limited knowledge on the topic and my best effort to get a more open conversation going. If you believe that you may have an issue related to this topic, please know that you are strong and that you owe it to yourself to feel better by getting help.

Beep, beep, beep. Snooze. Ten more minutes. No, eleven. No, thirty-five. Yawn. Working fulltime, grad school at night, and driving to Boston regularly while figuring out the diabetes dilemmas are exhausting in and of themselves. Then, as we all know, diabetes loves to come out to play from dusk to dawn; it’s like a Great White Shark or something. In other words, it is a large nuisance with a ferocious bite. We’ve all been there: Head on the pillow, deep breath, fading into sleep, and then… EEEEEE EEEEEE EEEEEE from the Dexcom on the nightstand. Dexcom is like the loyal dog which never strays from its owner, and I am so thankful to have access to this lifesaving product. (It’s as good a time as any to remind us about #MedicareCoverCGM, right?) But it is just another example of the many ways diabetes disrupts our rest.

Being tired and hungry, for me at least, means that my patience threshold is running on vapors by 10:00 am most mornings, no matter how many very light, no sugar coffees are consumed. Little problems seem like big ones when all you want is pizza for lunch but you know that salad with a few miniscule pieces of chicken is your untimely fate for the day.

Or that one dramatic coworker is going on and on about how much his head cold has negatively impacted his life, and you can barely contain yourself from throwing vocabulary daggers his way- something along the lines of, “I HAVE POKED MYSELF WITH 50 NEEDLES. IN. THE. PAST. THREE. DAYS!!!!!” But you let it slide because you don’t have the energy to fight another battle. But then you feel guilty because you missed a chance to advocate and enlighten the ignorant, damnit! And then you feel like your focus is only about you, when you know full-well that many other people suffer, too. And then you start to live-tweet your emotions, and you worry that you are annoying the heck out of the people in your virtual support team, whether a valid concern or not. And then you feel guilty again. And then your CGM buzzes and you’re still 278 after the second pump change…

I admire the people in the DOC who are open about their emotional struggles with this disease. It takes true guts to be vulnerable to that degree. So, yes, I have a front row seat in the fan club for, well, all of you. It is difficult to come to grips with one’s own emotions at times, but in the long run it provides a healthier mental and physical outcome, if history and science are any indication.

Although being Negative Nancy is not fun, maybe I should also give myself some slack here? Diabetes is a daunting, never-ending job, and those outsiders who say “Laughter is the best medicine” probably haven’t tried to laugh when they have moderate-to-large ketones. It’s just not happening, people. But I can promise to attempt to tap into that whole thing called “perspective” that diabetes gives us a bit more often. We all know that little things aren’t the end of the world because we have already lived through the end of the pancreatic islet cell world. Badasses.

Thanks for putting up with my grumpy tweets. Sometimes it just helps to be heard.

If you can’t beat ’em, join ’em.

Random middle of the night thoughts, to the tune of Flo Rida’s “Low”:

Shorty got those apple juice dreams,
Snacks are not a cureee,
The whole fridge was eaten by herrr.
Glucose hit the floor,
Next thing you know,
Dexcom flashed low, low, low, low, low, low, low, low…