25.

Today is my 25th diaversary, a day I have anticipated with the whole spectrum of emotions inherent to living with diabetes.  If you want the lovey dovey, Rah! Rah! diabetes blog post, I can happily refer you to last year’s diaversary musings.  This year, the raw emotion needs no further introduction.

 

Sunday, September 27, 2015.  Stanford University, Palo Alto, CA.  Medicine X.

“Ahh!  Dr. Bonnie Feldman’s autoimmune disease workshop already started!  We have to go!” I texted my Stanford Medicine X (#MedX) buddy from Minn-e-so-tah, Britta Bloomquist.

As I hurried upstairs to the correct location, I found Sophie Thacher, a fellow diabetes advocate, and encouraged her to join.

The three of us bustled into the room just as the opening remarks were concluding, and Dr. Feldman, et al. welcomed us heartily.  As I took my seat at the front of the classroom, an easel used for brainstorming ideas crashed down upon my head.

Clearly, we had arrived in comical style…

Britta introduced herself first, describing how she navigated the healthcare delivery system of Minnesota in search of proper diagnosis and treatment.  When the spotlight landed on me, the words tumbled out in a nervous haze.

“I was diagnosed with type 1 diabetes just before my third birthday.  January will mark 25 years since my diagnosis.”

In my mind, time stood still.  My glance met that of a young doctor sitting in the middle of the room, and he seemed like one of those cartoons with thoughts encapsulated in a bubble coming out of his head.

thought bubble3

But you’re so… young, the doctor thought.*

thought bubble2

Yes.  How has a quarter-century of living with this disease gone by already?, I blinked back in reply.*

 

Frankly, 25 years of diabetes is mind-boggling to me.  To say those words out loud to a room full of people who “got it” was a moment that redefined my relationship with my disease.

You’re still here.  Do something with that gift.  

Yes, I am young.  Yet my body has been poked by over 202,000 needles since my diagnosis.  Diabetes has been there for every major life event: birthdays, senior prom, academic graduation ceremonies, and more.

At times, diabetes has kicked and screamed and thrown punches at the most inconvenient moments.  I have shed my fair share of tears hidden in bathroom stalls and parking lots.

My 25th diaversary thoughts are an emotional teeter-totter.  I feel empowered by wonderful patient communities; lucky to have somehow escaped diabetes’ truly abusive potential thus far; thankful for family, friends, and healthcare team members who loyally support my fight; disappointed that with all the braniacs in the world, the diabetes code has still not been cracked; not surprised because the one unspoken truth about diabetes is that it is a #JerkFace; yet hopeful that my future children and grandchildren will not have to know what this jumble of emotions feels like, because we are that much closer to cracking the diabetes code than we were 25 years ago.

What I most admire about diabetics is our willingness to exceed diabetes’ persistence.  If diabetes is not going anywhere in a hurry, neither are we.

Life with diabetes is one big run-on sentence, after all.  Every. single. morning. we wake up and face our reality.  We scramble eggs and put on clean clothes and go to school or work, all after making life-sustaining treatment decisions and prodding our skin with needles and somehow maintaining the faith that a better day will eventually arrive.  That is all we can really ask of ourselves- to keep the faith. 

To see 25 is a poignant reminder of the many lives touched by this disease.  My heart breaks for those who never got the chance to reach this milestone.  I know that they are in a better place; heaven doesn’t care about silly things like basal rates or pre-boluses.  But I still hurt for their families and friends, for the joyous spirits prematurely taken from this world.

On the day of my diagnosis, I was rushed to the Emergency Room with a blood sugar value of over 900 mg/dL after my mother recognized some of the symptoms of type 1 diabetes and brought me to a local lab to test one drop of blood.  The doctors and nurses were frantic to save me.  The previous day, another child- about the same age as me- passed away at that very hospital; his type 1 diabetes had not been diagnosed and treated in time.

I do not know that little boy’s name.  I do not know his family, or who he would have become.  But this 25th diaversary reflection is just as much about his story as it is about mine. 

*****

When I was a child, my father occasionally climbed into bed with me in the morning.  He would prick my finger to check my blood sugar, squeeze the blood onto the test strip, and determine the proper insulin doses.

He would also hug me tightly, whispering, “If Mommy and I could take diabetes from you and instead have it ourselves, we would do that in a heartbeat.  One day soon there will be a cure.  We will eat whatever we want and never have to worry about insulin again.”

My back turned to him, I discreetly wiped away tears until he left the room.

The cure may be 25 years tardy as far as my family and I are concerned, but what is most important is that it eventually gets here.  If the cure does not arrive in time for me and you, then we have to at least scatter the trail of breadcrumbs for those who will come after us.  Our diabetes legacy is not so much about the individual A1c results, but more about how we make the world better before we leave.

Until diabetes is a thing of the past, I will always be that little girl, blinking back tears in an act of strength, praying for the cure.

Here’s to 25.

 

 

 

 

*Cartoon thought bubbles source: Microsoft Office clip art

**Facebook has deactivated my personal account because apparently they forgot to have an extra cup of very light, no sugar coffee last week.  (Facebook’s overly-dramatic names policy is not in favor of the nickname on my account.  #LameBook)  In the meantime, please follow my Facebook fan page here and share with your friends.  Thanks!

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Your Grandma’s Diabetes Vignette

“My grandmother died of diabetes,” my ‘boyfriend,’ Jake, mentioned offhandedly as we climbed rocks in the woods behind his home.

We were in fifth grade, and the act of dating consisted of parentally-supervised playdates a few times each month and the added privilege of swapping prince and princess Disney-themed Valentine’s Day cards in February.

“No she didn’t,” I retorted.

“Yes she did.  She got really sick.  I don’t think she had to take shots like you.  But the doctors said she died of diabetes.”

“People don’t die from diabetes.  It must have been something else,” I replied, shaking my head as if to dispel the prospect.

The thought had never really crossed my mind before.  I knew low blood sugar left me pale and shaking on the floor.  But did people actually die from this stuff?  I pushed the notion to the anxiety cupboard of my mind, a place from which I often plucked a topic to pester my mother about on the car rides home from school.

“Do people die of diabetes, Mom?”

“I don’t think that’s something you have to worry about,” was along the lines of her response- a well-played verse which straddled the line of truth just enough to shield me from the painful reality of the answer.

I packed the concept of death via diabetes back into the anxiety cupboard of my mind and closed the door tightly.  Why had he said it if it wasn’t true, though? 

Today I realize that Jake simply wanted his grandmother’s story to be heard, especially by someone who understood firsthand the turmoil of the disease that took his grandma away from Christmas mornings with her grandchildren far too soon.

If I ever walked into a bar now and happened to find Jake swigging from a frosty mug, I’d tap him on the shoulder and tell him that his grandma’s diabetes is different from my diabetes, which is different from your diabetes, which is different from Ryan Reed’s diabetes.

Then I would buy him a beer, apologize for his loss, and sit down and listen to his story.

A Few Good Nurses

For a couple of years, I have kept this story close to the vest, mostly because I felt quite vulnerable sharing it.  I still feel sensitive, but the timing is now right to tell the tale.  We are seeing many headlines in the news about nurses today.  As far as diabetes blog headlines go, I hope you’ll take a few moments to read this one and to thank a deserving nurse.

Winter.  I had recently started grad school and I was optimistically trying to do #AllOfTheThings.  This included a regular, intensive gym schedule, a disciplined diet, and very little sleep- just the right ratio of “healthy” ingredients to convince myself that I was not running on vapors in reality.

I booked an appointment with my diabetes nurse, as I was experiencing more frequent insulin pump site problems.  We needed to find viable locations for site changes, or perhaps to discover a different type of infusion set that worked better for my body type.  Also attending the appointment would be a nurse employed by the insulin pump company.

At the appointment, we had all of our diabetes ducks lined up in a row: various infusion set types, reservoirs, alcohol swabs, IV prep, and Humalog vials.

Historically, I stuck to the abdominal area for pump site changes.  We wondered if significant scar tissue had developed, causing the numerous pump site failures.

“Alright, can I take a look at your sites?” D (diabetes) Nurse asked.

“Yeah…” I replied, eyes darting to the floor.  I felt weak as I handed the control of the situation over to the healthcare professionals.  It’s my body, but now I have to trust someone else with it.

D Nurse gently felt around for scar tissue, but did not find much despite my long-term insulin pump usage.  P.S. (pump site) Nurse from the pump company inspected the same areas and came to the same conclusions: no scar tissue, but not much pump site “real estate” to work with.

“Geez, no wonder these sites are hurting you.  You don’t have much padding to use!” P.S. Nurse said, making eye contact with D Nurse as if to communicate, “This might be a difficult appointment…”.

In terms of pump sites, my extra sit-ups after the gym workouts were not helping matters much.  (Now that I am in my last semester of grad school, I assure you that extra sit-ups are a thing of the past!)

“You can try leg, back, or upper butt sites whenever you feel comfortable.  But for today, if you want to continue with the stomach, we can do that,” D Nurse said.

“Okay,” I replied nervously.

We all knew what was coming: the “trial and error” method of identifying infusion sets that would work well for me.  The nurses had to be sure that I was inserting the sets properly and that we were not overlooking a better option.  Like many diabetics, I have endured thousands of needles in my lifetime.  Although unpleasant, at some point you get accustomed to the momentary pokes and prods and you do not dwell on them.  Regardless, even at the age of twenty-five, it was a harrowing thought to know that my stomach would soon be a pincushion.

First, I showed them how I inserted my sets.  The process was automatic and quick.  The nurses agreed that I performed every step correctly and we could cross my name off the list of possible suspects causing the site failures.

“Your skin is tough- literally and figuratively.  I think you may be getting some resistance from the insertion devices, which could be kinking the cannulas as they go into your body.  Can I try an insertion?”  P.S. Nurse asked.

I nodded and allowed her to try without protesting.

“Okay, that was good but I felt the kick-back with the inserter.  What if we manually put the site in?  You could insert the needle by hand, without an insertion device, and perhaps you can curtail the bent cannulas that way,” P.S. Nurse suggested.

Whaaaat?!  I wanted nothing to do with that idea, but was also willing to try anything to get the sites to work better.  I made a feeble attempt at manual insertion and watched as the needle bounced back off my skin.  Defeated, I slumped down in the chair.

“Do you mind if I try it?” P.S. Nurse asked.

I liked how she always sought my permission before attempting anything.  The control was still in my hands to an extent, even though she now held the needle.

“You’re doing so well.  You’re so brave,” D Nurse whispered.  She wiped the dried blood off of my stomach using alcohol swabs, distracting me while P.S. Nurse prepped for the final insertion.

And just like that, it was over.  P.S. Nurse swiftly launched the needle into my side, and I did not feel more than a minor pinch.  We high-fived and hugged afterwards, proud of our hard work.

That appointment lasted a few hours.  While it may not have been as draining as receiving chemotherapy or undergoing heart surgery, I can tell you truthfully that it was an exhausting afternoon for all of us.  Emotions were high in the face of uncertainty, and we had to trust and communicate with one another.  If it hurt, the nurses were right there to make it hurt less.  Likewise, I had to admit when it did hurt, when I did need their help.

In my lifetime of medical appointments, I have felt the cold stainless steel of stethoscopes from nurses and doctors alike.  I can attest to the other tools that nurses use: infusion set needles, alcohol swabs, bandages, medical tape, bear hugs, TLC.  A few good nurses can change the entire course of an appointment, making it go from “scary” to “It’s going to be okay” as they work steadfastly to heal their patients.  Nurses often handle the difficult moments behind the scenes, with little fanfare.  They comfort patients like me when we are scared.  They make it hurt less.  And they deserve to hear “thank you” more often in our society.

One Step Back, Many Steps In

It has been almost one month since I took a step back from blogging.  I can’t quite say the same for live-tweeting my stream of consciousness, but I did my best to avoid reading feverishly about diabetes technology as promised.

My tiny blogosphere roar does not make the world go ’round.  But, for me- and hopefully for the people who read my blog on occasion- Very Light, No Sugar will always be my own little piece of the larger diabetes puzzle.  Blogging is how I shed light on the thoughts that have bounced around in my head for over 24 years of living with type one diabetes.  Reading others’ blogs has been empowering and unifying; many of those same thoughts bounce around in other heads, too.  Putting my feelings on (virtual) paper makes them real- a part of our shared experience of diabetes.  Changing up the blog post pace allowed me to reexamine why I chose to blog in the first place.

By taking a step back, I was able to let others step in.  Before the mini-hiatus, I probably did not realize just how much I needed those little moments with big meanings because I was caught in an overwhelmed, overtired haze.

Emailing back and forth with various #doc buddies who offered unconditional support and understanding, paying more attention to the humorous side of diabetes via the Twitter and Facebook jokesters, and spending a few days on Cape Cod with my family allowed me to hit the figurative “reset” button.  And let me tell you, the “reset” button is more refreshing than pounding the “snooze” alarm three times each morning.

It’s good to be back, even if only at “training wheels” pace for the time-being.

Wicked Witch of the East?

“Woah!  Is that normal?!!” my friend and coworker, Jack, exclaimed as we sat on the bench at lunchtime.

“You mean these Incredible Hulk feet?  Yeahhh, not so much,” I replied.

Filed away in some teeny weeny “Future Useful Information” cabinet in my brain, I recalled how months earlier my doctors described that I may notice some swelling in my feet as I transitioned from the insulin pump back to multiple daily injections after a decade of pumping.

In layman’s terms regarding “Swelling Feet 101”- because I have a very basic understanding of this very complicated medical scenario- we would expect to see some swelling, particularly of the feet, due to my body readjusting to normal-ish blood sugar values.

While experiencing the high frequency of my insulin pump problems in the fall/winter, my body was more or less in a prolonged ketonic state.  With almost every site change, ketones built up, and it took hours to recover.  On especially rough days, I sometimes experienced multiple site failures, pushing the recuperation process even farther behind.  Once the problem was rectified, it was time for another site change, and often this process began all over again.  Not fun.

When ketones pop up, your body burns fat for fuel, and you dehydrate and do not absorb food properly.  Hence, the overall zombie apocalypse feeling that ketones carry.  During this time period, I was gaunt, hungry, and tired.  My body became accustomed to this unhealthy status quo of spilling ketones, flushing them out, and starting all over again once a new problem arose.

Shots mostly erased this high ketones song and dance. Insulin was regularly getting into my body via injections, so the ketones did not have a chance to compound like they had in the past. Although I felt infinitely better without ketones, my blood sugars were far from stellar for the first few months back on shots. There was a lot of back and forth figuring out proper basal rates, insulin to carb ratios, and correction factors. And, in diabetes’ signature fashion, it usually changed its mind once we seemed to iron out some details.

I am still not the poster child of superb blood sugars or a brag-worthy A1C, but my numbers are beginning to stabilize. Interestingly, I am seeing improved blood sugars with a significantly-reduced basal regimen. In the past, the basal was too high, prompting big crashes and consequential reactionary blood sugar spikes. In other words, the diabetes rollercoaster had a lot of peaks and valleys.

So, recently when my feet looked like the Wicked Witch of the East’s heels poking out from under the house that crushed her, it was actually a positive thing. Luckily I had a doctor’s appointment the following day, which confirmed that this was the swelling we had initially expected. It had not appeared when first back on shots because my blood sugars had remained erratic, despite the lack of ketones. Now, my body is getting more of the fuel that it needs and the insulin to cover that fuel, so as it rehydrates, there may be some temporary swelling.

As with anything diabetes-related, it’s never really simple, is it? Thankfully, in this situation, the unpleasantness is only brief and will not cause any permanent problems.  The only other issue is that I am having muscle spasms in my feet and legs quite frequently.  I have experienced muscle cramps since childhood.  Although this is nothing new to me, I could do without the intensified “Charlie Horse” occurrences.  The doctors believe this number will decline as the swelling in my feet lessens over time.

Finally, my high heels game is taking a hit here.  But who doesn’t want to wear sandals or Sperry’s in this awesome weather, anyway?  Bring it on!  #ItMakesSenseIfYouHaveDiabetes

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.

“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