diaversary

32.

This month marked 32 years of living with type 1 diabetes for me. Honestly, it was just another day at this point. The week was emotional for different reasons, and diabetes was in the background. What a contrast to that time over three decades ago, in which I was in DKA and fighting to survive, hooked up to beeping heart monitors and IV drips.

I’m grateful this year for Tandem’s T:slim pump, particularly. This device is the reason I get some reprieve from the constant managerial aspects of T1D. It is why on my thirty-second diaversary, diabetes did not have the spotlight this year. How I wish we’d known all that time ago what we know now- but that we would have understood that access has never been a level playing field, too.

Until there is equitable access to diabetes supplies and treatments, our work remains after all this time.

To 32 more…

31

I recently marked my 31st diaversary, or diabetes diagnosis anniversary. At this point in the game, it often feels like just another day. I am sad that the cure my family was repeatedly promised many decades ago still eludes us, and that the emotional, physical, and financial costs of daily diabetes survival place far too much burden on the individual. Simultaneously, I recognize my own luck and privilege in making it this far.

Given the concern for type 1 diabetes (T1D) diagnoses, particularly, in adults and children post-COVID-19 infection, I intend to do something useful with this diaversary and remind others of the main warning signs of diabetes:

-Increased thirst

-Frequent urination

-Rapid weight loss

-Fruity odor on breath

-Shallow breathing due to diabetic ketoacidosis (DKA)

-Agitation and/or fatigue

These signs can be experienced following a viral illness such as COVID-19, as a viral trigger is thought to be involved with the autoimmune attack in T1D.

As for me, it’s just another day with (hopefully) many more to go. I remain hopeful that through our advocacy efforts, future generations of people with diabetes will have improved quality of life- whether it is diaversary number one or thirty-one.

30

This month I marked 30 years of living with type 1 diabetes. Collectively, my family has 55 years of experience with T1D between myself and my relative. In the past, I would have calculated and best-guesstimated the hundreds of thousands of needle pokes incurred over these diabetes years. So much of our time is spent analyzing numbers and trying to find meaning in it all.

My 30th diaversary, however, was mostly met with ambivalence on my part. When a friend texted me to be kind about this milestone of an anniversary, I replied succinctly, “Thanks. Honestly, today has just been another day. And I’m okay with that.”

This is not to say that I’m burnt out, or ungrateful, or anything else negative and patient-blaming which healthcare so often unjustly engages in. Rather, quite the opposite. I was ambivalent simply because my interests have shifted over time, and diabetes no longer takes up the bandwidth that it once did in my mind. I still struggle and suffer from the nonstop burden of diabetes management as complicated by many external barriers to care. But it’s more of a rolling with the punches experience now, rather than constantly lacing up my gloves for another round. There is peace to be found in the rhythm of acceptance, and moving towards what I value no matter what.

I also recognize the great juxtapositions here:

30 years of diabetes is a huge deal defining decades of strength and resilience. We should celebrate those achievements and express thankfulness for our supporters.

But we should also acknowledge that none of this is fair. The dial hasn’t moved on diabetes-land in the ways that we need for every person with diabetes, everywhere, to have good quality of life. We still need a cure. We still need better insulin treatments, and we absolutely need these options to be readily accessible and affordable for everyone. No more jumping through hoops; just commonsensical, “Can I quickly access what I need to live well even at 3:43 am in a snowstorm?” sort of standards of care. We’re unfortunately still far from these equitable meters of QoL.

It is not lost on me that many people do not get a chance to write a 30th diaversary blog post as they may have hoped. Factors such as missed or delayed diagnoses fueled by societal stigma and misunderstanding of diabetes; the inextricably intertwined challenges of emotional health and chronic disease; effects of socioeconomics, race, class, gender, education, environment, war or peace, and much more; and, most pressingly, global access to insulin / insulin pricing all weigh heavily on my heart today. Those who have died slowly and painfully from DKA, particularly, remind me that even though ambivalence at 30 years of surviving an unrelenting disease is acceptable, my own years cannot be in vain. My story could have begun and ended differently. Others were not so fortunate, and our advocacy must honor them.

Despite the daily challenges posed by diabetes, I am still here, through hard work, yes- but also through lots of luck and privilege. We are allowed to be cognizant of each of these contributors to diabetes care, to be proud and happy when we feel well and achieve our goals, while simultaneously mourning the support we lack personally and universally in our diabetes care trajectories.

I feel all of that today.

*Not Another Mount Everest Story*

Today marks my 27th diaversary.

 

My detailed reflections are still there.  But, to speak my current words, I just require a proverbial megaphone and a rooftop to shout from:

 

It remains unconscionable that there is no cure. 

#weneedacure

 

Diabetes has made other things more difficult.  And other things have made diabetes more difficult.  And around we go.

Behind all of that, I see a human being.  Her eyes look back at me in the mirror, tired.  She will never stop fighting this disease, and she drinks a lot of coffee.  But, damnit, she is tired.  

There’s still so much left to accomplish. It’s certainly doable. But, it feels like a lot a lot a lot. 

She is telling her truth here because that is the realest advocacy she can offer today.

There were many times when she did not want another “climbing Mount Everest” diaversary story.  She simply needed a beer with a friend (or an affirmative blog post), a friend who could not reasonably promise that it would all be okay.  But that friend would sit beside her and say cheers to #weneedacure anyway, because it was the bravest idea they could hang their hope on.

This is the “tell your truth” edition of the Mount Everest story.

Sometimes, that truth hurts.  Tell it anyway.

Advocacy lives in the stories and in the people with the eyes, staring back at us in the mirror.

It is more than enough.

 

#weneedacure

  

+1

25 years on a Lilly medal + 1 test strip representing another year = 26th diaversary

Last year I had many words, and blog followers reported that they kept Kleenex in business while reading.

This year, only a few terms come to mind:

Anger.  Insulin.  #weneedacure.  Emotional Health.

If diabetes takes a backseat in life, it is not for lack of trying.  Rather, it is for resetting and rising again.

Reese has taught me to appreciate the simple joys of reliability, and love.

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Here’s to more +1’s.

 

We need a cure.

 

 

 

 

 

 

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!

Favorites and Forgiving Diabetes

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

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

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

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.