#weneedacure

Medusa

 

I don’t really like this picture

the Medusa hair

the empty, searching eyes

behind the mask of a smile.

 

“Emotional support” animals exist

because “emotional support” humans

sometimes falter

with their words.

That unspoken empathy

sometimes best fulfilled

by a creature

weighing less

than two pounds.

 
“Can you bring me my baby?”

I’d asked my mother

“Birthday cake

wasn’t sugar free

after all”

I’d sighed.

 

Unfairly pushing the blame

of an insidious condition

onto another

in the exact ignorant manner

I have grown to detest

in the abundantly phony

“Tame Your Diabetes!” articles.

 
My vision blurry

I already knew the number

was 400+ and climbing

without having to look

at the faded screen

of an overused machine

supposedly meant to sustain life

while the cure lingers

just out of reach.

 
“Can you bring me my baby?”

 

 

No Rules Poetry

+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.

img_0363

Here’s to more +1’s.

 

We need a cure.

 

 

 

 

 

 

Good Eggs Versus Goliath

???

I’m asking the same darn question. What in the actual Swear Word is going on?!

Let’s get the disclaimers out of the way upfront:

I am, undoubtedly, one of the lucky ones when it comes to health insurance. We can have the debate over whether or not Dexcom is a necessity or a privilege some other time. If I was stranded on an island, obviously insulin would be priority number one. But outside of being stranded on an island, Dexcom is a tool that keeps me safe. Because I value the high-quality product provided by the most innovative company on the market, I chose to fight for my supplies recently.   

Yes, I am a minnow in the healthcare pond. Society is filled with bigger fish who only see $$$, not the frustration of minnows who see ??? on their Dexcom screens. But does that mean that I have to lose hope in humanity? Nope. There will always be good eggs fighting against Goliath, and I want to give everyone that benefit of the doubt. When I lay my head down on the pillow at night, I want to know that despite whatever diabetes-related concerns I may harbor, I still tried. Hence, this blog post.

We all deserve better in healthcare. Step 1 is openly talking about it.

Long-story-that-has-been-rehashed-far-too-many-times-on-Twitter-short:

My Dexcom transmitter alerted me to its quick decline a few weeks ago. I immediately placed all of the appropriate phone calls to Dexcom and my third party supplier, Neighborhood Diabetes, as well as emailed my endo clinic. Unfortunately, we all go through these healthcare loop-de-loop headaches from time to time; I am well-aware that this problem occurs to others, too, and I am just as livid about their interruptions in quality of life as I am about my own. What was different for me this time around was how unnecessarily drawn out, draining, and dehumanizing this war with Goliath was.

low transmitter battery

How many steps does it take to receive a diabetes supply in 2016, you might ask?

  • 15 phone calls to third party suppliers, endocrinology clinics, and Dexcom customer service
  • 13 emails to various providers
  • 2 voicemails from third party supplier
  • Hitting “refresh” on the USPS tracking website a pathetic number of times
  • Gazillions of Twitter vent sessions
  • Countless hours of interrupted workdays during these phone calls/wait times
  • 1 box of Puffs Plus to dry your tears of frustration
  • 4 trips to your apartment’s leasing office mailroom
  • 2 awkward encounters with the mailman as you stalked his delivery route
  • 2 weeks of remembering what it was like to sleep pre-Dexcom

-Hint: I won’t take Dexcom for granted again, although I am in a tech- detox until this weekend because, frankly, I need a mini-vacation after this ordeal.

-Notably, all of this is for ONE supply out of thousands needed in our diabetes lifetimes!!!

 

There are also elements which we cannot objectify so easily:

  • Anger that our supposedly new and improved healthcare system remains SO disjointed
  • Extreme guilt that this is a first world, continuous glucose monitor problem when so many in our own backyards and overseas struggle to obtain the basics required to live with diabetes

-If being “angry that you are angry” is a thing, it was definitely my thing this week.

  • Which leads to more anger and self-doubt: Am I handling this well? Am I dramatic?

-Repeat that cyclical conversation in your brain a billion times over.

-Still feel guilty, as if YOU did something wrong here.

-Recognize that ^ is what abusers do to their victims; they twist the responsibility. Acknowledge that healthcare can be a big bully, and that no one deserves this.

-Realize that no, this situation is ludicrous. But yes, you are still blessed compared to others that you have what you do.

  • Demoralization that you have to beg and beg and beg to be heard. That you have to explain, on every call, why this product is important. That once again you are at the mercy of something beyond your control, and diabetes has a hand in that just like it did during that horrific low on your middle school field trip so many years ago.  Use incomplete sentences to express how off-putting this is.
  • Brokenhearted that this will likely happen many times over because #weneedacure that is realistically still far away.
  • Misunderstood: How can we possibly articulate how. much. time. we spend battling for supplies in order to survive?
  • What about how little time that leaves to actually live?

 

Understandably, Dexcom is going through some growing pains due to chart-topping progress recently. Their call center is overworked. I’ll admit all biases here: I like Dexcom a lot, and I cut them some slack here because I have faith that they will rein in this situation soon. All of that aside, though, waiting one or two hours to reach a representative is not anyone’s idea of a good time.

Dexcom did call me back and apologize, a feat that earns them more brownie points in my book. We live in a society that is quick to criticize and slow to forgive. Knowing this, Dexcom still took accountability for the things that went awry, which allows me to trust in their company character.

Then there was my supplier, Neighborhood Diabetes, which has historically answered phone calls at rapid-fire pace, winning my admiration. Initially, they performed in their usual customer-centric manner, getting the ball rolling on my new Dexcom order.

My endo clinic needed to dot some i’s and cross some t’s for insurance. But their email system is sporadically down, to the point where patients and providers alike cannot communicate effectively. A few phone calls later and I was reassured that their part of the deal had occurred.

So, I called Neighborhood Diabetes back, prompting my order to ship out before last weekend.

Cool, except that order never shipped out due to a “glitch,” which was discovered during my repeated “What the heck?!!!” phone calls. Transparency goes a long way, and I am happy that one of ND’s representatives was honest with me about the issue. Yet I couldn’t help but envision my islet cells doubling over in laughter as they recalled that time 25 years ago when they had a little “glitch,” too.

Two weeks after this fiasco began, even the mailman was happy when delivery day arrived. I could not help but be reminded of the good eggs in the world as I found his smiley face emoji note, and the subsequent Neighborhood Diabetes package in the box to the left, to the left. 🙂

mailman note

Neighborhood Diabetes box

As diabetics, we have to be on our A-game every day. Our lives depend on it. Our family and friends rely on it because they do not want to prematurely lose us. We are all human and we all mess up from time to time. But we do not get the luxury of inefficient or ineffective practices. We do not get to have “glitches” or one-hour hold times at the call centers of our own bodies whenever we want a break from diabetes.

Lantus

There were many moments over the past few weeks where I longed to mimic Kristin Cavallari’s famous Laguna Beach line, “My car is dunzo!”, except I would have replaced “car” with “pancreas” or “emotional stability.” Honestly, this whole situation broke me more than a scary low blood sugar ever could. It made me question my strength in handling all of this, but I also discovered one very clear truth:

In healthcare, there are good eggs and there is the Goliath of the broken system. Although an egg’s hard exterior may crack under pressure, the goodness inside is what matters when all is said and done.  Be one of the good eggs.

 

 

November, Polio, and Diabetes: A Lesson on Keeping the Faith

My grandfather was cured of polio as a child.

One summer day in high school, my friend pulled me aside at a barbecue and innocently asked, “Why does Papa have one skinny leg?”

“Polio,” was the only answer I could give.

His leg is atrophied from the polio, but the bounce in his step overrides the slight lag in his stride.  Life is good.  Family, friends, pasta, and red wine.  What more could an Italian grandpa need?

According to my relatives, Papa was blessed while riding on a parade float during the Feast of the Three Saints.  The polio disappeared after that.  I always thought that Jonas Salk played a hand in his cure, but perhaps I just really like the aspect of vagueness.  That’s where the faith is found, after all.

I will accept nothing less than a diabetes cure in my lifetime.  Plain and simple.  That faith will always be here.  When I am cured, I will hold onto that faith until every individual worldwide who is touched by diabetes receives the same renewed membership at quality of life.

Type 1 diabetes has dwelled in my body for almost 25 years.  It has undeniably left its mark.  Freckled fingertips.  Dexcom rashes.  Bruises galore.  As one friend recently joked, “You might want to leave those details out of your Tinder profile!”  Very true.

Diabetes has permanently affected my life, and yours.  I would be naïve to think that after 25 years, a cure will eradicate all of those diabetes handprints.  It won’t.  Some of the damage is already done.  But curing diabetes is also not all about me.  If I am going to be on this earth as a diabetic, if I have endured this crap for 25 years, if I know darn well how unrelenting some days are- then I cannot sit back and be okay with this in the 21st century.

We have the scientific brilliance to cure this disease.  We have the technology to cure diabetes.  And we most certainly have the motivation by which to accelerate research.  Look no further than any diabetes blog or heartfelt Facebook post by a D parent whose child just wants to eat cupcakes like the rest of the class, with no needles involved in the process.  Curing diabetes will involve faith, fundraising, advocating, and destigmatizing.  The #doc is well-suited to do this job.

It is 2015.  It’s about darn time for a cure.  I am excited about the pending technological options which will tide us over in the interim, but ultimately we need a cure.  If not for us in the here and now, then for all of the generations which will come after us.  It is our moral obligation to change this status quo.

November- diabetes awareness month- is about keeping the faith.  If my grandfather and his family had not believed that his polio would be cured- by whatever means- he may not have lived long enough to walk around the world free of leg braces, or to marry his high school sweetheart, or to still be madly in love so many years later.  He needed a cure, too.  He kept the faith, and he got the cure.

Keep the faith.  Advocate long and hard this month, and always.  #weneedacure

Cure Faith

Please note that this blog post solely reflects my personal opinions and is shared in the mindset of advocacy. Aside from the obvious point of being my parents’ daughter, there is no official affiliation to any of the people or organizations discussed here.

Heavy snow accumulations whited out the New England landscape as my father and I drove quietly into town to shop for a new ski parka. We were going to make a pit stop first, though. Some new research had just come out regarding a diabetes cure, and my father was on a mission to learn more. My teenage self was along for the ride.

We entered the medical library of my father’s alma mater. He had written down the name and page of the medical journal. There, I got my introduction to Faustman Lab. We photocopied the article, returned to the slushy streets, and eventually purchased a ski jacket.

I still have that jacket today, and to be honest, I’ll probably hoard it with my diabetes supplies for a while. Its shade is quite similar to the hue of the diabetes blue circle that so many of us wear loudly and proudly on our social media profiles. That jacket invokes a memory of hope for me, and it just seems wrong to throw it away- at least not until I’m cured.

coat pic for blog

When I was a young child, my father would tell me about the epic party that we would have when type one diabetes was cured. All of our friends and family would come over. There would be a carbs-only buffet. Pizza, pasta, bagels, muffins, cake, ice cream, Skittles, and more would constitute the main course.

After test driving my resurrected islet cells with a carb overload, the group would congregate on the front lawn. There would be a folding table in the center. And a hammer.

Dad would bring out the diabetes supplies- the blood glucose meters, the syringes, the vials of insulin no longer needed. We would raise the hammer high above our heads while the crowd watched. With as much force as we could muster, we would lower the hammer down onto the table full of supplies. We would smash what signified diabetes into smithereens. The heavy scent of insulin would fill the air as the glass vials shattered. The needles would be gone forever. My parents’ hearts would be sewed back together, and I could be a carefree kid who did not have to interrupt playground time to prick her finger and drink juice boxes like a champ.

My father’s diabetes cure party dream seems a bit dramatic when I reflect on it now. Alas, I totally get it. My parents were chasing their daughter around with needles, intercepting steeeeep blood glucose crashes due to NPH and R, not sleeping much, and doing it all over again the next day. Now, I have inherited those duties as an adult with more diabetes-friendly treatment options thanks to modern science. Yet the task remains difficult, and my hat remains tipped to all of the diabetes parents and diabetics out there.

Although the everyday ups and downs of diabetes caused some trying moments in our familial relationships, I know in my heart that my parents have never let their cure dreams fizzle out. Following their stoic example, I, too, dared to dream big, to imagine a world without diabetes. On the bad days those cure dreams have been my mental rosary beads. If I cling to the cure faith hard enough, it somehow sees me through the day.

Every generation has a moral obligation to make the world a better place. I have to believe that diabetes will be cured in my lifetime. Why not set our sights high? Time and time again throughout human history, dreaming big has paid off exponentially. If we do not dream big enough, though, we are stuck in a status quo of sorts.

Sure, modern technology makes life easier and has great potential for the future. I will always support anything that improves quality of life with diabetes. I will certainly take advantage of a perfected artificial pancreas system when the time comes if it means that I can feel better and stick around longer. But I will never stop advocating for the ultimate dream: to tell my future kids and grandkids that I had diabetes and that they will never have to worry about it thanks to a cure.

Due to my close proximity to Massachusetts General Hospital, as well as my father’s great interest in cure research, I have been blessed to donate blood and spend some time at Faustman Lab. (Full disclosure here: I am positively-biased as heck when it comes to Faustman Lab. While I find Dr. Denise Faustman’s diabetes cure research to be innovative and promising, I also appreciate her great value to the medical community aside from my own cure hopes. Dr. Faustman is one of the brightest minds and biggest personalities in medicine, and if I am going to put my faith in anyone to advance autoimmune disease research, it is her.)

Perusing the positive press about Faustman Lab’s Phase II clinical trials this week allows that cure faith to stay alive in my heart. No matter what my personal outcome is with diabetes during my stint on earth, I will be able to say that I lived in a time when great strides were made towards lessening the toll of diabetes. This is thanks to the hard work of Faustman Lab, other great research projects, our outspoken advocates, and the people who never let go of the dream.

One day my future kids and I will pile into the car to go shopping for ski parkas. I won’t have to pack extra juice boxes or check their blood glucose levels before hitting the slopes. We will warm up by drinking hot chocolate without pre-bolusing. On the car ride home, they’ll describe their big dreams, and I’ll do my best Kevin Garnett impression while telling them that anything is possible. Heck, we cured diabetes, kids.

Anything is possible.

FaustmanLab.org