cure diabetes

+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.

 

 

 

 

 

 

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.

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

“Shots, Shots, Shots, Shots! Everyyyybodyyy!!”

(Thank me later for getting that LMFAO classic stuck in your head.)

May 6 will mark six months since my return to multiple daily injections (MDI), or, as I like to say, “shots.”  Let’s call it like it is, people.  It’s sticking a needle in your arm, butt, back, stomach, leg many times per day to deliver life-sustaining medication.  It is not a cure, but it gives us life each day.

At a recent doctor’s appointment I proclaimed, “This rollercoaster isn’t working.  I need to return to the pump!”

To which my doctor countered, “And you told me the same thing about the pump before you went back on shots, Ally!”

I responded with a stunned face that only a googley-eyed emoticon can convey.  My doctor was right.  Diabetes is not as simple as insulin pump versus shots versus Afrezza versus whatever floats your boat.

If I have learned anything in the past six months, it is just how different everyone’s diabetes is and just how different our treatment methods may be- whether out of personal choice or simply out of necessity.  I’ll give another plug for Spare a Rose here: Most of us in the #doc are blessed to have any access to insulin, never mind the added bonus of having some flexibility in treatment options.

With that said, I know I seem like a broken record about the insulin pump.  I want to set things straight here once and for all, while providing an update about my shots journey for those who may be interested.

Insulin pumps, when functioning optimally, are amazing devices.  Going on the pump in high school opened up a whole new world to me.  My parents breathed a sigh of relief that I could enjoy being a dorky kid with a bit more freedom back then.  There are things that I miss immensely about insulin pumping: fine-tuning insulin doses, temporary basals, basal adjustments in one minute flat, carb-count/correction factor/insulin on board “wizards,” stability in blood sugar values on the good days.

If the pump works for you without many issues, all the more power to you. I want you to use whatever makes you feel healthy and happy- the same goals that I want for myself. In my rare case, going on shots had to serve that immediate interest in order to save my health. Do what works for you.

You can achieve a healthy lifestyle on shots, but it is more of a clunky, awkward sort of dance.  Once that Lantus is injected, it’s there for the day.  On Friday, my pancreas decided to rev up a notch (sarcasm), and for some odd reason I could not get my blood sugar to rise all day despite having taken the same dose of Lantus that I take every single day and hardly bolusing Humalog.  I force-fed myself almost all of the leftover Easter candy to no avail.  Good Lord did I miss the temp basal feature of the pump then! I longed for the personalized touches of modern technology that brick and mortar insulin injections simply do not afford.

I would ultimately like to ease into an “untethered” regimen of background Lantus in case of pump failures coupled with insulin pump usage again. However, this is quite complex, and we are not quite there with the shots yet. More details need to be worked out in terms of my basal and bolus plans. We are not settled into our comfort zone at this time, but we will get there.  For now, we are enjoying the fact that insulin is getting into my body without technological glitches causing ketones each day, a freedom that I will never take for granted again.

Many topnotch brainiac doctors have looked into my pump issues. We know that the product did not work for me personally. But we also know that a pump-centric solution has not yet been provided. Right now, we do not need to add another factor to the equation. We’ll give shots a shot (see what I did there?) for another few months, at least.

I find myself daydreaming about a cure so often now: the party on the tropical island with the entire #doc; the sugary drinks consumed without having to stop and bolus- whether that be via insulin pump or shots; the happy kind of tears.

As a child when that elusive diabetes cure was “ten years away” (cue inside diabetic joke laughter), my father used to tell us about the enormous cure party we would have. There would be a table in the middle of the front yard with a sledgehammer on it. We would smash my blood glucose meter, syringes, and other diabetes supplies into tiny pieces to signify victory over a vindictive disease.

The sentiment was well-intentioned, although today I must admit that I laugh a bit at that particular daydream. If I were cured tomorrow, all of those diabetes supplies would immediately be donated to people who needed them in the interim. The supplies have nobler uses than being crushed by a sledgehammer.

We should be thankful for the supplies that we have keeping us alive right now. If an insulin pump does its job for you, perfect. If Afrezza is your drug of choice, inhale away. If shots suit you better, go for it. However you choose to do so, just fight the good fight until there is a cure.

Please keep those cure daydreams alive by continuing to advocate so well. #weneedacure