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

World Diabetes Day 2014: The Day The Whole World Turned Blue

We are all together in a great sea of blue, and if I do say so myself, blue looks good on us!  Who doesn’t like watching the blue ocean waves crash along the shore?  Who hasn’t wondered what goes on all the way across the pond?  We all know that diabetics wake up and fight every day in every corner of the globe.  That is why blue unifies us.  Now it is our time to tell others about our lives with diabetes. No matter the type of diabetes, we share a universal goal of taming the diabetes beast, living well, and supporting each other.  We dream of a cure together.  We know that the potential for a cure is there.  We want future generations to speak of diabetes as a mythical monster that some brave souls once crushed into the soil, never to hear from it again.

There are plenty of wonderful research and advocacy endeavors going on right now. We all have our personal favorites and I encourage any cause that lessens the burden of this disease. Today, I ask you to take a moment to look at the Faustman Lab at Massachusetts General Hospital.  For those of you who do not know Dr. Faustman, suffice it to say that she is a phenomenal, witty, kindhearted, passionate human being first and foremost, and these qualities make her an innovative doctor. I am a bit biased, but I would love to see her cure this disease.

If you are unfamiliar with the Faustman Lab, please check out their website at faustmanlab.org.  If you are looking for a new cause to support, forego your morning cup of coffee and instead send a few dollars to Faustman Lab. If you already support the Lab, please continue your support. The research is promising, the process is not invasive, and the team behind it is fully dedicated to conquering autoimmune disease. I am not a scientist, but I believe solving the complexities of one autoimmune disease will be to the benefit of many other diseases, whether defined as “autoimmune” or not. The more we understand about the malfunctioning of the human body, the better.

Thank you for your support, and I truly hope that everyone enjoys World Diabetes Day 2014 whichever ways you choose to celebrate. May your blood sugars be stable, your bodies and minds able, and your hearts basking in the glow of the diabetes “label”- for this one day, at least.  Own it!

#FreeDiabetics

I love this movement because it is short and sweet (pun intended).

Check them out at:   https://www.facebook.com/freediabeticsmovement   and   @freediabetics_

We live in a world very much capable of finding a cure for diabetes, but it will take lots of prayers, research, financing, and determination.  Until then, diabetics are imprisoned in a state of constant vigilance regarding high and low blood sugars.  There is no parole when it comes to type one diabetes.  #weneedacure

FreeDiabetics3

Side Note: Very Light, No Sugar suggests looking at Faustman Lab at Massachusetts General Hospital and donating whatever you can- even the $2.00 that you would normally spend on your morning coffee- to help us to one day rid the world of diabetes.

http://www.faustmanlab.org/

Microsoft Word’s “Lost and Found” Bin

According to the record in Microsoft Word, I edited what would later become the bones of this blog post almost exactly one year ago.  It was a project for Faustman Lab at Massachusetts General Hospital for a Facebook forum titled “Share Your Story” to raise awareness for type 1 diabetes research at the Lab.  Crazy grad school hecticness must have gotten in the way, or for once in my life I may have been a little shy- I’m not sure, really.  But for some reason, I did not share my post a year ago. 

Today I feel differently.  Part of writing this blog is to be vulnerable- to take the chance that people might brush off my story, that some might laugh, that no one will care.  Something tells me that there are other diabetics out there who “get it,” though, and that hopefully this will resonate with some of you. 

 

It was a simple question, really.  “Come on, Ally, you’re going to have a bigger piece of cake than that, right?!!”

I had just met Kate a few minutes earlier upon arriving at a birthday party for our mutual friend, Sean.  Kate clearly meant well, but she had no idea what she was really asking.  She was unaware that I had been eyeballing the frosting from across the room as if it was some sort of monster lurking in our presence while I calculated the sugar content and the havoc a few bites could wreak on my body.

Kate had no idea that my blood sugar had been double and triple the normal levels all week thanks to a head cold and the usual pump problems of bad insertion sites due to scar tissue build-up; no idea that it had been hard to focus at work but I had no remaining sick time coverage; no idea how much a “ketones hangover” can put the aftermath of any college fraternity party to shame; no idea how guilty I felt after snapping at a well-intentioned coworker who happened to cross my path in the midst of a diabetes-induced temper tantrum, which included flinging a few pens at the walls of my cubicle as they closed in on me; no idea that I would spend my Friday evening unlike almost all of my twenty-something year old peers: setting alarm clocks during the night to deal with the anticipation of a blood sugar crash; and no idea that the next day my pump would kink while traveling and I would have to find an abandoned shopping plaza for some privacy to change my pump site and shoot up insulin.

She had no idea that after all of that- about 15 hours in the life of a type 1 diabetic- many nights I go to bed thinking, You should have done more!; no idea that society, even close friends, seem to imply that it is your fault when your control lapses.  Just avoid candy bars and life should be easy, right?

 

My good friend, Jessica, knew what that larger piece of cake might entail for me, and quickly intercepted any further questioning from Kate with a stern, “No, just no,” shaking her head.

Kate, a bit bewildered, thought better than to pursue the topic and shrugged it off.

Most days, I would pounce on the opportunity to discuss type 1 diabetes with those willing to listen.  I probably would have displayed my blood glucose meter, explained how diabetes has affected my life and the lives of my loved ones, with careful emphasis on how much technology has changed things for the better during the course of my twenty-two years with this disease.  Then I would have described how people like Dr. Faustman and her team at the Faustman Lab have been a reason to keep waging the good fight against diabetes, and how they top my long prayer list each morning and evening.  I could go on to describe people of all backgrounds, those who traveled from Seattle or Mexico or right down the street in Newton, Massachusetts, who I have witnessed over the course of hundreds of endocrinology appointments, all coming to the Boston area for the common goal of improving the health of their family members at the best hospitals in the world.

Alas, tonight was supposed to be a relaxing occasion, a time to enjoy nice company and to forget the stressors of the week, whatever they had been.  Yes, I could have gotten on my “diabetes soapbox,” but I opted not to for the sake of Sean’s birthday.  Instead, I scooped up a forkful of my tiny sliver of cake, pressed a few buttons on my insulin pump, and took a bite, savoring the sweet chocolate flavor.

Everyone has his or her cross to bear.  I do not blame Kate for asking an innocent question that happened to touch upon my cross during a rather difficult day.  I truly hope that she has the freedom to live her life without ever having to contemplate why a large piece of cake might be a negative thing; it should not have to be!  I am confident that one day my future children and grandchildren will enjoy that same freedom and can go back for seconds, without a care in the world, whenever birthday cake is served.

 

With sincere thanks to Faustman Lab for all that you do,

Ally