Friday, March 9, 2012

So it begins


For those of you who know me, you probably already know that I have Type 1 Diabetes, and if you don’t then you do now.  I’ve had diabetes for 17 and ½ years.  As a general rule, once the counting gets past 10 I don’t bother with the ½ anymore but when it comes to having a disease that can make you go blind, fry your kidneys and cause general chaos in your body, making it through that half of a year healthy and happy is quite the accomplishment.  This year for my 17 and ½ diabetic anniversary I decided to participate in a clinical trial for the artificial pancreas project. Well, when I say "I decided" what I really mean is that my incredible fiancé helped me to secure a position as a participant in one of the most awesome and hope-inspiring clinical trials out there for type 1 diabetics like myself. If you don't know what the artificial pancreas project is, here is a link to the Juvenile Diabetes Research Foundation (JDRF) page that talks about it. http://www.artificialpancreasproject.com/ Basically the end game is that I, along with every other type 1 diabetic out there, would be able to eat, drink and LIVE without spending practically every minute thinking about how it impacts our blood sugar.  For the past 17 and ½ years, my life has been in the hands of either myself or my absolutely amazing parents.  Artificial Pancreas Project aside, I really feel that I need to make a moment to acknowledge exactly how much my family has done to make sure that #1) I stay alive, and #2) I live the happiest and healthiest life possible for someone in my position. Stabbing your own finger with a syringe while trying to inject your severely underweight and malnourished newly diagnosed child with insulin is deserving of a medal itself, and that only barely describes the tip of the iceberg in regards to all that my family has done for me.  Will I ever be able to repay them for the sacrifices that my Mom and Dad have made so that I can have the life that I do now? Probably not.   But the best I can do is to live life to its extremes the best I can while still maintaining the incredible control over this disease that they’ve taught me.  And so far I’ve done a pretty darn good job of that.  With my most recent A1C of 6.6 (for those of you who don’t know, that’s exactly in my goal range), I can honestly say that I’m doing alright.

And all these years have landed me here.  1 day from my first continuous glucose monitor (CGM) insertions, and 3 days from my first inpatient admission in the clinical trial for the artificial pancreas project.  It’s really crazy when I think about it because a few months ago this was something that I was reading on the news and then one day my amazing fiancé  Zach called me and said he found this trial and that he thought I should be in it.  To make a long story short, we contacted the research team pretty much immediately and after a few phone calls, emails, and a health screening I was in! Almost every day this week I have seen a news article or a video online about how revolutionary the artificial pancreas will be, but I don’t need these pieces of media to ensure me that what I have the privilege of taking part in is in fact going to be the “holy grail” for diabetics.

Sometimes when I tell people that I am taking part in this trial, they don’t really understand why I am doing it.  “Why would you want to get poked with extra needles and hooked up to monitors all day? I’m sure there are plenty of other people who would be willing to do that.” I only have one answer to that, and it’s HOPE.  Ever since I was diagnosed when I was 9 years old, the idea of a cure or even a solution has dangled over my head like a horse with a carrot on a stick.  Less than a year after I was diagnosed I was watching Oprah with my Mom and my sister who was 7 years old at the time. It was one of Oprah’s “Dream Come True” episodes, and I remember that even at such a young age, my sister said “If I had one dream that I could have come true, it would be that Lesley’s diabetes would be cured.”  Cue the water works.  To this day I can’t recall that moment and not cry, the love behind that simple statement made by a 7 yr old girl has carried with me to this day, and her unwavering support in finding a cure remains present.

Knowing that we are SO close to having a piece of equipment that will take the pressure off of all the day to day hassles and managements that come with being a T1D, and that I have the honor and opportunity to be a part of this discovery gives me the first real, honest, and undeniable hope that the cure is on the horizon.  Am I terrified of IV’s and needles? Absolutely.  Do I enjoy hospital settings one bit? Nope.  But in my mind the answer is simple, when I am asked why I am doing this, HOPE.  Not just for me but for every other adult, adolescent and child who carries the disease with them.  Hope for every mother, father, brother, sister or caregiver who lives with or cares for someone who has T1D.  And it’s hope that keeps me going.

In the meantime, I have packed an absurd amount of clothing and personal items to help me feel more comfortable while in the hospital (like the super awesome unicorn pillow pet that my sister got for me).  My dad makes the 3.5 hour trip from New Jersey to DC tomorrow to then make the 2.5 hour trip from DC to Charlottesville on Sunday to stay with me for the week while I participate in the trial.  My family is my rock, my mom, my dad, my sister and my fiancé.  Since day 1 they have ALL been behind me 100% and the fact that that my dad is able to come out to Charlottesville at UVA to be a part of this with me is more of a comfort than I would ever be able to express in words. So thanks Daddy!

Tomorrow my good friend Carey is going out to Charlottesville with me for the CGM insertion and calibration, and I’m half way between terrified because I will have two foreign objects under my skin, and super excited because this means the trials are really happening!
So here is my story.  Opportunity, hope, and inspiration all rolled into one, for me at least.  I think this is a once in a lifetime opportunity and I just want to document and share my journey.  Let’s dia-beat this!

                                                                 Packed and ready to go!

1 comment:

  1. I want to go! That's totally awesome!

    ReplyDelete