Happy 18th to my T1D!

Two days ago, my type one diabetes officially became an adult. 18 years ago I was diagnosed September 7, 1994. Nine days before my 10th birthday. It's probably one of the few days of my childhood that I can remember so clearly and vividly, and that both of my parents remember exactly the same way. I was at my pediatrician for my yearly physical, and we had gone a few days early because my parents didn't want me to miss any of my first week of 5th grade. I remember that I was thirsty ALL the time, drinking anything I could get my hands on, and I remember that I had to pee every 5 minutes, but I don't ever remember feeling as sick as I must have been.

When we got to the doctors office they did the usual tests like a urine culture, and when that showed a high glucose level they checked my blood sugar. All I know is that it was somewhere over 800. I can't give an exact number because the equipment in the office wasn't able to read anything over 800, and if you know diabetes then you know that's bad news. At almost 10 years old I weighed only 42 lbs and was severely malnourished. My parents knew something was wrong, but couldn't pinpoint what and finally knowing what the problem was meant that there could be a solution and that my downward health spiral could cease. I remember sitting in the office of my pediatrician, and I remember my mom ripping the lollipop out of my mouth when he said the words "your daughter has diabetes". From that moment until when we got home is cloudy. We had an appointment with an endocrinologist the next morning and I was given a list of foods I could and couldn't eat that night. Honestly I can't remember what was on the list, but I know that I was able to eat all the broccoli with melted cheddar that I wanted. Cheese has and always will be one of my favorite foods so at that point I was just happy to be eating all the cheese I wanted, blissfully unaware of what happens next when someone is diagnosed with Type 1.

The next few days are a blur, I remember asking my endo when I would have to start getting shots, thinking it would be in a week or so, and I remember him saying "right now" which was a pretty big shock. But my parents stepped up and learned to do the injections on me right then and there. Mom, Dad, I won't ever forget what you both did for me starting that day.

Some people experience a traumatic event in their lives and it gets blacked out or it becomes a blur. For me the most traumatic event was also the most vivid and the most inspiring. My doctors have told me that had I waited the nine days until my birthday to have my physical that I wouldn't be alive, and to this day I still can't believe how incredibly lucky I am that I survived. I firmly believe that everything happens for a reason and I know that I was given Type 1 Diabetes because not only am I strong enough to handle it, but I'm strong enough to fight for a cure.

18 years after my diagnosis I am the healthiest I have ever been. I'm not going to pretend that it's easy, and I'm not going to pretend that I'm perfect. I have the occasional 300+ blood sugar as well as the 50- but that comes with the territory and while I do the best I can, I'm only human.

If it wasn't for the dedication, support, and love from my family and friends all these years I wouldn't have made it to where I am. So thank you to all of you, I don't know if I can ever have words to express what you all mean to me, but I am forever grateful for everything you have done and continue to do.

Through my involvement with the clinical trials of the Artificial Pancreas Project, I have every bit of confidence in the world that what I have to do on a daily basis to manage my blood sugars will soon be a thing of the past. In the meantime, I am just as full of hope as ever.

There is no place like home

I know that it's been a while since my last blog post, and I do apologize for that, but I have a very good explanation. A couple of days after I completed the incredible, inspiring, and just plain awesome outpatient Artificial Pancreas Project clinical trial at UVA I headed out on my first airplane trip ever to vacation with my fiancé Zach. Now the truth is, the reason the trip was even a possibility was because Zach was presenting at an important neuroscience conference in Palm Springs, and we have a lot of family on the west coast that we love dearly and very rarely get to see so we took a couple of extra days to spend some time with our loved ones. I've said it before and I'll say it again, family comes first. And boy am I grateful for the family that I have.

Before I get into that, I want to talk a little bit about traveling with diabetes, specifically an omnipod wireless insulin pump. I've been hearing horror stories left and right about how TSA has been ruining pumps, giving ridiculously invasive pat downs, and just generally being rude to people with Type 1 Diabetes and insulin pumps. But I can say with 100% confidence that traveling with diabetes doesn't have to be difficult as long as you keep a smile on your face and realize that the airports only do what they do in the interest of the safety of all their passengers. All of my equipment and supplies ran through the carry on X-ray with no problems. I traveled through a few different airports, from the major ones such as Dulles International and LAX to the tiny ones such as Palm Springs and Tucson. And with the exception of Tucson which seemed to only have metal detectors, I went through the full body scanner every time and upon telling them I had a wireless insulin pump, all I had to do was touch the omnipod with both hands, have my hands swabbed with a dry circle of paper, that swab was then sent through a computer and after about 30 seconds total I was cleared and on my way to my flight. I suppose my point is, of you're diabetic and wear an insulin pump, just remember that you are in fact a little bit different from the person next to you (but really who isn't?) and if you just smile, stay honest, and try to relax traveling can be easy for someone with T1D!

That being said, vacation clearly agrees with me. I had my basal rate practically shut off at least half of the time I was on the west coast, and if I did the full recommended amount of insulin for the carbs I was eating, I ended up sucking down glucose tabs like it was my job. As if the benefits of the Artificial Pancreas weren't clear enough already this made it painfully obvious to not only myself but to the family around me that doesn't normally get to see my day to day battle with T1D. One night at dinner we were all discussing my recent opportunity to participate in the Artificial Pancreas outpatient trials, and I had said that I can't remember a time that all of this day to day managing of diabetes wasn't just how life was, and my amazing grandmother who is bravely battling breast cancer said something that was so simply insightful that it will stick with me forever. She said "It's a new normal." And she was completely right. Something so unexpected and so life changing can come into your world and in the blink of an eye and suddenly it's just how your life is. I have no family history of Type 1, and to make a long story short, I had a blood virus that triggered an autoimmune reaction that caused my diabetes. Or at least that's the best explanation my doctors have been able to find. So was it bad luck or good luck? I would never wish what I go through on a daily basis on anyone, but I do firmly believe that it is what has made me who I am. The strong, prepared (if not overly so), dedicated, appreciative and grateful for every moment on this planet girl that I am today wouldn't exist if I wasn't presented with this challenge in life.

It only gets better

For me to say that the Artificial Pancreas will be a massive game changer for Type 1 diabetics would not be giving it enough credit. Just to be clear, the multi-fanny pack belt system is not a planned part of the finished product, and most of the components of that were running as a backup so there could be a flawless transition if something went wrong. So the end goal is in fact for the user to just carry the cell phone, but when Zach asked me if I would still want the Artificial Pancreas even if it meant I would have to carry a pouch of equipment all the time, my answer was without a doubt YES. I would have tried my best but the AP did a better job of controlling my sugars and keeping them between 100 and 120, and I didn't have to worry if I was making the right decisions. The last night that I was in the hotel, my sugar started dropping before bed. I can usually feel it when it starts to drop quickly and I definitely felt it so both Zach and I were convinced that I was going to need a juice box, but we held out because I've seen what the AP is capable of and wanted to see it do it's thing again. So I went to sleep. I knew if it started to drop too low an alarm would sound, so I thought I might as well get some shut eye in the meantime. 8 hours of uninterrupted sleep later, I woke up and had to ask if I went low and just didn't remember, because it was just that incredible. The AP knew that my sugar was dropping, and started to cut off my basal rate soon enough that I only dipped a little below 100 and stayed in normal range all night! The AP delivers insulin a little differently than the standard insulin pump. To deliver the basal insulin it gives a very small bolus every 5 minutes, and it adjusts the size and frequency of that very small bolus based on what it senses your blood sugar to be and how it is trending. With such small basal boluses it's possible for the AP to regulate the blood sugar in a human body before it becomes problematic, and if you have T1D you know that there are a million different reasons and variables that could cause your blood sugar levels to be problematic.

I returned home from Charlottesville Friday afternoon and in the two nights that I've been home, my sugar has gone low each night (last night it was all the way down to 41) despite going to bed with sugar levels that had been very stable between 140 and 150. I already knew what a difference the Artificial Pancreas could make, I had the amazing opportunity to experience it first hand over the course of both the inpatient and outpatient trials. But to experience both extremes of the spectrum in back to back nights where my sugar was perfect one night and then horribly low the next really hit home with just how important the Artificial Pancreas is. I don't know if I will ever be able to properly express how grateful I am for everyone who has had a hand in the development of the Artificial Pancreas, and everyone who has made my trial experiences so incredible. I can only hope that the data my trials provide helps to move the AP to market, because the sooner this is available, the sooner lives will change. I've said it before and I'll say it again, I have more hope than ever knowing that I won't have to do this all forever, just a little bit longer.

This. Is. Awesome.

And it begins! Yesterday I was hooked up for the first time to the Artificial Pancreas cell phone platform, but up until this morning it was being used the same way my regular omnipod insulin pump would have been. Most of yesterday was working out the technical aspects of the various components. The initial configuration involved 2 fanny packs, one camera bag and two receivers for the CGMs, and quite a bit of what I'll refer to as tinkering to get everything in place and communicating well with each of the other systems.  To tell the truth, I felt like Tim The Tool Man Taylor with my belt of fanny packs and it was kind of awesome. Despite going low at around midnight, my sugars stayed pretty stable throughout the night even though the sensors seemed a little sensitive and needed to be calibrated a couple of times. But hey, if all that happens overnight this time is a finger stick every few hours instead of an IV blood draw every 30 minutes, I'm not complaining one bit! 

This morning after taking what I would consider a world record short shower (just over 4 minutes!) to prevent losing my connections with the systems, we went into closed loop mode and let the Artificial Pancreas do its thing. We had a minor road bump with the breakfast bolus that set off a hypoglycemia alarm, but a quick system reset put everything back in check and the rest of the day so far has been smooth sailing. 

As a general rule I try not to bore anyone by listing the things I've done today, but I feel like this is probably an exception so here we go: I ate lunch around noon which was macaroni and cheese, and then I'd like to say I did something grand with my day in the hotel, but the reality is that I decided to take a nap. So for about an hour and a half I slept and I didn't have to worry about my blood sugars because the Artificial Pancreas was doing exactly what it was supposed to do.  My sugar went up a little, it increased my basal a little, and my sugar stabilized. My sugar began to drop a little and it decreased my basal a little, and it stabilized again. I've been up for a few hours now and still feeling great. To say that this is the most incredible thing I've ever seen is a very serious understatement. THIS IS AWESOME! And I didn't have to tell it to do a thing! I didn't have to decide what percentage to decrease my basal rate by or for how long, I didn't have to decide if a correction bolus was necessary and if so was the bolus going to be enough.  It made those decisions for me and did exactly what I would have tried my best to do. Today it's taken the weight of being diabetic off of my shoulders, and it's not even dinner time yet! 

Let's do this

One more day! Tomorrow Zach and I head back to Charlottesville. I have the incredible opportunity to be a part of history. I still can't really believe how fortunate I am to have the opportunity to participate in the very first set of Artificial Pancreas Project outpatient clinical trials in the United States. It's almost like a dream that I'm afraid to wake up from and find out that the  Artificial Pancreas hasn't been developed, that we aren't this close to taking some of the daily weight off of managing diabetes, and that there are no trials for me to participate in. But every morning for the past few weeks, I've woken up to find that the dream is a reality.  I sincerely hope that everyone who has worked so hard to make the AP what it is and to get it to where it is today knows how grateful myself and the millions of other people who's lives are touched by Type 1 Diabetes everyday truly are. 

The day before I went for my inpatient trials, I was feeling very much the same, but at the same time quite differently than I am now. I was and still am incredibly grateful for the opportunity, ridiculously excited, and practically counting the hours until the trials start. But this time is different because all of the fears I had of the hospital and the IVs in my arms and not knowing what the to expect from the Artificial Pancreas itself are all gone. This time it is pure and simple excitement. I've seen that this technology is more than capable of doing what it is meant to do, I don't need to be in a hospital bed, and there are no IV blood draws (I still don't think anyone could actually enjoy an IV). I've said it before and I will say it again: This is REAL LIFE. Now before I get ahead of myself I want to offer the reminder that this is just the very first set of outpatient trials here in the US, so I can't leave the hotel but everything moves in stages and with this being just the beginning, it can only get better from here.  

Right now I have the 2 CGM sensors that were put in yesterday and my normal omnipod. Tomorrow at this time I'll be getting ready for bed with my AP cell phone, and knowing that pretty much means I'm too excited to sleep tonight. Sort of in the same way that it's hard to sleep when you're a kid the night before leaving for a really awesome yearly family vacation to an amusement park (Mom, Dad...Hershey Park?).  I would have posted earlier today but honestly, every time I tried writing I just started crying again (that's pretty much what I do these days) but its always happy tears because I know I won't have to keep doing what I do forever. Just a little longer.  I'll do my best to sleep tonight, but knowing what's just around the corner tomorrow makes that pretty much impossible.

Round 2

Nothing is ever easy. But I don't need easy, I just need possible. The past 24 hours have been an adventure, and the actual trial doesn't even begin until Wednesday! Let's back up to yesterday morning when my tire pressure light came on alerting me to the fact that I had a tire low on air (not noticeably flat, just low). Zach found the tire, filled it with air and it was completely fine the entire morning, but at about 8:45pm last night when we went to check on the tire to make sure it was holding up we found a gigantic screw or bolt or some piece of hardware that was the culprit. Having scheduled my continuous glucose sensor placement for 10:30am this morning, naturally when I realized that the car is not going to make it to Charlottesville in its condition at almost 9pm on a Sunday night before a federal holiday, I panicked.  In retrospect this was nothing to be panicked about, I think I was just so worried that I was going to miss this opportunity and these trials are SO important to me, that my gut reaction was just to panic. Fortunately for me, I have my own knight in shining armor who holds me together or picks up the pieces when things like this happen, and without fail Zach was there for me just like always to fix the situation. He spent about an hour on the phone calling literally every tire place he could find in the DC/MD/VA area finding someone to either patch or replace the tire, and by 10:30am this morning we had a fixed tire and were on our way to Charlottesville a mere 2.5 hrs behind schedule! Easy? No. Possible? Always. 

The culprit.

This time Zach was able to come with me for the CGM insertions, and having done this one time before, I sort of knew what to expect which made it a little less scary, but not entirely anxiety free. For the trials, I'm required to have two continuous glucose monitor sensors placed under my skin to check my blood sugar every few minutes. One is used for the artificial pancreas, the other is a backup in case the first fails because they require a 2 hour warm up period, and if you know diabetes, 2 hours without proper glucose control has the potential to put you in deep trouble.  

When we got to Charlottesville, Zach and I met with Daniel, my main contact for this trial. After going over exactly what would happen beginning Wednesday at the actual trial, it was time to insert the CGMs under my skin on my abdomen. For those of you who know me, you might already know this but it took me 9 years of injections to warm up to the idea of an insulin pump because I couldn't come to terms with having something under my skin all the time.  That being said, when Daniel asked me if I wanted to try putting one of the sensors in myself what went through my head was "No no no no never no no." But what came out of my mouth was more like "Uhhhh ummmm hmmmm uhhhh ok I can try". So we went over the directions, and with Zach helping read me the instructions, Daniel helping click the pieces into place, I inserted a CGM in my own abdomen! In about 5 minutes I was now able to conquer what had taken me 9 years to do previously. I was pretty darn proud of myself, but it was really a team effort. In the interest of saving time I asked Daniel to handle the second one for me, and now I've got my 2 sensors, ready to go for Wednesday. 

Look I did it!

On the drive home today I cried. Having these tiny little things under my skin means that it's really starting. That I'm really going to be one of the very first 5 people in the United States to use the Artificial Pancreas on the cell phone platform (I'm the 4th person, to be exact!)  and that I get to witness first hand how awesome the Artificial Pancreas is in an outpatient setting, in a real world setting.  Today was a very long day. Between the driving in Memorial Day traffic, the tire incident, and the nerves about inserting the sensor, I'm ready for an early bedtime tonight. But it was worth it a hundred times over and I would gladly do it all again. Wednesday here I come!

Let the countdown begin

6 days from today I check into the hotel in Charlottesville and begin my outpatient trials of the Artificial Pancreas. It's pretty much all I've been thinking about for the past few days, and it's kind of hard to believe that I'm actually going to be in this trial. I get a break from my diabetes. A REAL break. Doing the inpatient trials (see earlier posts below) was really incredible and even though I was tethered to a computer by several cords, it still felt like freedom. Honestly, I don't even really remember what life was like before I was diagnosed. For 17 years this has been a part of my life and that's just how it's been. But to now know that there exists a piece of technology that can change all of that is just so awesome. And this time it's being used outside of the hospital! I don't know if there are people out there who enjoy or even just don't mind being in a hospital, but I am most certainly not one of those people. So when I found out that the outpatient trial would be held at a hotel I'm sure you can guess how excited I was.

I check in late in the afternoon on Wednesday, May 30th and check out around lunchtime on Friday, June 1st. Again I'm packing way more stuff than I need to be bringing, but it's different this time because I have free reign inside the hotel. I won't need to push a button and call for a tech when I want to get up and brush my teeth, I won't need to spend the day in bed watching tv (not that I necessarily minded that part...), and I won't be surrounded by hospital equipment. I'm not allowed to leave the hotel for the duration of the trial, but I'm more than OK with that. Even inside the walls of a hotel this will still be the Artificial Pancreas doing its thing in REAL LIFE. In 6 days.

Good things come to those who wait

Living in this day and age, we are not strangers to the term "technical difficulties" and as with most things in life, the trials are no exception. That being said, I had to change my dates for the outpatient trial and will now check in at the hotel May 30th. This is something that I would have liked to have posted sooner but I had a bit of a family emergency and in my book, nothing is more important than family so my blog had to wait. In a way, needing to delay the outpatient trial has been fortunate because now I have the ability to offer what support I can to the rest of my family who has always been there to support me. And things are really starting to look up, so aside from the fact that I'm still the one running the show for my pancreas for the next couple of weeks and not the cell phone, I can't complain. And even though my outpatient trial has been pushed back a little, they have still begun! I invite you all to watch this short video of the very first outpatient Artificial Pancreas trials in the US.

http://www.youtube.com/watch?v=ZnHDCaulumc&feature=youtu.be

Go ahead and try to not be excited. I dare you. It's impossible knowing that this technology is out there! This is monumental and I can't wait to be a part of it. 

On an unrelated note, this past weekend I officially became an AMERICAN UNIVERSITY ALUMNI!!! I wasn't sure I would ever make it but I worked my tail off and I've got to say, it feels good.

 Dad was in charge of the cake. Pure perfection.

The future is now!

There have been very few times in my life where I have found myself to be speechless.  Don’t get me wrong, there have been plenty of times that I have been voluntarily quiet ranging in reasons from not wanting to sound uneducated on an issue to just not feeling much like speaking at the time.  But this past Tuesday I got an email and a phone call that rendered me just absolutely speechless.  I got an urgent email from Molly McElwee, R.N. (who I know from the inpatient trials that I did last month) saying that I needed to call her RIGHT AWAY about the outpatient  cell phone trials.  I think we can all probably guess by my reaction to having the opportunity to just hold the Artificial Pancreas on a cell phone platform that when I got this email I was beyond excited to hear any news, since the FDA very recently approved outpatient trials in the United States (you can read all about it at http://www.jdrf.org/index.cfm?page_id=117007).  And then it happened.  I was given a set of dates in May, asked if I could do it, AND I WAS IN! I have the once in a lifetime amazing, incredible and awesome (yes, all of those) opportunity to participate in the very first outpatient Artificial Pancreas Project clinical trials in the US!!! I honestly didn’t have words for the excitement and gratitude and hope that I was feeling.  I got off the phone and I cried. I just cried, for probably a solid 5 minutes before I pulled myself together enough to call my fiancé, my mom, my dad and my sister.  I can’t even sit here and type this without crying thinking about how incredible this is that the outpatient trials are already beginning! And how I am so, SO fortunate to be able to be a part of it.

About once every week I check the government website for clinical trials pertaining to the Artificial Pancreas, just to see what’s out there and what I’m eligible for to help out with the Artificial Pancreas Project in any way I can. Early last week I saw what I thought might have been this outpatient trial, and emailed Molly, asking if the trial was actually what I thought it was, and I was hoping to hear some good news about how much progress the trials are making but not in my wildest dreams did I expect to be given dates for the trials to happen just 3 weeks from now.   

I’m scheduled to check-in at the hotel where this is all taking place on May 15^th, just 2 days after I graduate with my BA in Psychology from American University.  Having taken a non-traditional path through my schooling, and finally getting my degree 10 years after graduating from high school, I was already feeling pretty good about graduating.  But this, the opportunity to once again be a part of something that is so much bigger than anything I’ve done before is by far the best graduation gift I could ever have hoped for.  

Breathe easy

"To laugh often and love much; to win the respect of intellingent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one's self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived - this is to have succeeded"

Just about two centuries ago, Ralph Waldo Emerson had it figured out. At least once a week, usually when I feel that life is starting to get a little bit chaotic, I read this quote and it reminds me of how I strive to live my life and gets me back on track. I'm almost certain that when Emerson wrote this, he didn't exactly have diabetes in mind. It seems to me that one of the more common things I read on T1D blogs is that people refuse to let their diabetes define who they are. I very much so respect this statement, but for me personally I feel differently. I honestly believe I am the person that I am today because of my diabetes, not in spite of it.

From the moment I was diagnosed my parents made certain that there was absolutely nothing to be ashamed about when it came to having diabetes. We were always the family counting my French fries and drawing up insulin into a syringe at the table (not under it, right on top out in the open) when we went to restaurants. We were the family who walked back into the kitchen to get a glass of juice ourselves if the waiter wasn't understanding the severity of my low blood sugar. And in elementary school when I had to check my sugar in the classroom, my friends would play rock paper scissors over who would get to push the button to prick my finger. To say that I had an incredible support structure growing up would still not be giving enough credit to everyone I had in my life. Yet despite having had (and still having) a greater support team than any one person deserves to have, there have been certain truths about having Type 1 Diabetes that I needed to learn on my own. First and foremost, if you have diabetes, you are brave. That is an unconditional statement that applies to every single T1 diabetic. We are brave for ourselves, we are brave for our families who watch us go through the day to day struggles, we are brave for other diabetics. When I was in the hospital for my trials last week, the words of support that I heard most often were "You are so brave for doing this", and the truth is that every time I heard that I thought, "I've spent the past 17 years being brave, this is nothing!" and the same thing goes for everyone else from the day they were diagnosed. Yet I can't help but think, maybe if I can be just a little bit braver for just a little bit longer, it might help people so that they don't always need to be as brave. Of course, once you have experienced the intensity of dealing with diabetes, you will forever be brave no matter what. Even when you are scared and anxious and just want to cry, you will still be more brave than a lot of people will ever know how to be.

Another truth about having T1D is that if you can be prepared to handle your diabetes, then you can be prepared to handle just about anything. At any given time I carry around a purse that has enough supplies in it to get me through the zombie apocalypse. My most recent inventory in addition to all my supplies related to being diabetic included 2 granola bars, a bottle of water with a built in Brita filter, 4 bandaids, antibiotic cream, a small screw driver, 3 packets of instant coffee, 2 travel packs of tissues, a packet of baby wipes, a spoon, and a stick of sunscreen. I will never be one of those women who carries a chic clutch with them in place of a giant handbag (note the image below), and I'm ok with that. Once you have figured out everything that goes into what it takes to be fully prepared to venture out in the world as a diabetic, you can figure out how to prepare yourself for any scenario in life.

If I were to sit here and list all of the things about being diabetic that contribute to the person that I am, I would ramble on forever. But what it boils down to is that the responsibility and the bravery and the strength that it has taken all of these years on the part of not only myself but also my family and loved ones has had more to do with me being me than anything else that I can think of. And I wouldn't trade it for the world.

The end is just the beginning

Yesterday was a marathon. Usually when I wake up for the day before 6am I end up taking at least one nap during the day, but that just wasn't on the books for the day. When I was admitted just before 7am for my final inpatient trial for the artificial pancreas, things were a little more calm than they were the first time. I don't know if it was because I knew what to expect in regards to the procedure when I got there, or if it was because I had already gotten to experience how much weight the artificial pancreas system lifted off my shoulders and couldn't wait to experience it again, but I felt so much more comfortable right from the start. Once the IVs were in, the sensors and pods were activated, and I had my tethered fanny pack on my waist we were ready to go again! Most of the day was really similar to the first admission where my meals were extremely regulated, blood was drawn every 15 or 30 minutes, and I needed a technician to come with me and drag the rolling table with the computer that I was tethered to. Now most of the time when I was followed by the tech and the table, it was only a few feet to use the restroom, brush my teeth, or just little things like that. But yesterday afternoon was the exception. The artificial pancreas was being tested to see if it could catch a hypoglycemic episode (low blood sugar) and alert me so it could be treated before my sugar was actually low. They figured out that the best way to do this was to put me on an exercise bike for four 15 minute sessions with a five minute break between each session. This particular study is a worldwide multicenter study and is extremely regulated, and what this means in regards to me is that since the exercise bike was on a different floor of the hospital, I needed to be transported in a wheelchair. Would you believe that it took a collaborative effort from 7 people to transport me and all of the equipment around the corner and down one floor?! My dad keeps saying "It takes a village" and he really couldn't be more right.

The truth is that I am really not fond of going to the gym. Being a full time student in Washington DC I generally get a decent amount of exercise from walking on a daily basis, and making time to get to the gym just isn't a priority right now. That being said, I was not exactly happy to be doing all of this exercise with an entourage of 7 people watching me, but it was part of the trial and I knew that getting into it, and if anything helps push the progress of the artificial pancreas forward then I am all for it. If you don't already know, exercise generally drives the blood sugar down, some people at a quicker rate than others and the objective was for the artificial pancreas to recognize that was happening, adjust insulin accordingly, and provide a warning prior to low blood sugar with enough advance for the person to treat it to prevent a dangerously low number. Now for me I don't usually go low during the exercise, it's usually soon after and this time was no exception. About 30 minutes after I stopped exercising, I told the nurse that I felt like my sugar was starting to drop, and instinctively before I could stop him my dad was out of the room telling the doctor that I needed glucose. I've always been really blessed with the ability to feel when my sugar is moving in one direction or another and dad knows that, so when I say I feel low I'm almost always right. The doctor told my dad that they needed for the yellow warning light on the artificial pancreas to turn red before they were allowed to treat and immediately after she said that, the light turned red! I wasn't actually low yet, I was still in the 80s but the system had detected that I was dropping at a fast enough rate to treat the low before it became problematic. Essentially what that means is that the computer, the medical team, and myself were all in agreement at the exact same time as to what needed to happen to help keep my sugar in a healthy and safe range. How awesome is that ?? Until it actually happened I didn't realize what a big deal it was, but that showed me firsthand that this technology REALLY works. It was truly incredible to watch and I started crying because it was at that exact moment that I realized precisely how great the artificial pancreas is. I already knew that it was amazing but to see it do exactly what it is supposed to do to my own body was just simply incredible.

I slept really well last night knowing that the computer had my back. And it did. I was told that I stayed roughly between 100 and 115 all night, and as a result I woke up feeling really great (except from the sore legs from the bicycle!). Exercise, IVs, and regulated food intake aside, when I was discharged this morning I was feeling a combination of emotions. I felt a sense of pressure knowing that I would have to go back to managing my own diabetes immediately, and go back to dealing with the daily obstacles that this disease comes with. But more importantly I was feeling hopeful for the future. Going into this trial I didn't really know what to expect. I had built it up in my mind as this almighty life changing experience, and it turned out to be everything that I had imagined. I now know with complete certainty that one day in my lifetime the burden of Type 1 Diabetes will be lightened by this technology, and that it already exists, and most importantly that it ACTUALLY WORKS. The hope that this gives me for not only my future but for the future of everyone effected by this disease is overwhelming. To every mother, father, sibling, relative or friend of someone with Type 1, my only words of advice are to never ever give up hope because a better tomorrow is right around the corner. I've seen it, I've experienced it, and I know it can only get better! LET'S DIA-BEAT THIS!!!

Work hard to play hard

Once again it has been an awesome day. Awesome, but incredibly exhausting. I have lots to share tomorrow, but for tonight I will leave you with these pictures from today.

One more time

I can't say that anything remarkable occurred today in regards to my diabetes, but regardless it's still been a good day. Since this week is my spring break and I'm out here in Charlottesville, dad and I decided that we would do some tourist type things and drove out to Monticello, the house designed and lived in by Thomas Jefferson (you know, the house pictured on the back of the nickel). Usually history isn't my thing, but the trip turned out to be pretty neat, and it was 82 degrees without a cloud in sight and I couldn't have asked for a better vacation day. As usual I kept up with checking my sugar and continued managing my diabetes the same way I always have, and each time I checked my sugar, my dad almost instinctively asked "well, what do we have?", even in the middle of the night when I was almost 100% sure he was asleep he still asked (which startled me a little because I totally wasn't expecting any noise). I've always written my blog as someone who has diabetes themselves, and being in my position I can only begin to imagine what it must actually be like to be the parent of a child , regardless of their age, who has Type 1 Diabetes. My incredible boss and friend Elisabeth LaMotte has written a beautiful piece that I would like to share with you. Her daughter Charlotte Rose was diagnosed four years ago and shares the same daily struggles that I do with this disease.

http://www.huffingtonpost.com/elisabeth-joy-lamotte-licsw/joy-and-loss_b_1337775.html?ref=mindful-living&ir=Mindful%20Living

Speaking of parents, while I sit writing this tonight in the bed and breakfast, someone knocked on the door, and it turned out that we had mail! My amazing, loving, supportive and thoughtful mom had mailed a card here to me and dad from NJ before we even got here to wish us lots of luck and love on this journey. She wasn't able to come with us this week but has been every bit as supportive as though she was right next to us the whole time. That card made my day, thanks mommy!!

Tomorrow I go back to the hospital for my second and final admission in this trial, and I am more than ready to go. This time I know pretty much what to expect, but I'm still anxious for two reasons. First because I am still really not a fan of the two IVs that need to go in my arms, no matter how great the nurses are (and they really are), I have a hard time getting over how gross it is. The second reason that I'm anxious is because I know that this is the last time for a while that I will get a break from my diabetes, that I will get to be truly carefree. But that's really not something I want to think about too much, I'd rather just enjoy it tomorrow!

The light at the end of the tunnel

After finally getting a decent nights sleep in addition to getting to sleep in a little, I woke up to a text from my mom that was so heartfelt and full of love that I couldn't help but cry. Starting the day like that, I knew it was going to be a good one. The computer that was making great decisions about what to do with my blood sugars and insulin had made overnight decisions that were just about perfect. The doctor told me I stayed steady and almost the entire night, which is something that I try very hard to control, but it doesn't happen all the time. A little before lunch time I had the pods and sensors taken off, the IVs taken out, and new sensors put in for my second admission on Thursday. It was then that Molly told me that she had "the most awesome thing ever" that they were going to let me see later, and of course that had the wheels turning in head almost immediately because really what could be better than what was already happening?? But I knew I had to wait until Thursday to see so I tried to not think about it too much. At that point I got to leave the hospital and have a nice lunch outside in the beautiful 80 degree sunny weather with my dad before I went back to have my new sensors calibrated again. On our walk over to the restaurant, I said to my dad "Ugh, I guess this means that I have to start taking care of my own blood sugar again huh?". His simple response was so inspiring and comforting in a way that only a dad's words could be, "Eh, not for long." And I felt good because I knew for certain that he was right.

After lunch we headed back to Molly's office to have my CGM sensors calibrated. When we got there I was told that originally they were going to wait until Thursday, but decided to show me that awesome thing then instead. I was already having a great day, and I just about fell over when she brought out THE artificial pancreas!! No wires, no fanny pack, no computer on a rolling table. Just a cell phone. Now when I say JUST a cell phone, by no means am I trying to compare the greatness of this piece of technology to a simple cell phone. But there is was. No bigger than an iPhone and easily fit in a pocket or a handbag, was what has been previously called the "holy grail" for diabetics. I was able to watch as it worked on a simulated trial, see it suspend insulin as the blood sugars were trending low, fiddle around giving boluses, and watch it perform what an entire team of doctors, nurses, and technicians had just finished doing to me. I can honestly say that it is in fact the most awesome thing I have EVER seen! This tiny little cell phone sized piece of technology will be both a figurative and literal life saver for anyone who's life if touched by Type 1 Diabetes. Then came the real kicker, my dad and I got to meet Dr. Boris Kovatchev, the principal investigator and pretty much the mastermind behind the JDRF Artificial Pancreas Project (among many other things). I think it's pretty clear by the photo that I was beside myself. After talking to Dr. Kovatchev for a few minutes, I thought I was doing a decent job of holding myself together, but as I talked about how life changing this is my eyes swelled up and next thing you know everyone is scrambling to find tissues for both me and my dad to dry our eyes.

I know I keep saying it, but I just can't emphasize enough how lucky I am to get to be a part of all of this. I only have one more admission left in this trial and then it's back to managing it all myself. But there is a light at the end of this tunnel and it's brighter than ever.

Freedom

For me to say that today has been a great day would be a pretty extreme understatement. First I would really love for everyone to take a look at this website, its where all of this is happening, and gives some information behind the wonderful team that is making this such a great experience.

http://www.medicine.virginia.edu/research/institutes-and-programs/cdt

I think that by now we all know how anxious and excited I have been for today, but having my dad with me and being welcomed by a team of doctors and nurses that were smiling and happy and friendly even though it was only 7am and they had all been up for hours was so much of a comfort that any of my anxieties disappeared pretty much immediately. Pretty much right away there was what I can best describe as a well organized tornado of all the members of the trial team surrounding me and getting me hooked up to all the right equipment, including my IVs. And just like that, it began. And my diabetes was out of my hands and under the control of the computer. The basic setup has me wearing a fanny pack full of receivers hooked to a long series of wires that are attached to a computer that's attached to a rolling table. Basically if I need to get out of bed for anything I need to have a technician follow me with the wires and the table, but honestly I don't mind. I don't mind because being tethered to that set of wires and that computer have given me the more freedom than I've had in years. I usually check my sugar 8 to 10 times a day, every day, and with each check I need to make a decision about what is best for my body. But today, technology reigns supreme right now and I haven't had to think about a thing and it has been awesome! The computer has me all figured out and I feel great. I have to have blood drawn from my IV every 15 or 30 minutes, which I can't really say is fun but I've got great nurses so I'm getting by. It's been a day full of relaxing and watching tv and napping, which is exactly what I want to be doing on my spring break. I think I'll sleep well tonight for the first time in a while because I know I'm in such good hands here, and I won't have to worry about my sugars one bit overnight. And my unicorn pillow pet will probably help too.

Just perfect

I've got my hot pink velour pants, sensors galore under my skin, and a sweet fanny pack to carry all my equipment. Even my IV ports are pink! Updates coming soon!

The calm before the (awesome) storm

I've always considered myself to be a positive person and I try to have a generally sunny disposition, but knowing that tomorrow morning I will be admitted for my first clinical trial for the artificial pancreas project has me all but bursting!! I'm staying in a really charming bed and breakfast about a mile from the hospital and I've spent the past hour pacing back and forth across the room packing and unpacking and pretty much just going into a borderline neurotic organizing fit. Of course dad doesn't seem phased by me one bit, but then again he watched me grow up, so this probably seems pretty normal. It's just what I do to help me cope when I'm nervous or anxious or excited, and tonight I happen to be all of those things. Tomorrow I get the first break from managing my diabetes since I was diagnosed. When you have a disease that affects pretty much every part of your body, it's always on your mind even when it's not mealtime. If my sugar is high I can feel it in my blood, my whole body hurts. And if my sugar is low sometimes I lose parts of my vision (kind of like when you stand up too quickly and things go black for a second) in addition to shaking and just feeling terrible. And when any of this happens, I know it's up to me to correct it. Its up to me to do the calculations of insulin and carbohydrates, to check my sugar every 20 minutes to make sure it's moving in the right direction, and to keep myself alive. It's not easy. And honestly I can't remember a time when this wasn't how my life just is, but tomorrow I finally get a break. The technology exists to take that weight off my shoulders, and even just knowing that is an incredible feeling, but I get to go beyond that and actually EXPERIENCE it. It's only for about 30 hours at a time, but that's all I need. The hope that this trial gives me let's me know that I only need to keep doing what I do every day to manage my diabetes for a little bit longer, but not forever. If I get any sleep tonight it will be a small miracle because realistically I'm much too excited to sleep, but tomorrow is a big day and sleep or not I know it's going to be great.

Thoughts

As I sit in bed, one night from heading out to Charlottesville, it hits me. I've known for a while that Zach wouldn't be able to come with me because he is right in the middle of running a really important research project for his phd, but it's not until right now that it REALLY hits me. For the past 6 years Zach has been by my side. He researches new Type 1 technologies, checks blogs for ways he can help me gain better control, and was the one who found this trial for me to participate in. Without him, I wouldn't be doing this, I wouldn't even know it was a possibility to be in a trial like this. He is and always will be my strongest supporter, and knowing that he can't be there with me is harder than I thought it would be. Every few months I have what is pretty much a complete melt down because the burden of managing my diabetes gets to me and brings me down. Zach has always been there to pick me up and help me to know that it's ok and that I wont have to do this forever. He was always certain of that long before I was. Now those melt downs are few and far between, especially since we know the technology is out there to ease that burden. And I get to test it out! I know that he is with me every single step of the way, even if it's from DC and I am so incredibly lucky.

Phase I: Complete!

Today marks the day that the first process for the trial begins. Today I had my continuous glucose monitors (CGM) inserted under my skin. I woke up an hour and a half before my alarm even went off, which is kind of a big deal because to be honest I quite enjoy sleeping in. Yet at 6:30am I was wide awake and ready to get this thing started. I picked up my friend Carey for the 2.5 hour hike out to Charlottesville and it was real. I was really on my way and really going to do this. I've been completely terrified of having the CGMs inserted, since it's basically a fiber under my skin that's attached to a sensor, and can anyone really say they would be thrilled to have something foreign hanging out under their skin if they didn't have to? So for the past few days it's really all I could think about. And I'm pretty sure from the second she got in the car Carey could tell I was freaking out a little, but the kind of freaking out where you try to hide it and be brave because you know that what you're freaking out about is actually something really great. Either way I am clearly terrible at hiding how I'm feeling so to help calm my nerves Carey and I pulled out all the stops on the drive there. Wawa breakfast, Hanson blasting on the radio, you know, the usual stuff that two girls from NJ do on a road trip. It totally worked. I can't say that I wasn't still sort of a mess getting to the office to have the CGMs inserted, but I think I was more excited than I had been at any point so far.

Molly, a nurse and my main contact in the research team met with us and after all my worrying the whole thing took about 5 minutes and the two sensors were attached to my stomach and I didn't feel a thing and FINALLY I could breathe. Well for a couple days at least. In case you don't know, the purpose of these CGMs is to check my sugar every few minutes and send a reading to their respective receivers, which is a really cool thing, except that I don't get to see what the readings are until after the trials! Eh, I'll pick my battles. Thankfully Carey is a great photographer so she was able to get some shots that pretty accurately show how I was feeling.

So now I get to carry around not one but two receivers on my belt, which in my dads words look like "those super nerdy cell phone holders" but I prefer to think of them as the most functional fashion accessory available. I still can't believe how fortunate I am to be a part of this. The artificial pancreas is going to be a part of history and I have the opportunity to make a difference and give hope to anyone who's lives are touched by Type 1 Diabetes. It really doesn't get any better in my book.


I can't say the past few days have been easy, but I can say that the love and support that I've gotten from my friends and family and even total strangers has helped make it a lot easier. My dad drove down to DC from NJ today so he's here helping Zach keep me calm. Tomorrow we will load up the car and dad and I will be headed back to Charlottesville to gear up for the trials, and in the meantime I just need to remember to breathe (which is what Zach and dad are here for).

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!