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!