Youth Leadership Congress April-May '95

Signed T-Shirt

   
     In the spring of 1995, the ADA gathered a bunch of active and outgoing kids from across the country in order to form a nation wide joint mission to petition to state senators, asking them to continue with funding diabetes related organizations and research by asking for their support for two bills that provided medicare funding for self-management training. I, two other PA Teen Weekend friends, and two other guys received the honor of attending the conference to represent PA. Us 3 teen weekend kids received the nomination from the weekends' director.

     A secondary goal of the conference was to invigorate young minds and use their driving desire to make diabetes easier to manage, better funded and intelligently received by the general public. We were supposed to brainstorm creative ways to reach our goals, and bring them back to our specific areas to implement. I was never ambitious enough to carry the momentum from the conference to daily life, and all of our ideas, whatever they were, remained in committee.

     We did succeeded in having a good time, and meeting with people with diabetes from across the country. I do not remember all that much of the conference, but I did take pictures, and there are some points that have stuck out:

• I was late to the first meeting where we role-called our specific states, and I had to sit in the back with the group of delegates from Utah. They were loud, fun, and when it was their turn to announce themselves, they adapted a very drawn out, countrified accented "You-Taw"

• I remember the brainstorming events vaguely in the conference rooms, with dry erase boards, easels, and hours of discussion and role playing how we could push the agenda of diabetes awareness back in our respective towns. We were grouped together by region, so we were the northeastern region.

• I remember we had a  70's dress up dance that I came very prepared for. I was a little cringeworthy-obnoxious.

 

• I remember giving a speech to be the regional youth leader of the Northeastern Region in a suit jacket and flowery skirt...taking a platform that appearances didn't matter: actions did.

• I remember getting dressed up properly to go visit the people who represented each of our state senator's interests. I remember the one woman we met with was very distracting: she was apparently missing a button on her shirt AND she also forgot to wear her top undergarment. 0-for-2: she must have been having a rough morning.
• I kept in contact with one person out of everyone I met who was from Washington state and one of the Northeastern Lead Staffers

• The first night there, they had an ice breaker entertainment performance by some magician / hypnotist who performed on some of the other delegates. I was not involved directly with this one, and was a little embarrassing to watch.
• I spent some of the downtime walking around Georgetown, and going to some of the music stores. 

 

PA Teen Weekends: 1992-1997

All the participant shirts I still have, some with notes

Scores of camper address sheets: keeping in contact before cell phones

     Upon being diagnosed, my parents became active in the consumer fields and research relating to diabetes. My mom would clip articles about new research, studies, and trends that doctors were touting as the future. I like to think that my diagnosis also helped my father learn a little more about it, or at least focus on it more. Although he never tried an insulin pump or a continuous glucose monitor, I assume he wanted to lead by better, healthier example. He actually began to become more open to the alternative therapies during the last couple of months.

First group photo...I'm behind Left-ight's arm.

     But after going to a couple diabetes fairs, hospital funded group discussions/classes, my parents heard about a weekend camp where kids with diabetes got together, supported by knowledgeable or diabetic staff as well as an on site nurse. They decided to enroll me in one of these ADA sponsored Teen Weekend in the eastern PA region. The true beauty of the weekends was that teens could support / help each other while going through the roughest patch of their lives together, on top of dealing with extra work and social stigmas that come with diabetes. 

     The first one I went to was in the winter 1992, and it was hosted at a cabin in the woods near Bucknell University. I was apprehensive about meeting other kids with my disease, if only because I was an awkward 13, it was my unique problem to bear, and this was well out of my comfort zone. When I got there, many of the kids already seemed to know each other, so I had to feel my way around the cliques and hierarchy that comes with any teenage social situation.

     I remember signing in at the check in table, and having my bag of medicinal sugar confiscated. They understandably did not want people "cheating"or dealing out sugary snacks after hours in the confines of the sleeping quarters. But I felt like they did not understand! What if I went low at night? What would I do if I did not have food right near by? I soon found out that this was not really an issue, as there was always a counselor to be woken up to test with and administer a snack.

     The first ice breaker activity I remember in my inaugural weekend was a game of touch football outside in the snowy yard. I've always considered myself of flat line, average athletic ability: ok at everything, but not really that good at anything. But I learned that did not matter. Nobody was a star, so after typical bumpy social adjustments, I was hooked on the idea of camp. The staff were friendly and seemed cool, and the majority of the kids there were helpful and friendly as well. The bond of dealing with the same ailment created a superglue-like connection, and as I went back to weekend after weekend, (4 times a year), we developed the term Post Camp Syndrome for the way we felt at the end of the weekend, leaving each other. 

          I had a wall of letters that I received back from correspondence with many campers. This was the early 90's and internet communication was still a few years away of taking hold. Each camp had a different central activity. We did do White Water Rafting a couple times, but we also went rollerskating, skiing, water parking, in-house karaoking, murder mystery night, camp fires, talent shows, and we even had one December where we just stayed cooped up in a diant rec room all weekend, and counting down to the new year.

snacks & 'slin on a rafting trip

Shasta & the way things were    

      I gained a lot of self confidence, and I looking back, I have these camps to thank/blame for my somewhat obnoxious and out-going persona I carried out though high school. It definitely brought me out of my shell, and allowed me to not only accept diabetes, but make it a strong part of me, a part that did not slow me down, but gave me confidence. There was really nothing I could not do, and my loud clothing and personality were direct reflections of my comfortableness with myself and my diabetes.

     I remember one of the best things about camp were the quiet philosophical and personal issue sharing discussions. We had so much energetic fun, but at the same time, we could come together, hold hands, and bond deeper over personal experiences and what we'd gone through. This delicate balance of fun and introspective growth compounded on each other, and allowed us to open up and become the best friends I could have grown up with through such a difficult time. When I'd go on and on, telling my friends back home about what I did at camp, some asked to if they could come along, or perhaps be snuck into the experience too. It was quite the magical experience that they probably grew sick of hearing about.

     The group discussions tended to end with one final question about having diabetes. For as bad and life threatening as diabetes can be, many of the campers (myself included) began to see it as a benefit (perhaps a bit of stockholm syndrome) for the friends we made, the way we could feel what our body was doing, and the theoretically healthier lifestyle of a lessened sugar diet. We would go around the circle, and answer the question: 'If there was a magic wand to take away your diabetes, would you take it and why." The dreamer in most of us answered "No, It has given me more than I could have imagined and I would keep it," but the more logical thinkers answered they'd happily get rid of it since we would still be friends: diabetes or no diabetes.

     I'm not sure why I never returned to be a counselor once I got to the end of my teen years. I was a perfect passionate candidate, ready to give back to the scene that helped me grow so strong. But for one reason or another, there was a period of time where I lost track of these friends. Perhaps I was changing, perhaps I was too close to the experience to become a counselor to the slightly younger friends who would be campers. But I kind of fell out of contact with that circle of friends (which was replaced by another group of diabetic friends when I went to a California based camp as a counselor...a story for another post)

    I still keep in general contact with a good bunch of these fine folks from 25+ years ago thanks to the wonders of the world wide web and social media. But there are some PA camp friends that are no longer here. Some of their passings were diabetes related, but some had other compounded issues or fluke accidents. Here is the collage dedicated to their memory, also posted here.

My Stuff: Mini-Med, Medtronic

                      Checking out a magic pump in '92                    Test infusion site pre-pump trial                               My First Pump

I've been a lifetime supporter of Mini Med, which was bought by Medtronic, becoming Medtronic Mini Med in 2001. It was the first pump I was thoroughly introduced to in 1997 (a friend did have one in '92, and he seemed to go low an awful lot) and the first (and only thus far) brand I used. After learning more about them as a company, hands on experience with friend's pumps and even trying a loaner pump at camp, I came home wanting one. My family also saw the bright future ahead of the company, and we purchased stock in Minimed, anticipating an explosion of their product into the market.

Tutorial VHS

         I've had updated versions, and new releases as warranties ran out, and new models were releases, all reliant upon whatever my insurance would allow. And it was told to us for many years that the continuous glucose monitor would be coming soon too. Now, I was extremely skeptical about the pump: a mechanical arm delivering insulin to you, and it took lots of time for me to experience it in order to want and trust one for myself. And although a continuous glucose monitor was not life-threatening if it malfunctioned, I knew it would get better as generations came and improvements were made.

     When Medtronic's CGM finally came out with the Mini-Link, I had already tried the Gluco-Watch in 2002 and a trial run of an early version of Dexcom's CGM through my Endocrinologist in 2008. I was not impressed with either of them. The gluco watch was generally inaccurate and irritating to the skin. The Dexcom was tough to calibrate, and it took a lot of work to get it synced up. In my experience, it cut out, and was unreliable with reporting numbers. So with the reliability of the MiniMed brand, I was eager to try their device.

     I contacted the company, saying I was interested in the CGM, and they set up a meeting. I went through the training process, and reviewed the options, and I was definitely interested. The one downside was that they would not allow a trial run of their product. I wanted to try it out to see if it was irritating or reliable, and not just jump into the thousands of dollars investment (granted, mostly paid by insurance). But despite having to dive in, the pros seemed to outweigh the cons. It was a trusted brand, and it would communicate with my pump to create a closed loop, externally functioning pancreas.

Revel & MiniLink starter kit

     I signed up, went through the insurance rigmarole, and eventually received my first shipment of sites and instruments to make it work. Upon putting the first one on- first one in myself, since there was no trial except a practice insertion into fake skin. I found it to be quite painful. The guillotine style inserter was brutal, and not very smooth. As I used it for multiple weeks, there were many times where the site would insert crooked or not at all, which was doubly painful and rendered the site defective. The sites were expensive, so wasting them on improper insertions was very wasteful.

     The transponder that attached to the site was bulky, and often cause me to pull the site out by getting it caught. The stickiness of the site was not strong, and I sweated off the site after playing tennis. I started taking the transponder out, and one day, I ended up losing the transponder that sent the data to the pump.

     I was actually relieved by losing it, as I would not have to go through the teeth clenching process of application and calibration just to receive CGM data. I never called to replace the transponder, and I have a few of the sites left, unused. I was OK with this

     I have no doubt that they will work out these bugs and uncomfortable traits that I ( and others I have spoken with) have experienced, and as their product becomes more accurate, reliable and streamlined, perhaps I will go back to it. Most discerning, however, was the fact that they would not allow a trial period before I purchased it, forcing an all or nothing decision.

Diagnosis Story

      Every diabetic has a personal origin story of what they remember when developing and being diagnosed with diabetes. I have been a camper and councilor at many camps over the past 26 years, and I have heard a vast range of personal stories of struggle and acceptance. Some stories teeter on the fringe of life and death, some have silly notes, and some people were so young, that they cannot remember life without diabetes. I was old enough to know what was going on, and I even remember having a low blood sugar sensation in class weeks before I was diagnosed. That was a lifetime ago.

     My diagnosis story beings on a fateful day in sixth grade English class, when I was called down to the main office. I got the "Ooooo, he's in trouble" looks from my classmates as I left very confused, flipping through my recent memory, trying to recall what I had done. My mother was waiting there to take me to what seemed to be a random doctor appointment, since she hadn't told me about it. Sure I was shocked to be getting out of school early, but I didn't know the impact on the rest of my life.

     The impetus for the appointment occurred a few days earlier, at a friend's birthday party. My best friend had just turned 12, so over that weekend, he had a birthday party. Cake was served, Nintendo was played, and I had my fair share of everything. His mother noticed that I was drinking a lot of water, and using the bathroom more than any kid should. Being a nurse, and knowing my father was also diabetic, she was wise to the symptoms of an undiagnosed case.

     As a precaution, she told my parents. So as we left the school and got into the car, my mom promised me that it would be a quick visit to the doctor. Even though I felt fine, it was just a test to make sure everything was OK she said. Like a check up. Suffice it to say, everything was not OK.

     I was told about the circumstances leading up to the visit, the potential outcomes, and I was given a blood test. Because I was still in a honeymoon phase of partial insulin production (which is why I felt fine), my blood sugar was 328. I had a that wild of a ride eating sugar and snacks today, I would be in a coma. In contrast, I've heard other stories of upper 800's- even 1000's at diagnosis, so looking back, I was lucky that family and friends caught it early.

     I was admitted into the hospital across the street from the pediatric office, and stayed there for five days. Upon admission, my mom called my dad and I vividly remember the conversation with him. When I told him that I had diabetes, I remember he muttered the only curse word I ever heard him say..."shit." He of all people knew what I was going to go though. The only difference was that I had the luxury of knowing about diabetes through seeing his daily routine. All my life I saw him give himself shots at dinner, which appeared easy enough. I was not afraid of needles. He also had moments of crazy actions from low blood sugar, like when we'd play out in the snow. He just had to eat sugar cubes or drink orange juice, and it never seemed that serious. I remembered him using a device that he said would test his blood, and he'd write about it on a little pad. Again, it seemed pretty non-invasive.

1985 Diabetes Instruction Manual

     But now I had it too. While in the hospital, I learned the more about diabetes than anyone should ever have to learn. Although I had held my dad's skin when he gave himself an injection, I now had to practice doing the shots myself. I gave water syringe shots to many a variety of citrus fruits. I had nutrition classes to learn more about carbs and fats. I was introduced to and fine tuned my own insulin regimen. Pumps were still a good five years from being easily accessible, and Humalog / Novolog were still six years away from hitting the market. Regular and NPH were the cocktail ingredients I learned with.

     I also had to keep up with my daily life, as it was important to add diabetes into life, not have it take over. My homework assignments were brought to me by my parents. Some friends sent me their notes to look over what was going on in class. My math class even took a whole period out of their day to hand draw "get well" cards for me. Sure, most of the get well comments missed the point: I was definitely not going to get well- but it was not their fault. I'm sure they had no idea why I was in the hospital. I can only imagine what they were told to do when they made the cards. Being in the children's wing of the hospital, they also had a Nintendo and TV mounted on an AV cart, which was wheeled around to kids old enough to use it. This definitely helped normalize the situation.

     I left right around Superbowl Sunday. And not that I was ever into watching sports all that much, but it the idea was not lost on me that I had just come out the other end of the super bowl of life changes. I had a strong, educated grasp on what I had to do for the rest of my life, and I was not afraid. I jokingly told my mom that I could never trust her again when getting called out of school where what what was promised to be an in and out, non-invasive check up, turned into a week long gauntlet of learning new things that needed to become routine: my life now depended on it.

- more pics to follow.

Family Tree

Why type one diabetes develops is still a relatively unknown. We do know that it is an autoimmune disease where the white blood cells turn their sights on the pancreas's beta cells in the islets of Langerhans. Type 1 onset usually occurs following a cold or illness, while the white blood cells are active against other foreign bodies or viruses.

But the big question is why. Why does the body suddenly turn on itself? Were beta cells an anomaly at one point in our ancestry, where the immune system acted rightfully to kill off the insulin making cells? Why else would the body sense that the beta cells were foreign bodies, the same way people with Celiac disease target gluten?

Or is it just a genetic defect, passed down from generation to generation? Are some people's bodies just genetically disposed to, at some point in their life, setting its own immune system out to destroy the beta cells in the islets.

It takes no more than a glance at my father's family tree to recognize that type 1 diabetes is definitely, for us at least, a genetic trait.

This simplistic format shows my father's brothers and sisters, and their children. The solid blue dots represent those of us who have/had type one diabetes. My aunt to the far left passed away of diabetic complications in the 1930's. My two female cousins developed type one diabetes later in life, relatively speaking to most folk's diagnosis.  

Nothing really more to be said here in conclusion. Just that although for some people it can be an unusual blip in the family history, but for some of us, like me, it is definitely an inherited trait. One that we can only hope will not be passed down to the next generation. Perhaps we can hold out hope for a vaccine or genetic therapy prevent type one from developing in our offspring. I'm sure my cousins and I would be very open to it. 

Out of the House and Out of Insulin?

     I was taught this survival tip that has helped me out more than once. It makes sense, but perhaps someone else hasn't thought about it.

The situation: your pump just clicked the final unit of insulin into you, and you don't have more nearby to refill.

     Well, don't worry: you are not all out of insulin! There is still a good 5 units or so left in the pump tubing (depending on tubing length). All you have to do is disconnect the tubing from the reservoir, and fill the reservoir with air. Either hold it or the pump (if you've put it back into the pump) vertical so the air sits at the top, and push the air down into the tubing, forcing the air to displace the leftover tube insulin into you.

     Hopefully it will be enough to hold you over until you can actually get some more insulin. But this should soften the blow of an extended length of time away from your supplies.

Old Basil Fasts

I wanted to put together screenshots of all of the basil test fasts I have done (and have on record) over the years

5-20-03 - Finger Stick Blood Test

9-20-04 Glucowatch

2-26-10  Finger Stick Blood Test

2-25-14 Finger Stick Blood Test

7-24-14 Finger Stick Blood Test

12-18-14 Finger Stick Blood Test

4-16-15 Finger Stick Blood Test

43 Hour Fast

     One of the virtuous things about using a Continuous Glucose Monitor, is the ability to study one's own body and how it naturally and uniquely works with food and insulin. To determine the accuracy of my basil rates in the past, I have used the Medtronic CGM, the test-every-hour method, and even the Gluco-Watch back in 03-04. But I prefer Dexcom's G4 CGM, as it has come a long way in accuracy and ease/comfort of use- even more than previous models. 

     A CGM can offer scientific evidence necessary to answer the following universal questions:

How much does my blood sugar drop per unit of insulin? 

How much do carbs raise my blood sugar?

     Between those questions lie the golden calculations: 

How much insulin do I need to drop my high blood sugar?

How much insulin do I need to eat this?

     At the time of writing this, I am currently in the middle of a 43 hour fast, trying to get a beat on my basil rate. I am also figuring out my insulin to carb ratios. I stopped eating at 1030 pm on Monday 2/22, and plan to fast through Wednesday 2/24 afternoon.

     Around 1 am on Tuesday morning, I happened to wake up and saw that my CGM reading was 140. I decided to take a unit of insulin to see what would happen. I woke with a 100 sugar, so I assume that a unit drops my sugar 40 points. This is not a completely pure test, since I had eaten 2.5 hours earlier.

     I woke up Wednesday morning at 715 am with a low notification on my pump at 69. The CGM required a recalibration, so a finger stick showed 56 - not a huge deviance. Obviously, my basil rate is too high at some point overnight, and I will look into that deeper. But with a medically necessary opportunity to consume a fixed amount of carbs, I decided to use this to check my carb to blood sugar ratio.

745a: drank 24g carbohydrates worth of pineapple juice

     After consuming a small can of pineapple juice (24g on the label), my sugar jumped up to 210, an increase of 154 points in about an hour. Simple math proves that my blood sugar has a:

6.4 point rise per 1 gram.

   At 1050a, my sugar was 190. This has given me an opportunity to test if a unit of insulin really brings me down 40 points. Novolog publishes the precaution that it begins working in 5-10 minutes and lasts 1-2 hours. So with "40 points per" unit in mind, I decided to take 2 units of insulin. And at 1250a, I reviewed my CGM to see the result.

2 hrs after a 2 unit bolus: 190 dropped to 125

     So at 2 hours, my blood sugar decreased by about 65 points. By 136 pm, it was down another 13 points to 112. That could mean that my basil rate is a little high, lowering my sugar more than the correction bolus alone, or it could be that insulin works longer than 2 hrs in my system. Either way, I have surmised that novolog creates a:

32-40 blood sugar point drop per 1 unit

     If about 5 grams of carbs raises my blood sugar the same amount that 1 unit of insulin decreases it, then in fruit juice form, I would need

 .2 units of insulin per 1 gram of carbohydrate 

     I don't fully believe this conclusion. I would never expect to give myself 3 units for 15 grams of carbohydrates. Typically, it is a one unit per 15 grams ratio. I feel like I'm invalidating my own controlled experiment with what I am accustomed to and what I expected.

     But not to worry. I am going to test this now. I have a Del Monte fruit cup totaling 12g of carbs, which, using my calculations, would require 2.4 units. It is 2 pm (finger stick = 103, CGM = 108) so I'll post the screen shot of what happens after this carb-insulin combo around 4 pm.

     So the moment of truth arrived. I am surprised I'm not hungry after going 43 hours with only eating a small can of fruit and having a small can of pineapple juice. But here we are, 4 pm, and the result look...accurate. The 2.4 units of insulin seem to have balanced out the intake of 12 g of fruit cup. Science and math have won over assumed perception.