Getting High.....not what you think

Since I recently posted about my Personal Best for Lowest Low, I figured I would address the higher side. Now, there's some misconception that High BG levels aren't as bad as Low BG levels. While that is true in the immediate sense - extreme lows can cause death faster that highs - High BGs are never something to brag about. High BG levels can cause muscle cramps, your organs to fail, and have long-term consequences on your health (see literally pamphlet about High BG levels). I have heard T1Ds brag about their High BGs at Diabetes Camp but looking back, it was an incredibly stupid thing to brag about. 

My highest high that I've had (outside of hospitalization/diagnosis) was 620 mg/dL. I was super high because my pump that the time had stopped pumping and it made me feel crummy all day. This Personal Best was back in high school when hormones and emotions are already running wild so I didn't immediately know what was going on. I did have a back up means at the time too which doesn't make me any smarter.  I noticed the high when I felt like my muscles were getting exceedingly tight throughout the day, I started peeing WAY too often to be considered normal, any my vision went super blurry. I knew something was up and I was still apprehensive to test my BG.

Slightly-Deep Thought - There was a point for me, in my head, where I could tell my BG levels were getting out of hand and I simply did not want to address it. I don't think there is a proper means of describing that feeling (but I will attempt). I wasn't giving up, I didn't hate my Diabetes, I wasn't trying to be 'too cool' to check - I believe I was feeling indifferent about feeling my symptoms. Now, this may be a feeling all-too-common for T1Ds in High School where you're developing into a 'real adult' and the responsibilities overwhelm you. It's certainly not that we enjoy feeling terrible, it might be that we are disconnected from any action. I knew that I could fix things and feel better but this was an occasion (happens rarely) where I didn't care. It's terrifying from an outsiders' perspective and even my perspective now 13 years later but it made perfect sense when I was 15. 

So I felt terrible - went home after school and tested. I was super high and my meter at the time didn't just give the notification of HIGH (that's how I read the 620 mg/dL). I didn't have ketones but still felt like my body was consuming itself. Gave my self a solid dose of Humalog and a couple hours later I saw my blood glucose drop to 300 mg/dL (It always takes longer than you think). Never in my life had I been so happy to see 300 mg/dL. A few more hours later we were back in the range.

Highs happen - seemingly more often than lows for some people. Insulin fixes it (duh) and sometimes we'll be too angsty to do anything about it. 

My Lowest Low (or so I'm Told)

Whenever I meet someone, whether it be in the T1D community or a muggle, there is always this moment where we discuss our Personal Bests. Personal Bests meaning our Lowest Low and our Highest High. These are the blood sugar values that have exceeded our wildest expectations and surprised us by bringing us to our knees. This is by no means a recommendations to see if you can Out-Diabetes one another but a story of a significant low in my life. Through the course of our lives they inevitably happen (thanks to current CGM technology, not as much). 

What brought this idea to mind was a recent low I had while visiting the local Costco. My CGM started going off as I approached the meat section and a quick glance showed 65 mg/dL with TWO ARROWS DOWN. The initial moment of panic is set off by the background math of "how did I end up here?" -  Mine was a slight delay in insulin coverage for the breakfast I had hours earlier. Anyways, I then jumped into Rescue Mode and ripped into a package of CapriSuns 100% Juice and boom I was back.

The Lowest Low - I was in the midst of my Middle School Band career and we were rewarded with a trip to Disneyland (end of the year trip). Everything was running smooth throughout the day, we had a great time at the park, we were able to go 'Backstage' and perform Disney soundtrack themes to the animated movies and it was awesome. I was under a somewhat strict diet under the advice of a quack Endocrinologist so I wasn't able to indulge in the Cotton Candy and sweet treats like my friends. I remember we had dinner at the Blue Bayou (highly recommended) with my friend-crew (mom as chaperone) and then spent the night chasing each other around the park with ultra-realistic cap guns that are no longer sold at Disneyland - for obvious reasons. I remember testing a few times throughout the day and never really feeling too terrible. I still had good resilience from lows and highs at this point but I feel like I was in decent control for the day. We got back to the buses around midnight, the freeway on the way home was blocked by an accident which added about 2 hours to the trip. We made it back around 3am......and that's where my record stopped recording. Apparently within the first hour of being home my little brother woke up (thanks Drew!) to me breathing weird - woke my parents up - my dad tested my blood sugar -  18 mg/dL - mom injected glucagon and force-fed me sugar gel - I wasn't responsive and just shaking - after about an hour on high alert my BG levels stabilized. I had just had my first and only Low Blood Sugar Reaction.  

I woke up after 9 am feeling like a truck hit me. My brain was throbbing, my muscles sore from the contractions and shaking, my mom was asleep on the couch and dad checking on me intermittently. I had absolutely no idea what happened but thanks to my brother, I got every gory detail (thanks Drew!). It took a little over a day to get back on my feet. Thankfully we didn't need the help from an EMT - the family history of Diabetes had prepared my mom for the eventuality of a low like this - and we were prepared. After some T1D investigating, we attributed the low to the limited carbs and protein I ate that day, which wasn't enough to sustain the Disneyland energy. You can easily walk over 8 miles at Disneyland over a full day and with my limited snacking and eating, I was on the road to a significant low. I was completely unaware of my trend throughout the day. I tested once every 2-3 hours which is not a means of knowing how the body is reacting to all of the fun. A CGM would have been a great tool in my scenario but the technology was not there yet...

Lows happen and they're no joke. I've been fortunate to have only had one reaction since my diagnosis but I know plenty of people who have had a regular occurrence of these reactions and it sucks. Luckily, technology is improving at an unbelievable pace and CGM technology is getting more and more accurate. I'm now trying to think of a way to wrap this up.......maybe.....the moral of the story is to prevent lows- ensure that you have plenty of cotton candy at Disneyland when you visit.

Better Preparing - Snack Bag Math

The one constant facet of being a T1D is having to go through a mental checklist anytime we go anywhere. I noted previously that my go-to accessory is my snack bag. This was an invention from my parents and T1D uncle to always have one piece of fruit/fruit snack, whole grain cookies (i.e. breakfast biscuits), and a juice with us at all times. This is enough for one troublesome low or a meal replacement in case there isn't time to eat. If I were to estimate, I would say it would be roughly 50 g carbs in food and 10-15g carbs for juice. This is what I used for my correction scale, but other Snack Bag users will lower the amount of food to cover their corrections or eliminate the juice altogether. Do whatever works for you.

Snack Bag= 50g (fruit + cookies) + 15 g Juice

Now, the evolution of the snack bag started back before CGMs were even a real concept and I carried my snack bag in my backpack from grades 3 through 12. I was so engrained in the 'Snack Bag Lifestyle' that I would carry a snack bag with me at all times during college.

Snack Bag = (Enough Food for 1 Low BG event for the T1D) x 2

The Snack Bag also became super popular amongst my friends at the time - for they understood that at any given time they could have a snack too! This popularity caused my parents to start to double the amount of snack bags given per day to ensure that not only were my BG levels covered - but also my friends' hunger pains. This is why we will want to double the number of snack bags available. 

The Snack Bag usually has two common homes: the truck of the car or the backpack. The advantages of the trunk are as follows - easy grabbing access for general snacking, (if driving) forces the T1D driver to pull over and stop to get snacks, keeps the snacks cool assuming they are shaded, leaves you with a treasure if you forget to take it out after a month. The backpack is an obvious housing for the Snack Bag but it is also in close proximity to the friends that will not think twice before stealing a bit of food. You'll want to be extra cautious. 

Now that CGMs are cool and commonplace, the Snack Bag has gone by the wayside. Visible control is at the hands of parents and T1Ds. Snacking isn't quite as serious as it previously would be but for younger T1kiDdos and parents there's some security knowing that a snack is just finger tips away.  For me, it's a call back to the times when I told my parents the world-ending phrase -  "I'm Feeling Shaky". 

March For Science 4.21.17

Welp - I did it. 

I didn't think I was going to get into any of these planned marches in 2017 but I felt the March for Science was the one I could commit my whole attention. I grew with a very strong science background - science camps in the summer sort of childhood.

And obviously there was a political component to the march and I have plenty to say about my stance on the current administration but I don't want to detract from how positive and successful the march became. 

Though not currently involved in the Biomedical Industry, I felt that as a T1D I should show up to support the scientists and industries that have strived to keep control a possibility. I woke up early on a Saturday (ugh) and met with another scientific-minded friend to head down to San Diego's Civic Plaza. We showed up with about 20 minutes window before the crowd started to march. 

When we arrived we thought there was roughly 2,000 people around not realizing how far the crowd stretched. We met up with some family on a balcony and saw the full extent to this 'Rational' March. There were 15,000 of San Diego's finest nerds ready to march for their cause. I saw about 20 relevant signs to the T1D cause, plenty of pumps and plenty of Dexcom patches. I, myself, didn't go looking to promote T1D achievements (like I should have) but rather in my support for arts and sciences as a whole. The NerdHerd marched for 1 full mile through the warm, morning streets of San Diego chanting, beating drums and tambourines, and laughing at one another's creative attempts at signs. The March lasted about 2 hours and we ended up at San Diego's Waterfront Park to celebrate the achievement of getting 15,000 people to walk, laugh, and sing together. I would consider it an overall success and it was a miraculous turnout.

I have high hopes for our local scientific community.

 

High School - Marching Band....and Girls

I categorize High School as having full Acknowledgement and Reaction of my Diabetes. I never viewed Diabetes as holding me back but with high school, there is an undercurrent of self-consciousness and the last thing I wanted to be known for was DIABETES. 

After Middle School, I was now able to tell if my blood sugar was going high, dropping low and I was ready and willing to correct when feeling any symptoms. I made eating snacks covertly a science in all of my classes and if I didn't run low I typically gave my snacks away to friends over the course of the day. 

I always had a Snack Bag. My friends to this day, still ask if I carry around my Snack Bag. Not only for my well-being but in case they get a sudden urge for Teddy Grahams or Juicy Juice. My snacks were not super well regulated - I don't recall any specifics like grams of carbohydrates. It was essentially enough to get me out of 4 Low BG events if I ever had any. My pump and injections were always in a pocket or within arms reach. 

I was in Marching Band (cool I know) and played the Tenor Saxophone. On more than one occasion I had snacks stuffed into the bell of my sax while we were practicing marching. I felt like Low BG levels hurt me more than High BG levels so that was my focus. I fear, looking back, that I may have run in the High 400s for hours on end because I didn't feel that bad. All of my teachers knew and understood that I was Mr. T1D and gave me a ridiculous amount of freedom to treat/eat/leave when I wanted. Needless to say, the school nurse and I were super close and she always kept a close eye on me. During any performances, I was able to stuff a juice box and glucose tabs into my uniform- I was readily prepped for any lows. My injections would always be with a parent or in my instrument case. Outside of marching band, I also played the Bassoon (think huge bong that makes a duck noise). I was able to keep snacks with me on my stand though in the 6+ years of performing music, I never had to resort to eating any snacks. My control was relatively decent considering individual CGM systems were still floating in the imagination of some engineer's heads. My whole focus was that I knew what lows felt like, I knew what highs felt like and I knew how to treat. I was a self-contained Diabetes machine and I feel like my ability to be confident with my condition kept my parents from being overbearing. To this day my mom still asks, "Are you low? Are you feeling OK?", so that's never ending :)

Diabetes played 'zero' role in any of my attempts to talk or meet with girls. It wasn't an issue that I ever felt needed to be addressed or discussed and I probably was trying to be "cool". I also didn't think bringing up a Chronic Autoimmune Disease would contribute anything to the romance. Any girl I was interested in may have known I was a Diabetic but it wasn't until things got serious (Asking "Will you go out with me?") that I would bring Diabetes up and maybe see if they could carry my shots. 

I'm asked, quite often by parents of T1Ds, if their kids will be able to successfully have a relationship. I think early relationships will blossom regardless of a kid's health. If their child has the confidence in not only themselves but their control with diabetes, it is not likely to come up. They will continue to grow up normally both emotionally and physically with Diabetes playing a smaller role. 

In my specific case, I was always interested in this girl in my English class so I sat behind her and tried talking to her for the whole semester (Diabetes was never brought up). We ended up having several classes together and I built up the confidence to ask her to be my girlfriend that summer (Diabetes was never brought up). It wasn't until after our first date that I explained Diabetes to her and asked her to hold my Insulin Pen case. It took a quite bit to share my Diabetes with a person I was interested in but I can tell you there is nothing more attractive than having a girl carry your insulin!

Diagnosis...or when I Received My Powers

I was diagnosed in the middle of the year in 2nd Grade. Prior to getting diagnosed my only concern was reading faster than Nick (my buddy with undiagnosed ADHD) and collecting all of the Goosebumps books I could get my hands on. Also POGs were a big deal and my hometown still gave them out on the old-fashioned milk cartons. I remember it was particularly cold that whole year and I was still working on climbing a rope in gym.

 Back to Diabetes - I started to feel super weird around lunch time. Like, not sick or anything but my vision would get all blurry and I assumed I was thirsty so I would just stand at the water fountain thinking it would fix things. Lunch was the only thing that would fix things but that was usually some time later. It was 2nd grade and I probably wasn't the best at describing my situation so I likely told no one. 

The night prior to diagnosis, my mom and dad took my littler brother and me out for some McDonalds (it was still good for you back then) and I was absolutely starving. I recall I was so hungry that I had them order a Big Mac and Super Sized Pop (Colorado speak for "Coke or Soda") and Fries. I was an ogre and demolished all the food and was STILL HUNGRY (WTF!?). I was also losing quite a bit of weight and peeing almost every hour on the hour. After my supper, I couldn't sleep because I had to pee so much. I think my mom noticed and scheduled a blood test for the next day (My family has a long line of Diabetes, Thyroid issues, and ingrown toenails...cool right?!) so she knew what was up.

The next day, I was out of school, getting blood tested so it should've been a fun day. WRONG. The doctor called my mom about an hour later telling her I needed to be admitted to the hospital.

[phone rings....queue tears from mom]

I wasn't sad or anything.....thinking back I felt pretty brave about the whole situation. I wasn't too nervous, I was just now like my Uncle.

That afternoon we went to the hospital and that went pretty well other than the GIGANTIC NEEDLE THEY SHOVED INTO MY HAND to keep my hydrated. I don't think I was 800 mg/dL+ but I know I had a pretty High BG level. It took a couple days for things to get regulated. My Pediatric Doctor came in periodically to say hey and give some updates on my new diagnosis. They brought in some Oranges (high tech at the time) for syringe delivery practice. I learned how to test my blood. It seemed pretty intuitive - my uncle had been a T1D for many years at that point - so I was used to seeing the process. I was able to leave a couple days later with some Regular and Humalin insulin, a BG meter (that required a cup of blood to test your sugar), and some syringes,

Pretty Exciting Stuff -

The things missing:

- I never wet the bed or pee'd my pants prior to diagnosis which seems to be a pretty consistent thing amongst my T1D buddies. 

- I never passed out

- It actually kind of sucked because I had to have a nurse give me a bath

T1D Goes to School

Going to school with T1D in a breakdown of a few stages (My path is as follows):

Elementary School - Parental Supervision and Planning

Middle School/ Junior High - Preparation and Understanding

High School - Acknowledgement and Reaction

College - Control....and Alcohol

I wrote previously (and quite out of turn) regarding my Middle School process because I feel that that Middle School was the tidal shift from my parents controlling my BG levels to my control. 

I will now attempt the impossible and go backwards in time to Elementary School and bounce forward to high school to keep all the readers on their toes. Apologies in advance - think of this as a Choose Your Own Adventure reading - 

 (To Escape Alligators Turn to Page 34)

 

Elementary School.....My Dear Watson

Elementary School was a very formative time. My parents were adapting to having a child with T1D and I was wrapping my head around my new "condition". I simply saw it as an excuse to bring snacks to school to eat "whenever I felt weird". Shakiness was not a term used quite yet but, Hey! I have snacks. 

Because the doctors were still sorting out my carbohydrate ratio and we were still in the NO-SUGAR Era of Diabetes, my diet was pretty restrictive. I was picked up everyday at lunch to go home to eat a regulated lunch and watch Wishbone and the dumb kids on Where In the World is Carmen San Diego? (Those kids were so dumb they don't know where the Eiffel Tower is!). 

This is what I describe as the "Parental Supervision and Planning" stage. My parents spent so many hours supervising my every hunger pain, headache, stomachache, and food intake. It was all so foreign for a fist-hand point of view. My mom helped raise her brother, but this was a whole new job to keep an eye on their newly diagnosed son. It tough to try and form labels to how a little developing boy is feeling and at a certain point it gets confusing and frustrating. My parents always had a plan - both High BG levels and Low BG levels. My little brother also adapted and labeled himself as a strict observer to my every behavior. If I started saying anything weird or confusion (to him) I had to test my BG. Snacks and juice were plentiful, injections happened randomly, and I didn't feel too connected to my Diabetes. My parents had taken such a strong stance as my Diabetes managers that I felt disconnected. It wasn't disconnected in any negative sense - It was disconnected like I didn't really need to pay any attention. 

I believe it's due to a mixture of my inability to fully understand my condition and my parents drive to ensure that I wouldn't have to deal with any complications. At that point without my full acknowledgement my management was reaction-focused. My parents had a plan for either side of the BG spectrum and I was just along for the ride. 

By the time 4th and 5th grade came around, I felt like I was able to describe my symptoms and I had a sliver of control to react to any symptoms at school. I found the best understanding of Diabetes to be when I had to start explaining to classmates why I was able to bring snacks and why I had to go to the office for injections. After the 100th time explaining it, I had a fair-to-good grasp of what I was talking about. Then, Insulin was not advanced to the point where we would have a BG drop within the first 30 minutes of delivery, so up until 1999 we were riding the wave of highs and lows with very little control. 

Middle School - and the Hormones Arrive

Or the more appropriate title - 'Hormones, Hormones, Hormones..." Now, I did not have the advantage of having a CGM with Middle School so some of my experiences may be slightly dated. If I don't reiterate it enough - CGMs are your friend (why spend the majority of time worrying about something you have little control over). 

Middle School is always an interesting time for a T1D. Sometimes there is an obvious pattern for low BGs and high BGs and sometimes there isn't. A lot of the confusion is due to the vast amounts of hormones that are causing our growing bodies to burst into High BG levels without any warning rather that is when we wake up, after lunch, when the cute boy/girl looks at you, or if you are going out to recess. When you get home, depending on the homework schedule - you are suddenly dealing with all sorts of stress - parents bugging you to do your work, getting ready for dinner, getting ready for tomorrow, testing your blood sugars, making sure that your supplies are ready to use the next day. I feel that the Middle School - Junior High years were the time where I found my independence. My parents gave me a little bit of freedom, knowing that I had the support of friends and teachers to make my own decisions. If I was to have a bite of a donut while hanging out my friends - knowing that it would inevitably lead to a High BG and then it was on 'me' to fix it. 

I find that sometimes parents feel as though their young T1D is not controlling their BG levels because they are simply lazy -but that is not the case. Those pre-teen/early teen years are a time period of discovering just how bad severe lows and severe highs can feel. A part of becoming independent with your Diabetes is knowing how it feels. If I were to take a bite of a donut and not correct with a bolus - I would spend the next few class periods either peeing a lot (which is not how you impress the opposite sex) or having a raging headache. There is no parent available to get you in gear so inevitably - you correct. No one likes to feel terrible and there are situations that will be presented that you that you will have to take into account. If you're low, have a plan: grab a soda, get a snack at the nurse's office, grab a glucose tab, tell your friends. If you have a high, have a plan: know where your shots are, enter the BG in your pump (if being used), go to the nurse's for assistance. 

I have to admit -the nurses in my Middle School and I were pretty close. They always looked out for the T1Ds at the school. I know this isn't always the case but support is available via friends, teachers, or nursing staff. 

What am I using Now?!

My means of control have varied depending on the year:

1996-1998: Regular/NPH Injections

1998-2002: Humalog/NPH Injections

2002-2005: Medtronic 508 - Humalog

2005-2016: Novolog Pens/Lantus

2016-Present: T:Slim/ Lantus supplement/ Afrezza

Inspired by a gathering of like-minded T1Ds on Catalina Island this past fall I hopped back onto a pump.

During my time working for Tandem, the T:Slim is an obvious accessory and you'll be hard pressed to find a T1D at work not wearing one. I thought I was going to be a hold-out in this case but the weekend inspired me to give it a shot. (I have been off of the pump since high school and had no expectation that I would ever get back on). I started wearing the pump Mid-October and used it "untethered". This means that I am supplementing the basal delivery with Lantus so that I can wear the pump as a correction device only. It will allow me to calcualte, to the hundredth of a unit, my BG corrections and carb corrections. I had low expectations due to my previous history of bearing a small square device in my pocket but then it started working out for me. BGs in the AM near 90 mg/dL and BGs throughout the day were stable. I began assessing the process from that weekend through the upcoming months and my Dexcom Clarity actually showed an A1C estimation of 5.9! There certainly is more to say but I've been away for far too long and I wanted to give an input on my current status. I have to applaud the untethered pumping!