Off to California!

       I'm almost packed and ready to fly away tomorrow morning for two weeks of fun in the sun.
Take a look at the video below to get an idea of what I'll be doing from June 20th-27th:

      
       The main purpose of this trip is to attend "Insulindependence University," a leadership training program for this year's group of Insulindependence captains in the Triabetes, Glucomotive, and Testing Limits clubs. All the captains will meet for four days of training sessions in San Diego before splitting up for "practicum experiences"; I will be hiking in Yosemite National Park with the Testing Limits group from June 24-27.
       Then, I'm meeting my mom in San Diego and the two of us are embarking on a lil' road trip.... our goal is to drive all the way up to Big Sur, CA and back, but we'll see what happens. 
Looking forward to posting pics and stories when I get back!

Mooseman

I don't really have the time or the energy to write up a race report right now, but it's been over a week since the Mooseman International Triathlon  and if I don't post something tonight, I'm afraid I'll never get around to it! 

The past week and a half has been pretty busy. After taking my last final exam and moving out of my dorm in Hanover, NH on Friday, June 3rd, then doing the triathlon in Bristol, NH on Saturday, June 4th, and then spending two days driving from NH to MD, I was exhausted when I got home on the evening of June 6th. Still haven't quite finished unpacking.

Anyway, the triathlon was SO MUCH FUN. I went into it being just barely prepared - I had trained to complete the distance, not race it - so my main goals were to enjoy myself, stay relaxed, and manage my blood sugars. Check, check, and check!

Here's a quick recap and some photos....

Me and my friend Laurie in the transition area about 20 minutes before the start. Laurie's a fellow student who I cajoled into racing with me!

Before the swim in Newfound Lake.

The swim was long, but exciting - I had never swum in a wetsuit before race day (dumb move, I know), Newfound Lake was pristine and not nearly as cold as I thought it would be, and I was able to draft off of other swimmers successfully. After exiting the lake, my wetsuit came off in a flash (with help from volunteer "wetsuit strippers," the idea of which kind of freaked Laurie out), and I felt very cool and collected as I moved through the first transition. I held a JJ Twister Sports Bar in my mouth as I mounted the bike, and munched and pedaled my way through the first couple miles of the bike course; those first few miles were the only flat ones. I had been told about something called "Devil Hill" at mile 5, and had expected to have to walk myself and my bike up it, but was pleasantly surprised when this hill turned out to be no worse than one I regularly train on in Hanover, so I stayed in the saddle and got to feel tough as most of the athletes around me had dismounted their bikes. There ended up being lots of hills on this course, making it challenging but also fun, because most of the tough climbs were followed by speedy breezy downhill descents.

Cycling is my weakest discipline, so by the time I started the run I was really in the back of the pack. This turned out to be a huge confidence booster, though, because not a single person passed me on the run, and I was able to chase down quite a few athletes who had been way ahead of me on the bike.

I finished the race feeling pretty good. Was I totally spent? No. That's fine by me, though. I really took my time soaking up the whole experience and enjoying the beautiful scenery on the course, especially during the cycling portion. That leg of the race was definitely where I could have pushed harder - I'll do that next time.

Summer's here

Today started out horribly, but ended gloriously. 
The good: an early evening trail run followed by barefoot strides on the school football field. The hours between 4 and 7pm have always been "prime time" for me in terms of feeling really good and moving swiftly on runs. This workout was no exception. After stretching and putting my socks and shoes on, I had the genius idea of making a quick detour to the river to cool off. It was hot, and I had gone swimming in the river for the first time on Monday, and the thought of diving in and then laying out on the docks post-run was just too sweet to resist! 

The Ledyard Canoe Club docks on the Connecticut River

Now I'm getting excited for my open water swim in the Mooseman triathlon this Saturday. 

Today was the official last day of classes for spring term here at school, and it was the first day that the local farmer's market was open for business on the Green - pretty clear signals that summer is here!

Farmers market on the green - open every week from June to September

Finishing up my classes and enjoying the warm weather definitely made up for the rocky start I had this morning, which was marked by a blood sugar of 32 at 3am, followed by mass consumption of smoochies, followed by going back to sleep without brushing my teeth, followed by sleeping through my alarm and barely, just barely, turning in my final project for my 9am class on time. There were a bunch of other loose ends I needed to tie up before this afternoon, but now they're all (almost) behind me. The only thing standing between me and a resounding cry of "school's out!" is an exam for my political game theory class on Friday morning. Oh yeah, and a triathlon on Saturday morning. Then I'll really be done with this term, and be on my way home :)

Throwback to diabetes camp

I had the BEST idea last night. Ever. Didn't want to go to bed hungry but couldn't find anything in the dining hall that was just right to satisfy my snack attack. Cookies and milk might have done the trick, but then I thought of something even better: smoochies! What are smoochies, you ask? Sounds like I'm talking about kisses - nope, I'm talking about the best bedtime snack they ever served at diabetes camp.
I went to Camp Glyndon at Lions Camp Merrick in Nanjemoy, MD for maybe four summers in a row. Always lost five or ten pounds during the week-long session because the counselors were so careful about measuring every little piece of food we ate, and we ate six carb-counted meals a day: breakfast, morning snack, lunch, afternoon snack, dinner, and bedtime snack. We were also super active, playing water polo and capture the flag, canoeing, zip-lining and ropes-course-ing, etc., so we all had to lower our basal rates. And we never overtreated our low blood sugars, because low bgs were treated with four glucose tabs, or 1/2 cup of orange juice, and only if our blood sugars were under 100 fifteen minutes later could we have extra juice or eat a few graham crackers. Counselors checked our blood sugars every night at midnight, when we were (supposed to be) asleep, and middle-of-the-night lows were treated with CIBs - Carnation Instant Breakfasts. Your counselor would open a carton of milk, pour in the CIB powder, shake it up, and hand it up to you (I was always on the top bunk). Only if you were really low would you have graham crackers with your CIB! And that was it. We lived off of graham crackers, glucose tabs, orange juice, and CIBs when we weren't in the cafeteria.
Anyhow, I freakin' LOVED diabetes camp! Back to the smoochies...
Snacktimes at camp were never very exciting, except for the very last night, which was campfire/sing-along night. I remember my first year at camp I was shocked that they didn't give us s'mores at this campfire - because what is a campfire without s'mores? - but was placated by the campfire night bedtime snack: smoochies.
Smoochies are made when you put sugar-free chocolate pudding and peanut butter in between two graham crackers, and you freeze it. Doesn't sound awesome, just tastes awesome. The graham crackers become super soft and when they come out of the freezer these treats are so smooth and sweet and satisfying! So, last night, I walked into our student center's general store and purchased graham crackers and chocolate pudding (if only they'd had sugar-free pudding... oh well). A big jar of peanut butter was sitting on my desk in my dorm. And I made smoochies. And all was well.

Sorry I just get really excited by food :)

Rollercoaster Weekend

Whew! Where to start? Highs and lows all over the place - this applies to my blood sugars, emotions, and the actual physical inclines I've been traversing all weekend. 

Saturday morning - The bad: overslept and missed a 10k road race I had been looking forward to running. The good: my roommate dragged me to a local farmer's market where we bought GREEN DUCK EGGS from the cutest kid EVER. Also, said cute kid sold us delicious banana bread that had a rich yummy mocha cream frosting. Of course, my blood sugar shot up, then crashed from the banana bread. Not too upsetting, since I had expected as much and hey, I really should know better than to eat dessert for breakfast. 

Saturday afternoon - I'm getting ready to go out for a run when the skies open up and it starts pouring rain. Mildly upsetting. Luckily the weather cleared up in a short time and I was still able to hit the road trails! I ran on a loop dubbed the "rollercoaster" by the college xc team for its ups and downs. Those runners would have laughed their socks off at me had they witnessed my utter lack of confidence as I would go down one fork, then would turn around and go back and take the other fork, always unsure of myself even though I had run on this trail before.Had a low blood sugar early on during the run, but rather than bailing (like I usually do), I consumed my Clif shot gel and kept going.

Upon finishing the run - I was super muddy and happy and bg was 148. I drank some iced tea that may or may not have been sugary, took a unit of insulin and hopped in the shower. All good.

Out of the shower - Dexcom picks up a reading of 226. Not so good, but not bad, either.Went to dinner - didn't want to aggravate bg so limited the carbs - had salad and water. Took 4 units of insulin - this was an "overbolus." Should be good.
Two hours later, there is a freaking 393 on my freaking Dexcom! Bad!

My mood is often linked to my blood sugar - inversely. The higher I am, the lower my mood, and vice versa... unless the bg is super super low.

The bg ended up dropping steadily and stabilized before bedtime, and I had a fun Saturday night in spite of it all, but Sunday morning I was down in the dumps again after receiving some bad news. Our family's beloved cat, Toodles, passed away in the early hours of Sunday, May 22. I gave him the name "Toodles" when I was eight years old, when he came up to me on the sidewalk outside our house as a stray. He was the neighborhood cat before then, going from house to house for food and affection, but shortly after I started calling him Toodles (and "Toodle-doodle," "Toodle-dude," or "Toodley") he decided he liked the Narula house best. We always said "he adopted us," not the other way around. 

miss you already, Toodle-dude

Toodles under the xmas tree, December 2010

       He had a good long life - came to us at the age of six, according to the vet's best guesses, and he brightened our lives for over 11 years. I'm just sorry I wasn't at home to say goodbye :(
I could write a thousand more words about this character - he truly was a character! kind of like a real life, super sweet Garfield - but will refrain. 
       
Late Sunday afternoon was a long and hilly bike ride (38 miles, 10 more than I'll need to ride in my upcoming triathlon), but that exercise didn't stop my blood sugar from flying up again that night. Any elation I felt from finishing my first bike ride longer than 25 miles was countered by the disappointment of hyperglycemia. It was so frustrating to see the Dexcom graph creep up and up all the way to the 300's, and I knew I had insulin on board from dinner (for which I had overbolused anyway), and I knew the sugar would come down eventually. But damn, I hate being high! I could practically feel the glycation taking place in my cells, speeding up the aging process and causing destruction of my nerves, eyes, and kidneys...aaaaaahhh I hate this disease!

Epic fail?

From the Seeking Alpha website:

"The search for a non-insulin approach to treating type 1 diabetes goes on. Diamyd Medical’s (DMYDF.PK) eponymous vaccine for the autoimmune form of the metabolic illness has failed in a European phase III trial, wiping out four-fifths of the Swedish group’s market capitalization, more than $450m, in one morning.
While the company is still awaiting results of a US trial due in 2012 this setback, following recent disappointments with antibody approaches, dashes most late-stage hopes for novel ways to treat early onset diabetes (Otelixizumab another disappointment in type 1 diabetes, March 14, 2011). For Diamyd, it casts doubt on receiving any milestones or royalties from partner Johnson & Johnson (JNJ), leaving the Swedish group shouldering half of all development costs."

Monday's news that the Diamyd vaccine had failed in its European Phase III trial was disheartening, to say the least. My mother, who is employed by Diamyd and is working on the company's trials in the U.S., was understandably more upset than I was, because she believed so strongly in this treatment and had been so excited to hear the results of the study. When it came out that the results were not good - well, it was a big letdown for her and her colleagues, and I was sorry to see such all-around disappointment. 

The news has been somewhat demoralizing for me, too, although I hadn't expected it to be. I thought once, "Since when can we vaccinate against autoimmune diseases?" And I said to my mom, "Have any chronic illnesses been cured in your lifetime? In the past 100 years? Why is everyone SO SURE that diabetes will be cured?" 

Don't get me wrong - I fully support diabetes research (I especially enjoy being a research subject - participating in clinical trials has given me a greater understanding of my condition and a sense of empowerment and I highly recommend signing up to be a guinea pig for one of these studies if you ever have the opportunity!), but I am not waiting for any big breakthroughs. I feel like I've been informed a million different times that they cured Type 1 diabetes in mice. That's nice. Keep working - I'll advocate for federal funding for your research and if you ever get to human trials I'll volunteer as a subject - but I'm not getting my hopes up anytime soon. 

Although I honestly don't expect a cure for this disease, I would be shocked if one day the scientific community announced that they were going to stop looking for one. And I guess that's kind of how I feel about the Diamyd study and the reaction to it - everyone is just giving up and it's unusual, and sad.

I was surprised to see the word "failure" in so many headlines and hear the simple phrase "it doesn't work" in conversations. It almost seems as if this whole avenue of research, which has been pursued with great hope and enthusiasm by so many for so long, is just being given up on. As if, with the results of this trial, Diamyd and the wider diabetes research community have put up a big sign that says "Dead End." 

I never assumed or expected this treatment to work - but I didn't expect a conclusive NO GO from it, either.

               I've been hearing so much over the past couple years about Diamyd and its GAD treatment - so much that I should be able to sum up the concept of GAD in a few words on my own, but instead let me give you the description from the Seeking Alpha article:

“Diamyd’s treatment strategy focused on the presence of the protein glutamic acid decarboxylase (GAD) in insulin-producing pancreatic beta cells. Its hypothesis was the immune system in type 1 diabetics was overly sensitised to the protein, and the Diamyd vaccine, an isoform of recombinant glutamic acid decarboxylase, aimed to induce tolerance. The hope was to preserve beta function for longer and delay eventual insulin dependence, as had been demonstrated in phase II trials.”

                 

There was good reason to believe that Diamyd was on the cusp of developing something that could prevent and stop Type 1 diabetes. My mom wanted to have Diamyd t-shirts that said "In GAD we trust" on the backs. 

And now, as of Monday, everything has changed and there can be no more hope placed in this - at least that is what the news reports are saying. Let me note that Diamyd's U.S. trials are continuing, and maybe there are valuable scientific insights to be gained from this "failed study" that could still somehow help people with diabetes. 

From the article I quoted earlier:
"With enrollment already complete in the remaining diabetes trial it is likely to run to completion; if positive trends were detected in Europe, investigators may still retain some hope that the resources already committed will yield statistically significant results in US diabetics. However, investors are probably right to write off the Diamyd vaccine – positive US trial results would now be a major surprise. With its next-most advanced products in the tricky Parkinson’s disease and pain spaces, Diamyd Medical is reverting to a higher-risk, mid-stage development company, and one with significantly less value."

(The full article is here.)

My mom, in her role coordinating things for the U.S. studies, had these wonderful postcards and stickers made that say "Don't let type 1 diabetes kick you around! Get involved in diabetes research."

I hope the decision-makers at Diamyd don't entirely abandon their efforts to treat diabetes... this enterprise with the GAD vaccine was not just a branch of a business that can be shut down in a "let's cut our losses and move on" kind of way; people with diabetes around the world invested their emotions and energies into believing in this, and it's just so tough for them to suffer a conclusive letdown like this. I'm not sure if I'm advocating for companies like Diamyd to slowly but ambiguously reveal that their treatments aren't actually effective rather than being honest and upfront and saying "hey, this is the end," but that sure would have been easier to deal with. I think. I don't know.

Weekend in Maine

          Ah, to be by the ocean! East coast, West coast, a foreign coast - doesn't matter, as long as I can smell the salty sea air I am one happy girl. And this past weekend was a very happy one, not only because I spent it by the seashore but also because it was with people I love.
          My mom's side of the family had a big reunion in Ogunquit, Maine to celebrate my great uncle's 90th birthday. Relatives came from places as far away as Seattle, Santa Cruz and Scotland. Starting on Friday night, wine and tears just kept flowing, as they often do on these occasions.
          My great uncle graduated from Dartmouth in 1942, and there are several other "Dartmouth men" in the family... enough for my mom to insist on us all posing together for a picture yesterday. She even orchestrated it so that we held old photographs of the rest of the family's Dartmouth grads in our hands for the photo. As cheesy as it may sound, I love the fact that I'm part of this family called the Swensons, of Swedish origin and with the granite of New Hampshire in their muscles and their brains*! I'm looking forward to interviewing my cousins, aunts and uncles this summer for a project I'm pursuing, tentatively called "Growing Up Swenson," to document the family history (or maybe just a segment of it).
          The past few days have been like a mini-vacation. I pretty much forgot about schoolwork, kept my cell phone off, and stayed away from computers and the internet. The last thing I did before turning off my phone on Friday was check in on the @iDrevolution and @iDevents  handles on Twitter; the 2010-2011 Triabetes team was racing in Ironman St. George on Saturday, and I thought about them during my short swim session that morning, knowing that they've put in so many hours in the pool, on the bike, on the roads and in open waters to prepare for such an epic endurance event. I'm sure they're all celebrating their accomplishments today. Way to go, Triabetes. 
          Although I didn't get a whole lot of swimming, cycling or running in this weekend, I exercised just enough to keep my blood sugars happy and for my cousins to make remarks about my self-discipline (ha! if only I could be really disciplined and stop wimping out about late afternoon bike rides).
           If it had not been for this reunion, I would have been at school and my mom would have been at home in Maryland on this Mother's Day. Instead, we got to walk along the beach and go out for a nice breakfast together. A great way to end the weekend. Now, on to studying for tomorrow's anthropology exam! 

* lyrics from the Dartmouth College Alma Mater

New Bike, and other news

After doing a sprint triathlon in 2009 with a hybrid bike - not recommended - I promised myself I wouldn't try another tri without one of those skinny wheeled, curved handlebar machines. The search for my first road bike started a few months ago, when I registered for an Olympic-distance triathlon called Mooseman. The race is on June 4th, and the cycling course is supposed to be quite hilly. Today I bought the bike that will carry me up those hills! My muscles will pry do some work, too... just not nearly as much as they would on a heavier frame. I took this thing out for a mild ride this evening, about ten miles, and no slope was too steep for it. 

Here "she" is... I think I should name her. Suggestions welcome!

Before this Saturday, I had never been on a road bike. So while this 2010 Specialized Dolce is by all means "entry level," and isn't the lightest or the most expensive or whatever, it is a HUGE step up from everything I've ridden before. Here's hoping it will be a trusty companion for many miles in the years to come. I told my mom, who pitched in to help me pay for it, that I wouldn't upgrade to a new one until I started training for an Ironman. She said, "Ironman?! Svati, hold on a second..." 

Last night I sent out my first batch of fundraising emails to potential donors for Testing Limits/Insulindependence. What a great response I received! It was really awesome to see that some people opened the email right away and then - bam! - donated 10 bucks, like it was a no-brainer. I'm still a bit behind as far as hitting certain fundraising benchmarks, but it's been such a confidence booster to see the number of contributions slowly creeping up over just the past day, since sending the email. 

In other news, spring has finally sprung here in Hanover! Today the green ("both the physical and emotional center of campus," as I say on my campus tours) was full of students and townies playing frisbee, eating, studying, lounging, babysitting, you name it. People are running around in shorts and tank tops. We joke that the college president has a deal with some higher power to bring the sun out just for the prospies, or prospective students, who are visiting campus this week to decide whether this is the right school for them. My roommates and I celebrated the warm weather by getting froyo at foco (college speak for frozen yogurt at the cafeteria) and enjoying it - where else? - out on the green. 

Skipping Sophomore Summer

  Today I received notice from the college registrar that I officially have permission to not take classes this summer. Sounds strange, right? Not if you go to Dartmouth, where it is a long-standing tradition and requirement for all students to be on campus for the Summer term (June-August) between their sophomore and junior years.
   Dartmouth's academic calendar is based on the quarter system. Each quarter, or term, students can be on campus taking classes, off campus taking classes (study abroad, an exchange program at another school), or off campus doing something else (internship, research, fun). It's all VERY flexible, and that's usually a good thing, unless your best friend is studying abroad in Barcelona during Fall term and then you're off doing anthropological field research in Brazil during the Winter, when she's on campus, and then you go back to campus for spring term but she is off again for an internship in NYC. Whew! It's overwhelming, to be honest. We call this crazy system "The D-Plan." Everyone is encouraged to create his or her own D-Plan, but the sophomore summer term is supposed to be non-negotiable. Sophomore summer is for bbqs, swimming in the river, living in your frat/sorority house, and bonding with your class while taking courses to make up for that off-term in Brazil. 
   I decided to arrange my D-Plan so that I was taking academic courses during Fall/Winter/Spring of both this year and the next, and I didn't see an opportunity for a strictly non-academic term at any time other than the summer.  Will I miss out on some fun Dartmouth-y things this summer? Sure. But I will be plenty busy with other stuff (traveling, working, volunteering for Insulindependence, just living life). And I don't subscribe to the belief that there is one single "Dartmouth experience" that's incomplete if you don't do this or that.  
    Probably 95% of my peers create D-Plans that include this traditional summer term on campus, and it works well for them. One of my friends has an internship in D.C. this term, then will be back on campus in the summer, then will study abroad in London in the fall. Another was off this winter, volunteering at an HIV/AIDS clinic in Tanzania, and so this term (spring) is like the beginning of a new academic year for her. She won't be burnt out come summertime! It would be, I think, more socially acceptable to be on campus this summer, like all the other sophomores, and then take the next fall term "off" to go do research on medical anthropology in the Himalayas (something I seriously considered doing at one point). But I've been here at school all fall, all winter, and all spring, and in the summer I will need a break, and I actually am not as interested in medical anthropology as I thought I was, and that's okay. 
   After lots of consideration, I decided to submit a petition asking for a waiver for this summer term, and since it was approved this afternoon, I feel like a load's been lifted off my shoulders. First of all, it feels great to have this squared away. Also, having the petition approved by the registrar makes me stand a little taller when I sheepishly tell my peers that I'm not going to be here this summer.
   But, again, I really need to stop worrying about what other people think and just do my own thing. Fear of disapproval can totally paralyze me sometimes!
  (This post is decidedly not related to diabetes or exercise. Hope that's okay :) )

Intro: Diabetes and Exercise (or, why I started this blog)

You could say that diabetes and running have been my main extracurricular activities for the past several years. Succeeding in both of these areas demands a lot of hard work, with great rewards as well as disappointments. Sports and chronic illnesses can, on their own, teach individuals about discipline, dedication, and persistence. For me, trying to make distance running and diabetes mix has been the biggest lesson of all. 

Type 1 Diabetes is primarily a problem with balance – the balance of food, exercise, and insulin in the body, which is easily maintained in most people with healthy pancreases.  It’s sort of like an equation. Actually, having to think about everything I eat, test my blood sugar constantly and fine-tune my insulin doses might not be so bad if only there was some perfect mathematical formula. Unlike equations from algebra class, though, diabetes cannot be solved or balanced. There are tons of variables to throw into this one, and anytime I factor in running, my favorite activity, I end up with an inequality. Different types of workouts require different amounts of insulin; the number of carbs I eat before a workout depends on how many miles I plan to run; for hours after exercise my body might be more or less sensitive to insulin than it usually is. 

I will always believe that joining the cross country team as a high school freshman was the best decision I’ve ever made; distance running, while not always easy, is incredibly rewarding. There were many times when I thought that diabetes was a good reason for me to abandon the sport, though. One of my favorite phrases throughout high school was “diabetes and distance running don’t mix!” It’s true that balancing blood sugars and insulin, hard enough on its own, seems to become exponentially more difficult when sports are added to the equation. But finally I have decided that the extra work required to train and race safely with diabetes is worth it. There will be no more questioning or wavering on this issue for me, mainly because of the many amateur and professional diabetic athletes I have come to know and admire over the past few years.  

I’ve met diabetics who’ve climbed Mount Everest and diabetics who’ve completed Ironman triathlons. I’ve met a whole community of people with Type 1 who not only refuse to let this disease stop them from being active, but actually encourage regular exercise and outdoor adventuring as a way to make life with diabetes better. This is where Insulindependence comes in. Insulindependence, or "iD," facilitates and strengthens this community of athletes with diabetes, and this community inspires me in a way that my high school running coach never could: it acknowledges my everyday struggles with diabetes but insists that it is possible to achieve peak performance as an athlete if I just struggle a little harder sometimes. Insulindependence has pioneered the concept of “experiential diabetes education,” which is learning and practicing diabetes management skills through sport. The idea that sport can actually improve the quality of life with diabetes, and can be an important educational tool for individuals with diabetes, is truly revolutionary. 

Insulindependence is, I guess, the reason I started this blog. Being selected as a 2011-2012 Captain for iD's Testing Limits program has given me a year-long task through which I will have the opportunity to help others in a meaningful way and learn more about myself at the same time. Seeing how many other iD Captains maintain blogs made me realize that this experience is something worth chronicling. This blog may only last until next summer, when my formal assignment as a TL Captain ends, but we'll see... maybe I'll enjoy blogging so much that I'll stick with it long afterward. 

Thanks for reading!