Monday, May 30, 2011

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 :)

Sunday, May 22, 2011

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!

Friday, May 13, 2011

Epic fail?


"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.

Sunday, May 8, 2011

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