Tag Archives: chronic disease

Weighing T1

Backpacking around Europe, Asia, New Zealand, Latin America, Australia, or the US is an amazing adventure, rocked with incredible experiences, questionable moments, and of course, the excitement of seeing new things, meeting new and different people, and the ability to grow and learn from these experiences. I have read a lot of blogs that talk about what and how to pack into your pack, in order to have enough stuff (i.e. underwear), the right items (like the REI fast dry towel), and not too many items weighing you down (do you really need to pack a second pair of tennis shoes?)! These girls (and a few boys) have the perfect-pack down; their bag is beautifully packed, perfectly minimizing clothing, shoes, toiletries, cameras, journals, and a yoga pad into a 40-liter backpack.


I would love to tell you that I too carry a 40-liter pack only weighing 15kg… but I don’t. I carry a 60-liter pack, weighing closer to 22kg. Why? Because months worth of pump and testing supplies takes up a lot of room, and weight. When having to carry them on your back for miles through airports, train stations, and twisting streets in search of a hostel, I’ve learned that things like test strips are surprisingly heavy! But, of course, a little extra struggling is worth the opportunity, and even gives me a bit of extra cardio exercise each day (there is always a silver lining). But here is how I pack my T1 supplies, in order to minimize the space it takes up, so I too can pack minimize my clothing, shoes, toiletries, cameras, journals, and my diabetes supplies into my 60-liter pack.


1. Take all pump sets, reservoirs, test strips out of boxes, and tightly repackage into 1-liter Ziploc bags. I get about 16 sets per bag, and can get up to 50 reservoirs into a bag. (The edges of pump site packages can rip through thin plastic, so try to find thicker plastic re-sealable bags).

2. When initially flying out of the US to Kenya in fall 2013, I left the insulin vials in the prepackaged box, with a sticker of the prescription on each box. Once I had arrived, I unpacked the insulin vials into my Frio-packs to keep them cool (as I have not had a fridge to store the insulin in). I have since traveled with all my insulin/diabetes supplies, and have not had a problem with the vials in the frio-pack. I simply carry a letter from my doctor in case any TSA official stops me and asks me about this.

3. In my big pack, at the very top, I stick the same letter from my doctor, saying I’m allowed to be traveling with needles, insulin, test strips etc. I put it in face up, so the very first thing a TSA official searching the pack will see is this letter, explaining why I am carrying 200 needles and other drug paraphernalia.

4. I prefer to carry all insulin and test strips in my carry on while traveling… in case my pack gets lost in transit, I can usually find a way to get needles in the country I am in, either in a pharmacy, or a hospital. Insulin and test strips are different, as some countries only have some brands, and usually, they are very expensive to buy in the places I’ve been and asked (Kenya, Italy, France). I feel more comfortable knowing I have the insulin and strips on me, as I have more ability to keep track of a carry on.

5. If you are nervous about supplies getting stolen while staying in a hostel, book hostels that specifically have lockers, and carry your own padlock. This way, you can lock up your supplies, and feel comfortable while you are traveling around a city, enjoying the traveling more. And bringing your own padlock means you don’t have to rent one, saving yourself 2 euro!

6. Buy local, cheaper, snacks for lows. I keep a small baggie of glucose tabs in my day pack in case I ever get into a jam (which is also my carry on), but I save these for emergencies, such as having a low while trying to go through a very long airport security line, and not having any juice or ability to buy anything without getting out of line and starting the 2 hour wait all over again.



Happy T1 Travels!


Finding Stability in the Turmoil of T1

In the past few years, there has been a lot of research on the emotional health of young adults with T1*. Most of these findings report higher levels of psychiatric distress: translation, those with T1 are showing high levels of depression, anxiety and general psychological distress. There is also a correlation data between a higher level of psychological stress and higher A1C reports (although, at this point, it is not clear which is the casual factor)2. This is problematic for anyone with T1, but is especially threatening for young adults, as the majority of young adults are leaving home, finishing up college, and creating a new life (that generally goes through periods of instability as we try to figure out jobs, relationships and living on our own). So what’s the backstory of this emotional upset?


Mr. Patrick Totty, contributing editor at Diabetes Health, wrote an article recently called The Agony of Type 1 Hope, discussing from a T2 perspective what seemed to be a great frustration for those with T1: the possibility of a cure3.  In this article, he discusses the frustration, anger and anguish that he has seen in comments posted on articles about emerging research by those with T1. And to me, this makes sense. T1 is not an easy disease to live with; it’s a consideration throughout each day, it’s everyday, and there are no days “off”. It’s a constant. And for many, it can be a constant struggle. Thinking back to something Eugenie Coleman said during her interview (see previous post), we are substituting mathematical calculations for an organ that was perfectly made to help our endocrine system… and is now unable to do so. So, there are going to be days that things go wrong, and no matter how hard we feel we are trying, T1 in that moment feels like an enigma- a nonsensical beast that is raking over our body, causing physical, physiological and emotional discomfort. Understandably, the result will feel tremendous, and we may need to spend some time curled up in a ball, feeling the frustration, pain and confusion of coping with such a disease. And that’s okay—we need to let ourselves have those moments. And at the same time, we must also acknowledge that we have an opportunity to grow stronger as individuals, and that we have a unique opportunity to be closer to our bodies than most people are—when listening and working hard at controlling our blood sugars, we can also quickly identify when other things are going on.


The way that I have found to cope with the struggles I feel, is to live my life in the moment, dealing with the day to day issues of this disease, and trying to invest my hope and effort into dreams that I am in control of. I am not a cellular biologist, or a medical doctor, nor do I wish to be—a cure is therefore something that I would benefit from, but not something I will invest a lot of time or hope in. Rather, I will focus on what I am: I am an adventurer, interested in the world around me, and how other individuals and collective groups understand their world… so my hopes are stored in travel, pursuing education in anthropology and psychology, and having adventures. I find that dealing with obstacles that I can effect change over, such as obtaining supplies for Kenya, to be very gratifying to overcome, as they are directly helping me achieve a larger dream, and this contributes positively to my overall emotional health!


If following stories about research on a cure, investing time, hope or maybe even money into it, makes you feel better and helps you get through the day-to-day struggles of T1, then by all means, continue! If, on the other hand, investing your time and energy into keeping track of research and a possible cure is causing additional emotional strain, maybe consider investing yourself into a venue in which you have more control… this isn’t to say you should give up hoping, but by engaging with something that you have more control over, you will have the opportunity to feel more success, and potentially learn more from any missteps!



*Hislop, A. L., Fegan, P. G., Schlaeppi, M. J., Duck, M. & Yeap, B. B. (2008). Prevalence and associations of psychological distress in young adults with type 1 diabetes. Diabetic Medicine, 25: 91–96. doi: 10.1111/j.1464-5491.2007.02310.x


*Luyckx, K., Seiffge-Krenke, I., Schwartz, Seth J., Goossens, L., Weets, I., Hendrieckx, C., & Groven, C. (2008). Identity development, coping, and adjustment in emerging adults with a chronic illness: the Sample case of type 1 diabetes. Journal of Adolescent Health, 43(5), 451-458.



*Kakleas, K., Kandyla, B., Karayianni, C., & Karavanaki, K. (2009). Psychosocial problems in adolescents with type 1 diabetes mellitus. Diabetes & Metabolism, 35(5), 339-350.



*Type 1 Diabetes Complications – Type 1 Diabetes Health Information – NY Times Health. (2012, May 22). Health News – The New York Times. Retrieved August 15, 2013, from http://health.nytimes.com/health/guides/disease/type-1-diabetes/complications.html


2Northam, Elisabeth A., Lin, A., Finch, Sue, Werther, George A., & Cameron, Fergus J. (2010). Diabetes Care. Psychosocial well-being with functional outcomes in youth with type 1 diabetes 12 years after disease onset. Diabetes Care, 33(7): 1430-1437. Doi:10.2337/dc09-2232.


3Totty, P. (2013, August 9). The Agony of Type 1 Hope . Investigate, Inform, Inspire. Retrieved August 12, 2013, from http://diabeteshealth.com/read/2013/08/09/7954/the-agony-of-type-1-hope-/