Tag Archives: T1

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!

Knowing that You’re Plugged In…

Last night, beneath my blanket, under a mosquito net, I tried to sleep… and although it was like every other night since I got my pump in 2002, I was particularly aware that I was connected to it last night… every turn and shift made me alert to the fact that next to me lay a small mechanical box keeping me alive!!

 

Sitting at the table this morning drinking milk tea (a Kenyan staple), I wonder what caused my hypersensitivity… my pump site wasn’t causing any discomfort, and while I got tangled a little bit, that’s kind of normal when turning over in sleep… and yet, the entire 7 hours of semi-sleep, I consciously knew I was attached. Hmmm, metaphorically, maybe this means I’m having an issue with always having to be attached via cord to a lifeline… and maybe these musings are better for later in the day, once I’ve gotten more caffeine… anyone with a psychoanalysis of this predicament, I am open to your interpretation.

October Post… FROM KAKAMEGA KENYA!!!

Wow, I can’t believe how remiss I have been about posting since getting to Kenya!! The entire concept of “Kenyan time” is clearly affecting me, seeing as it doesn’t feel possible that it has already been 4 weeks since I arrived in Nairobi. I am now in rural northwestern Kenya, near a town called Kakamega. This experience so far has been amazing—my eyes are open to so many brand new things, I feel that I am learning a lot and my views are changing.

But… as this is a blog on health and diabetes, I probably should not get on my soapbox about all things social and public health… or at least not until I get my update on diabetes done!

So, here we go. Things with my blood sugars have been pretty good considering all the changes- it is much hotter here than I am used to, meaning that I sweat more, so I have to keep focused on rehydrating! I have used Gatorade powder that I brought from the States, and on the couple of days that I have felt very under hydrated, they have helped restore water content and salt (both of which is lost through sweat). The food is also very different here, I eat a lot of maize (similar to corn) and grains, some vegetables, and occasionally fruit. This is a shift from my diet that has a lot of fruit in the US… but I’ve found that even though I am eating more grain here, my blood sugars seem more stable. I attribute this to the lack of processing—most things here are pretty fresh! And in general, I need less insulin for things like bread… the only thing I’m finding that causes me consistent challenges is corn flakes! A surprise to me! Lunch time is usually getheryi, a mixture of maize and beans, with some vegetable (recently, it has been kales!), which ends up being a pretty big bolus for me during the day (around 6-8 units, depending on amount and the day’s activity).

Another surprise was that I had a lot of middle-of-the-night low blood sugars, causing me to change my basal rate (which I haven’t made any significant changes to for about 2 years)… this fixed the problem, and I usually wake up around 100 if my blood sugar is doing well the night before.

Like Eugenie said in her interview, it has been pretty easy to find local snacks to treat low blood sugar, from juice boxes to local candies… so this hasn’t been an issue. Additionally, I was pleasantly surprised to find that certain chemists (pharmacies) in Nairobi carried Humalog in addition to several other types of insulin (several that I had never heard about), so I have a pretty local backup plan in case of any insulin emergency. But for now, the 20 bottles are keeping chilled in my FRIO packs, a product that I will happily recommend to anyone doing any traveling or needing a way to keep insulin cold when on the move!

I think that is all for now, beyond the general encouragement I would like to offer to any yearning travelers… don’t be afraid, having an amazing adventure despite T1 is totally possible with the right preparation. So go, be brave, have adventure, and look forward to learning about the world around you and yourself!

KENYA!

It is my 5th day in Kenya, and my final day in Nairobi—tomorrow, I will head northwest to the town of Kakamega. Spending my first few days in Nairobi with the director’s family has been very helpful in acclimating me to a very new environment and culture. Likewise, being in the capitol city for the first few days in a new country has given me some peace of mind, as it is in Nairobi that I will have the greatest access to extra insulin supplies should I have any issues with what I packed.

From my last post, you know that I was nervous about Kenyan customs having a problem with the amount of needles and other “drug” supplies I was bringing into the country… upon arrival, I was relieved to see that my checked bags looked to be about the same size as they were in the US, and taking the advice of an older friend who has traveled in and out of Kenya many times, I made it through customs just fine by smiling and making light small talk! In fact, the only thing they asked me about was the rectangular shape in one of my checked bags, which was the board game Sorry! After asking me a few questions about this (what is this? – a child’s board game… how much is it worth?—probably 5 American dollars, it is used… used?—yes sir, I used it as I grew up), the security guard nodded, and let me on my way.

Upon arriving at the home I am staying at for my time in Nairobi, I took a minute to myself to check the bags for my supplies, and confirmed that nothing appeared to me missing! Huzzah! Storing my extra supplies of insulin in the fridge, I proceeded to enjoy my time getting to know the director and her family, going around Nairobi, and visiting the Giraffe Home and getting a giraffe kiss!! Wonderful!

Interview with Fellow Graduate, T1 and Worldly Traveler, Eugenie!

Interview with Eugenie Coleman, T1, adventurer, philanthropist and overall well-wisher!

Eugenie was diagnosed in high school with T1 after experiencing symptoms of hyperglycemia for several months. We met our freshman year of college, when I saw her discreetly giving herself an insulin shot in the dining hall! (She always jokes how covert she was being, and how I totally blew her cover!). I have been lucky enough to become friends with this awesome lady over the past 4 years, and even participate in the Tour-De-Cure bicycle event this past May, riding 10 miles in the beautiful Maryland countryside. Eugenie is such a cool person, but she truly inspires me as she had little experience with other diabetics, and has found her way through coping with T1 although often having to travel the rode solo. Here’s an interview on her experience of studying abroad with T1 during her junior year of college: read on to find out how she dealt with insurance issues, a new environment, and an injury while in Brazil!

Me: You’re 22, graduated from college, and are in the place of making a lot of decisions about the next few years: looking back on the past few years, (and thinking ahead) how has T1 impacted your young adulthood?

Eugenie: [T1 has influenced me] quite immensely actually; since graduating from college I have stopped drinking all together. I had so many issues the day after drinking heavily… [in] college it was all about binge drinking, and I found that it was really hard to predict my blood sugars the following day. Whereas other people dealt with just chugging a bunch of water to cure [the] hangover, I had to deal with not only the hangover, but also adjusting my bolus ratios to account for the fact that alcohol was still in my system. Now, I know that a lot of people drink, I know that you drink*, and that’s cool, but for me, I’d rather not deal with it whatsoever. So, since graduating, I have [stopped drinking, and just gone out and had fun dancing]. And I have been finding ways to get my diabetes under control.

*Note: In terms of alcohol consumption, I always bump up my basal rates around 50%, so I’m at a 150% rate of basal after a night of heavy drinking.

Me: What else have you looked into or tried out to help manage your T1 since graduating?

Eugenie: I spoke with a guy who is a raw vegan, and he told me about how he keeps his diabetes in check by not eating fat. I haven’t dramatically shifted to a raw vegan diet, I still eat meat, still eat eggs, and I do eat fat in the form of almonds and avocadoes and coconut milk, and really good stuff. But, I have tried to cut out grains from my diet, gluten specifically, to see if cutting out those starches could help control my blood sugar… and I found that it is not necessarily the case—even when just eating fruits and vegetables, it’s hard (no matter what your diet is) to become your own pancreas, and calculate that stuff. So, now I’m considering trying out the pump, to see if that will help me gain more control.

Me: Has diabetes impacted you beyond dealing with the physical disease?

Eugenie: [Yes], in terms of finding a career, I am finding that my diabetes is motivating me to find a job working for organizations like ADA or JDRF, that donate all their time and energy to finding a cure for this disease. Hopefully I can get a job in that kind of capacity, which would be a huge thing for me, and a great way of using my talents, so that would be another way that diabetes has had a huge effect on my young adult life.

Me: I know that you went abroad, and I am curious about how you managed to get insulin—did you have any issues?

Eugenie: Based on my experience, insurance companies suck. It is really frustrating dealing with an institution that is trying to profit off of your health problems, because I was going abroad for what I foresaw to be 6 months (to Brazil), which here in America we consider a third world country. And I wasn’t [looking] to get a new doctor, or deal with getting prescriptions [while abroad], and trying fill them while I was there. I just wanted to get all the insulin [before I left], all the needles, all the test strips, all the lancets, and have them at my disposal while I was down there. So, that is 6 months worth of supplies. But, normally insurance companies will cover maybe a month at a time. So, getting enough supplies was a huge hassle.

Me: So, how did you end up getting the supplies?

Eugenie: [First], I had to get a prescription from my endocrinologist. Then, I had to get vacation override from CVS so that they would give me 3 months worth at a time. So, I had to deal with the pharmacies getting that much supplies, and I had to deal with the insurance company covering that much. [When it was all said and done] some of it had to be mailed to my apartment, rather than picking it up in person at the pharmacy, just as a way of getting a loop hole in going around the system’s way of dealing with it. So I finally ended up attaining everything I needed, but I know for a fact that my mom ended up paying out of pocket for a significant amount, especially for test strips, which are so expensive. For some reason, insurance companies don’t understand that the amount of times you test a day can vary, and sometimes it can be more than 10 times a day—who knew there are 24 hours in a day, and you want to test every 2 hours, well… they don’t want to cover that. But, I finally obtained everything I needed and got down there.

Me: What was your experience with customs and supplies?

Eugenie: I had a huge bag of supplies, and I had to bring with me a letter from the doctor, saying that yes I was diabetic, which was why I was carrying all these needles, that I wasn’t going to hurt anybody, so that was taken care of, but it was brought up while I was abroad.

Me: How did you deal with your sharps abroad?

Eugenie: Well, when I was abroad, I got a sharps container. Or use a laundry detergent container, that’s been cleaned out, and put sharps in there. I didn’t really change my lancets as often as I should, but I would put those in the sharps container, and the used needles and stuff. And it never got too full, but I know that if it ever does get too full, you can always drop it off at a hospital and they’ll know what to do with it. But I just brought that back with me.

Me: What was it like dealing with T1 in Brazil?

Eugenie: My diet changed when I was in Brazil. I was eating a lot more fruits, rice and beans, and I had experiences with highs and lows from that. But for the most part, I feel like I took pretty good care of myself!

Me: What was the living situation, and how did that impact your experience with T1?

Eugenie: My stay was great because my homestay was done with a family that lived 2 minutes from the hospital—the study abroad program really took care of me in that regard. They made sure that I was placed in a house that was closest to the hospital, and they put me with a family where my host mom’s sister and parents were all doctors, so if there was any concern, they could be there within 5 minutes, and helping me out… I found that the study abroad program was really considerate in that regard. They even gave me a 2nd location to store my insulin, because my dad was really concerned that if the power went out, at my host family’s house, the refrigeration would fail, and my insulin would not be secure. So, he asked me to find a backup plan, another place to store insulin in a refrigerator, and maybe even a third (I was like, whoa dad, slow down!) But my study aboard program, which was called Counsel on International Educational Exchange, CIEE, for any of you bloggers out there who are looking to study abroad, helped me out with the living situation.

Me: Any other memorable T1 and host family experiences?

Eugenie: Actually, the first time that I met my host mother, I went with a walk with her. And, I hadn’t brought anything with me… I hadn’t brought my glucose monitor, I hadn’t brought any snacks in case my blood sugar went low, I hadn’t brought my insulin or anything like that. But we’re out walking, and she was showing me the area, like, “so this is the beach, this is this… ” and I started to feel—and I don’t know if anyone else experiences this—but I started to sense my shorts against the backs of my legs. But I could tell that I was starting to go low, so I said to my host mom “could you get me a coke”, and she did, and we sat down, and I drank it, and she was really understanding about it. But I felt really stupid, because it was my first hour knowing this woman, she was going to be taking care of me for the next 4 months, and already I had made a mistake… One thing that I’ve experienced a lot [in having 1] is putting blame on myself when it comes to problems with diabetes. [What I’ve learned is] that you’ve got to take it a day at a time, and every time something like that comes up, remind yourself, “I’m doing the best that I can, it’s not my fault, I didn’t ask for this disease”. You’re pancreas was created perfectly to do all this for you, and when it’s not working, there are going to be problems, because you are doing the calculations yourself. So you just have to be easy on yourself, and stop blaming yourself for problems that arise, and just take them one step at a time.

Me: How did you explain diabetes to the people you hung out with in Brazil?

Eugenie: I hung around with a lot of American girls, so it wasn’t difficult to explain to them what was going on, cause I just spoke English to them, and they knew other diabetics.

Me: I know you had an accident during your time abroad- can you tell me about it?

Eugenie: Towards the end of the program, I fell off of a skateboard, and I broke my ankle. I wouldn’t say that that was a diabetic concern, although it was in lower extremity. But it did affect my blood sugars, because I became sedentary while my feet healed, and dealing with physical therapy and traveling.

Me: Do you have any other crazy abroad stories that have to deal with diabetes?

Eugenie: There was never an issue about going out. I probably should have been a lot more careful, because that was back when I did drink heavily, and that was how all my study abroad friends partied, they just drank a lot. So there were times when I would black out and wake up the next morning and was like “wow, how did I take care of my diabetes?” But I do remember one situation, it was after I had broken my ankle and before my flight home had been scheduled. There was a moment where I felt weird, felt like my blood sugars were going low, and I got out my glucagon and I did everything—I injected the water (diluting solution), swirled it around, pulled it back in and I put [the loaded syringe] on the side of my bed, and I said to my host parents, “if I go unconscious, inject this into my thigh and get me to the hospital”. It didn’t come to that, but that was the first time I had ever prepared the glucagon injection for myself.

Me: Wow, that’s crazy! It’s good that you had the emergency glucagon kit. When I made this decision to go to Kenya, I initially was in the mindset that I was just going to up and go!! But my parents reminded me that there are so many logistical things to think about and plan for before taking an adventure like this one (such as letting people know how to use an emergency glucagon kit). Anything you recommend doing that you did and really were happy about, or didn’t do and wish you had?

Eugenie: Looking back, I wish I had made a connection with an endocrinologist in Brazil who I could talk to about these things. I mean, I don’t know if I would have had access to an English speaking endocrinologist, which would have made it more difficult, but I did speak Portuguese, so I could have made a basic connection and maybe understood a lot of what was going on. I kinda wish I had done that because a lot of times, I just think “it’ll work itself out, it’s not that big of a deal” but, you know, diabetes is a huge thing in a T1 person’s life, and you can’t just throw it to the wayside. Instead, you have to think everything through, and you have to think, “ok, whatever amount of effort is going to go into this, and whatever amount of money it is going to cost me or my family, it is worth it, it is my health, and it has to come first before everything else”. It’s hard to face those facts when you get so used to the everyday things that become habitual and don’t present as much of a problem in your life (such as having access to prescription refills at the CVS around the corner). There are certain things when you’re changing your lifestyle, especially when you’re changing where you’re living, that you just have to think through.

Me: I agree, it’s more than worrying about food, water, shelter for diabetics… the carefree traveling life has to be a lot more planned out when dealing with a major disease.

Eugenie: It’s something that almost makes me want to cry… other people don’t have to deal with this. Why do I have to deal with it? How much easier would it be if I could go backpacking and live off of nuts, and bring canned tuna and [other stuff] in my backpack, and not have to know where the nearest hospital will be, where the nearest pharmacy will be, where I can go buy a juice box to bring with me. People don’t think about that, and you develop envy of those people. But, everyone has their own issues to deal with. And honestly, when they don’t have to think about it, there’s no challenge, so they’re not growing stronger like you are everyday, facing these obstacles, thinking about them and dealing with them, and not just putting them on the backburner, and saying they’ll work themselves out. So, definitely think about all the ways that you’re becoming stronger by doing all of this—for example, go to the nearest grocery store wherever you’re traveling, and see what they have to offer. They might have tiny little juice boxes, that’s what I had in Brazil, and I stocked up on them for lows. By finding this out, and paying for them out of my own pocket, I got to know how much stuff cost, and what the supplies are [available]. A trip to the grocery store as a diabetic is definitely the first thing you should do when you travel somewhere.

 

Me: Any final advice?

Eugenie: Just from my personal experience, that concept of staying positive! A cure may come in the next 10 years, it may not even come in your lifetime, so don’t be focusing on that, be focusing on how you can deal with diabetes in your everyday life. There is a way to do things that seem impossible at first, so for like you and me, studying abroad. Take [obstacles] step-by-step and work with someone, and ask for help when you need it—don’t be afraid to take on something that seems daunting at first, because there will be a way to work things out!!

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(Eugenie and I at the Tour-De-Cure bicycle ride in May 2013!)

Negotiating Supplies, How to Overcome the Structural Obstacle called Insurance

I am running into insurance issues while trying to obtain the amount of supplies I will need for my 9-month stint—major bummer! Here’s the situation: as I have graduated, my school insurance ends mid-August—a serious bummer, as school insurance was awesome as it covered a lot of the cost of supplies—we’re talking 8$ a script. I now have to switch to a high risk Wyoming pool, as my parents are self-employed and other companies deny me due to a pre-existing condition, i.e. T1. After talking to MiniMed about ordering pump supplies, this is what I have found. I am both lucky and unlucky to be switching insurance companies in about a week; the challenge, insurance companies will only pay for a 3 month supplies…. but by switching, I am able to basically double order supplies. But, this still leaves me with only 6 months of a supply that is covered by insurance. Hmm, so how to overcome this issue?  Working on it, and will let you all know. Additionally, any suggestions welcomed. 

Great Article to Support/Encourage Youth to go Abroad

http://markmanson.net/work-overseas

 

I love when I see articles that encourage dreams I have (one of which is working/living overseas!). Here’s an awesome article outlining a few very good reasons why it is actually very smart to try somewhere new! And, if a company is so willing to set you up in luxury if you’ll go somewhere abroad, pretty sure they’ll offer you some awesome medical support as well! Have your (proverbial) cake, eat it too, and pay very little for the insulin to cover it!