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