Tag Archives: Diabetes

Mhealth, Mtechnologies, Mexplainations… MT1?

I love Dr. Bennett’s blog, whitty, quick reads on new mtechnology/mhealth minutia.

Although not specifically aimed at one health problem, his main focus is on obesity research via mobile or computer technologies. Although knowing virtually nothing about mhealth technologies, his blog has offered up a wealth of information allowing me to dive head first into the pool. He mainly offers insight into the challenges that many mobile health technology apps face, and how to avoid them. But, he also gives other insights that are helpful for academics, such as tips on writing a R01 grant. Finally, he gives good background and insight on popular press items relating to technology, such as the FB algorithm “Year in Review” that has received some, well, negative reviews?

The rise of mtechnologies has also expanded T1 care options… I have vivid memories of astonishment as one of my beloved T1 camp counselors, talking about what it was to have T1 in the 1960s; boiling glass syringes for shots, and using “pee sticks” as affordable glucose meters were yet to be invented. [A cool entire history lesson of T1/T2 can be found here. ] Yet, as of 2014, it is possible to send data from your test meter to your iphone, and the new tslim pump design includes a touch screen. Additionally, the possibility of a bionic pancreas controlled via iphone commands has been postulated as a future direction of T1 care. The advancement of technology for treatment options and rise of information has completely transformed the experience of having T1 in a matter of years… and for those who are young and technologically literate, it works to our benefit. But what about individuals who are not as technologically advanced? Are the new technologies user-friendly enough to be accessible for older generations? And with the shortening of patient-provider time during medical checkups, is there the opportunity for those who are not in the tech know-how to catch up? And does the advancement in technology in the U.S. and other Western countries increase the gap in care opportunity and availability in middle or low income countries?

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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!)

内分泌学者, ענדאָוקראַנאַלאַדזשאַסט, endocrinolegydd… finding a doc in your future spot!

My ‘rents were nervous about me having access to western medicine while in Kenya, especially insulin. And while I knew that it wouldn’t be a problem, being able to show them that there were western trained endocrinologists in Nairobi backed up my assertion.

My endocrinologist in Baltimore recommended me to the Endocrinologist finder on the American Association of Clinical Endocrinologists, found here:

https://www.aace.com/resources/find-an-endocrinologist

Another option I found was through the Hormone Health Network:

http://www.hormone.org/contact-a-health-professional/find-an-endocrinologist

While planning trips abroad, it can be helpful to look up the location of endocrinologists in the countries you are traveling, to know which cities you can head to if a problem comes up!

Lean on Me – Who is YOUR Support System?

I am very confident that without a support system, it would have been impossible for me to do some of the things I have- from week long backpacking trips in the desolate woods, to athletic competition, to deciding to move 2,000 miles to the east coast for a highly stressful college experience, to taking a three week backpacking trip through Europe, to moving for a year to rural Kenya. That was a mouthful! It can be hard to overcome the challenges posed by a chronic illness, but having T1 doesn’t have to define or limit a life. It just means the logistics are slightly more complicated. In addition to a familial support system, attending a T1 camp during my youth has provided a wealth of people my own age to rely on, and individuals who are older and serve as mentors. The biggest piece of advice I can give is to try to find support, from people who simply care for you, such as family, but also from other individuals with T1, as empathetic support serves a very different and equally important role as sympathetic support. So reach out! To your local support groups if they exist, contact your local American Diabetes Association office, ask your endocrinologist or medical staff for ideas of how to connect. Look online! Find what works for you, and your back will be covered on those hard days when you need words of understanding and support.

Tip: diabetic camp is literally the best thing ever. It changed my life. A lot of camps look for staff who are people living with diabetes! So, if you never got to go as a kid, try it as an adult! Check out the ADA Diabetes Camp website to find a camp near you

http://www.diabetes.org/living-with-diabetes/parents-and-kids/ada-camps/camps/2013/

It’s all starts with a diagnosis…

So I now have this blog and am using it to open up a forum to discuss all things diabetes whether it be living with the disease itself, managing day-to-day activities or even just talking about fears around not letting living with diabetes stop you from doing what you love best. With that, here is some background on my diagnosis:

The clinical definition of type 1 diabetes is clear cut, a mathematical equation of carbohydrates to insulin, an understanding of the endocrine system pumping ions through semipermeable channels. My understanding of MY disease is not as clear cut, acting in a space that is not sterile, perfectly clean, or rational. Likewise, my understanding of WHY fluctuates. Most of the time, I am okay accepting that which I cannot change, and simply putting one foot in front of the other, moving forward, continuing with what I can control. But there are times when my rationality gives way to emotion- hurt, confusion, sadness, and of course, extreme anger. To say the least, it is frustrating to not understand the why. You see, my family has no history of diabetes, beyond a possible case of T2 in a great-great uncle. Yes, families sometimes have a child who is diagnosed out of the blue- and that was my family, when in 1999, my older brother was diagnosed with T1 after 3 months of extreme thirst, urination, weight loss and a black eye that would not heal– his 5th grade pictures forever shows that shiner. Similarly to many other families finding out that a child is sick, ours was completely shocked and shaken. As my family lives in a very small town in rural Wyoming, and the Internet was not available to provide massive amounts of information, there was limited amounts of information available for my parents. Therefore, many questions were left partially to completely unanswered. Could he play sports? What should he eat? How should my parents explain it to fellow parents? How should he explain it to his friends? Should my parents explain it to his friends? Eventually, seeking more medical advice from a larger university hospital in the closest city, a mere 6 hours away, enabled my parents and brother a better understanding of what diabetes meant for my brother on an individual level, and for our family at a collective level. As carb counting, insulin injections and A1Cs became more clear, the bigger questions also were answered: yes, he could play sports. Yes, he could attend school normally. Yes, he could one day have kids, who had a good chance of being healthy and normal as long as he took care of himself. Then my parents asked what was the potentially most loaded question in my personal history: could their daughter, me, also become diabetic. The doctors response: no, it would be a one in a one million chance, so improbable that they could basically guarantee that it would not happen. So, when at the dinner one night three years later I announced to my mom and brother that I thought I was diabetic, it was especially kind of my mom not to brush off the concern. Instead, she agreed that after we finished eating, I could take a blood sugar on my brothers meter. It must have been especially painful for her when the reading came back in the 400s, as in the previous moment her healthy other child who was practically promised to not contract this disease became “sick”.

Having an older brother who had already gone through the diagnostic process made it much easier for me- it wasn’t nearly such a readjustment for the family as a whole, and as I already knew the general info, like what a carbohydrate is, and how to count carbs, I was already knowledgeable about what the “diabetic life” was like. Giving my first injection was probably the hardest thing as it was very scary to be putting a shot into my own body, but everything else wasn’t bad. Additionally, I had gained the advantage of watching my brother struggle emotionally with the disease, and had somewhat of a road map to follow. I was very lucky to have this guidance, a leg up of sorts. It also meant that I was able to spend more of my emotional turmoil on the “how do I learn to live with this” instead of the “why me” questions, as I had discovered through my brother’s diagnosis that the question of why was unanswerable for us. Instead, being the stubborn girl I am, I started asking my parents about what I could and couldn’t do- the wonderful parents they are, told me that I could still do anything I wanted to- at the time, it was a surgeon. What if I got a low blood sugar during surgery? Could I even be a doctor? My mom said “yes, work hard, control your disease, be responsible, and go chase your dreams.” The dreams have changed, but the echoing of this motto throughout my adolescence overcame my self doubt, and gave me the confidence to dream big, despite having a very demanding disease.

Ps. Did I mention that I am headed to Germany today?!!! Whoooo!

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