Monthly Archives: June 2013

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/

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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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An Introduction

Hello! My name is Elyse Thulin, I am 21 years old, and have just completed my undergraduate degree from Johns Hopkins University in Baltimore, MD. When writing an introduction such as this one, I generally describe things like what I majored in (psychology and anthropology), where I grew up (Wyoming) or maybe about what I hope to pursue as a career (global metal health). But for this introduction, I think it is best to say something about a part of my life I rarely do mention in introductions – that I have Type 1 Diabetes. There are several reasons why I don’t mention this aspect of my life to most of the people I encounter- reasons such as having to answer the inevitable 10 questions about how/when/why I was diagnosed, causal factors (my least favorite question being if I ate too much sugar as a kid) and finally the chance that the information will change how the person perceives me in some way. Many people might argue right about now that in order to educate people about Type 1 Diabetes, these questions must be answered. They are correct. But, sometimes I just don’t want to have to be the one answering all those questions on a daily basis. After all, I’m not the T1 guru, I’m just a girl who has experience with the disease. But part of me also knows that one of the best ways I learned about my disease and how to handle the physical and emotional challenges was through the advice and experience of other individuals with Type 1… Which leads me to the motivation behind this blog. A friend and mentor of mine who organizes one of the Maryland Tour-De-Cure bike rides encouraged me to write this as a testimony that life can be fully lived, dreams be pursued, and chances taken while simultaneously managing T1. If you decide to read and follow my blog, I encourage you take this writing as that of a very young adult, who doesn’t know a lot, but wants to share the experiences she’s had, in case it might help anyone else. Please feel free to post comments, criticisms, or questions. Like I said, I’m not the T1 guru, but I am a girl who has been encouraged to dream big, and chase those dreams! With that being said, this blog will reflect me chasing some of my dreams while managing my disease.

The first big adventure on the docket, moving for a year to rural Kenya…