Keeping Your (Insulin) Cool

The beauty of having T1 and living in 2013 is the possibility of finding information via the internet- beyond checking the spelling of certain words that my autocorrect does not understand, I have found a ton of good tips and advice on general travel,  backpacking, Type 1, backpacking with Type 1, traveling with Type 1, etc. And I want to share a few gems I have found!

 

Kenya is HOT. It is on the equator. But insulin needs to stay cool… problem? NOPE! Thanks to a blog called The Active Diabetic, I found out about a company called FRIO, that specializes in designing cases to cool insulin…. And the best part? You don’t need to freeze them ahead of time. Check out the website to learn a bit more, but the gist is that these green-reusable packs (I LOVE when something both works AND is environmentally conscious) are able to keep insulin cool for a minimum of 3 days when activated for 5-15 minutes in cold water. And you can reuse them again, and again, and again. FRIO offers a lot of different sizes, from single to multiple packs for insulin vials or pens, and different colors (perfect for those who like to color code or have multiple diabetics in the fam who tend to disagree about what supplies is whose…). I will most likely order several red cases, in different sizes for Kenya- red being easily seen and based on the western system, the color of medical signs.

FRIO also offers medical packs for a variety of other situations, from Earthquake/Emergency Kits, to First Aid, to Assistive Living Products, to Sport products- definitely check them out if you are in need of any supplies!

 

FRIO: http://www.readycareco.com/splashpage_frio.htm

 

And check out the reviews, they are at the bottom of the page listed above, on the right hand side, on a dark navy panel (called Here’s what others say about FRIO).

 

Also, check out the blog The Active Diabetic for ideas on backpacking and hiking with T1! She’s great!

 

http://theactivediabetic.wordpress.com/2012/04/24/backpacking-with-type-1-diabetes/

 

 

Doctoring Life… Finding the Right Endo Fit

In knowing and talking to many friends and acquaintances with T1 (thanks to T1 camp and a small hometown), and to several endocrinologists, I have found that one’s experience with insulin and meds can be drastically dependent upon one’s endocrinologist- translation, if you like and get along with your endo, you’ll generally seek and take their advice when having struggles with blood sugars, injection sites, strategy to lower A1C, etc. I was lucky to get along with the only endocrinologist within a 6-hour radius who treated my brother (who also has T1) and I through our youth.

Transitioning to a bigger city on the east coast for college, I needed a new doctor, who I initially (and naively) assumed would simply serve as a ‘script provider (i.e. would write a prescription every year to get me insulin). As school was busy, I often didn’t maintain 3-month checkups, and if I ever got into a jam with the prescriptions running out or expiring, I would make a fast appointment with a physicians assistant, who generally could see me within a week (versus a month or two wait to see the MD). And while this worked, it probably wasn’t the best strategy – through other medical issues, I have found that building a relationship with your endocrinologist is important. But, sometimes this can be difficult. I saw two endocrinologists while in Baltimore: one I got along with very well, for he viewed treatment for diabetes in a similar manner as I did: that you treat in a way that is livable, although often not perfect. The other doctor was much more stringent and rigid in how I should be controlling my disease, the frequency with which I should be testing, and how I should be treating highs and lows. I was in decent control (my A1C at that time was around a 7.2) had a hard time imagining drastically changing my daily life to fit her proposed treatment schedule just to lower that number by .3- we fundamentally did not get along, which became obvious and awkward during my visit. Through this experience, I found that sometimes the better medical advice comes from the less intuitive resource, so I went back to the lesser known hospital that housed the endocrinologist who not only understood the way I treated my diabetes, but also who gave me advice and tips that enabled me to live better with my disease (my next A1C with him was a 6.7)! And based on his view of enabling his patients to live as fully as possible while also controlling their T1, he not only supported my decision to pursue 9 months in Kenya, but he encouraged me to go forward with confidence! This support became very important when I discussed my plans with my family, as their first question was about if it was possible for me to move for 9 months to a non-western, low-income country—and I was able to answer truthfully that it was, and that my doctor supported the decision! So my advice for you is to find an endocrinologist who you click with, and who you will approach when you need advice and guidance, both for the science behind the medicine, and for how to implement the science while living the life you want to live!!

 

Tip: If moving, ask around about new possible doctors. Start with your current doc, maybe they will be willing to advise you from afar, but also have a colleague in your new city who can help you out! If you are starting college, try asking the school’s medical office. Reach out to your local ADA office! Google docs and see if there are any reviews. If you become part of a T1 group, or know/meet any other T1s in your new town or city, ask for their opinion! The more information you have, the better you can choose. And, if you have a meeting with a doctor, and absolutely cannot get along with them/don’t respect their opinion, then try another! You shouldn’t pay for advice you know you won’t follow. So find an MD who’s advice you can take, and who will give you tips that you will be able to implement in your daily life to live as fully and be as healthy as possible!

Calcualted travel!

I recently went backpacking for a few weeks in Europe, which was my first experience abroad without my family! It was a great adventure, seeing new cities, trying new food, drinking delicious wine and beer!

One of the bigger challenges was trying to figure out how much supplies I should bring, as space and weight are big factors when backpacking. In order to not have any problems, I decided to pack 1.5x the amount of supplies I would need if I were using it as prescribed. I am a “pumper” (I used the Minimed Paradigm) – for those of you who have the smaller cartridge (I believe it is 180 units), it is easier to change the cartridge less often, so if you have an update coming soon, think about getting the bigger 300 unit size! For pump sites, 24 days = 8 pump sites (24 days/ 3 days per site). So, I took 12 pump site insertion packages (remember, I took 1.5 times the amount I would need if following my prescription). I go through around 70 unites of insulin a day, so normally, each pump reservoir lasts around 4-5 days (300 unites / 70 unites per day). However, as the amount of exercise and the types of food I would eat were going to be different, I calculated the amount of reservoirs if I was using 100 unites a day, meaning that each reservoir would last me 3 days. 24 days of travel = 8 reservoirs, for a total of 12 reservoirs. I also brought 3 bags of needles (10 needles/bag, total of 30 needles) in case any pump malfunctions occurred. For insulin, I brought 1 bottle of Lantus (for backup if my pump failed or was stolen etc.), and 4 bottles of Novolog; I calculated that I would need around 2.5 bottles (so 3 bottles) if I was using 100 unites a day (1000 units / 100 units a day), and an extra in case I dropped a bottle. I also brought some alcohol swabs (backpacking and travel in general is usually dirty), an emergency glucagon kit, and glucose gel. The amount of supplies made me feel very comfortable as I went off, BUT IT WAS MORE THAN ENOUGH! I went through 5 pump sites, 4 reservoirs, 2 bottles of Novolog, and 10 needles – this is because I packed for the “recommended” dosing – not the dosing I generally use at home.This is because I have found that my pump sites generally are functional for 5-6 days (sometimes longer, but I don’t like to risk going beyond 6 days). I typically also refill my reservoirs 1-2 times before throwing them out (meaning that a reservoir can be used up to 3 times before I change to an unopened one).  For the next trip, I will most likely pack a little more conservatively, and factor in the duration for actual use versus prescribed use, while also considering external factors such as heat and food, which will effect the amount of insulin and the length of time I can use a site!

Tip: When packing, always pack a few extra!! Yes, space is limited, but you never know when you’re going to rip out a site, drop an open needle on the ground, or even shatter a bottle of insulin! However, be realistic about how much supplies you will most likely use- do you use your pump sites for 4-5 days? Maybe you are okay refilling a reservoir 3 or 4 times. Being realistic will not only help the space issue, but you won’t be subjecting extra supplies that could be safely stored at home to the dirt/crushing that happens in a pack or suitcase!

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!

Johns Hopkins University Research Journal…Read My Work!

an article I wrote for the Johns Hopkins Undergraduate Public Research Journal (Vol. 10 Spring 2013) entitled “Type 1 Diabetes: Affect, Adolescence, and Empathy.” Check it out on Page 67!

Epidemic Proportions Spring 2013

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…