Tag Archives: healthy living

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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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!

What the Gluten?!

The interview with Eugenie was really awesome to share with everyone—I was particularly excited because it gave me some insight into what it is to travel in another country with diabetes supplies, considerations to think about, and it supported some things I’ve already done to prepare, validating the amount of effort I’ve spent (which feels great!). There was an additional point of interest that I had not expected: Eugenie’s comments on trying a diet that avoided gluten. I was intrigued, and reached out to some of my gluten free (GF) friends, to hear about their experiences and insights! And here is what I found!

The people:

Sara: 18, started GF in 2004 after being diagnosed with T1 and Celiac

Lydia: 22, started GF August of 2012 after suffering from small, but not insignificant, health problems (tiredness, frequent stomachaches, bloating, mysterious aches and pains)

Jen: 20, started GF fall of 2007 after being diagnose with Celiac disease

Summer: 19, started GF summer of 2012 after being diagnosed with Crohn’s disease (GF diets help reduce symptoms)

Question 1: Tell me about your overall experience with a GF diet?

Sara: When I first started a GF diet (9 years ago), it was very difficult, as the GF industry had not become popular, so we had to order food from Canada that tasted like Styrofoam. I was forced to mainly eat vegetables.

Jen: Within the past 3 years, the GF industry has exploded. Now many restaurants are aware and even popular brands like General Mills and Betty Crocker provide options for GF.

Lydia: Now, it’s actually not that hard. I’m a GF vegetarian, so you’d think my options would be limited… but, I can substitute GF pasta and bread products when I want them. I’ve gotten into baking and even made my own GF pasta and gnocchi!

Question 2: What physical effects do you experience with a GF diet?

Sara: At first, I had a really hard time staying completely away from gluten… sometimes it was a matter of not being able to resist Oreos, and sometimes I wasn’t aware there was gluten in so many things, like red food coloring. At first, I would barely notice the difference, so I ended up eating a lot of gluten. After about a month of eating gluten, I ended up in the hospital with some serious side effects of not being on a GF diet. The result has been that I am now much more sensitive, so I have to be very strict—any contamination can send me into a puking fit and eventually to the hospital with DKA (diabetes ketoacidosis).

Jen: Similarly, removing gluten from my body didn’t change much beyond not getting sick anymore.

Lydia: When I started, I didn’t know what would happen to my body on a GF diet, but I have found that I feel much more rested, and my energy is way up.

Summer: I believe GF diet is a main factor in what keeps most of my Crohn’s symptoms away. Some added benefits of a GF diet include: stopping having skin breakouts, the puffiness under my eyes is greatly reduced, I have more energy, and I feel “light”… not like a weight thing, but more of a feeling.

Question 3: What do you classify as gluten—what do you avoid?

Summer: All grains in general, so soy, wheat, rice, corn, and oats.

Lydia: Wheat, barely, rye, malt. Although barley malt hasn’t made me sick… I wonder if I’m only allergic to wheat and not barley and rye.

Sara: I stay away from anything risky because my sensitivity to gluten is so high. I absolutely cannot eat wheat, rye, barley or oats. What makes it difficult is that gluten can be in so many things: red food coloring, a lot of preservatives in drinks and candies. I also avoid anything I cannot pronounce on the first try. Also, I recommend to avoid dairy if you are going to slip up a bit and eat gluten—dairy makes the reaction way worse.

Jen: I classify gluten as wheat, rye, barley and malt. I also always avoid all types and never make exceptions. I also consider oats as gluten, as they are often farmed in the same field as wheat. But, I will eat specially grown gluten-free oats.

Question 4: What is your perception of GF diets for the masses (like the Atkins diet)?

Sara: I love that people are so interested in GF! The more people who are interested, the more opportunities I get to eat (as more companies produce better and a wider range of products)!! It’s a really healthy diet and I have heard from a large number of people that they just feel better after not eating gluten anymore, regardless if they didn’t feel like anything was wrong in the first place.

Jen: I have never been a fan of fad diets, so I don’t believe there is one type of food or one solution to a healthy diet. As in anything, I believe that gluten is appropriate in moderation, and whole grain wheat provides important diversity in nutrition.

Lydia: Do a GF diet it if you feel better! If you don’t have health problems related to gluten, you are just restricting yourself pointlessly. Avoiding gluten isn’t necessarily healthier. You have to see what personally benefits you. No harm done in trial and error!

Summer: I think everyone has his or her degree of tolerance for gluten. So if a person is even a little bit intolerant, they might benefit, but if they are perfectly tolerant, there is no reason to spend the extra effort and money to go GF.

Question 5: Any other insights on certain foods/food categories and health?

Sara: There are a lot of great bakeries that make GF options, and there simply isn’t anything better than being able to walk into a place expecting temptation and tourture and walking out with a cupcake that won’t make you sick.

Lydia: The best gluten free breads are Schar, Udi’s and Kinnickinick.

Jen: One time I went two weeks trying a pseudo-raw diet without eating processed or packaged food. I really felt a lot better, but it was too challenging. Since I don’t leave much time for cooking from scratch, I only was eating vegetables and rice and missed things like pasta, granola and yogurt in my diet.

A few weeks ago, the FDA released an announcement that it has (finally) created a gluten free label that will be regulated and enforced: products sporting this label must have no more than 20 parts per million of gluten in the product. (http://www.npr.org/templates/story/story.php?storyId=209265283) What’s your take on this ruling?

Summer: I’m for the new regulations on the labels. 20 parts per million is a very small amount… it would be like adding an 8th a teaspoon of flour to a loaf of gluten-free bread. I don’t think its likely gluten free manufactures would bother to do that, so I think the FDA has set a pretty high standard. Even if they were to add it, the gluten would be so saturated within the gluten free product itself it likely wouldn’t cause much harm. I would use the analogy that this is similar to the 99.9% of bacteria that anti-bacterial soap eliminates…that other .1% probably won’t get you sick.

Lydia: 20 parts per million is small enough for me. I am able to get away with eating non-GF labeled products that “may contain wheat”; they usually don’t make me ill. So, yes, I will eat things with a GF label!

Jen: I would ideally like to see it down to 10 or 5, but I understand testing for those amounts can be much more expensive.  As a celiac, every molecule of gluten I digest contributes to colon damage. I generally will eat products with the 20ppm labeling without any physical response, but to me it is not 100% “safe”.

A big thanks to you ladies for sharing your experiences and insight!

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!

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!