Remember earlier this year when I interviewed Nathan Shackelford? His blog is still one of my faves. Well, he said I might like to check out his sister’s blog. Ariana Mullins has type 1 diabetes like her brother, but doesn’t blog about it. Instead she blogs about her family’s adventures living in Europe. She is a fantastic writer (she just wrote my favorite blog post ever) and takes some amazing pictures. Do check out her blog, it’s a beautiful reminder of what living a healthy, fabulous, and grateful life is all about.
I asked her some questions about how she manages her diabetes and what it was like having diabetes and living in Europe (and other places):
How long have you had type 1 diabetes?
I was diagnosed 21 years ago, at age 12. By the way, I was diagnosed by my dad and his glucometer, and never even saw a doctor about my diabetes until I was 14. My dad and older bother are both type 1 diabetics, and we were living in a rural area in the Philippines. My dad helped me work out my insulin dosages, taught me to estimate carb counts, etc. My brother sent me my first insulin wallet, (which I used for the next 15 years!) I decided right away that I wanted to be healthier than any non-diabetic, and took everything related to self-care pretty seriously. Six months after diagnosis, I left for boarding school, on another island– so I was really on my own! When I did finally see an endocrinologist, he was amazed that I had an A1c of 5.6!
What’s your motto in life?
“Never make decisions based on fear.” I think I have lived this philosophy pretty well with my diabetes. I haven’t let my diagnosis keep me from doing anything I really wanted to do, with the exception of snorkeling and scuba diving. I used to snorkel all the time as a kid, but once I became diabetic, the idea of being in the middle of the ocean with low blood sugar was just too hard to justify! Other than that, I have not let my diagnosis keep me from living as fully as possible, trying as many new experiences as I can.
What is your diet like and why do you eat that way?
I eat low carb, and follow more of a paleo-type of approach. I love food, and love to cook. We originally started eating a grain-free diet because of food allergies that my daughter and husband have, but I quickly realized that it was great for all of us, and simplified my life a lot, since I was already not eating much starch anyway. We eat plenty of meat and eggs, lots of vegetables, coconut products, and plenty of fat. If we’ve been to France recently, then there’s plenty of great cheese on the table, as well!
I don’t crave a lot of sweets, but I do make room in my day for dark chocolate (usually 80%) and am happy to try out grain-free dessert recipes for my family, although I don’t usually eatmuch of those treats. We always eat very well, though, with an emphasis on great quality items. Who wouldn’t be happy to have a nice steak with herbed butter, grilled asparagus, olives, and a fresh, herbal salad for dinner? Add a glass of red wine and some chocolate for dessert, and I feel like one lucky lady! I never feel deprived, and absolutely love eating all of the great food at our table.
I think that one of the most positive, proactive things a person (regardless of health concerns) can do is to look at their food supply– what are we really eating, and where did it come from? How was it produced? Taking an interest in our sustenance is extremely rewarding, and eating well does not have to be expensive or difficult. It’s true that eating quality food is a real priority for me, both in terms of budget and effort, but I don’t spend more than the average person (in fact, probably less!) and we feel incredibly wealthy when we sit down to eat together.
(Sysy speaking-she isn’t kidding. Below is her cooking. It’s what I want for dinner.)
What in your opinion, is the toughest thing about living with type 1 diabetes?
I think the hardest part is just that it’s always there, on my mind, and impacting the smallest decisions in my day. What I eat, when I eat. The type of exercise I do, when, how long, etc. Although diabetes doesn’t limit me much, it impacts everything. When I leave the house, I have to think about whether I have something on hand in case of hypoglycemia, and whether it’s enough, or where I could get more, if needed. And I am always counting… The insulin I took, what I ate, when, what I will eat, what my last number was, what happened yesterday or the day before, trying to anticipate what my blood sugar might do. There are so many variables– how much sleep I got, the amount of stress I am under, how old my insulin is, which ratio of insulin in my system is basal, how long a bolus dose will be working… The list of factors is endless, and it can be overwhelming at times, when there is a problematic dynamic happening that I need to figure out. I can do everything “right” and still not get the numbers I am shooting for. Diabetes takes a ton of mental energy and patience, and when other things in my life are a little wild, it can feel like too much!
Do you ever fear your daughter will develop it?
Yes, I do fear that she might. Genetically, the chances are not too bad, but there is always that possibility. Honestly, this is another reason that we eat the way we do– I want to give her the best health foundation that I can. I do my best without being obsessive, and the rest is really not up to me. It’s not something I think about every day, though, and it really wouldn’t be the end of the world if she did develop diabetes.
Is it challenging living abroad with type 1 diabetes? What places have been the most challenging/least challenging?
I don’t find living abroad with this diagnosis to be much more challenging than living in the US. In Germany, I did have to do more work to find a doctor that spoke English. My diabetes is the same here as it would be anywhere else in the world. I think it would be more challenging living in a really hot country, where I had to think all of the time about keeping my insulin cold. Or a place that I couldn’t find supplies so easily. But so far, it’s not hard at all. We travel quite a bit, and that of course presents some challenges, but usually nothing too serious. And of course, the travel is so worth it!
If you can’t find glucose tablets, what do you use for lows?
Fruit– I often carry an apple in my purse. I can’t find Smarties candy here, which is my #1 choice. Fruit leathers are pretty good, though, and if I am out and about, then getting a little bit of fruit juice is fast and effective.
How many times a day do you check your blood sugars?
This actually varies. Since I have some limitations of test strip supply, I use a “save and splurge” sort of strategy. I might use tons of strips for a few days, while I am figuring out a dynamic or blood sugar problem. Once I have logged all of that information and have something to work with, I will make changes, and then check less obsessively, to see how things are going. On average, though, I’d say I check 5-7 times per day.
Why did you decide to move abroad? Were you worried about how you would manage with your diabetes?
We decided to move overseas because we wanted to live in Europe. It’s really that simple! When we found out that my husband could get a good job working for the US government overseas, we jumped at the opportunity. We lived in Germany for a while, and now we have been in England for over a year.
To be honest, my diabetes was not even a factor I considered when making the decision to move. I think this makes sense, if you take into account my first years as a diabetic– completely self-managing in a foreign country. I had not gotten exceptional care from doctors in the US, and the cost of insurance, co-pays and things like that never made me feel like I was particularly lucky to be a diabetic in my home country. Once, I went to see a really great endo in Portland, and they booked my appointment and said they would accept my insurance. But it turned out that they wouldn’t– I found this out after the doctor had run a whole bunch of labs (which just revealed that I was super healthy!) and we ran up a bill of $1,000 for that one visit, during a time of financial strain! I could not even afford a follow up, which would have been the more valuable visit. See what I mean? There are great resources for diabetics, but not necessarily available to the people who need them.
So, here in England, the way they manage diabetes is not that great, either. But they do cover prescriptions and supplies 100%! Honestly, it is the patient that manages their diabetes, not the doctor. So I would rather be empowered by having the supplies and medications I need, than lots of face time with doctors and nurses. That said, there is a diabetes clinic nearby, and I can call one of the nurses, send them my logs, etc., whenever I want, for help. The technology is a bit behind, though. Not many diabetics use pumps here, since the funding is limited, and CGM supplies are not covered. I am currently on a waiting list for a pump class, and then subsequently getting set up with a pump. I don’t know how long it will be, and it’s not something I am expecting next week, I’m just waiting to see how it plays out. Interestingly, you have to sort of prove your worthiness to get a pump– a reasonable A1c, and adeptness at carb counting and adjusting insulin. I know these are kind of basic in the US, but I think it’s more rare to find PWDs who are very engaged in their own management. This observation is simply based on the way things are handled– I haven’t met another PWD here yet!
What advice do you have for someone with type 1 who is considering moving to England (where you live now)?
I would recommend that they work to get their diabetes well-managed, through whatever resources they have available to them at home first. It may vary depending on where in England they land, but I don’t think the management resources here are great. They would need to be pretty competent with trouble-shooting and investigating issues on their own. Sure, there are doctors and nurses here to help, but it could take a while to get an appointment at a diabetes clinic, or to find the exact type of help they need. For example, if I had been working with a great endo before I moved here, I would have tried to set up a way to stay in contact with them, and pay for consults over the phone or via email. On the other hand, if they qualify for NHS coverage, then they are going to love getting all their supplies for free!
The thing that most positively impacts your diabetes management?
A curiosity about the human body, and health in general. Being diagnosed at a young age definitely sparked my life-long interest in health and nutrition. Our bodies are really amazing. They are always working hard to do their best, and deserve our best in return– the best nutrition we can find, plenty of rest, play, etc. It makes me sad when I see people feeling angry with their bodies, or fighting them– the body is always working really hard, and never tries to sabotage us! The discomforts or troubling symptoms I may have are just forms of communication. If I pay attention and respond, I can take great care of myself! Don’t let the challenges of living with diabetes overshadow all of the really wonderful things that we are capable of through such exquisitely designed structures!
Where in the world would Carmen Sandiego be if she had type 1 diabetes?
Probably in Germany! The best diabetes technology always seems to be coming from there, and they also have a great healthcare system that allows diabetics to get the care that they need, with minimal personal expense.
Any last words?
I don’t usually write about diabetes, so this was a positive exercise for me, in terms of articulating my experience with this condition. Diabetes is actually not a big part of my identity. I learned from an early age that I didn’t like being thought of as “that diabetic girl.” People either felt sorry for me, or felt like they needed to get involved, or (worse yet!) tell me their best diabetes-related horror story. No thanks! Life is so interesting, and there is so much out there to experience, so I do my best to strike the balance between taking good care of myself, and just living and enjoying everything else around me.
With her husband, Jeff.
Thank you for letting me share a bit about my experiences, Sysy!
Anytime! Thanks for being so candid and helping prove that people with diabetes can do anything.