Tag Archives: interview with type 1 diabetic

Interview with Type 1 Living Abroad, Ariana Mullins

 

Remember earlier this year when I interviewed Nathan ShackelfordHis 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.

Ariana and her brother, Nathan:IMG_1246

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.)

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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.

With her adorable daughter, Amelia:IMG_5617

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!

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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.

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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.

Interview with Nathan Shackelford about Eating Low Carb

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I like interviewing different people who strive for glucose numbers as close to normal as possible because if that’s what non-diabetics have then that’s what I feel I should work towards (taking in consideration all kinds of factors, of course).  I’m not saying it’s the right decision for everyone, I’m just in the process of figuring out the best diet for me and I know others are on the same wavelength.  I think it’s important that we keep dialogue open about this and by talking with those who feel they’ve made a great decision for themselves we can keep the learning and exchange alive.

Nathan Shackelford is an art teacher, husband, father of three kids, and has had type 1 diabetes for about 26 years.  He also writes a great diabetes blog you can follow here.  Nathan has been eating low carb for some time and I wanted to hear his perspective about it and see what we could learn.

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Nathan, how long have you had type 1 diabetes?

I have been Type 1 since the summer of 1985, so it’s been about 26 years.

And how long have you been eating low carb?

I was motivated to qualify for life insurance in 2003, and going low-carb was one of the things that helped me to get my A1C under 7 so that I could be considered “healthy”. It worked.  Besides better A1Cs I’ve also benefitted from feeling better and getting healthier overall. It’s surprising how many aspects of your life can be affected by poor blood sugar control.

How low carb do you go? About how many grams of carbs do you take in a day?

I go pretty low. My only carbs are usually things like almonds and avocados, and green vegetables. I’d guess that I consume 20-30 grams of carb a day. At this level, carb counting doesn’t have as much of an impact. I find that meals with more protein are the ones that require the most insulin.

Why do you think low carb is the right way to go for you, personally?

I’ve done it both ways, and haven’t been able to get good results with even moderate carb levels. I’ve experimented to see if I can include more carbs and use more insulin and the results always have me back with higher A1Cs. In the day to day, I don’t really see major differences, but the average control over time shows that it doesn’t work as well. For instance, this past summer I took a trip to Europe with a student travel program. I didn’t want to work too hard at getting special food items for myself at hotels with the language barrier, etc. so I ate some of the starchy carbs that came my way and used more insulin. When I got back from my trip I realized that my glucose control was off for most of my trip, and I had picked up a few extra pounds as well. My A1C for summer was up significantly.

What’s a typical meal look like?

I usually have eggs for breakfast, sometimes on top of a pile of arugula. My favorite lunches are tuna salad or chicken salad with greens. Dinners are usually chicken, beef or fish with broccoli or cauliflower and salad. We do a lot of ethnic foods at home, so those look pretty different.

Why do you think so many people with type 1 diabetes choose not to try going low carb?

I think many of us think of eating “normally” as the measure for living a normal life with diabetes. I think if we start defining living normally as having normal blood sugars, we will make changes to make it happen. Carbs are kind of addictive, and most people don’t realize that if you can go for 4-7 days without them, you can leave them behind.

Some people forget to point out that for people who eat low carb, many eat loads of vegetables, which technically, are high in carbohydrate. Are you one of these people who eats a lot of low impact veggies?

My diet doesn’t look vegetarian at all. The protein and fat are the main source of energy and the vegetables are there because I love them. The ones I eat, though, are the types that have small impacts on my glucose levels. If I eat 2 cups of steamed broccoli it would have a pretty noticeable impact on my blood sugars just by quantity in my stomach. If I keep it at ½- 1 cup, it’s fine.

What do you think about the paleo or primal diet?

The Paleo/Primal diets have resonated with me because they are fantastic for diabetics. My sister is also a Type 1 diabetic and she and her family eat Paleo and it has solved many health issues for all of them. I have read the Paleo and Primal literature and think it’s a great thing for people to pursue for better health. I’m already living gluten-free because I don’t consume any grains. I still use cream in my coffee, but that’s the only dairy I typically use regularly. I don’t have any issues with dairy, so I’m not interested in eliminating it. I used to brew beer at home regularly, and that was one place where I was consuming gluten. I found out, almost by accident, that my body responds better to cider than beer. So, I’ve been making my own hard cider at home and haven’t brewed beer in several months.

Does your family eat like you?

My way of eating has impacted the family to some degree. We have less junk food around the house and our typical family meals are centered around protein. My son and my youngest daughter are starting to naturally eat the way that I do. It just appeals to them, and they are thriving. We still have potatoes or tortillas on the table with some meals, but they are not the focus of the meal. I think we have all become healthier since I started pursuing my health goals. People keep asking my wife what she’s doing to get so slim.

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Where would Carmen San Diego be if she had diabetes?

I don’t know her very well, but, I think she’d be at her local farmer’s market geeking out on all the fabulous produce.

What’s the hardest thing about eating low carb?

I’m a pretty easy-going person, so I don’t like anyone to feel obligated to do anything special for me. I try not to put any special attention on what I do or don’t eat, but sometimes you realize that there’s not much in a meal that you can go after… like a spaghetti dinner with garlic bread. I can’t even just eat a polite portion of that. It’s not that I wouldn’t love that stuff… I guess trying to balance between “not being a pain in the neck” with taking the impact of daily food seriously.

You seem to be really optimistic about life with type 1 diabetes. Why is that and have you always been this way?

I’ve always been pretty upbeat about diabetes, despite the seriousness of the disease. My dad is a Type 1 diabetic and he always has had a good attitude about. He lives a rather normal life and views his glucose control as a puzzle to sort out, rather than a drag. You’ll often find him going for an 30 minute walk to get glucose levels back to normal. I find that curiosity about it keeps me motivated to know as much as I can and master it. Instead of accepting the idea that it’s going to derail my life and control it, I plan to be in control. Attitude has a lot to do with that, and I plan to win.

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I really appreciate hearing how someone fits this way of eating into their life and the reasons behind doing so.  I think the reasons for finding foods that lower insulin needs are compelling enough to consider very seriously.  Thanks so much for answering those questions, Nathan!

Remember to check out his blog: Edibles…(the diabetic edition)

Interview with a Type 1 Artist, Haidee Merritt

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Haidee Merritt has had type 1 diabetes since age 2 in the early 1970’s.  You might have caught her art on DiabetesMine where she’s made us chuckle, giggle, and cackle every Sunday for the past few months.  She also uses her aesthetic talents as a private gardener where earth worms get tied into cute little bows and pests are hung upside down by their tiny feet.  She can also take your old lamp and breathe gorgeous new life into it.  The multi-talented Haidee has written a book which I imagine being a great conversation piece on a coffee table.  That book got a great review the other day by the one and only Riva Greenberg.  Haidee has quite the sense of humor, so I began by asking her a few questions to kick us off in fun way:

Sysy:  What is the toughest part of diabetes, in your opinion?

Haidee:  The toughest part is financial for me. It doesn’t have to be, I realize, but I’ll be damned if I’ll accept the expense of this disease without making a stink. You know when the worst thing about a chronic illness is money that there’s something seriously wrong.

Sysy:  What is your favorite color?

Haidee:  Favorite color is teal-sky-aquamarine-cyan-pacific blue

Sysy:  Where do you get your sense of humor?

Haidee: I read Mad magazine on long car-trips as a child; when I couldn’t sleep I read Shel Silverstein; I collected Wacky Packs; I’m twisted and bitter and obscene which I think is hilarious – finding humor in yourself is where it all starts.

Sysy:  Where in the world would Carmen Sandiego be if she had type 1 diabetes?

Haidee:  The only answer to that is exactly where she is now. Didn’t you know Carmen Sandiego IS a diabetic?

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Then I had my sister Ana, who is a type 1 at James Madison University studying studio art, to take over the interview:

Ana:  Are you self-employed? I know both diabetes and art can require lots of supplies and constant restocking, how do you handle/balance the material aspects of diabetes and art? Did you ever struggle financially as an artist with Type 1?  Have you ever chosen art supplies or working on a piece over diabetes supplies or taking care of your health?

Haidee:  Yes, constantly. Not only art supplies but shoes and bags and travel. I cannot fathom life without making choices between my wants and my health needs. I also don’t do this decision-making without resistance. I want what every woman wants – maybe not literally – and the constant drain from the needs/demands of diabetes makes me angry (i.e. bitter). I’m as materialistic as the next person, admittedly. I want the sweat and time I put into the labor of making a living to advance my living situation, allow me to visit friends in different places, buy the art supplies I want to help in my self-expression, eat things I crave, give gifts to the people I love, save for a retirement that I hope to have. I don’t quite understand how a diagnosis of a chronic illness suddenly means that I’m financially punished for the rest of my days, I really don’t. I did a cartoon once that says, If I ruled the world Diabetics would get presents everyday.

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I can only speak for myself here, but coming from a capitalistic society makes me feel there’s an injustice here, that my work – for myself and others – should somehow give me a sense of security. Plus, I have an (unhealthy?) sense of entitlement. I feel like I deserve these opportunities. And I’m not saying as a gift; it’s just that it’s a challenge to maintain a high level of enthusiasm when you’re only making-do.

Ana:  You describe your humor as “dark humor” and several of your cartoons seem more pessimistic than optimistic, do you find that this kind of perspective helps you deal with diabetes the most effectively (finding humor in the realities of a chronic disease)?

Haidee:  Yes, I think it does. I was a very rebellious and unhappy young diabetic. I went out of my way to cause harm to myself and my body. It was passive suicide for the 20 or 25 years in the middle of my life. There was a very sick and stubborn part of me that wanted a hand in my own future, even if that involvement meant complications or death. I used my anger (?) to exercise what control I had: to me there was more certainty in the damage that I could cause than the hope of coming out clean when rolling the dice. Pretty f**ked up. Anyway, that’s a tiny glimpse into how my attitude started to develop: I was challenging the disease. To say the the complications I’ve had to deal with are the punishment for my earlier actions doesn’t quite describe it accurately. I just tend to embrace the fear and confront the situation now because I’m the one who threw gas on the fire. As I’ve said before, I find it empowering to make fun of the disease and situation. I don’t feel that I’m tempting fate, which I could understand many diabetics might, because I’m pretty much sure I’m f**ked either way.

Ana:  Have you found that the general public reacts well or relates to your depiction of life with diabetes?

Haidee:  You know, I have. And I’m not afraid of some criticism. Jesus, I criticize the book all the time. It is a compilation of images I started during eye surgeries in my early 20s. The simplistic style – and even simplistic thoughts – are elementary when compared with my current work. Anyway, that’s ME criticizing the old stuff. As far as the general public goes, there’s been no throwing of rotten fruit and vegetable or anything like that. Of course it’s entirely possible that there’s an Anti-Haidee Movement somewhere that I just don’t know about. I’m happily ignorant of so many things. The most flattering and uplifting feedback has been from family members and friends of diabetics who have said they had no idea that diabetes was anything more than watching what you ate or taking insulin. They learned from my work. This unexpected purpose has really effected how I’ve grown and shaped myself as an artist, especially a public artist.

Ana:  How do you come up with ideas for your drawings?

Haidee:  Literally, most of my ideas sort of bloom in my head when I’m working on other cartoons. Something about the meditation of drawing releases my mind, allows it to wander away. I have a pad of paper by me in almost every room in the house where I might perch; when thought bubbles surface it’s only a matter of time before they pop and drift away. Some of the ideas are from my past, some my present. Like everyone who creates, I draw on my life experience and emotion, images I see in my mind that I want to capture in pen and ink; I’m a big fan of the Wouldn’t-it-be-funny-if and Worst-case scenarios.

Ana:  Are there any other themes in your work besides diabetes?

Haidee:  Tons. This diabetes thing just insisted it get some attention from me in the last 5 or 6 years. Insects have been a very weighty theme in my work. I like very detailed patterns and hair-thin lines. Believe it or not, I like color. Other than my cartoons and diabetes illustrations my house if full of the craziest mishmash of styles and brightly colored things. I also have that lamp business? I rewire and redesign lamps that I find at thrift stores and landfills. I like to make beautiful things from what others disregard. I like when they want their junk back because now they see it – or they see others seeing it – in a different light (no pun intended).

Ana:  Are you a full-time artist? Do diabetes-related issues ever interfere with your work?

Haidee:  I am a full time artist but that doesn’t mean I’m not also a full-time gardener or full-time diabetic. I have a gardening business for 8 months out of the year here on the Seacoast of New Hampshire. As a private gardener I maintain and prepare annual and perennial gardens. Like the other forms of art in my life I’m most draw to and concerned with the details. In other words, I’m not a landscaper. As far as other issues go, yes. My eye surgeries left me seeing double for the last 15 years and I’m colorblind to a certain degree. I have no depth-perception so I often appear drunk. That’s why my hair has been colored to the ditzy blond color it is now: I don’t do anything halfway. I can’t drive at night. I can’t feel my hands half the time. There’re quite a lot of challenges that I deal with actually; it’s nice to be asked about them in an interview. Like most diabetic issues, things look very normal on the outside. There’s so much energy expended to make myself just look normal, so much going on below the surface, that I’m grateful for an opportunities like this one to let people get to know me a little better.

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Thanks so much, Haidee!  We really appreciate your raw honesty and we look forward to following your work for many years to come.  You can check out her website here.

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