The new book is out just in time for the holidays! Whether you are a vegan, a low carb lover or someone who just wants to eat the standard American diet, you’re voice is represented by one of the many women I interviewed in this book. I thought I had a pretty good handle on eating right before I started writing this book, but I discovered that I was really misinformed. Filled with tips from experts and personal stories from women living with diabetes (including Ann Rosenquist Fee, Ginger Vieira, Sysy Morales, Brandy Barnes and more…) I hope that this book will answer your questions about eating right.
ANN:Well guess what.AMY:What? I get the feeling from the above photo whatever you are going to say is not going to be good. I’m ready. Let me hear it.ANN: Worst A1C ever. After three months on the pod I went from 6.9 to 7.6. Up until that point, 6.9 had been my worst in 18 years, which is what sent me to the pod in the first place, so I’d have tighter control. A 7.6 is not tighter control. A 7.6 is…well, see above. I’m so mad.
AMY: First off, I actually can’t believe that 6.9 was your worst ever in 18 years…wow. I consider 6.9 pretty good and in fact my last a1c was a 6.7 after 3 really careful months on the pod. And when I say careful I mean I was really paying attention and making the best use of the pod tools such as: looking at blood glucose history graphs and making adjustments. I’d never really messed with much of that fine tuning before. So it was a big disappointment to me to see that after all that hard work, I’d only gone from a 6.9 to a 6.7 because frankly, there’s no way I could do any better.
ANN: Wow. I want your 6.9.
But I know what you mean about fine-tuning to exhaustion and then not having much to show for it. That’s so hard. That said, I admit that wasn’t my case this time around. I took a little vacation from diligence because I figured the pod would do it for me. It asks me when I’m going to eat! Which is great but I guess it doesn’t take the place of an actual brain.
A few days after I saw the 7.6, I went to a park and sat in the grass for a couple hours and finally, for the first time, did the fine tuning I should have done in the first place. I set four different basal rates throughout the day based on a 60-day graph of my readings. Last week I sent the numbers to my sweetheart diabetes educator. She sent back this:
I don’t care that she gets paid to be encouraging. Right now, it helps.
But back to the times you’re awesome and then have nothing to show for it. What’s next for you? Follow my lead and take a three-month vacation from thinking?
AMY: I have to say again that your numbers are indeed awesome and I hate to admit it, but they make me jealous. I’ve been messing around with this new Glooko app, it’s an attachment that downloads your blood sugars from your meter to your iphone and allows you to enter notes etc. and email the electronic logbook to your doctor…no handwriting necessary! And, in looking at all of my numbers like this, I see a fair amount of highs, higher than yours I hate to compare, but that’s the truth.
ANN: But they’re not that awesome. The ones on the left gave me a 7.6. The ones on the right are about what I had back when I was at 6.9, which you recently beat, which is about the best I can hope for in the near future. Nothing (healthy) is going to get me lower than that for a while. I’m afraid the truth might be that my numbers were as good as possible back when I was using syringes.
If we’re not going to see fives or even low sixes from this point on, what are we doing this for? I can’t believe I’m asking you that. I should know this. I read your book.
AMY: To me, it’s not about the numbers. I’m trying hard, in my wiser years, to stress less over them. I try to look at them in a more scientific, less emotional perspective, as information instead of good and/or bad grades. This attitude doesn’t always work of course, and there are still plenty of times that I get frustrated and pissy when I see a high number, but that’s my life. What can I do?
ANN: You can draw on your pod, I guess. Hey where’s yours right now? I saw a very lovely pic of you on Facebook, and you were sleeveless. No pod in sight.
AMY: Ha! Funny you should ask…especially after your “what are we doing this for” comment! I took my pod off last week. I needed a break. I took it off after my sister’s visit. My younger sister was diagnosed with type 1 six months before me, when she was 10 and I was 14, and she has always been an old school as far as managing her diabetes. Anyway, she was here visiting with her kids and asked me about the pod (we were at my mom’s pool and wearing a bikini my pod was in plain view.) As I explained the pros and cons to her it started me thinking….what am I doing this for?
ANN: Right. Because we could just…not. Right? That’s a liberating and terrifying thought. And now I can’t stop thinking about it. I don’t mean quitting diabetes management altogether, just going back to the more comfortable technology. Relying on my own diligence and knowing it’s only going to get me so far. I can’t tell you how much I miss my syringes and my pod-less body right now.
I’m kind of afraid to ask, but how’s the break so far?
AMY: You know, up until today the break has been pretty great! A horrible stomach bug hit my family and took us down, one by one, finally hitting me on Saturday. I won’t go into details, but it wasn’t pretty, and I was nervous about managing a stomach bug without the pod (I was so sick on Saturday night I wasn’t sure I’d have the energy to get out of bed and do my nighttime shot), but I survived and my blood sugars mostly okay and its been pretty nice to take a break. I’ve enjoyed being able to pull my running shorts up as high on my waist as I like (without the pod in my way on my lower back), and being able to towel dry my entire body without having to be carefully aware of knocking the pod off my arm. I think the biggest concern for me when not wearing the pod is that I feel like I’m not taking advantage of all the tools out there for good management….does that make sense? Like I’m behind the times, living in the dark ages of diabetes care and that I’m missing something…..
ANN: As for the concern, I know, that’s the edge I’m on right now too. If the numbers don’t bear out, how great is the tool? And how much of our dilemma is really just due to good marketing? Is this really a better tool for us, or is it just good for the diabetics who aren’t very attentive on their own?
Hey how long are you thinking your break will last? Because I’ve been thinking, I’ll give the pod one more A1C and if the results aren’t dramatically better, I think I’m calling it quits for now.
AMY: I think you are right on when you talk about marketing. And I don’t like to think that I am being manipulated or influenced by marketing. I think for me too, it’s always been about joining the crowd, or about not wanting to be the only one on the other side of the fence. I don’t like to admit that, I want to believe I have more confidence than that, but it’s always been true. I like to blend in with the crowd so I can quietly observe the scene. And if I’m the only one left doing shots (not really of course), where does that leave me?
My logical mind knows I need to do what’s best for me, but doing what’s best isn’t always clear. I’m going to return to the pod today as we are headed on a family road trip from SC to Maine and I think the pod will make travel easier. We’ll be gone for nearly three weeks and when we return, maybe I will take a more extended break. Maybe we’ll be the last two pod-less women standing
Q: Where did the idea for this collaborative art project come from?
The first seed was planted last year when Jessica Apple interviewed me on A Sweet Life. After the interview, we exchanged a few e-mails about creating an art project for World Diabetes Day 2011. The timing was short, so I didn’t move ahead with anything, but I kept it in the back of my mind because I liked the idea of involving the diabetes community, and making something for WDD.
In addition to making art about diabetes, I write about it, too. I think of writing as another art medium. So I wanted to literally fuse the two together by making an art piece that involved text – and I thought that maybe I could put something together for WDD 2012. I knew right away that I wanted the art piece to be on a large scale because for such a big day, the message would have to be big. And I felt it would be more meaningful if the messages came from people all over the world, rather than just me. So there you have the Diabetes Declarations project.
Q: Can you explain the concept to me, what do you see happening with the text or “declarations” people send to you? Will you create a visual image from the text?
I know that the final art piece won’t be a busy collage of words. I want to use the declarations to create a scene or an image. I’m also planning to use other materials like paint and wrappers from discarded diabetes supplies. I have a few ideas in mind for the final image, but I don’t want to say yet because I want to be inspired by the declarations. I think once all the declarations are submitted, I’ll just know what to go ahead with. I guess it’ll be a surprise, even for me!
Diabetes is so many things. It’s hard to strip it down and declare just one thing about it. (Sorry everyone, for making you do that!) But I’m intrigued by what people come up with when they make their final declarations. I’m excited every day when I open my e-mail because there are new declarations waiting for me and each one is a surprise. Some are funny and some are serious. And some you can just tell that the person is a diva and others you can sense that the person is sad. I like the fact that everything that diabetes makes us – sad, spunky, serious, funny, etc. – it all comes through in one simple sentence.
Q: You were diagnosed when you were 12, were you creating art and/or wanting to be an artist before then? Which came first-the diabetes or the art?
I was diagnosed with diabetes when I was 12, but I didn’t think of myself as an artist at that time. I began identifying as an artist when I was in high school, at about 15. I majored in art in college, but I didn’t make “diabetes art” until my senior year of college. So I guess the two paths – diabetes and art – had been running parallel and finally collided at that point. I think it was the mixed-media class I was taking that jolted the diabetes art out of me. Thank goodness for that because my diabetes art is full of meaning and I had been searching for that.
Diabetes art is my outlet. Whenever I feel the need to express something about my diabetes, I turn to my artwork. It makes me feel better. It’s like, once it’s out of my head and transformed, I can move on.
Q: Tell me about your artwork, you paint and create mixed media pieces am I right? Can you describe your creative process for me?
When I make art that isn’t about diabetes, I usually begin with a sketch or a photo I’ve taken, and turn it into a painting. I like how paintings tell a story. My diabetes art is different. It’s darker. More raw. Diabetes is often misunderstood, so one of the themes in my work has always been tellin’ it like it is. An idea will come to me and the next step is figuring out what materials to use. For me, diabetes art is almost always mixed media. It’s as if the smooth texture of paint cannot speak for diabetes. It’s not enough. I’ll pass collage paper in the art store and it’ll remind me of the gauze-like material on my pump site, so I’ll buy it and see where it takes me. It’s this combination of traditional art materials and diabetes supplies that makes diabetes art.
Q: You are an art teacher as well, correct? How does teaching inspire or feed your work? Or does it take time away from making art?
Both. In some ways, planning a new unit feels like planning a new art project. It’s a similar creative process. Except, instead of figuring out how I’m going to do it, I have to figure out what steps my students will need to take to be successful. Student artwork is always full of surprises too. Sometimes when I’m being a perfectionist about a personal project, I’ll go to work and see something one of my students made. It’s not perfect because they are so much more forgiving than adults are! And I’ll think it’s great! It reminds me that art doesn’t have to be perfect. The flaws are what make it interesting. Teaching also inspires me because even though I’m incredibly busy during the day, I’m always in a creative environment. But you’re right, it does take time away from my own art. I guess that’s what summer’s for!
Thanks Jen for this great idea, I will comes up with a declarative sentence soon! I have to add that I think what Jen says about art is a great metaphor for diabetes= art (and diabetes) don’t have to be perfect. The flaws are what make it interesting.
How many of us women with diabetes struggle with lows in our relationships? I know I struggled with relationships in the past, and am glad that my husband is (mostly) cool, calm and collected when it comes to lows. For those who continue to struggle, here is a great Q&A with the awesome Susan Guzman from BDI (Behavioral Diabetes Management in CA) in Diabetes Self-Management magazine.
Q I have had Type 1 diabetes for many, many years, and I some- times experience severe hypoglycemia with no warning signs or symptoms—or at least none that I notice. My husband tries to be helpful, and believe me, he has often saved my life. But he never fails to scold me afterward for not recogniz- ing that my blood glucose level is getting low. These episodes are causing real discord in our marriage, and my personal confidence level is sinking lower all the time. I feel I always owe him an apology. Do you have any suggestions for what I—or we—can do to prevent this from destroying our relationship?
A Reduced hypoglycemia awareness can wreak havoc on people with diabetes and their loved ones. Not being able to predict hypoglycemia can leave ever yone involved feeling out of control, helpless, fearful, and frustrated. Those with this problem can lose both their sense of safety and their sense of trust and confidence in their own body. They may also begin to feel hopeless about their ability to prevent hypoglycemia. Many spouses describe the experience of their partner’s lows as extremely frightening and even traumatic. Most often when I hear frustration and anger from spouses about frequent hypoglycemia, it is because of their perception that there is not enough being done to prevent or avoid these episodes. As a result, a couple can start to have serious conflict around these events. It is important for you and your husband to be on the same side again, working together to fight diabetes and not each other.
Read More here.
You created, A Girl’s Guide to Diabetes several years ago. Tell me about where and why you came up with the idea for this website and how it has evolved over the years.
Many years ago I remember wanting a fun, inspiring, and encouraging book on diabetes that included topics specific to females. I never found quite what I was looking for (this was before your great book for women “The Smart Woman’s Guide to Diabetes”!) so I resolved to write the book myself. Just as I started to do that, I unexpectedly got pregnant with twins and felt consumed by the experience because of the worry and challenge of it all. Just then a colleague from work mentioned starting a blog by the same title as my book. I thought, “hey, I could do that!” My head still wasn’t it in though, because all I focused on was making healthy babies and by that I mean keeping very tight glucose control.
The week after we brought our healthy twins home from the hospital, I started the blog while pumping breast milk in front of the computer. It was the most inconvenient time in my life to do this, but I felt extremely motivated to tell others about how I spent years with uncontrolled diabetes and slowly turned things around and finally, ended up with healthy twins, which was a double high risk pregnancy. I wanted others to know that it was not too late for them to take care of their health and make their dreams come true, as well. It took me a long time to realize that diabetics could do anything and once I did, I was eager to spread the word.
I didn’t know about the DOC when I started blogging, so most of the evolution of the blog has simply been the DOC becoming an integral part of it. I’ve come to realize how valuable diabetes blogs are and how the varied styles, voices, and personality types all wonderfully accommodate different people. I think it’s been enlightening for me to be aware of many of the bloggers out there. They’ve helped me develop my opinions, my way of thinking about people with diabetes, and even impacted my diabetes management.
Your sister Ana is the co-author of this website and she also has type 1 diabetes. What has it been like to share the diabetes experience between siblings and what is it like working together? Has sharing the disease brought you closer or changed your relationship in any way?
I guess it feels utterly natural to share the diabetes experience with Ana. We were diagnosed the same year in childhood so I don’t remember what it’s like to relate to Ana without us both being diabetic. If I imagine never having developed diabetes, I instantly get sick to my stomach to imagine my sister doing it alone. We’re one of five kids and I think it would have been harder on either of us to have been the only one in the family dealing with this. I remember eating sugar free jello together while our siblings had cake. I remember telling her that I knew what she felt like when she was low or high and that I understood that it was really tough. I praised her more than a sister normally would when she graduated high school valedictorian because I knew better than anyone else how much of an extra challenge she had to deal with to achieve that honor. More than anything we share an understanding that isn’t even expressed with words. That may be because I best express myself in written form and she with her paintings but it works for us.
You are a mover and shaker in the DOC and have also recently started a health coaching site, can you tell me what you offer on this site?
I am? Why, thanks! I work with people with diabetes who want support with any aspect of their health, typically in a 6 month program. We do this in hour long sessions over the phone twice a month and then I’m available any time through email or text. Soon I’ll be integrating the health coaching site with the blog so that the blog posts, recipes, and info is all in one place. I’m really excited about health coaching. It feels like a job that was made for me and it feels great to finally be able to use what I’m good at and do what I’m passionate about, which is listen to and encourage others to be the healthiest version of themselves.
You have applied to be an A1C champion, can you tell me what your responsibilities will be and what its like to be a role model for people with diabetes?
I’m happy to report I am going to train next month for this new role. Basically, I’ll be doing presentations to groups of people with diabetes as their peer. We’ll discuss the importance of the A1c test and other aspects of diabetes management. I will also be sharing my story in hopes people will get something from it. I have a history of very uncontrolled diabetes and serious issues like depression and anxiety and for the past few years I’ve been in a tremendously better place. I know what it’s like to feel really down and out and stuck and I want to let others know that their health is in their hands and they do have the power to improve it. I wish this program had been around when I was a kid.
What advice would you offer on managing motherhood and diabetes?
You know what, I’m still figuring this one out. I’m still a relatively new mom, but I’ve found that most days, since my kids keep me pretty busy my blood sugars do better if I monitor and limit my carbs carefully. I have the mentality that if I have to skip a meal every now and then in order to keep my blood sugars in place, then so be it. I think it’s healthier to do that than suffer high blood sugars. I think that almost anything is healthier than high and low blood sugars so I am creative about how I eat and work out during the day while wrangling twin two year olds. I also try to stay logical about things. Being a mom causes such emotional turmoil sometimes and this can cause me to actually hesitate handling a low blood sugar right away or checking when I think I need to because in my mind my kids need me. So I try to remember that we need to take care of ourselves because our kids need us to be well and then I just go with the flow. Life with diabetes requires lots of forgiveness, patience, and changing of plans. Just go with it while respecting yourself.
What is a must have item in your fridge/pantry?
Coconut oil, because I’ve found that it helps me keep my cholesterol levels healthy and it’s great on skin and it stays healthy when cooking with it in high heat. (Or so I hear.)
What is the last book you read?
So glad you asked! Steve of the diabetes blog Without Envy writes about his daughter’s diabetes. He recently published his first novel called “A Lovely, Indecent Departure”. I purchased it to support a fellow person touched by diabetes but found the book to be truly wonderful. It’s exciting, emotional, and written very beautifully.
I have to say, I reread your book the other day because I have been feeling kind of isolated from other women with diabetes and my sister has been away at college. It helped remind me that I’m not the only woman juggling diabetes with everything else we do.
What music are you listening to now?
I was actually just listening to my 13 year old brother who sings and plays electric guitar. Here he is rocking out to Voodoo Child!
Where and when was your last vacation?
Almost four years ago when Alex and I went on our honeymoon to Cancun. He’s coming with me to the DiabetesSister’s Conference and it will be the first time we both leave the kids so we’ll count that a vacation!
What is your favorite app?
Honestly, I own an ancient cell phone and have never used an app in my life. I’m pretty bad about technology sometimes. It’s a miracle I run a blog. Then again, I have friends in “techie” places
Ok Amy, I’m a few weeks into it and I feel like the marketing people should do a better job of talking about the OmniPod’s spiritual benefits. You know what I mean? I’m walking around with this thing stuck into some pretty tender skin. The constant sensation of it has me aware or sharpened or something in a way I think a martyr would appreciate. Not that I was seeking this, but here I am, my leg hurts and I have to do something with it because removing the Pod isn’t an option. Right? Please tell me you’ve thought about this, too, over the years.
I’ve thought a lot about the physical pain that comes with this “invisible” illness. The pain that was in fact visible on the faces of my family and friends when they’d watch me “shoot up” or prick my finger. “Doesn’t that hurt?” everyone asked and I would shrug. Of course it hurt. It still hurts. It hurts every day. What does it mean to self inflict bodily harm every single day? I’m not sure. I don’t think I ever thought of it as being spiritual or poetic or mythical even until recently….
When I was in graduate school a teacher reminded me of the tale of Icarus and Deadalus and the dangers of flying too close to the sun. He was offering it as a metaphor for my stories of high and low blood sugars, and I thought, wow, there’s another way to think of these challenges, a way that’s less black and white, a way that’s more poetic or spiritual or something. If I fly too high, like Icarus, I’ll burn from the heat of the sun, and if I drop too low, I’ll get swallowed by the sea.
Yeah, it’s a good metaphor. And “of course it hurt” is a really good summary of the whole strange situation of pain for a higher purpose. In the case of diabetes, it’s needles and finger-sticks in the interest of health. With religious ascetics it’s conquest of the senses through self-flogging or starvation or whatever, to get the body out of the way so the soul can flourish. Those both sound really noble but then when I think about what those habits create over time, I’d say it’s probably less noble or poetic and more like a callous. Or at least that’s part of the effect. Doing harm as a regular, normal thing sets up a value system where pain ranks pretty low, our own and other people’s. Like, really? You had a bad day? Hold out your finger.
I love the line “to get the body out of the way so the soul can flourish.” That’s beautiful. Sometimes I do feel like my body is in the way or tripping me up and I think as a woman with diabetes, I’ve learned to ignore pain. I think that makes me less sensitive to the pain of others and I’m not sure, especially as a mother, that’s a good thing. I always wanted to be the kind of mother who would comfort their children when they were sick, but I’m impatient when my sons complain of a hurt or stay home sick from school. And sometimes I do think to myself, “try pricking your finger all day long and then talk to me about pain.” But that’s not fair of course….there’s nothing fair about living with illness. My grandmother used to tell me after I was diagnosed (at 14 years old), “there’s always someone worse off than you.” I don’t think she was trying to be helpful, I think she was telling me to have a stiff upper lip, buck up, it’s not like you have cancer! So I felt too guilty to complain about the daily injections, finger pricks, blood sugar rollercoasters and fear of an early death, who was I to complain? Diabetes was bad, but not bad enough.
Your grandmother was right, a lot of other stuff hurts worse. It’s that the pain is self-inflicted. That’s what makes it weird. It’s what makes diabetes special.
Let me ask you this. If you imagine yourself at 41 with all the good things you’ve got but minus all those years of a stiff upper lip, then what? Are you a different mom, or wife, or friend?
And what’s your thought on early death? I mean, are you planning for that?
I actually don’t think about death at all! I am pretty firmly grounded in the near but definitely not distant future. I never feared death as a young woman with diabetes, and after all these years of pretty decent control and no complications, I’m at the point where I don’t think diabetes is going to take me any earlier than necessary. I do have a fear of blindness, but we can talk more about that another day
Oh, lets. A few years ago I bought a set of Braille flashcards just in case.
Stop! You did not!?!
I did. Sample below, sister.
As a 41 year old mom, wife, writer, friend, etc.etc. I go back and forth between thinking the stiff upper lip did me harm, and then I think, well no, maybe it did me some good. Maybe the stiff upper lip is what got me out the door and climbing mountains and traveling the country and jumping out of a plane even. Maybe if I hadn’t had a stiff upper lip I would be too soft. I would have stayed home and nursed my wounds.
I have to think that way too. Soft is a nice idea but I don’t think there’s a chance, now. Too scary. Lots of years of finger sticks ahead.
But maybe I could use a little softening on the edges?
Ok maybe. Me too but just the edges. Just enough that we can feel the needles and get that little spiritual high. Ow. Om. Ow. Om.
Devon Haemer was diagnosed with Type 1 diabetes when she was 11 years old. She is a recent winner of the Diabetes Hand Foundation “No Sugar Added” poetry contest with her poem, “She is Twenty-Six.”
She is Twenty-Six
She is twenty-six -
A vibrant woman, so self-assured.
Until she goes low -
That dreaded moment when
Her confidence plunges,
A waterfall of panicky tears.
Suddenly she is two again -
Begging juice and peanut butter crackers
Off complete strangers at the beach.
These moments are the sludgy bogs
That slurp down her hopes.
She slumps, anchored fast to the beach towel,
While her foggy brain gets pummeled by vicious waves of doubt.
“Can I endure these lows and highs,
These needles and numbers forever?!”
“I can’t possibly travel abroad like this!”
“How will I ever handle motherhood as a diabetic?!”
Then the juice and crackers manage to saturate
Her body’s yearning cells.
And her thoughts allow her space to breathe.
She has energy, enough energy to unbury her hopes.
And she is twenty-six, again –
A vibrant woman, self-assured.
“I had all the typical symptoms: extreme thirst, frequent urination, leg cramps, fatigue, loss of appetite etc. I no longer wanted to play outside. I just sat inside and read books all afternoon. My parents became very concerned with my lack of energy and extreme thirst. My mom brought me to the doctor’s office, and the doctor himself called our house that evening. I stood in the kitchen listening to my mom talk with him. I knew the doctor had never called our house before, so this news must be bad. After learning of my diagnosis, I hid in the bathroom, cried, and thought about how my life would never be the same. At that age, I was already working through significant vision loss resulting from a car accident. I asked God why he had to give me a second problem. I didn’t know much about diabetes at that time, but I was pretty sure that it never went away. I was frightened by its permanence.”
My family was shocked by my diagnosis, but their shock and sadness quickly turned into action and support. My two sisters and my parents helped me learn how to give myself injections and how to measure out my food. They were all very involved and reassuring. Soon after starting on insulin, my energy returned. I felt so much better! I went back to playing outside, this time with a juice box in hand. I spent a couple years using shots to deliver my insulin, but my blood sugars were constantly running high. I switched to the pump at age 13, and my HBA1Cs improved a great deal.
Q: Can you tell me about the inspiration for your poem, She is Twenty-Six?
This poem was inspired by my personal hopes and my struggles with working through fear. I have been truly blessed in this life, and I believe that diabetes has not prevented me from doing the things I have wanted to try or accomplish. However, I often have to work through an initial hesitancy and fear in order to make my hopes a reality. Facing my fears has been a daily challenge for me, but I believe I’m getting better with age and practice. I have noticed that my fears haunt me the most when my blood sugar is low. I get tired and disoriented; it’s difficult to resist the doubts in this state.
I wrote this poem as a reminder that those low blood sugars and times of doubt will pass. Confidence is a wonderful thing, but there is nothing wrong with accepting help from time to time. We all need the support of others in our lives. Also, our dreams cannot be dropped just because we have doubts now and then. We are not meant to be owned by diabetes. People are people, and those of us with diabetes are very capable of living very rich and fulfilling lives.
Q: As a young woman with diabetes, does writing poetry help you relieve stress and express your feelings about living with diabetes? Do you see creativity as a healing process to manage the stressors of diabetes?
I’ve always been an internal processor; I wait to verbalize my thoughts until I have had adequate time to formulate my ideas. I enjoy writing poetry because it gives me a chance to capture a piece of life and document my feelings. Writing has always been my default stress reliever. Seeing my thoughts laid out on paper gives me a good idea of what I’m working through, and how to proceed to the next step. Creativity, in any form, is a great way for people to understand life and manage its stresses, including diabetes.
Q: How has the diabetes community (tudiabetes and other sites) helped you live well with diabetes?
The diabetes community has been a huge support to me over the past few years. I wish I had found resources, such as tudiabetes, earlier on in my life. It’s comforting to have other diabetics to consult with on the day to day challenges. I’ve gotten some great advice over the past few years. The people I have met and the knowledge they have shared with me has inspired me to work harder at managing my diabetes.
Q: Finally, what’s the best advice you’ve received about living with diabetes?
The best advice I have received about living with diabetes is to focus on what is before me today – don’t dwell on the past and don’t get too caught up in the uncertain future. What’s important is to do our very best today. I believe this is how we can manage diabetes to the best of our abilities, to see each day as a new opportunity to get our blood sugars in range, to exercise, and to eat right.
Times of Change
My malnourished perspective was ruptured
By an expansive and ancient city.
The pin-hole proximity of one dweller to the next
Squeezed my hidden thoughts from their crevices.
I found myself crammed into rumbly buses, where
Easy breathing was a luxury.
Waves of Roman cologne awakened me there;
Even my worries smelled sweet.
From smeary windows and fractured streets
We were always gazing, contemplating –
So many masterpieces, fashioned a millennium ago.
But I couldn’t escape myself.
Then, Siena – it smelled of a slower pace –
More like carbohydrates than cologne.
We delighted in those slanting streets, but
I was stifled inside my musty convent room.
One day in front of my little sink
My face was splashed by a decade of fears.
I saw all the wasted days, the dropped decisions, forgeries –
Just to feel safe.
A prayer of confession and a longing for renewal
Dragged bits of worry down the sink with my tears.
A day later was Venice; it smelled murky and alive -
Just as I was beginning to feel.
That first afternoon on the vaporetto,
The rains doused my flimsy white jacket.
Their drops carried bits of my worry away –
Through the city’s canals and the flood waters of St. Mark’s Square.
Until finally, they came to rest in the Adriatic Sea.
Lyndsay Riffe, RD, LDN, CDE, was diagnosed with type 1 diabetes when she was 3 years old and says she couldn’t be happier with working as a diabetes educator. “I find great joy in helping others, and it also helps keep me on my toes with managing my own health!”
Here’s more of my conversation with Lyndsay.
Q: How has diabetes shaped you or impacted your life? Do you ever feel like you are submerged in the diabetes world? Does having diabetes make it easier for you to empathize with patients? And do you think they listen better, knowing you’ve walked in their shoes?
During my senior year of high school, I was at the point of deciding what university and what degree I wanted to pursue. At this time, I had my annual appointment with my dietitian/CDE and it clicked. (At least the dietitian part!) For most of my pursuit of my RD credential, a diabetes focus was not in my plan. I thought living and working diabetes would be an overload for me. However, when I was finishing up my program and had more contact with patients (other people with diabetes) I loved the empathy I could provide. I loved the wall that came down when they too learned I had diabetes (and I was not just another dietitian telling them to watch the bacon, drink skim milk, and eat 1/2 of a banana.)
Q: Exercise and staying fit is an important part of your life, when did you first get involved in sports?
I was active with cross country, track, and softball thru high school; it was fun and I have quite the competitive spirit! However, I was frustrated with managing my blood sugars during exercise. I was clueless and tended to just run myself high to avoid the lows.
At the age of 25, I ran my first 1/2 marathon. Not only did that race open my eyes to the enjoyment of training and racing, it also opened doors to being recognized and involved as an active person living with Type 1. Shortly after that race I became involved with Chicago DESA, Diabetes Exercise and Sports Association (now merged with insulindependence), and was introduced to Matt Corcoran and Diabetes Training Camp.
I had the opportunity to work as a dietitian at Diabetes Training Camp, and that’s when I gained a better understanding of strategies to manage blood sugars during exercise. Strategies that helped me give advise to others, in addition to helping me with my own exercise plan.
I felt inspired by other fellow type 1’s at camp (I attended both as staff and later as a camper), and it was through this camp I found out about a group of women forming, later to be called Team WILD. Team WILD (women inspiring life with diabetes) was planning on training together (virtually) and completing a half Ironman. I didn’t own a bike, and didn’t know how to swim, but signed up for this 70.3 mile race.
I loved the sport of triathlon and finished my first race in 2009. The following year I completed my 2nd half Ironman (both with Team WILD.) The following year I trained and completed a full Ironman (140.6 miles) with 10 other women with diabetes.
Team WILD began in 2009 with the design to give people with diabetes an ongoing support system and to have team camaraderie that went into training for the same race. Coaches provided athletic tips and training plans, in addition to a talented RD/CDE who helped with nutrition and diabetes management strategies, in addition to Dr.Matt consulting. Knowing I wasn’t alone was pivotal to helping me reach my personal athletic goals.
(Team WILD has evolved to address the ongoing needs and reach all people with diabetes, now to stand for WE Inspire Life with Diabetes. All coaching is done virtually–conference calls, webinars, etc.)
Knowledge and practice is how one maintains bg’s during an endurance activity.
- Understanding that training for endurance events requires you to think of yourself as an athlete first
- Fuel your body (with carbohydrates), and djust insulin to ensure you are able to take in the fuel needed.
- Try to maintain bg’s between 100-180, and take in 30-60g carb per hour.
It’s during endurance activities that I feel my best, and can honestly say I don’t feel like I have diabetes!
Q: Do you think it’s important for people with diabetes to have athletic role models (such as yourself), showing the benefits of a healthy lifestyle? Do we have enough, or do we need more?
There are ALOT of everyday people with diabetes that are doing amazing things, not letting diabetes get in the way, and living a healthy lifestyle. I feel inspired by anyone that sets goals, and isn’t afraid to try something new. However, it’s my fellow diabetic teammates (and now dear friends) of all ages that continue to inspire me. Everyday people that keep shooting high, proving they will not let diabetes slow them down.
Social media has also done a great job to reach the diabetic community so they can read ALL aspects of life with diabetes (nutrition/activity/medications/stories) and hear more about others that live with it.
Q: You worked with Diabetes Sisters, I think that’s how we first connected, right? Why do you think support groups like DS are so important for women with diabetes?
Yes! That’s how we first connected (I contribute to the Nutrition Tip of the Month.) Support is so important for living with diabetes. Good support from our healthcare team is needed, but having a family of people that truly “get it” is just a wonderful tool to living well with diabetes. Diabetes Sisters is a great network of people that get it.
Q: What advice would you give someone who wants to get involved in triathlons?
Don’t let your concern of managing your blood sugars during the training and race be a fear that prevents you from pursuing. There are a lot of great resources out there specifically for athletes with diabetes. On the same note, you don’t have to do anything alone!
Morgan Patton is a member of Team Type 1 who took time to chat with me about living well with diabetes.
Q: Tell me about your diagnosis, when, where, and how (how sick were you, how did you and your family handle the diagnosis?)
It was in 1995, and I was 7 years old. I remember being really tired all the time. I would often get in trouble for falling asleep in class. I remember being so thirsty and just wanting to chug an entire liter of soda when I would get home from school. I would wet the bed, which I was pretty ashamed about. My parents had gotten a divorce and my mother and I had recently moved to Tallahassee, FL. We moved in with my aunt and cousins in a guest room and I shared a bed with my mom. I remember pretty much every morning trying to wake up before her and making my half of the bed so she wouldn’t see that I wet it again. I’m not too sure how long my mom waited before taking me to the doctor, but I would say a few weeks. She just thought I was acting weird and depressed because of the divorce. When we went to the doctor, I remember getting my finger pricked and the reading was >500 mg/dl.
Q: You were young when you were diagnosed, did you look at diabetes as: this isn’t going to stop me from doing what my friends are doing! Or because you were so young, was it more fear based with an attitude of: My life needs to be closely monitored?
I’ve never looked at diabetes as something that will not allow me to accomplish a task. When I was a child I thought that way because of ignorance, now I think that way because I’m stubborn. When I was young I didn’t fully understand diabetes and how critical it is to have good control of your blood glucose. I wasn’t scared, I just thought of insulin as this thing that I had to take when I wanted food. In my mind it was as important to my body as a Flintstone multi-vitamin. I didn’t realize how dangerous insulin can be if not taken properly. I also knew if I was playing soccer or running around the playground with friends and I felt low, my mom would have a juicy juice for me and I would feel better.
Q: When did you first get involved in sports? Did you see exercise as a way to manage diabetes?
I first got involved in soccer when I was 7 or 8. I loved it because it fulfilled my competitive side, and I got to eat and drink sugary snacks so I wouldn’t go low. When I was 8 or 9 I started riding horses and competing in hunter, jumpers and eventing.. I didn’t view exercise as a way to manage my diabetes, I did it because it was fun.
Q: As an adult, you are a rider with TT1, tell me about this experience? How did you decide to first get involved and has it changed the way you think/feel about diabetes? For ex. Phil told me when you first came to the team you had a pretty high A1C and that since you’ve been on the team, you’ve brought it down by a lot! Can you tell me about this, how you improved your bg? Also, how do you manage your bg while cycling and training?
My experience with Team Type 1-SANOFI has been life changing. In 2005 when I was getting a check-up from my Pediatric Endocrinologist I had an a1c of 16.8%. Prior to the visit I had managed to skip 3 visits in a row by calling into the office, pretending to be my mom and canceling my appointment. They eventually caught on. At the time I was supposed to be taking injections and checking 4-6 times a day. After that visit he switched me to a pump. It automatically lowered my a1c to about 13% even though I still wasn’t checking or bolusing, I was just getting more insulin than before. I gained 15lbs in 3 months and freaked out because the insulin made me gain weight, but I felt so much better. I decided I needed to start exercising more and liked the idea of alternative transportation. So I started riding my bicycle to school most days a week. It was only a total of maybe 5 or 6 miles but I loved it. I also could tell I was getting more fit.
A few months after I started riding my bicycle to school, I got in contact with Phil Southerland, the team founder. Our mothers met at a Christmas party and both got to talking about Phil and me and how we both had type 1 diabetes. We were completely different though. Phil was at the University of Georgia, racing on the collegiate cycling team, and had an a1c of 5.5% or something like that. I was finishing high school, thought I knew everything, only rode a bicycle a few miles to school, never checked my blood glucose, and still had an a1c of 13+%. Joanna (Phil’s mother) thought it would be a great idea to introduce us to each other and see if he could inspire me to manage my diabetes better. Phil later asked if I wanted to come out to San Diego, CA to help Team Type 1 in the Race Across America. I gladly accepted and got really excited because I’d never out west and was looking forward to being away from my parents for 2 weeks.
In San Diego I met 8 elite athletes with type 1 diabetes who looked like super heroes and I wanted to be like them. I had not found another thing I was as passionate about until I saw Team Type 1 doing the Race Across America. They were checking their bg15+ times a day, and I decided if I wanted to be like them, I needed to start checking. I slowly realized that when I went for a ride with a blood glucose of 150, I felt better than if my blood glucose was 290. If I ate a little bit every 20 minutes to sustain my blood glucose, I was able to ride harder longer.
By the end of 2006 my a1c was in the low 7% range.
Q: Finally, what advice would you offer another young woman with diabetes who wants to get involved with TT1 or someone who would like to bring their a1c down with exercise?
My advice is to set small goals. It could be to check 1 more time a day or walk for 10 minutes every day. It’s important to stay motivated with a disease like type 1 diabetes. For me, I like pushing myself physically and mentally. I also love accomplishing new challenges. I just signed up to run the Atlanta Marathon in October with the Team Type 1 running team.
Team Type 1 is always looking for more women to join to running, triathlon or cycling programs. If you’ve never done a race, you should start by looking into some events in your area. Most cities have cycling or triathlon clubs that you can be a part of while you learn about racing. For the Women’s Cycling program, which I am in charge of, we have a wide range of abilities. We have a few girls like myself who compete on the national level as well as some who have only done a few races. We want to help them develop so one day they will be racing on the national level too.
If anyone ever has any questions about what we do to manage our diabetes while training and racing, I encourage them to contact any of the athletes via the Team Type 1 website
I’ve been thinking about all the attention that’s been given to the value of SAHM (stay at home moms) because of the whole Ann Romney/Hilary Rosen debate. In an article by Frank Bruni called “Working and Women” he sticks up for Romney, saying his mother, also a SAHM, worked harder than anyone he knows. While his tone felt a little patronizing to me, after all, he is not a SAHM, I appreciated his attempt to highlight the value of working from home.
I don’t like to call myself a SAHM, and if I have to call myself anything, I’ll say I’m at WAHM (work at home mom.) I’m a writer and a mother and I happen to work from home, unless my kids are home and the babysitter comes and the I’m a work at the library/coffee shop mom.
Working from home has a lot of advantages for me as a woman with diabetes. I’ve figured out a schedule that allows me to run in the morning, get my kids off to school, come home to write and then, when my kids return from school, I do all those other household duties (laundry, homework, cooking, cleaning etc.) Money is tight and we’ve made a lot of sacrifices, but most of the time, we’re pretty satisfied.
The times we’re not satisfied is when I start thinking about getting a “real job,” because after all, being an at home mom doesn’t pay. And unfortunately being a writer doesn’t pay much either. So I get on a kick every few months and start looking through job sites and sending out my resume and mostly, hearing nothing back. And during that time, while I’m on my morning runs, I try to imagine what it would be like to go back to the real working world. I try to imagine dropping my kids off for the entire day (not just the school hours), and not picking them up until 5pm. I try to imagine managing my diabetes and I think back to the days when I was out there “working” and all those rollercoaster blood sugars, and I don’t want to go back to work. But I also don’t want to avoid something out of fear.
I like working from home. I like that I can eat every meal at home, that I can test my blood sugar as often as possible, that I can exercise every day and that if I start to get low or high, I can take care of it immediately. Working from home allows me to put my needs as a woman with diabetes first and I like that. But I don’t like struggling to pay our bills. And I don’t want to feel like I am boxing myself in.
So I’m going to start looking for women who are living successfully with diabetes and managing successful careers. If you are one of those women, come and find me, I want to hear your story.
Articles and Studies on Diabetes and the Workplace: