Category Archives: Diabetes and Blogging

National Diabetes Awareness Month 2012

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It’s National Diabetes Awareness Month.  And what are we going to do about it?  There are so many ways to pitch in and I’ll be trying to pass the word as I hear about it.  But first, I want to appeal to those out there possibly asking themselves the question, “What’s the use?”

First off, I understand.  I mean, as a society we’re also trying to cure a bunch of other devastating diseases so sometimes it feels overwhelming trying to fight for one’s own plight.  Even though I’m doing ok with my diabetes as of 11am this morning (it’s always subject to change, I’m aware of that), others have had loved ones die, depression, financial difficulties and other huge challenges to handle alongside their diabetes.  So I want to advocate not just for myself as a person with diabetes, but for all those who are struggling immensely and paying high interests for it.  Not to mention all their loved ones.

Secondly, diabetes researchers have given us very compelling statements about how close to a cure we are.  They say the main factor between us and our cure is in our wallets.  Now if you’re like me, your wallet is more decorative these days than anything else but just knowing that possibility is a strong push for me to think “Ok, how can I advocate for diabetes and get more money to the researchers?”

The clock is ticking for all of us and will soon be ticking for many more who will be diagnosed this month.

So again, It’s National Diabetes Awareness Month and what are we going to do about it?  Just pick one way in which you personally can help.  No matter how small, your help is a big deal.

In fact, start by doing the Big Blue Test.  And stay tuned for more info.

XOXO

Sysy

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.

September/October Resolutions 2012

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“If you want to live a happy life, tie it to a goal, not to people or things.” 
~Albert Einstein

My goal for the past two months was to focus on finishing my nutrition school studies (check!) and get through A1c Champions training (check! check!).

I’m excited to move onto the next two months with more time on my hands.

Ana’s goal for these next two months is to get informed on the presidential candidates and vote.  I think this is the first time Ana will be old enough to vote (right?) so yayy Ana!

My goal for these next two months is to focus on diabetes advocacy.

I plan on giving a lecture about diabetes somewhere in town.  I plan on blogging often again.  And I hope to support all those great initiatives out there in the world of diabetes advocacy leading up to diabetes awareness month.  I’ll let you know what those are so you can help, too!

Remember, if not us, then who?

Clarifying Our Message as DOC Bloggers

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In talking with a friend recently, I thought about how bipolar diabetes blogs may seem to the outsider.  Often, in the DOC or Diabetes Online Community, people blog about how we are empowered patients, how we are happy despite our serious condition, how we like to be called “people with diabetes” instead of “diabetics”, and how we are lucky to have an illness that we can have so much control over.

On the flip side, it’s not unusual to read a diabetes blog that seems written for an audience who isn’t aware of the ins and outs of diabetes.  It’s common to read blogs about how miserable diabetes can make us, how our rights are infringed upon, how others aren’t sensitive enough to our plight, and how we feel like complete failures for living with a condition that is as misunderstood as it is impossible to perfectly control.

Many of us feel a need and an impulse to talk about our feelings on our blogs.  And since feelings come and go and their intensity ebbs and flows, this gives the appearance of instability.  The overwhelming majority of people who read diabetes blogs have diabetes so traditionally, this hasn’t been an issue.

Many of us also feel compelled to advocate on behalf of our condition and those who have it and therefore we write posts that are aimed at those who don’t understand diabetes and may need some educating and awareness on the topic.  And this works to some extent because family and friends who don’t have diabetes tend to read our blogs.

However, you can see how limiting this is.  Friends and family are already more compassionate to what we experience in life so who else is reading a diabetes blog to learn more?  A few doctors perhaps?  The newly diagnosed.

For those who start reading a diabetes blog without knowing much about diabetes, it’s understandable that the impression they get from the DOC is that “these people need to make up their minds!”  Are we happy and triumphant e-patients who are the boss of our chronic condition or the miserable and depressed victims of a terrible uncontrollable disease?  Well, we’re both and everything in between.

This is understood by me and all you other people with diabetes out there so it’s no biggie.  Except, lately, formal advocacy efforts and the media have both become very intertwined with us bloggers.  And I believe this means we need to amplify our awareness a bit about our writing.  We need to be very careful about how we say what we say.  Is this a drag?  Kind of, yeah.  But, with power and influence comes responsibility and as diabetes bloggers we are essentially representing other people with diabetes, disclaimer or not.

I don’t mean we don’t blog about what we want and say what we want.  But I think there are a few things we could do to help.  Here’s what I mean: (by the way I’ll be working on these myself)

1.  Be clear who your audience is.  Are you writing to those who don’t know about diabetes?  If so, make sure that’s clear to the reader.

2.  Be clear about which type of diabetes you’re talking about.  We need to ban together to make the types of diabetes more clearly distinguished by society.

3.  Before you publish your post, read it as if you were a newly diagnosed or the loved one of a newly diagnosed.  Do you feel like jumping off a bridge?  Consider adding a little something so the reader understands you and is put at ease.  Example:  Writing about how tired and depressed you are to be battling diabetes?  Think of one positive thing and add it.  It will help you and them.  At the very least make sure a reader can gather that you are simply expelling emotions that do not represent 100% of your emotional repertoire.

4.  Be careful about using absolute statements about diabetes.  It isn’t all good, bad, uncontrollable, controllable, easy, hard, always, or never.  If it is that way for you, preface with “I think” or some other sign of ownership.  Also, be careful with citing studies as proof for an absolute statement about diabetes.  Even studies are wishy washy.  They can’t help it.  We’re working with a zillion factors here.

5.  Be careful with causation and causality.  Learn the difference.  Just because your mom breastfed you and you still got diabetes doesn’t mean that breastfeeding doesn’t lower the risk for others-to the tipping point of them not developing type 1.  Just because someone is a thin type 2 doesn’t mean obesity doesn’t raise one’s risk for type 2 diabetes.  Just because someone is thin doesn’t mean they don’t have a high body mass index and aren’t clinically overweight.  When we say something isn’t true based on our very limited experience/knowledge, we’re not doing our community any favors.

I’m astounded by how bloggers are given more and more attention and opportunities to represent our community.  I think it’s fabulous.  I also think we could be a little more prepared so that when our time comes, we represent our community in the most helpful way possible.

Because working towards awareness, compassion, understanding, and a cure is something we’ll only achieve together.  And I know we all want those things.

Here’s a thought provoking post from Nathan of Edibles…The Diabetic Edition that I’d love for you to check out.  His insight helped spark the thoughts for this post.

Living in Diabetes Land

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When I first started blogging, I interviewed someone I barely knew of but whose work in diabetes advocacy really impressed me-Manny Hernandez of The Diabetes Hands Foundation.

I asked him if he ever got tired of working in the field of diabetes social media and awareness because it seemed to me that it would be tiring or depressing.  His answer alluded to nothing of the sort.  It seemed he was happy to be so involved in all things diabetes and helping others.

This was when I blogged once a week or so because my twins were these cute, needy little infants.

The other day I was asked what one of my passions was and I struggled to answer because I wanted to say “diabetes?”  I guess what I meant is helping people with diabetes.

You can’t get me to do anything I don’t want to do.  I’m pretty darn stubborn and moody.  So lately when I spend each day writing a blog or article about diabetes, emailing people with diabetes, health coaching people with diabetes, reading about diabetes, researching on diabetes, reading diabetes blogs, interacting with people on facebook about diabetes, volunteering for diabetes advocacy, and then managing my own diabetes…well, there just isn’t another way for me to describe what it’s like than to say I live in “diabetes land”.  I know I’ve used that term before but I mean it.  And while it seemed intimidating before, now it’s just natural.

What’s funny is that while I don’t typically read too much about diabetes complications for the fear and anxiety it causes me, I don’t seem to shy away from anything else diabetes related.  I love to learn about it, read other’s experiences with it, support those who have it, and think about ways to improve my own diabetes.  I could never run out of information to delve into.  Diabetes is so complicated and fascinating and because of the variances within the human body, manifests uniquely for each person.

It’s strange because only recently have I realized others are not like this.  I respect those who are so adamant about diabetes not defining their lives that they don’t talk much about it.  I think that’s awesome and I sometimes wish I were like that.  I totally understand not wanting to confront diabetes because of fear.  And I get focusing more on daily life than on one’s chronic illness.

I guess I was always meant to be a diabetes advocate.  I have an unquenchable passion for making one’s life great alongside diabetes and for the rights of people to health and happiness despite this condition.  I don’t know if this is an asset to my own health…I like to think so.  I just have to remember to take care of me, too.

Does your passion distract you from your own diabetes?  If so, how can you redirect some of your everyday energy back into managing your diabetes?

Here’s what I do:

I set up a diabetes station, lean on others, and read some good books about diabetes.

Advocacy On the Go

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Lately, I’ve made it a point to talk to whoever is next to me when I’m on a plane.  It’s almost like an exercise for me since I’m quite a bit reserved and introverted.  But I tried it recently and was so blown away by the experience.

Just the other day, I met a woman whose family endured the holocaust.  I talked to a little boy travelling alone who was my youngest brother’s age.  He talked about baseball like there was no tomorrow.  He was a gentleman too and helped me with my luggage!  And I met someone who has a twin and provided me with insight on how I might be sensitive to my twins while raising them.  And to every person I provided a lot of diabetes advocacy information.  I felt like a travelling diabetes advocate.  In fact, I guess we could all be in our own small way, right?

We know people are largely ignorant about diabetes so if we extend a little bit of accurate info everywhere we go we can do our part to help discourage all those myths and misconceptions out there.

What I was really excited to learn is that everyone I encountered was really eager to learn more about diabetes.  Even the 13 year old asked me, “Tell me about diabetes, I don’t know anything about it but I hear the word on the news all the time.”  They know it’s a big deal and many themselves are concerned about their own health.  Also, people are smarter than we give them credit for.

I found a great way to get diabetes in the conversation, too.  Just check blood sugar while sitting next to someone.  I only did it because I needed to but it sure worked to spark an interest in the subject.  And of course, instead of lick the blood off my finger I used a wipe.  Except for in the case of the 13 year old.  I did my usual routine and he thought it was pretty cool that I just “recycled the blood back in”.  Kids say the darnest things.

July and August Resolutions

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I totally skipped May/June resolutions.  Busy months.  Yikes.  Let’s just go straight to July/August.

My July/August goal is to work on my book proposal.  But I have A1c Champions training and health coaching and some other diabetes advocacy related endeavors.  So instead I’m changing my goal to something I’m needing right now and that’s to exercise more.  I gain weight if I don’t do a lot of cardio (just the way I’m built I suppose) so though I have a lot of muscle tone, I need to jiggle off some fat before my frustration about said fat gets the best of me.  I plan on getting to the gym 3 times a week to do just cardio. Hold me to it.

Ana’s goal is to research graduate schools and programs.  This year she commences her senior year studying studio art and teaching and she has chosen to continue education.  Annie, consider this your reminder.  Hehe.

Anyway, if you’re new to my goal accomplishment system it’s called the 6 change method by Leo Babauta.  He is the widely popular blogger behind zenhabits.net.  Basically, you pick one change you want to make and focus on it for two consecutive months-plenty of time to make it a habit.

This method worked great for me last year and I’m excited to do it this year.  The blog adds a bit of accountability for me, too.  That, and I share it with my husband so he can help remind me of my goals.

Do you have a way of forming habits or making changes or accomplishing goals?  Share!

Three

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My kid’s turned three the other day.  We spent the day watching 9 little kids play together in celebration.  They all dealt with obstacles as those obstacles presented themselves (how do I reach that blackberry on the blackberry tree?)  They helped each other.  They weren’t afraid to tell the truth.  Or to cry.  Or laugh.  And when they fell down they just jumped back up and continued on their way.

If we manage our diabetes in the same spirit with which a child lives, I think we can do pretty well.

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The kids planted a tree with dad for their birthday.

A word on my children in case they read this one day.  Aurora is a sensitive and cheerful child.  She likes to act.  In fact, the world is her stage, almost all the time.  She can play alone for hours.  She loves to dance and sing and is very enthusiastic and kind towards others.  She is a bit of a drama queen like me, which entertains me to no end.  She loves being outdoors and discovered that she loves being barefoot outside.  So much so that I now struggle to get her to wear shoes.  Oh, and she’s very stubborn.  But I’m kind of glad about that.  Her favorite food is anything starchy or sweet (ugh).

Henri is really extroverted and friendly.  He is excitable and high energy.  When he stops moving he falls asleep.  He loves to inspect everything new that presents itself, whether that be a bug, a piece of technology, a toy, or a blade of grass.  He can be a handful but I have discovered that if he’s had his fill of social endeavor, he’s calm and happy.  If not, well, look out, that’s all I gotta say.  With all his moving about he is a surprisingly good cuddle bug and is very affectionate and loving.  He is also very decisive and bossy.  He’ll only eat chicken if there are bones attached.

The Girl’s Guide to Diabetes also turns Three!

I had began blogging with one goal in mind: to tell others that going from lowest of low to happy and healthy was possible because that’s my story.  But this blogging thing has turned into a vehicle for being a diabetes advocate and for discovering opportunities for talking to more people about our diabetes than I ever imagined.  My favorite thing is teamwork and camaraderie and working on making a real difference.  Blogging has opened up a world where these things are all possible-much more so than if I had just done what I set out to do initially.

So here’s to going with the flow and letting hard work and one’s heart lead the way.  Fulfillment doesn’t escape us that way.  I foresee blogging forever so watch out!

XOXO

ps:  If you want to guest post, I don’t care who you are, you’re welcome to (provided you’re real).  Contact me at sysy@thegirlsguidetodiabetes.com

The Making of The Girl’s Guide, Part 2 of Interview

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Many of you have heard this story before but if you haven’t and happen to be curious here is part 2 of my interview with Laura Kolodjeski from Sanofi talking about how and why I started the blog and what my future plans are.

The only thing I would like readers to take away from my words is that sometimes having diabetes can be the source of motivation in our lives.  It can provide our route to helping others.  It can be a big part of our lives without being the bane of our existence.  I think to some extent that’s what I’ve been trying to do.  Thrive with diabetes, embrace it and learn from it, and use all that energy to help others who have it.

Luckily for me my path on this blog has led me to immense learning and support from the DOC.  So it’s just another example of how life is always full of pleasant surprises and even our having diabetes can ironically dish good things out.

Click here to read The Making of The Girl’s Guide to Diabetes

As always, thanks so much for reading.

XOXO

Diabetes Blog Week, My Fantasy Diabetes Device

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Click here for the Fantasy Diabetes Device – Thursday 5/17 Link List.
Today let’s tackle an idea inspired by
Bennet of Your Diabetes May Vary.  Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?

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The sky is the limit?

My fantasy diabetes device would take over doing what my pancreas used to do and do it just as well.

That’s it.

And ya’ll thought I couldn’t write a short post! Winking smile

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