Tag Archives: diabetes advocacy

Thoughts on Diabetes Guilt

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I answered a few questions for a video project recently and wanted to get my thoughts out in written format.

The first question was if I had ever felt guilty about having diabetes.  Personally, I have never felt guilty about having diabetes but I have felt guilty about other things such as not eating right, not checking my blood sugars often enough, or skipping exercise.

The way I’ve dealt with this is to first recognize that I’m not perfect and second of all be brutally honest with myself about my efforts.  For me, guilt comes from not doing what I know I’m capable of.  So since I don’t make insulin, I don’t feel guilty about having diabetes, but I certainly try to be aware of what I’m doing in order to get what I want such as good health or great blood sugars.  If I feel guilty about how I’m eating, it’s usually because I know I could be doing better.  I view guilt as a sign that helps point me in the right direction.  And since I’m not a fan of guilt, I use it as a pointer and then banish it for productivity and dignity purposes.

I find that making a plan of action and setting goals is a really great way of diminishing guilt.  Once we are on a path towards our goals, we feel empowered and we know we’re working hard and then there is no room or place for guilt.

I have been treated differently in the past for having diabetes.  It’s understandable because of how most people have a certain level of ignorance about diabetes.  So I find education is key.  And when it’s not appropriate to lecture or teach someone about diabetes, I just smile and feel confident knowing that most people don’t mean to offend and those who do aren’t worth my time.  Walking around angry about the public’s ignorance about diabetes is immature.  I mean, are we saying everyone needs to know the ins and outs of our condition when we don’t know the ins and outs of hundreds of other conditions?  Yikes.

For those who don’t have diabetes, I do have a suggestion.  I’d suggest that they simply not assume when it comes to anything about anyone else and be open to learning, instead.  The great thing about this is it should work on just about anything!

The best tool I’ve found for handling misconceptions out there about diabetes is to put all my energy and focus on living my best life because I’ve found that when I do that, I look and feel better and that speaks volumes to people and sets them straight often before I open my mouth to correct them.

Many people feel that type 1 diabetes is easy and all about just taking insulin.  It’s been very empowering for me to write a blog that family and friends read because it’s allowed them to learn more about what diabetes is really like to live with, without being lectured.

So all in all I’d say that leading and teaching others by example and focusing on ourselves is a great way to fight stereotypes and misconceptions out there.  Placing much of our energy outside of ourselves is a bit of a waste, in my opinion.  And very importantly, I’d say that it’s important to decide that no one is going to make you feel bad about having diabetes.  If they get to you it may be that you have some feelings of your own to work through and if that’s the case, work through them.  My philosophy is to take responsibility for our own feelings and actions.

I like being in a place where guilt doesn’t weigh me down and other people have little power over me.  I think we all deserve that.

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.

A1c Champions Training Progress

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Psyching myself out of my nerves before speaking on a panel in D.C.

 

So I’ve been in training for the A1c Champions Program.  It’s really a wonderful program which happens to be sponsored by Sanofi US.

I have had to confront my fear of public speaking head on.  It has not been easy.  It has not been without pain.  But, I’m not quitting and that fact alone makes me feel really fulfilled.  You see, my social anxiety issues go back to my preschool and kindergarten age.  When I was 5 in kindergarten, I remember wanting so badly to tell my nice teacher that I thought she was great and that I appreciated her (she was sensitive and understanding of my ways unlike many teachers to follow).  Alas, I could do no such thing.

A few years later I fell in love with gymnastics.  I really felt like it was something I could be good at.  And I’m petite and small boned and I get really muscular, I would have been able to do well, I think.  But they announced we’d have to do a routine in front of all the parents and I remember crying outside the door to the place, while my dad (or mom?) tried to convince me to not be afraid, to just go on and do it.  I did not go in.  I quit forever.  I did as much as I could at home for years, even putting on dance/gymnastic shows for my parents just for the joy of it but I always regretted quitting.

Just after that I took piano lessons, which I really enjoyed.  My instructor said I was a natural.  I did two recitals that I thought would stop my heart and then, knowing there would be more to come, I decided to quit.  I told my parents I was just choosing soccer over piano.  The truth was that on a soccer team there were a lot of us to watch versus having all the focus be on me.

There have been many more examples like this in my life.  In fact every time I had to present something in class I usually delayed the grief by claiming high or low blood sugar to which the teacher would say, “Oh sweetie, ok, why don’t you present tomorrow?”  “Ugh.  Tomorrow.”  I couldn’t win.

So learning to give an hour long program where I’m doing almost all the talking is really challenging for me.  I have a flight/fight instinct kicking in.  I’m fighting the urge to come up with some pathetic excuse as to why I can’t continue.  But you know what?  I’m not going to quit.  For all those out there with diabetes, for all the times I let my own self down, I’m going to do this.

Are you doing something that scares you?  Share in comments.  If not, find something to do that scares you!  ;)

On Meter Accuracy and What to Do in the Meantime…

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While I do give my time and energy when it comes to petitioning for better meter accuracy, I also have adopted a few personal safeguards.  These safeguards are like self imposed regulations that I don’t know how to live without.  I used to live without them but there were a lot of close calls.  And sometimes I forego them and scary things happen.

Meters being a good bit off (up to 20% off is it?) is an important issue to tackle, indeed.  But since it’s the reality of our current situation, we might ask ourselves in case we haven’t already, “What can I do about it?”  I’ll share what I do in case in inspires anyone to answer this question for themselves:

It’s been my experience that the further away from 100 my blood sugar is, the less accurate my meter may be.  Well how about that?  My meter and I mutually agree as to what my “target” is.  Just kidding.  Sort of…

Since low blood sugar comes with clearer symptoms for me and is an immediate emergency situation, I don’t question my meter when it says I’m low.  Though, if I don’t feel low at all, I will try jump in jacks and if I have energy for those I will retest because something strange is going on.  Perhaps leftover fruit juice on my fingertips from the apple I had earlier.

When my blood sugar is within my target range I relax, cheer, do a dance, etc.  But I try to have faith in my meter and assume it’s right on.

When my blood sugar is over 250, I retest.  It hurts me to retest because strips are like gold but I do it because this could happen:

Years ago, I tested 350-something.  When my blood sugar is that high, it’s hard for me to bring down so I usually push it down with a larger than usual bit of insulin.  Well, I gave insulin and then stopped.  I thought about how I didn’t feel 350 high.  So I tested again and saw I was 260.  I tested yet again and was 249.  “OK” I thought, “Now I’ve got a heck of a lot of insulin coming my way”.  Sure enough in 40 minutes I was 98 and dropping fast and still had over an hour of active insulin coming.  Nowadays the times that has happened have been handled differently.  I start to eat after 15 minutes to deflect the steep drop.

But better yet, it really doesn’t happen too often because I test twice.  If the second test is really far off from the first, I test a third time and go with the majority rule.  I would never ever test, see a high number, give insulin, and go to sleep.  Our meters are not built to support that level of responsibility.  Not with our lives.  That is a shame, yes, but that’s where our brain comes in handy.  What can we do to help ourselves against this?

Something a lot of my friends do is to eat low or moderate carb.  They have many reasons for eating low or lowish carb but one of the reasons for many of them is that this way, there is usually not a lot of insulin circulating at any given time.  And the food they eat is going to minimize the likelihood for being high enough to see super large discrepancies in their test results.  This works well for me.  In particular, what works well for me is to be careful with processed food.  I find that avoiding it makes my blood sugars more stable and my life easier because I don’t have super high highs.  And then my meter isn’t as big an issue for me as it could be.

But they should totally work on meter accuracy.  Or at the very least give everyone more strip allowance.

Please.

Pin A Personality!

 

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I pinned Hope Warshaw, who is a member of Diabetes Advocates and author of multiple books for people with diabetes.

 

We need people to see the blue circle and immediately think, “DIABETES”.   The more united we are under one symbol, the better outcome we’ll have in our advocacy and awareness efforts.

The International Diabetes Federation is behind this mission and are encouraging us to “Pin a Personality”

Here are the instructions straight from the IDF:

“Take a picture of a personality with the blue circle pin.

How to choose a pinable personality?

Your personality can be anyone who you think would profile our blue circle to a wider audience or contributes to IDF’s mission to promote diabetes care, prevention and a cure worldwide.

Your personality could be a local celebrity, a politician, a teacher, a chef, a local councilor or your gym instructor.

Do you have anyone in mind or are you attending an event before November 14? Will you see anyone pinable? Let us know at wdd@idf.org and we will send you some blue circle pins.

Upload your photo to our World Diabetes Day Facebook page or on Twitter using #WDDPin by November 14. Don’t forget a short one liner explaining who your chosen personality is!

Let’s get the blue circle out there and recognized as the global symbol of diabetes!”

 

My blogger friend Stacey graciously pinned a few personalities because yours truly is a wee bit shy about these things…

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Dr. Nat Strand and Stacey with DiabetesSister’s Founder Brandy Barnes.

DiabetesSisters 2012 Conference Recap

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With the lovely Kyra of Myabetic (my favorite diabetes cases).

 

I had a great time at this event and so did my husband, Alex.  My post talking about the conference is up today over at DiabetesMine, check it out!

Interview about Bonding with My Sister Over Type 1 Diabetes

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Painting is called “Thank You” by Ana Morales

 

I had a chance to meet Sanofi’s Laura Kolodjeski in Washington D.C. last month and not only did we so easily hit it off as friends, Laura also interviewed me about what it was like for my family to have two type 1 diabetes diagnosis in the family.  You all know how I can go on and on and so here is Part 1 of that interview.  It’s pretty candid considering how comfortable I was speaking to Laura.  I hope you all enjoy.

Thanks, Laura!

Diabetes Blog Week 2012, What You Should Know About Diabetes

Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

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I’m about to leave for the DiabetesSisters Conference and have spent all morning getting things ready and trying to get my two year olds who have never been without at least one of their parents to understand that mommy and daddy will be back in a few days, “we will be back, we promise”.   I can’t say I’m not nervous about this…good luck with em’ Mom and Dad, Ana and Gabriel!

Anyway, so I didn’t have a lot of time for today’s post but I do have something I want to say to the world about diabetes:

You may think you know a lot about diabetes.  You may think you know the truth about diabetes.  You may think your grandmother’s diabetes is like my diabetes.

This is the worst thing you can do to us people with diabetes.

What we want is for you to understand that diabetes is wildly complex, varies very much between person to person, and therefore you can never know all there is to know about it.  And what you think you know about a person’s diabetes is probably not accurate.

So just be humble and cautious and open to a person with diabetes telling you what their diabetes really is to them.

Then you’ll know.

Sincerely,

A girl with type 1 diabetes.

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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