Tag Archives: diabetes advocate

Thursday 2015 Diabetes Blog Week Magic Changes

Click for the Changes – Thursday 5/14 Link List.
Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

 

Since blurting out “cure!” would make this post too short, I will say that I want management tools, devices, and medications to become accessible to everyone who needs them.  I’m tired of using insulin past it’s date, using expired strips for the past two years, and not affording a CGM.  More than that, I would love for anyone to have all they need to attempt to manage their diabetes well.  Imagine, having all those things still doesn’t guarantee managing diabetes well-that’s how tricky it is. But at least being able to not stress about acquiring tools (including basic ones like um, insulin) would be nice.  So we need better tools and we need better access to those tools.  (I wrote this post a few days ago, since then a similarly themed article popped up that I’d like to refer you to since it’s more articulate than my post: https://myglu.org/articles/a-view-from-the-other-side-of-the-tracks).

I could go the route of saying we mostly need people’s perceptions to change since that may lead us to the mass funding we need for a cure.  So there is that notable thing.

To be honest, I could go on all day about changes I’d like to see.  So I’ll stop there.  :)

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

Travel and Diabetes Ramblings with a Stranger

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One of my favorite places in the world is the airport.  I knew early on the significance of such a place having moved from another continent to this one as a young child.  The airport is like a revolving door of possibilities and opportunities literally flying in and out all day in the most organized fashion we can manage.  Each trip to and from an airport includes new sights and faces.  Each trip holds a little mystery and anticipation.  In an airport we’re forced to be patient.  We’re forced to have faith in others, namely the pilot of the plane.  We’re forced to sit still and be one with our thoughts and observations.

It’s so healthy.

It’s true that frequent travelers tend to dash about, mindlessly hooked to their device of choice, but I think even they must feel much of the same.

The other day as I checked my blood sugar on the plane I noticed how uncomfortable it made the older man next to me.  So I started talking.  I explained what I was doing and why.  I shared the results, “141, I’ll take it!”  The man looked out the window and let out a deep breathe.  He said, “So many people have diabetes.  It’s going to ruin our country.”

“If we let it”, I said.

“Well, I’m glad you seem to be taking care of yourself but what about everyone else?  Why can’t people just eat better and exercise?”

I went into clarifying some myths and misconceptions about diabetes while the man listened intently.  Then I said, “I wish we could bring everyone out on a trip somewhere and educate them all about diabetes and health here in the airport.”

The man laughed out loud and furrowed his brow at me.  “Oh?  Why at an airport?”

“I don’t know, just seems like a good place for all sorts of educational metaphors to really click.”

“Oh? Tell me more.” he said.

“Ok…well, just as with travelling, living life with diabetes is full of possibilities and opportunities.  In fact, every morning we get to face a new day with blood sugars that haven’t happened yet and strive to make the best of them.  Each day we have the power to choose what we are going to do with our health, you know, what we’ll eat, whether we’ll exercise or not, and how we’ll approach challenges.  We can get organized with our lifestyle habits and diabetes management routine for better, more consistent results.  We can choose to take inspiration and support from everything around us, from the people we encounter to the day’s weather.  We can learn to accept the risks of living with diabetes and not let them slow us down just as we choose to get on a plane so we can go somewhere even if we’re scared to do so.  We can learn to handle anticipation so we can move past unsightly blood sugar results.  We can learn how being patient doesn’t mean we have to wait forever and that eventually, we’ll get where we’re going.  We can learn how to trust others and ourselves to do the best we all can.  I just feel like the airport is a peaceful and safe place for learning, I don’t know.”

The man stared blankly at me for a moment and then scratched his head.  Then he laughed again and said, “And on the plane, we go over how to bring up diabetes with strangers by testing blood sugar in front of them.  Then they can ask questions, be educated, and hopefully feel compassion and understanding and spread that around.”

“See?  It would totally work!”

In between chuckles the man said, “It did, today.”

Do Something You’re Afraid Of

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It’s Fabulous Friday where we celebrate ourselves or at least remember to.

When we’re afraid of doing something because of the possibility of failure, we don’t honor the incredible people that we are-capable of just about anything.

So today, I ask you to consider doing something you’re afraid of.  And diabetes will seem a little easier.  At least that’s what I have experienced this summer.

You know that movie with Jim Carrey where he says “yes” to everything and it changes his life?  Well, I kind of did that this summer.  I responded affirmative to everything that came up.  Did I overschedule myself a few times?  Yeah.  Did I freak out over some of what I was attempting?  Oh yeah.

But, it was so worth it.

Of course, I don’t mean trying something dangerous.  For me, it meant public speaking, doing more health coaching, participating in as many diabetes related projects as were offered to me even if they made me uncomfortable or seemed difficult.

Part of my fear was not having much downtime and having to multi-task.  But I learned I could mentally get myself to accomplish routines that would have killed my non-housewifey self a year ago.  I did treat myself to ice cream during times of panic, I’ll admit.  I did watch all 11 seasons of Frasier on Netflix (this was therapy because the incessant laughter the show gave me relaxed me and kept me sane-I swear!)  Yet, I realized by working almost every hour of every day that I had only been afraid of a little discomfort and no more.

Something I’ve also been doing that I’ve been afraid of is getting rid of a lot of my possessions.  The funny thing about that is the thought of doing it is what hurts.  Actually doing it feels totally liberating!

For the first time since I can remember, I’m looking forward to Fall and Winter.  This is a big deal for me because I struggle with cold weather and the emotional and traditional Holidays.  But, now I’m all sunshiny about it and I don’t recognize myself.

Doing something we’re afraid of sparks something really great in our minds.  It gives us a feeling of immense relief, “Oh, it wasn’t that bad!” and a major sense of accomplishment “OMG I did it!” and my favorite part, it gives us a feeling of wanting to push further and raise our personal bars to a new level.  Essentially, doing things that scare us help us dream big.  And if dreaming big turns into actionable steps…well, monumental joys await.

So I encourage you all to try something you’re afraid of.  Even if it seems insignificant.  If you’re afraid of it, it matters.  Try it.  It eases anxiety and paranoia that we people with diabetes tend to have extra amounts of.  And the confidence boost and feeling that anything is possible will lift your spirits.  And maybe you’ll get a renewed strength and motivation about your diabetes management.  I know I did.

What have you done lately that you’re afraid of?  Share in comments!

Peer to Peer Support Reigns

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My type 1 sister Ana’s diabetes themed artwork-you can probably guess what this is, right?

 

I definitely don’t think of myself as an “A1c Champion”.  I just think of myself as someone who finally stumbled upon what works and what doesn’t for myself in the realm of diabetes management because of my being excruciatingly tired of the alternative and unwilling to settle in life.

By keeping healthy and by being rather disciplined with my diabetes management, an opportunity opened up for me to interview for a program called, A1c Champions.  This program sends people with diabetes to lead discussions with other people with diabetes.  Peer to peer support is a brilliant idea and basically my motivation to start this blog in the first place.  So to be able to get out there and talk to people face to face, tell my story, and show them that it’s never too late to turn things around is like a dream come true.  I’m happy to report that I passed my three interviews and will be training later this year.

It’s a dream come true because I wish I had experienced this opportunity as a teenager with uncontrolled diabetes.  I would have loved to see someone with diabetes come talk to me about how they manage to stay healthy and how they too, have struggled.  I did have one experience like this but this woman said she always had taken great care of herself and this made me feel like I couldn’t relate to her.  I also had plenty of people try to cheer me up and motivate me but none of them had diabetes and therefore their words didn’t have the weight attached.  I didn’t feel understood and therefore it was like their words weren’t meant for me.

So to be able to talk to someone who is where I used to be and tell them that I really understand where they’re at and have been there is something I really want to do.  For the little kid inside me.  For the sake of helping others avoid the years of suffering that I recall having.  For those who don’t feel empowered about their diabetes.  For those who feel like hopeless failures.  Before the fabulous “You Can Do This” project came about I wrote one reason on my site for wanting to blog and it was, essentially, to spread the message to others with diabetes that, “You can do this!”  I think that message is extremely powerful and empowering.  And more so when coming from one’s peers.

So if you’re interested in becoming an A1c Champion, check out their website here.

And if you haven’t already participated in the “You Can Do This” Project that Kim Vlasnik launched last year, then I highly encourage you to do it now.  Do it for someone who sees themselves in you.  Or if you need the therapy, watch videos and take comfort in knowing you are definitely NOT alone.

For the Love of Advocacy

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I have always been very nervous about public speaking.  In elementary school I was evaluated for mental retardation because I found it so hard to speak in front of teachers and classmates.  In middle school I used my diabetes as an excuse to not have to give my speech in class “My blood sugar is high, I just can’t do it today.”  In high school, I got really goofy with my public speaking as a way to curb my fear.  I used humor and I always began by saying how nervous I was so people wouldn’t whisper to each other “she seems nervous right?”  It seemed best if they just knew and then rooted for me to not bomb my presentation.

I did several public talks about my diabetes and other topics as a teenager at camps and church youth groups.  I have done presentations for work, twice presenting in Spanish to dozens of male contractors, an intimidating crowd for me.  Each time I was sick to my stomach, trembling, and 100% in love with the idea of speaking in public.  I really enjoy it but it has made me wonder why I like torturing myself.

I think I love it because I am SO moved by public speakers.  So incredibly moved and inspired.  And if there is the slightest chance that I could do a little of that for someone else by sharing my story or struggle or anything, then the nervousness is more than worth it.

I’m hoping to participate in the A1c Champion’s program.  I’m also going to be presenting in public this year in various local workshops about nutrition and other wellness topics to people who want to hear what I have to say.  I hope to be relaxed through it all but maybe also accept that perhaps part of my nervousness is just extreme excitement over doing something I really, really want to do that just might possibly help someone.

So mostly, I think I want to do it for the love of advocacy.  Since I was little, speaking up to help someone has always been one of my favorite things.

The Sushi Pushers

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My husband gets sushi at the same place every time.  The guys at the sushi bar know him and enjoy chatting in their native language with my husband each time he stops by.  Sometimes we stop by together and they always wonder why I don’t get sushi, too.  I have always brushed it off saying I just don’t want any when the truth is that I love sushi, but I avoid rice because it makes blood sugar management a little too complicated for me.

The other day I went to this place alone and was thinking of getting my husband some sushi.  I got him the usual when I got asked the usual question in Spanish, “Why aren’t you getting any for yourself?”  I said, “No, I just don’t want any, thanks…” Then they offered me a free sample to eat on the spot from a little bowl.  For something like this I’d typically give insulin and wait a few minutes before eating.  So I didn’t take the sample.  They asked again, “Really!  Try it!  It’s got shrimp and avocado and onions!”  I have witnessed them doing this to all the customers that stopped by and rarely did anyone refuse a sample.  That all sounded delicious to me but those little sushi rolls still had rice so finally, thinking about how I’m supposed to be a diabetes advocate, I explained to the guys the real reason.  “I have type 1 diabetes and must give insulin before eating anything and I don’t want to do that right now.”

Silence.

“But you’re young and you look healthy.”  “Well, I am young and healthy.”  Then I explained what type 1 diabetes was and they asked me about how I give insulin.  I explained that I give insulin shots as needed to bring down my sugar and to cover the carbs in any food I eat.  One guy said, “I didn’t know healthy people could get diabetes…”, shaking his head slowly.  Another nodded enthusiastically and said, “Good for you, you seem very happy for a person with something so serious.”

I thanked them for listening, they assured me they would no longer push me to sample sushi, and we said “adios”.

There really are countless opportunities to advocate for our condition.  We should take these opportunities, even if someone has been rude, because if not us, then who?

If We Don’t, Who Will?

Thanks to Idea Go for the picture

If you don’t fight for your condition or plight in life, who will?

Everyone has their “something” going on and their own cause to fight for.

If you have diabetes, I encourage you to speak up.  We need your voice.  More importantly, YOU need your voice.

You may not find it today.  You may not use it tomorrow.  But, soon, when you’re ready, join us.  We’ll be here.

Because seriously, if we don’t, who will?

Dressing Up and Cheering Up for the Endo Visit

Fingers crossed for a good A1c


I went to my endocrinologist appointment yesterday.  I was nervous about this appointment because if they were to find my blood pressure high again, I’ve been told meds will be considered.  And I would like to not have high blood pressure or more medications so I was a bit of a wreck.  I got up early and fixed myself up more glam than usual.  The usual varies according to my mood but I don’t normally wear much make up and I often wear clothes that should have been run by an iron first.  I decided to walk into the endo office looking put together, rosy cheeked, and most importantly-happy because when I was little, I’d see miserable looking people at the office and once home, I’d cry my eyes out.  It’s not that I thought they looked bad, it’s that so many of them looked sad and in pain and I feared I would become like them.  I’d leave endo visits feeling my life was over before it had begun.

After I arrived, signed in, and sat down, I saw a 6 or 7 year old girl walk in with her mom.  She was smiling ear to ear and had her hair neatly tucked under a baseball cap.  She wore a Nike T-shirt tucked into some cargo pants along with a few beaded bracelets.  She was adorable and then I practically burst with glee when I saw her pink sparkly shoes.  You gotta love a girl that puts an outfit like that together.  When the nurse came and called a name the little girl ran up and said, “That’s me!”  The nurse said hello and “What cute shoes you have!”  The little girl cocked her head to the side and said, “I dressed up for my endo visit today”.  I had to blink away the water in my eyes.  The nurse followed with, “But where is your dress to match your shoes?”  In my mind I’m cheering “girl power, girl power!” and the girl says defiantly, “This is what I like.  I dressed up because I want to make diabetes look good”.  Then her mom stepped in saying something about how she has been trying to teach her daughter to dress sharp and clean when she doesn’t feel well or is afraid because it will make her and others feel better.  She explained that going to the doctor made the little girl feel afraid.

I was too overcome with emotion to say anything.  I was trying to give hope to little girls like her by appearing happy and healthy and there she was beating me to it.  I wanted to jump up and tell her she was awesome and her outfit rocked but instead I sat and humbly watched the moment play out.  It was a scene that will forever soften my mood whenever I’m sitting in a doctor’s office.

A few minutes later it was my turn and I smiled at the nurse, said hi, and she said, “Geez, you look nice, too.”

“I want to make diabetes look good”, I said.

My Dream Improvement to Current Diabetes Technology

This needs a serious upgrade! Courtesy of Suat Eman

 

This month’s DSMA Blog Carnival prompt is as follows:

Over the years diabetes technology has come a very long way from the days when syringes were boiled and sharpened, and sugar was checked using droplets of urine and fizzy tablets in test tubes. Today we can choose from an array of blood sugar meters, insulin pumps, carb counting apps, data uploading programs – technology is woven into our diabetes lives. But although technology has come a long way there is always room for improvement, right? So this month give us your complaints, your ideas and your technological wishes and tell us:

What improvements or adjustments would you make to current [diabetes] technology?

My weakness is dealing with technology.  I love what it does for me but hate how it complicates things for me.  I’m more into words and ideas than I am stuff so as nifty as technology is, I get lost in it.  I can’t even work a dvd player without hard concentration.  It’s not that I’m dumb, it’s that I don’t have motivation to learn these things.  Someone nearby always knows for me anyway :)

Therefore this is what I would like:

I would like a nifty little watch that looks like this and tells me what my glucose is at all times including up and down arrows to show trending, like the CGM does.  I would like it to be 99.9% accurate, 99.9% of the time.  It would also, of course, show me the time.

This one thing would take away the need for a meter and the CGM.  I wouldn’t have to spend money on those darn test strips, the only expense would be the watch and batteries.  I would love a device that functioned like the CGM receiver to come with this watch so that parents or other caretakers can receive alarm notices and all data.  The watch can be connected to the computer to upload the blood sugar information so people don’t have to log numbers. 

I also want this gadget to help pump me up through the day.  If I’m low I want it to send my cell phone a text that says, “Get out your glucose tabs!  Everything is going to be ok”.  When I’m high I want a text saying, “oops, lol”  or “you’ll get it next time” or “take a deep breathe”.  When my blood sugar is on target without any up or down arrows I want a text that says “Yes!  Keep up the great work!”  If I’m on target and trending upward I want a text that says “Whoa, what’s going on here?”  If I’m trending downward I want a text that says “Lookout!”

I want the ability to turn off those texts at any time.  They’d probably get annoying after the first day…

That’s my dream thing aside from a cure and aside from the closed loop system that we’re all hoping might work as good as intended…

Oh and if I couldn’t have that I suppose I’d settle for reusable test strips.  At least then I’d have a bigger bank account with which to buy more diabetes technology!

What improvements or adjustments would you make to current diabetes technology?

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