Category Archives: Advocacy

Day Three of Diabetes Blog Week, 2013.

diabetesblogweek2013

Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

Some people are sharing their diagnosis story for today’s topic.  I don’t really remember my diagnosis since I was only 5 (and have a horrible memory!).  Some are sharing stories of scary low or high experiences.  I am blessed to not have any true life or death experiences to share.  Some may be sharing successes worth celebrating or of friendships made worth cherishing.  While I do have some of those, I have a more memorable day relating to diabetes.  I usually focus on the positive and do not like to dwell on the negative.  I hope if you know me, you have picked up on that.  However, the most memorable day in my diabetes world happens to be a very sad one.  The day my father passed away.

Some people may even be sick of hearing about this.  And I apologize if that is true.  But that day, my life changed forever.  Not just because I lost my father.  But also because what caused his death was diabetes.  The very disease that I live with and have had for almost as long as he had.  As much as I remind myself that things were different during his diabetes lifetime.  As much as I tell myself that his tools were very unlike the ones I use today.  As much as I try to focus on my attitude being different than his was.  The fact still remains that diabetes took my father’s life.  Even before he died.  And that will forever be etched in my soul.

Day Two of Diabetes Blog Week, 2013.

diabetesblogweek2013

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? 

Diabetes is freaking expensive.  Those of us living with it, know that.  Even if you have insurance, it can still be costly.  Insulin, test strips, needles, insulin pump supplies, ketone testing products, Glucagon-Like Peptide-1 (GLP-1) Receptor Agonists or Biguanides, adhesive products, lancets, glucose goods, CGM sensors, office visit co pays, the list seems to go on and on.  I have been *extremely* fortunate to have good health insurance both under my parents and since I’ve been working on my own.  I know some people with diabetes who do not have health insurance at all.  And I cannot even imagine the financial burden that can cause.

For about 16% or more of the population in the US that are uninsured and those who have insurance but still carry a hefty bill every month, I would love to start a petition that would establish a statute that provides affordable diabetes supplies to everyone without any restrictions.  I know this would be a tremendously daunting and complex effort.  I know there needs to be money in order to make this happen.  I know some of this could be addressed with the Patient Protection and Affordable Care Act which began in 2010.  But I wish something like this could seriously be implemented.  None of us asked for this disease.  None of us could have avoided having diabetes.  None of us planned for a certain (large) percentage of our earnings to be spent on diabetes.  None of us want to be stuck in a job strictly for the benefits.  None of us want to be told how many times per day we can test our blood sugar.  To live a healthy life with diabetes, there are many tools needed and those tools cost money.  And I wish for so many people that wasn’t such a hardship to them.

Day One of Diabetes Blog Week, 2013.

diabetesblogweek2013

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

My diabetes health care team consists of two people for the most part – my endocrinologist and my diabetes educator (CDE). I am fortunate to consider my relationship with both of them pretty darn good.  I spend more time with my CDE, M,  at each visit (although I hate to admit it’s been a while since I’ve seen her) since we go over in more detail my blood sugar readings, glucose monitor history and other records like food and exercise.  My endo, Dr. K, goes over things with me at more of a high level.  Since M and I do a lot of poking and prodding while together, I feel like she has a true sense of my day to day management.  I also talk more with her about my advocacy efforts, social media involvement included.  With that being said, I think there is something that I would like Dr. K to know.

I’ve started with minor complications.  And this seems to surprise Dr. K.  I’ve only been seeing her for about 2 years.  (I’ve been going to that diabetes practice for about 15 years but Dr. K took over for my old endo when she left for a different practice)  For this reason, she has only really seen the better side of my diabetes management.  When I first began being treated here, I was on MDIs of a sliding scale with an A1c in the 8%-9% range if I had to guess.  Then around 2006, I got much more serious about things and got an insulin pump.  It was ever so slow progress, but over the years since then, there has been improvement in both my A1c and my overall management.  Maybe in her eyes, this is how I’ve always been.  But I haven’t.  I’ve also have diabetes for 31 years.  This is a long time of high and low glucose levels.  Much of that time with higher than desired levels for various reasons.  These things can lead to complications. I’ve seen what can happen through my father.  And I am scared to freaking death of that.  I’m doing everything I possibly can, now, to keep the complications to a minimum.   I sincerely appreciate her goal of keeping my A1c at a desired level, without too many lows, to keep my diabetes health in check.  I’m very glad she realizes the importance of that in this stage of my life.  But I’m not sure why she’s surprised at what has started in my body.   I don’t think she’s ever asked what my diabetes was like all those years ago.  Maybe that would help her put things in better perspective.  Even so, I’m hoping we can continue to work together to keep me alive and my organs healthy for a long, long time.

Best of April ‘Betes.

bbblogo-final-e1309479808835

Happy May everyone!  (where on earth is this year going??)

So today is the day.  I have the honor of announcing the diabetes blog warriors for the month of April.  I had quite a bit of reading to do in order to pick the warriors!  And some tough decisions to make.  But the pleasure was mine in having to read it all.  This community rocks.  That is all.  Now onto what you’ve all come here to find out 😉

Best Use of Humor – Jacquie

Best Use of Photography – Heidi

Best Advocacy – Reva

Best Reference to a D-Celebrity – George

Best Story of a D Meet-up – Briley

Best non-D Related Post – Jeff

Best Post by a Type 1 – Shannon

Best Post by a Type 2 – Sir Bob

Best Post by a Type Awesome – Moira

Best story of a D-mistake – Katy

Best Motivational Post – Nikki

Best Diabetes Art – Meri

congratulations

There were no nominations for Best Vlog, Best Recipe or Best Post by a LADA/ Type 1.5/ Not otherwise specified.

In all honesty, all of these posts were fantastic.  And I got to learn of a few new blogs that I haven’t read much of before.  (time to update the blogroll!) A huge thank you to those who nominated as well as those who had submissions.  Without our stories and participation, our advocacy would not exist!

Scott S.

Kate

Hallie

Lorraine

Diabetes Mine

Dave

Kim

Wil

Christina

Becky

Stephen

Alanna

Christel

Renza

Laura

Bennet

Jess

Sara

Alecia

Scott E.

Brittany

Rachel

For those who would like to add the Best of the ‘Betes Blogs button to their own blogs, please use this script: <div align=”center”><a href=”http://www.bestofthebetesblogs.com&#8221; target=”_blank”><img src=”http://momentsofwonderful.files.wordpress.com/2011/06/bbblogo-final-e1309479808835.png”></a></div&gt;

Best of the ‘Betes Comes To Portable Pancreas Girl!

Hi there.  Remember little ol’ me?  I hope so 😉  Even though I’ve been super busy with work and some fun traveling and more work, I’m here with an announcement.  I am honored to be hosting the Best of The ‘Betes Blogs for the month of April.  If you’re not familiar with what that is, let me tell you.

Here are the categories:

Best Use of Humor
Best Vlog
Best Recipe
Best Use of Photography
Best Advocacy
Best Reference to a D-Celebrity
Best Story of a D Meet-up
Best non-D Related Post
Best Post by a Type 1
Best Post by a Type 2
Best Post by a Type Awesome
Best Post by a LADA/ Type 1.5/ Not otherwise specified
Best story of a D-mistake
Best Motivational Post

Best Diabetes Art 

Think of blogs you have read or will be reading during this month, take note of any posts that you think are a perfect example of one of the categories listed above (please no self-nominations). Email bestbetesblogs@gmail.com or send a DM to the Best of the ‘Betes Blogs twitter account (@bestbetesblogs) with your nominations.

A nomination would look something like this

Sara (include link to blog if you have one) nominates Sprinkles for the Best Story of a D-Mistake (link to the specific post you are nominating on Sprinkles’ blog)

You do not need to have your own blog to nominate – anyone from anywhere can make a nomination!  Come back here or visit BestBetesBlogs.com on May 1st to see the winners.  Easy, peasy.  I like this idea because it gives exposure to some great blogs out there.  And provides some great reading material for everyone.  So get to it.  Send in your nominations!  It’s always open so you have from now until midnight (EST) of April 29th to submit.  Thank you Sara and George for bringing this opportunity to nominate blogs in order to connect everyone’s circles together and allow people to expand their network of support and encouragement 🙂

Extra Care.

Has it really been this long since I’ve written??  I’ve got lots going on it seems.  This particular post is overdue but I’m finally getting to it!

A few weeks ago, some folks from media relations at CVS Pharmacy reached out to me to see if I was interested in receiving more information on their ExtraCare Advantage for Diabetes savings program.  Being that I do use my local CVS as my primary pharmacy for both prescriptions and over the counter items, as well as being a regular ExtraCare member of theirs already, I agreed.

A short time later, I received a package full of stuff.  I mean full.

IMG_1946

Sugar free cough drops, sugar free candy, toothpaste, a toothbrush, healing lotion, sugar free cough medicine, glucose tablets, socks, sugar free aspirin (did you know that existed?  I didn’t!), needle collector, etc.  I particularly liked the socks – I sometimes have an issue with my socks being too tight at the top, creating a mark which I would imagine is not so good for my legs.  I will certainly be on the look out to buy some more of these.  I also appreciated being able to try the Diabetic Tussin cough medicine.  I use cough medicine more than when I’m sick due to the severe allergies I have.  I find myself waking up during the night coughing a lot so I keep a bottle on my nightstand.  I typically use Robitussin and never thought it was bad for me using that type of product.  However, if I had the option to use one that is sugar and alcohol free, I could gather it would be better for me, despite how horrible it tastes.  All of these products, even some you wouldn’t think of,  specifically cater to people with diabetes.  I think this is something that can be very beneficial to a lot of people.

Being a member of the diabetes program, you are eligible for double ExtraBucks rewards (which if you receive ExtraBucks already, you know they are pretty generous with rewards), special offers and savings as well as a newsletter delivered via email that includes information, recipes and offers.  All it takes is a minute or two to sign up.  I think it’s a great program to help with the expense diabetes supplies can cost us.  And we all know, diabetes ain’t cheap!

The feedback on the items sent to me and the ExtraCare Advantage program is strictly my own opinion and I want to thank CVS for taking the time to share with me their products and for offering a program designed to help people with diabetes.

A Valentine’s Day Gift Beyond Flowers.

If you happened to notice some of the buttons I have on the side of my blog, you will see one for the Life for a Child program, established by the International Diabetes Federation in 2001.  The purpose of the program is to get life saving insulin to children in need in developing countries.  Living with diabetes for over 30 years, once as a child, I know first hand the expense insulin and other diabetes supplies can be.  I admire the IDF for putting a program like this together.  I am all for helping those less fortunate than myself and I do so whenever I can.

This year as Valentine’s Day approaches, a few great members of the diabetes community have come together to start a campaign, if you will.  The object of the Spare a Rose Save a Child initiative is to spread the word about the Life For a Child program in order to get life saving insulin to children who need it most.  We as a community all over the world, can make a huge difference.  If I lived in a country that didn’t have insulin as accessible as it is to me here in the US, I would love to know there were others around the world willing and able to help me.  Or more importantly, if it was my child.

So let’s use our voices and share the information about this program.  If you have a blog of your own, write a post about it.  If you are part of the Twitter-verse, share it there using the hashtag #sparearose.  If you’re on Facebook too, let all your friends there know about it.  I will be doing all of these things, plus making a donation.  Please click on the picture below if you’d like to contribute yourself.

Spare_a_Rose_small

Together, the diabetes community is strong.  Let’s show the world we mean business!

New Good Reads.

When I was growing up with diabetes, there weren’t many books around that I knew of on the topic.  These days, I’m happy to say there are more book resources available to people with diabetes and their loved ones.  And some of them are even written by people I know and respect.

I wanted to share some recent books that are out there.  The first is Ginger Vieira’s new book Emotional Eating with Diabetes.  I read her first book Your Diabetes Science Experiment and loved it.  I’ve also worked a bit with Ginger on my own eating and exercise habits and love how Ginger works with each person on what fits their individual needs and lifestyles.   If anyone can help you create a positive attitude about food, it’s Ginger.

The second is Diabetes Do’s & How To’s by Riva Greenberg.  Riva is a well respected member of the diabetes community, being diagnosed with T1D in 1972.  (And a great travel mate 🙂 )  She contributes to the Huffington Post regularly as well as the author of 50 Diabetes Myths that Can Ruin Your Life and The ABC’s of Loving Yourself with Diabetes.  With her new book, Riva strives to guide people with their diabetes self care, avoiding common confusion and feeling overwhelmed.

Living with diabetes myself, I don’t get the viewpoint of being a care giver for someone with diabetes.  It has its own challenges and thinking back, I’d never really known what my parents felt as I grew up.  Fortunately, there are many parents of children with diabetes in the community and I learn all the time about what that is like.  One book that is currently available is Kids First Diabetes Second by Leighann Calentine.  It explores the many challenges surrounding raising a child with T1D.  Leighann’s insight on taking care of her daughter has been valuable to me, seeing diabetes through her eyes.

A book that is available for pre-order is Life is Short, Laundry is Eternal by Scott Benner.  Scott shares his story of keeping a positive attitude, despite his daughter’s T1D diagnosis, and his experience of being a stay at home Dad.  Scott is a really funny guy and I do admire his outlook on things so I am certain this will be a good read.

World Diabetes Day 2012.

I was diagnosed with type 1 diabetes 59 years after insulin was discovered.  And here we are just about 31 years later and although the tools to oversee one’s glucose levels have improved significantly, we still rely on insulin to live.  Without insulin, the rest is useless.

So on this day, World Diabetes Day 2012, I say thank you to Banting and Best.  I owe you both my life, literally.  Oh and happy birthday Sir Frederick Grant Banting!   🙂

I’m going to try and pass by the Empire State Building tonight to see it lit up in blue.  Let’s hope it’s not a big fat fail like last year!

Advocacy(less).

November has begun and it is Diabetes Awareness month.  This is the time that diabetes advocacy takes on a whole new meaning.    Diabetes education and awareness is extremely important.  In fact, it is critical in order to get the resources we need  to live long, healthy lives.  This is when my voice is supposed to be the loudest.

But my heart is just not in it this year.  I do feel like I am failing as a diabetes advocate.  But with the loss that surrounds me from Hurricane Sandy, I can’t seem to focus.  I wasn’t directly affected by destruction.  But my twin sister was.  And so, so, so many other people.  I will never forget the desperation and terror in her voice when she called me fearing for her and her family’s lives when the water from the beach started approaching their house.  It was the longest moments of my life waiting to hear from her again.  I will never forget the news stories of neighborhoods close by, just gone.  I will never forget the sight of her neighborhood or her house from the destruction.  I will certainly never forget the compassion and generosity of friends, family and complete strangers to her and others.

I know it will get better.  And I’m hoping in a couple of weeks when things calm down a bit, I can focus again.  Until then, please don’t mind the absence of my advocate voice.  I’m there in spirit and commend all of my diabetes community friends for all their efforts.  My heart is just someplace else right now.