Tag Archives: diabetes and advocacy

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?

If You Do One Productive Thing Today, Let it Be This

Today, it’s Friday and we’re excited about the upcoming weekend.  Maybe we have big plans for Saturday night.  Maybe today we’ll relax at home with our loved ones.  We’ll give another shot or change another infusion set and check our blood sugar 6-10 times.

But somewhere out there is a little girl who is going to make her daily 10 mile trek in bare feet just to receive her insulin shot at a small clinic and have her blood sugar tested.  She’ll only get one shot today and one blood sugar test.  Who knows how she’ll make it through the day.

And somewhere else a person is winging their diabetes because they were never informed about carb counting and have no way of knowing how much insulin to give at any given time.

And somewhere, perhaps closer still, is a boy whose mom has to quit work because there is no one at her son’s school legally capable of giving him his life-saving medication.

We want to get President Obama to show up at the United Nations Summit on Non-Communicable Diseases (NCD) in September where he is not planned to attend.  It would send a strong message if he attended to push for better treatment for people with diabetes.  This means access for everyone, in our country and abroad to all the equipment and medicine we need to not only survive, but thrive with diabetes.  This means getting adequate information and education to those with diabetes about how to take care of themselves.  And this means equal and just treatment in the workplace and at school for adults and children with diabetes.

It’s in all of our best interest to support this. 

The International Diabetes Federation is willing to print out the postcards to mail to the White House if we just electronically sign a card online.  Go here to do this.

Be part of the solution.

And have a fantastic Friday :)

XOXO

Sysy

The Greatest Injustice in the World of Diabetes

The President of the International Diabetes Federation speaks in this video.

I was compelled to write about it.  He makes a passionate case for the need to cause an uproar of outrage against the injustices regarding diabetes.  Every day, people die in the world because they don’t have access to life-saving insulin.  It’s an outrage that a person should have to live with needles and finger pricks and the cost of those things.  It’s an outrage that a person should have part of their childhood torn away.  It’s an outrage that a person should face daily risk of death and daily worry of future complications because of diabetes. 

But what do we call a child, an adult, who dies because they were not even given the chance to fight diabetes?

If something disrupts my insulin supply, I am dead before 2 weeks pass.  It’s that fast.  Insulin is THAT monumental to someone with diabetes.  I walk around seemingly healthy, without a care in the world and unless you got to know me you wouldn’t know that I walk around with my life saving insulin in my purse at all times. 

Let me tell you a story that illustrates how I feel about my life-saving insulin.  Years ago when I was about 19 years old, I was leaving a club where I had just spent some time with friends, dancing.  On my way back to my car that night, someone sprinted past me and snatched my purse from my hand.  I know what a safety conscious person does and normally I’m that person but the only thought that went through my mind was, “My insulin and my glucose meter are in there!”  So I ran.  I took off running after a theft.  Poor guy, he didn’t know he had my insulin and that to me, that was like ripping off my arm.  So I left my heels on the pavement and I sprinted after the guy.  Back then I was really fast and I caught up to him because he didn’t think I’d chase him.  He went over two cars at some point and I followed him right over those vehicles.

I knew that screaming was a good thing because it got people’s attention so I shrieked like a mad woman, “Give me back my purse, you don’t know what’s in there, I need what’s in there!”  I’m was quite loud and got the attention of a police officer on his bike.  He followed after us and pleaded for me to stop.  I couldn’t.  I had this one track mind and the thought that I could easily replace all of my purse’s contents did not cross my mind.  We reached a dead end where the scared-out-of-his-mind guy threw my purse at me and just heaved in and out in exhaustion.  The police officer told me I was insane as he ran over to the theft-which just looked like a 16 year old boy to me. 

 There is a psychological effect that occurs in a person whose life relies on a drug, I think.  There is a particular pain that comes with knowing that your life relies on the contents of a tiny vial.  It’s sort of humbling but it’s also frustrating.  I think that’s what I acted on when my purse was taken.  I felt, panicky, in a sense and also as if some great injustice had been done to me.  I thought, “How dare you steal THIS?”

The thing is, I’m lucky enough to always have access to insulin because I have enough money to go to the pharmacy down the street and buy it any time I need it.

To me, the greatest injustice out there in the world of diabetes isn’t how we’re stereotyped or how our lives are so challenged.  It’s not how my childhood was spent largely depressed and worried that I would never fit in or do what I wanted or live as long as I could. 

The greatest injustice is people with diabetes dying because they don’t have access to insulin or the medications that keep them alive.  We’re not talking about someone thriving or being healthy, we’re talking about someone having the chance to live another day with diabetes.  We’re talking about the bare minimum-which by the way, isn’t enough.  But, we should at least be reaching this bare minimum.

We owe it to these people to take care of ourselves, to make good decisions, to be kind to one another.  We owe it to them to be their voice because they hardly have one.  They’re too busy trying to survive.  We’re trying to survive, too but we have so much more than so many others.  As humans we should feel obligated to stand up for one another and make sure we treat others with the same respect we’d have shown to us.  We can raise money for a cure, we can demand improvements on our health care, we can work to put an end to negative stereotypes, but we should also work to ensure everyone receives their most basic natural human right to a fighting chance in this life. 

For someone with diabetes, this chance begins with insulin. 

Click here to say you agree.

The “You Can Do This” Project

 

Sometimes all we need to get through another day with diabetes is the knowledge that it’s possible to do so and that we’re not alone in our struggle.  Kim at Texting My Pancreas started a wonderful initiative called The “You Can Do This” Project.  Here are the details in case you’d like to participate.  If you don’t have a blog, feel free to have The Girl’s Guide to Diabetes put up your written post or video if you just want to get it out there.  The more participants, the more hope and empowerment we send out to others :)

Here is my video blog for this project:

American Culture Revolution for Health

Courtesy of Simon Howden

Courtesy of Simon Howden

 

We hear all the time how America needs it’s citizens to undergo lifestyle changes for the better.  And despite how hard that is, I guess it’s true.  I just think that we’re stuck in a slump.  I mean, if my friends and family and I are used to and enjoy certain activities and foods and many others are the same way, then how are we supposed to produce a massive change that sweeps the nation and improves the health of millions? 

When health care professionals say we all need to do be more active and eat healthier, I can’t help but think about how the typical health care professional is educated to really know and understand what to do and they make pretty decent money for a living, too.  That combination is probably an asset.  What about the rest of us?   

I think we need a revolution.  We’re Americans, we know about revolution.  Our future is in jeopardy as they say and yet how are we supposed to get ourselves out of this slump while being so busy just trying to survive?

I sometimes wonder if our situation will progress to a breaking point.  Maybe a mini revolution will take place.  People will hit the streets demanding particular health care reforms.  Mass numbers of citizens will band together and slowly change their customs and traditions to adapt to the new health movement.  They’ll demand better access to quality foods, more health education in classrooms, and encourage the development of lots of sidewalk additions all over the country. 

When we’re proud of our culture, how do we go about altering it?  I genuinely feel giddy inside just thinking about going to a baseball game and having a hotdog and beer.  I know many of us just love watching Glee at night with our favorite snack.  And popcorn and soda at the movies.  Cookies and pastries at social gatherings.  Our favorite Ben and Jerry’s when we’re sad.  Our favorite cupcake when we’re happy.  Barbeque, potato chips, and pie on the Fourth of July.  I think of all of this and my first inclination is to say, “Well…but it’s on special occasions that we eat this way-no biggie!”  And then I think about how all this can add up in the course of a week.  Next thing you know our way of life is to eat inappropriately.  It doesn’t help that it’s still funny to poke fun at the yoga loving, tree hugging, granola munching types out there.  Although, they are growing in numbers.

So when I think about the task that lies ahead of us I must say I feel quite overwhelmed.  I know it’s hard on willpower and expensive and a hassle to keep up.  I can only hope that my neighbors will create awareness with me, fight for our rights with me, contact our policy makers with me, and slowly adapt our culture to one that is just as much ours as ever-only healthier for our children and their children.

I think we need a culture change because living in the present one and expecting people to break from it is unrealistic. 

How do we do this?  I don’t know exactly, but I will leave you with the quote I always remember when I feel like quitting:

“You must be the change you wish to see in the world”

~Mohandas K. Gandhi

Diabetes Sisters 2011 Conference Recap

diabetessistersgroup

This was the 11-20 years with diabetes group picture

 

When your family is on a tight budget and you decide to spend several hundred dollars to attend a conference…it better be worth it right?

Well, I think the National Diabetes Sisters Conference is.  I’ve got three main reasons why:

1.  Meeting diabetics who have lived well for decades with this disease is some of the best hope one can get and meeting others like ourselves is a great comfort.

2.  A weekend away from family, work, and responsibilities allows time for one to focus on their health and their thoughts about it.

3.  To be educated, to be informed, to be stripped of ignorance is in a word, power. 

When you put this all together, you have what I experienced this weekend.  A feeling of renewed hope and time enough to really assess the information given to me.  As a result, I came back home with a much better vision of what having diabetes 16 years means to me. 

Hope

Over the years I’ve learned more and more about how well one can live with diabetes.  Yet, over the years I’ve also heard a lot of scary stories.  Fear is powerful and overwhelming and during the past 16 years fear has often taken over me as I would half jokingly come to the conclusion that perhaps having a quick auto accident at the age of 40 or 50 would be best for me.  At this conference I personally spoke with women who have lived with diabetes for over 30, 40, and 50 years!  I had heard it was possible but I didn’t hear it enough for it to feel real.  Well, these ladies are not only real, they are amazing.  They are healthy, fit, intelligent, passionate, and they have a lively sense of humor.  Someone literally had to tell me to lift my jaw off the floor.  This was for me, one of the major highlights of the weekend. 

Focus

Being away from my twins for the first time was at first a bit heart-wrenching.  I got over it as soon as I realized I wouldn’t be changing diapers for a few days.  The funny thing is, because my almost two year olds have been with me all their life, I constantly felt that they were in the next room or somehow with me.  They are at an age where they can easily get hurt and so my attention is very much focused on them during the day.  This means that housework, blogging, and my own needs are sometimes neglected.  There were things I had time to think about this weekend without being distracted and it was really helpful. 

Learn

One of the scariest things is learning about diabetes complications.  I was in a room with about 30 women when there was a presentation done about advanced duration diabetes.  I was the only one with tears streaming down my cheeks.  I don’t know if others wanted to cry and could hold it in but I couldn’t.  I cried for two reasons.  Part of me realized that as hard as my diabetes is to deal with now, I can expect more challenges down the road.  It is extremely likely that as every decade passes, something will arise from having diabetes that will be a difficult consequence of having it so many years.  This is an overwhelming thought.  I also cried, however, because I realized that well managed diabetes reduces the risk of complications by a whole heck of a lot.  I have well managed diabetes.  I haven’t always and probably won’t always but at least for now, I’m hanging in there, lowering my risks for complications one day at a time. 

There was a presentation by a cardiologist that I really enjoyed about women and heart disease.  Apparently we are at a much higher risk than men and in our modern age, as the population dies less frequently from heart disease, women with diabetes are dying more frequently from it.  This is very different from men with diabetes and I was amazed to find out the cardiologist didn’t have any ideas as to why women are so much more vulnerable.  As worrisome as this is, I take comfort in knowing that by keeping my A1c down, my cholesterol down, and my blood pressure down, my heart disease risk lowers dramatically.  And so does yours.  Knowing this is power because it means that every day we have proof in our minds that making healthy and consistent lifestyle choices are well worth the effort. 

Some extras

I got to meet some fellow diabetes bloggers like, Melissa and Allison and Stacey

I got to sit while eating my meals (something I rarely do). 

As a member of the conference and I rode the elevator down Sunday morning, we were so kindly flashed by some insane naked man who showed up outside the doors when they opened and then ran away.  I gasped and covered my eyes and the the lady next to me laughed and said, “Well at least he was young-it could have been worse.” 

Presenters

We heard a talk by Gloria Loring who was fabulous.  She was confident and sassy and her message to us was not only inspiring, it was useful.  She advocates for us to breath deeply, to “play the love” instead of the fear, and to turn negative self talk into positive self talk-something I’ve found extremely helpful in the past few years.  In case you’re wondering, she doesn’t have diabetes but has a son who was diagnosed type 1 at age four. 

My primary motivation to go to this conference was to hear Riva Greenberg speak and I was not let down.  I find her message very motivating to me in particular because not only does she advocate for persons with diabetes to live well, she takes it a step further.  She says we should strive to “flourish with diabetes”.  To live a great life with this disease not in spite of it, but because of it.  To me this message is an extremely important one.  Why not make our diabetes a motivator to serve us to our advantage instead of just getting by with it?  She attended the entire conference and I don’t think I’ve ever seen so many people magically gravitate to one person.  I understood why when I found myself doing the same.  She is very non-judgmental, warm, respectful, graceful, funny, and just plain awesome.

Ann Albright finished up the day on Sunday and really impressed me, too.  With all kinds of palpable energy she told us to remember this quote: “If you’re not part of the solution, you’re part of the problem”.  At first, this might take people aback.  When you think about it though she has a point.  She said that if we don’t advocate for our rights as people with diabetes, then who will?  If we don’t set a great example of what living with diabetes is like, then who will?  And it’s so true.  If we don’t work to change things for the better, we’re just part of the population of people complaining about how bad some things are.  If we all do something about it, we’ll have less to complain about.

I want to share a few tidbits with you all about things I learned or observed:

-The women with type 1 who had it for many years at this conference often shunned processed food.  I hate to admit it but I sort of watched them as they ate to see what their choices were and I saw a lot of vegetables and chicken, olive oil and vinegar for salads, fresh fruit and eggs for breakfast, instead of pancakes and syrup and rolls, for example.  I couldn’t help but notice and think that I will continue with whole, unprocessed foods as the bulk of my diet.  It works for me for a reason and it seems to be working for others.

-Brandy Barnes, the woman who started Diabetes Sisters was great.  She is definitely passionate and devoted to the cause of women and diabetes.  In other words, she is the real deal and I think that she was definitely on to something when she decided to focus on the unique aspects of women living with diabetes.  Her dream of a “sisterhood” is a wonderful concept when you consider the natural bond women tend to have.

-Many of us missed having men at the conference which is a natural sentiment.  However, how do you openly and comfortably talk sex, pregnancy, and menopause with men in the room?  Perhaps a little bit more difficult.  So I really appreciated this set up.  Someone had the idea of gathering the husbands and boyfriends next time so they could talk to each other about their experiences of living with diabetic wives and girlfriends.  Boy, would I love to be a fly on that wall.

-My blood sugars don’t normally go over 200 and during this diabetes conference weekend they stayed between 200-300 as I ate small servings of salad, chicken, eggs, and green beans.  Ugh, go figure! 

-I am not a “girl’s girl” type and I am uncomfortable in crowds and I still loved this conference.  If you think you would or wouldn’t enjoy this I would still highly recommend it.  You deserve to take a little time to learn about your diabetes, spend some time thinking about it and focusing on it, and talking to others who actually get it.

-There were many other speakers who gave fantastic talks and provided helpful diabetes related information.  Almost all talked about our thoughts influencing our diabetes management in some way.  (There must be something to that!)

Last but not least I did not get lost, although the GPS did annoy me with a constant song called  “recalculating, recalculating, recalculating”  How ever did I make it there and back?  ;)

 

The Importance of the Right Road Map

Photo courtesy of Luigi Diamanti

Photo courtesy of Luigi Diamanti

 

Someone asked me what the difference was between my “achieving” an A1c around 5% versus my past A1c’s much higher than that.  They wanted to know the secret to going from a high A1c to a lower A1c.

Well, interestingly enough, I want to first say that there is no more sacrifice involved.  I work just as hard as before.  I also feel a lot of frustration and anxiety just as I did when my diabetes management was less than ideal.

So how did I change the number?  Well, you can read a lot about it all over this site but essentially what happened was I got a new road map. 

I informed myself about the glycemic index and the dangers of processed foods.  So then instead of cereal with milk for breakfast, I started the day with an egg and a slice of whole grain bread. 

I learned about the power of positive thinking (as dorky as that line sounds) and instead of thinking that I was a failure, I began saying to myself that I was a making great progress. 

I realized that people all over the world walk miles to and from school and work and so instead of thinking that a one mile walk was a great workout, I started believing that 3 miles was great and doable. 

I learned what a healthy BMI was and that my bone structure or frame is considered to be very petite.  When at 165 pounds my doctor told me I didn’t need to lose weight, I decided he was wrong and did all of the above. 

Some nice things happened along the way.  My insulin resistance lowered dramatically.  This made blood sugar management much easier because I needed less insulin.  My meals became easier to bolus for.  My body responded nicely to the 3 mile a day walks which turned into runs.  My confidence grew slowly but surely.  After a short while I was keeping an A1c in the 6% range, which I was really happy with.  I lost weight and got my body fat under 25% where it needed to be.  These mini successes made it really hard to go back to old ways.

So yes, there are concrete things I did to change a lot of outcomes but as you can see my road map, or set of beliefs were what really made the difference.  Back when I had a 10% A1c, I tried super hard.  I did the best I could to give the right amount of insulin for my pasta and chocolate milk.  I tried really hard to exercise through a 300 blood sugar average.  I relentlessly scolded myself about doing better. 

See, that’s just it.  Effort can be misplaced.  What good is it to try hard, commit, allot time, and persevere if you believe that you’re a terrible diabetic, that doing groceries is a major workout, and that you can settle at 35% body fat and be really healthy?

Having the right road map isn’t going to magically solve your problems.  It will however, make it possible for you to reach your destination.  And what we all deserve is that opportunity.  We are strong, smart, and capable enough to do the rest.

It’s All Relative

 

“We must always think about things, and we must think about things as they are, not as they are said to be.”

~George Bernard Shaw

 

I had a friend who said she ate really healthy because she ate three salads a week alongside fast food meals.  I had another friend who said she ate, “pretty good” even though she never ate junk food, never overate, and followed a diet that might make a dietitian stand up and cheer. 

This is part of what makes the internet such a confusing place.  Many of us take part based on what we perceive.  Some might think a mile is a tiring run but I have a few friends who might consider that a very brief warm up.  Just as someone might feel that a family of four cannot comfortably live making less than 100,000 a year and someone else’s family of four feel quite cozy on 40,000 a year. 

It’s all relative.  Just something to keep in mind as we read through loads and loads of personalized info. 

A lot of things about diabetes is based upon an individual’s unique perception.  It’s called their opinion and you’re graciously entitled to your own.

Have a wonderful weekend!

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