Category Archives: Community

Retweet Mission.

Advocacy, Community, Events

A lot of people have called me the Retweet (RT) queen or that I can RT like no one’s business on Twitter 🙂  This RT’ing of mine has proven to be meaningful as it has landed me a Health Activist Award nomination from Wego Health. I was overjoyed when I got the email saying the following!

Your nomination details:
Award: Best in Show (http://info.wegohealth.com/best-in-show-2011)
Link: https://twitter.com/#!/PortblPancGrl/
Platform: Twitter
Reason: Stacey is the best RTer out there. She is seemingly always online, RTing links to blog posts to help get the word out!!

First and foremost, I want to sincerely thank whoever it was that nominated me. I feel truly honored, even if I don’t turn out to be the winner.

Second, I thought this would be the perfect time to put out there the reason for all of my RT’ing nonsense. There are a lot of diabetes bloggers out there. A lot. And while we all may have similar experiences from time to time, use similar products or have similar goals, everyone deserves to be recognized for the effort put forth in their blogging. That’s one of the things I am striving for when I RT so many posts – to give credit to that blogger for their writing. Is it possible to read every single post, every single day? Abso-freaking-lutely not. But regardless if I read every single one of the posts I RT, I’m still recognizing that it’s out there. Especially with the hopes that someone who may have missed it otherwise, can go on and read it. Which brings me to the other reason I RT like mad.

One of the things that I think I’m good at is sharing information with others. One of my biggest pet peeves is lack of communication. By anyone. I hate that feeling of being left out or not being in the know. So when I find out about something that I think every person with diabetes should know, I want to share. Isn’t that one of the things that what we, as diabetes advocates, aim for? To communicate the issues that are important to us? Well that is what I hope for when I RT. So I hope none of my followers out there find my RT’ing a nuisance. I’m not just simply RT’ing for the sake of RT’ing. I’m on a mission 😉

There are many more categories to nominate for in the Wego Health Activist Awards. Why don’t you go and nominate someone?

Giving.

Advocacy, Community, Guest Post

Since becoming active in the diabetes online community over the past couple of years, I have found a profound admiration for the parents of children with diabetes.  I was once a child with diabetes however never got to see what my parents went through from their perspective.  But now I can, through their voices.  One of those parents is Scott Benner. He has been a stay-at-home father since his son, Cole, was born in early 2000. His daughter, Arden, was diagnosed with type I diabetes just after her second birthday, in the summer of 2006. Exactly one year later, he wrote his first blog post on his site, www.ardensday.com.  Scott has something new up his sleeve and I wanted to share with all of you so please read on.

 

What do you get the best damn retweeter in the diabetes online community for the holidays? I’m seriously asking because all I got for Stacey was more words to show to other people. There are a few folks in the DOC that I could never thank enough for their support and the Girl with the Portable Pancreas is definitely one of them.

Let me get to the point before you start asking yourself why Stacey gave me this space today. Insulin pumps and continuous glucose monitors (CGMs) are expensive. Even the insured can lack the funds necessary to begin using these amazing devices because of large out of pocket costs. This single issue has long bothered me and I have written about it many times on my site, Arden’s Day. I’ve been trying for more then two years to find a way to put pumps and CGMs in the hands of children that want but can not afford them. I’ve spent countless hours trying to convince those who are in a position to help, that they should – but I’ve had very little success. I almost gave up when I realized that it wasn’t my goal that was faulty but my execution. I was asking the wrong people for help…

The diabetes online community is powerful, maybe more so then any one of it’s parts is aware. When we band together, we aren’t just powerful, we are unavoidable. I’ve seen it in the past, I’ve seen an entity bend to the will of the few. I can’t mention when or who because taking down my petition was part of the agreement that we made when said entity decided to listen. Please trust me, our voices have power.

A number of weeks ago I stopped hoping that I could get devices for children with type I diabetes for free and I turned my attention to finding the money to buy them for the kids myself. I struck an agreement with one device company to purchase their device at cost and with that agreement in place, I am moving forward to set up a charitable organization so that I can fundraise and begin the work.

Starting a charity is expensive, more expensive then my family could bear on it’s own. I had two choices, give up or do something bold. I chose bold. In just a few days amazing gifts have flooded my inbox to support the formation of this dream. They’ve come from all around the world, from North Carolina, Canada and even Finland. They have come in all sizes and types but each with the same sentiment. I am humbled and ready to pledge my time and my heart to making this dream a reality. If you’ve ever had the same thought, that diabetes devices should be available to every child that wants one, please take a few moments to find out more about my so far Untitled Giving Project.

My family is fortunate to have good insurance and the means to cover our out of pocket expenses. I want, almost as much as I want a cure for type I, to help the kids who aren’t – can you please consider helping me to help them?
My fondest regards, Scott @ArdensDay

Thank you Scott firstly, for what you are working on.  And secondly, for taking the time to share your generous efforts here with my readers.  I sincerely hope you will attain your goal and make the difference in the lives of children with diabetes!

Please visit http://www.ardensday.com/ardens-day-gives to make a donation.

Today.

Advocacy, Community, Education, Events

Diabetes. Everyone has heard of it. I’m pretty sure anyway. But not everyone knows the facts about it. Those of us living with it or who cares for someone living with type 1 diabetes know it all too well. Some of us who were diagnosed at an age young enough, only know life with diabetes. Some people remember life without it. Either way, all our lives changed dramatically at one point. Some of us use an insulin pump to dose our insulin. Some use multiple daily injections. Either way, we all need insulin to live. Some of us test our blood glucose levels 10+ times a day. Some test fewer times. Either way, we all need a glucose meter to live. Some of us SWAG (scientific wild ass guess) when it comes to carbohydrate counting. Some weigh every little bit of food. Either way, we all need to know the carbs in what we’re eating to live. Some of us rely on juice boxes, even as adults, to bring our blood sugars up. Some rely on candy or glucose tablets. Either way, we all need that sugar to live in those moments. Our diabetes may vary, but the necessities are the same. The lives of people living with diabetes are dependent on so many different things. And not everyone knows that. There are so many variables that can affect one’s blood sugar – not just food. And not everyone knows that. We can do everything by “the book” and still get undesirable results. And not everyone knows that.

Today on World Diabetes Day, the birthday of Frederick Banting who, along with Charles Best, first conceived the idea which led to the discovery of insulin in 1922, all of the diabetes online community are getting the word out. About how crucial it is to act on diabetes.   But if you’re outside of the community and you haven’t heard a lot about diabetes, listen up. Or if you’re tired of hearing about diabetes, don’t be. The facts are astounding but the true stories are even more.  You would want there to be much focus and awareness about it if you or a loved one were living with it. Trust me.

The Empire State Building is going to be lit blue and white tonight in honor of World Diabetes Day. I’m going to try and grab some pictures tonight!

**Update** I went to the Empire State Building on my way home from work last night to get a view of the blue lights.  To my dismay, they were not blue at all.  The schedule was changed in memory of Evelyn Lauder who was a strong part of the pink ribbon breast cancer awareness campaign.  While I find a tribute to her significant, I did not find it important enough to change the lights from the planned blue to pink. I think they could have changed the scheduled blue today for the Mary Poppins Broadway anniversary instead of changing yesterday.  Someone has their awareness priorities mixed up and was very disappointing. 

My Two Cents.

Advocacy, Community

Last week in conjunction with the start of National Diabetes Awareness Month, the launch of their new logo and their new T1Day, JDRF posted this ad in both the New York Times and Washington Post.  I personally did not see the ad in either paper but on the JDRF’s Facebook page.  Well, this has caused quite the stir around the diabetes online community.  I wasn’t going to write anything about it but instead step back and lurk at what people had to say.  However while reading through the very long thread over at Children with Diabetes, it got me thinking.

When I was diagnosed back in 1981 my family was told that a cure was around 10 years away.  As of today, I have been living with type 1 diabetes for 29 years, 10 months and 14 days.  My father lived with it for over 30 years before complications took his life, both figuratively and literally.  Call me pessimistic, but I do not foresee a real cure in my lifetime.  I’ve come to accept that I will live with diabetes for the rest of my life.  But that doesn’t mean I still don’t have some hope for a cure.  Since I believe a cure is not in the predictable future, what I would like need now is for the diabetes management tools to continue to improve to help me and other people living with diabetes do just that.  Live.  But healthy.  Safely.  Enduringly.

There are many things that can go wrong in the life of a diabetic.  On both ends of the BG spectrum.  That 1 in 20 dying from a low blood glucose is just one of them.  While the scientists work on finding that cure, I think what is important to us all now is decreasing the number of precious lives lost from this disease.  From whatever cause.  And helping us maintain as close-to-normal BG levels as possible so that we can improve our chances against complications.  If an organization chooses an advertisement that some find fear mongering or sensationalized in order to draw attention to a disease that needs well, attention, I don’t think that is so wrong.  Things have come a long, long way since the days of urine testing in tubes and sterilizing syringes before injecting and giant BG meters that took almost 5 minutes to read a result with no memory.  But we still have so much further to go.  And to get there we need the work of organizations like the JDRF or DRI or ADA.  No matter how alarming their ads may seem to some.

Refrigerator.

Community, Events

First off, I jumped on the bandwagon and set my blog background blue for National Diabetes Awareness Month 🙂 

Second, I had every intention of particitpating in the Juvenation blog carnival challenge however being that it’s already the 4th of the month, I guess you can say by now, I’ve been unsuccesful at the challenge 😦  But I am still going to use some of the blog prompts and hope that’s ok with the gals over at Juvenation!

Today’s prompt is “If you open up your fridge, what is the first thing you
would eat? And why did you pick that food? How many carbs does it
have?”

I’m trying to think of what is currently in my refrigerator.  Do I have to pick just one thing?  😉 The first thing that comes to mind is string cheese.  I’ve been eating them like crazy lately.  Those are actually zero carbs.  So maybe I’ll take two!  The next thing I would eat is a Chobani yogurt.  Preferably pineapple.  They are delicious!  One of those is 21 grams of carbohydrates.  To wash those down I’d drink either a Diet Dr. Pepper or some Diet Peach Snapple.  These are some of my favorite things to eat and drink which is why I chose them.  Not to mention healthy snack items.  (If the question was what would you eat from your cabinet, that would be a different story!  See: chips or cookies.)

No D Day 2011.

Community, Family

Today is No D Day which is a great idea started by the D ninja himself, George.  And on that note, here is my No D Day post.

Joe and I do not have children and if you know me, you know that is not at all a light subject to me.  But there are two little people in my life that mean just as much to me as my own children would.  There are two initials tattooed on my right middle finger – JK.  That is for them.  My niece and nephew.  The children who were born into this world by my twin sister and her husband.  And I am blessed to be their aunt and godmother.  They bring such joy to my life and are one of the biggest treasures of my world.  Maybe I feel a deeper bond with them because I don’t have a child of my own.  But whatever the reason, I would do anything for these two.  J and K, Auntie Stacey loves you 🙂

My 30.

Community, Education, Emotions

So I missed Invisible Illness Week, but I still wanted to contribute my own “story” for the cause.  So here it goes …….. 

1. The illness I live with is: Type 1 diabetes.

2. I was diagnosed with it in the year: 1981.

3. But I had symptoms since: Probably not too long before I was diagnosed.

4. The biggest adjustment I’ve had to make is: I don’t really recall any adjustments. I was only 5 so I don’t remember life before having diabetes.

5. Most people assume: That I have the “bad” type of diabetes. To quote one of my D friends, type 1 is the “best” type 🙂

6. The hardest part about mornings are: Getting up 😉

7. My favorite medical TV show is: Grey’s Anatomy or House.

8. A gadget I couldn’t live without is: Do I have to pick just one? I literally probably couldn’t live without my glucose meter however I really wouldn’t want to live without my insulin pump or my Dexcom continuous glucose monitor. Those two gadgets have kept my diabetes in check better than anything else in the past 29 years.

9. The hardest part about nights are: Worrying about low blood glucose levels that could be fatal.

10. Each day I take _6_ pills & vitamins.

11. Regarding alternative treatments I: Tend not to believe a word of any of it.

12. If I had to choose between an invisible illness or visible I would choose: Neither please.

13. Regarding working and career: I have had a very successful career so far. Sometimes, as I’m getting older though, it can very quite tiring.

14. People would be surprised to know: I didn’t always take care of my diabetes the way I should have. (or maybe you’re not surprised?)

15. The hardest thing to accept about my new reality has been: I can’t really answer this since diabetes isn’t new at all to me.

16. Something I never thought I could do with my illness that I did was: Anything I’ve ever done.

17. The commercials about my illness: Usually make me chuckle. The portrayal of diabetes is usually very far off from reality.

18. Something I really miss doing since I was diagnosed is: Hmm. Not being diabetic?

19. It was really hard to have to give up: Again, I don’t remember life before diabetes so I can’t recall having to give up anything.

20. A new hobby I have taken up since my diagnosis is: Being a diabetes advocate.

21. If I could have one day of feeling normal again I would: Want it to last forever and ever.

22. My illness has taught me: Strength and positivity.

23. Want to know a secret? One thing people say that gets under my skin is: Can you eat that? Please don’t ever ask me that question.

24. But I love it when people: Ask me about diabetes – what it is and how it is managed, etc.

25. My favorite motto, scripture, quote that gets me through tough times is: When live gives you one hundred reasons to cry, show life that you have one thousand reasons to smile.

26. When someone is diagnosed I’d like to tell them: It can be hard but I’ve been doing it for almost 30 years and I’m still here and thriving 🙂

27. Something that has surprised me about living with an illness is: The lack of knowledge that people have about it.

28. The nicest thing someone did for me when I wasn’t feeling well was: Get me something to drink or eat when I was low.

29. I’m involved with Invisible Illness Week because: There are so many invisible illnesses that people live with yet outsiders have no idea what they are like. People may have it harder than is shown on the outside.

30. The fact that you read this list makes me feel: Accomplished. I hope I’ve taught a thing or two.

Diabetes Art Day 2011

Community, Events

I’m so sorry for being late to the Diabetes Art Day party!  I’ve had some things going on (like getting a needle in my eye but that’s a whole other story and no excuse).

Anywho, here is my contribution.  And once again I must thank my wonderful hubby who helped me er, created this little piece of art 🙂  It’s the DOC truck!

Yes that is supposed to me driving 😉

Not sure if you can make it out but it has a specialized license plate that reads DOC!

Healthy Future.

Community

If you aren’t already aware, there is an event scheduled for September 18th in NYC.  It’s called Unite for a Healthy Future and the purpose is to support the fights against non-communicable diseases like diabetes, cancer, heart disease and chronic respiratory disease. The International Diabetes Federation and civil society leaders are organizing an afternoon in Central Park, New York City, the day before the UN summit. 

However in recent days, there have been efforts to weaken the progress on this subject.  From the IDF website: “International progress on non-communicable diseases (NCDs) such as cancer, diabetes, cardiovascular disease and chronic respiratory disease, is at grave risk, because of recent efforts by some member states to postpone and weaken United Nations negotiations, an alliance of civil society organisations warned today.  In a letter addressed to UN Secretary General Ban Ki-moon, the NCD Alliance, a coalition of over 2,000 organisations from over 170 countries focusing on NCDs, attacked the state of negotiations towards the first-ever UN High-Level Meeting on the Prevention and Control of NCDs, scheduled for 19–20 September in New York. Referring to the Political Declaration, which will be the outcome of the meeting, the Alliance said: “The situation is urgent. Yet, it is reported that sound proposals for the draft Declaration to include time-bound commitments and targets are being systematically deleted, diluted and downgraded.””

We need to do everything we can to make sure our leaders do not abandon this effort!  Manny Hernandez from TuDiabetes, posted a great blog yesterday about this.  Please read his post We are here! We are here! We are here! HEAR US!

I contacted President Obama via the White House website.  This was my declaration to him:

“I understand the NCD Alliance has jeopardized the progress on the non-communicable disease epidemic. This cannot happen. NCDs are now the leading cause of death worldwide each year. And it’s only going to get worse. I am a person living with type 1 diabetes and I do not want to see this disease continue to grow in statistics. I also do not want to become a victim of disability because of my disease. Something needs to be done. So many people in the US are affected by these diseases and the hardships that stem from them. It affects the economy. It affects our healthcare system. These are the people that you govern and work hard for. We need you to attend the NCD Summit on September 19, 2011. We need you to represent us. So many lives are depending on your presence.”

Please follow my lead and the suggestion of Manny to spread the word about the importance of this issue and to contact your government representatives.  We need them to act on this.  Our world depends on it.