Category Archives: Advocacy

My Diabetes Hero.

Advocacy, Community, Emotions, Family

I’m a day late and two posts behind (sorry Karen!) since I was at the Diabetes Sisters Weekend for Women conference in Raleigh this weekend but this is a great topic and I also didn’t want to miss the grand finale of Diabetes Blog Week.  Day 7’s topic is this: “Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??”

There are many, many people in the diabetes community that I admire and look up to.  The parents of children with diabetes.  The athletes.  The mothers with diabetes.  So many others wo do not fall into these categories but are awesome just the same.  However, my diabetes hero is, and always will be, my father.

Plain and simple a good part of his life sucked because of diabetes.  He had gastroparesis that interfered with his digestion.  He had retinopathy that took most of his vision.  He had heart disease which caused him to have multiple heart attacks and congestive heart failure.  He had neuropathy that lead to the amputation of one his legs.  He had kidney disease that lead him to a short period of dialysis.  All of these things ultimately lead to him losing his life from diabetes.  But not without a fight. 

Sure he struggled with a great deal of depression and negative viewpoint.  He also blamed himself for my diagnosis.  I couldn’t begin to imagine how guilt like that feels.  But he didn’t want me to have the same attitude.  I have no doubt that my diabetes life would not be the same if it weren’t for him.  Maybe even unknowingly, he paved the way for me to stay positive.   

It may have taken me a while, but I live with diabetes better because of him.  I take care of myself knowing what could happen but doesn’t have to happen.  The empty spot in my heart that has been there since he passed away is also full of admiration for him.  For the way he fought against all those complications he endured.  He will always be a hero in my eyes.

Fantasy Diabetes Device.

Advocacy, BG, BG Meters, Community

Today is day 4 of Diabetes Blog Week and the topic is: “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?”

I know this topic is probably meant to get everyone’s thinking cap on and get creative.  And honestly I can’t wait to see what everyone came up with.  However, I am going to be boring and to the point 🙂 

There is one major thing that I would love to have in my diabetes devices which is sadly lacking in 2012.  Glucose.  Meter.  Accuracy.  Period.  You may even be tired of “hearing” me on this subject.  Yet I think it is something that we should all want and work hard to advocate for.  By definition, a fantasy is the faculty or activity of imagining things that are impossible or improbable.  Is greater meter accuracy impossible?  I wouldn’t think so although I’m no clincial expert.  Is more accruacy improbable?  At this point in time I’d say yes.  Sure the glucose meters available to patients today are faster, smaller and more accurate than they were when they first came out decades ago.  However, the current accuracy standard set by the FDA is + or – 20%.  This is not good enough.  Diabetes affects millions of people.  And the numbers continue to grow.  Diabetes is also managed by the patients close to 100% of the time, unlike many other conditions.  This means that those glucose meters used by people with diabetes every single day are the most important tool for them in staying healthy.  In preventing those dreadful complications.  In avoiding life threatening low blood sugars.  It is stressed by every medical professional in the world that tight control should be the goal of everyone living with diabetes.  Well how can that be achieved if the meters we use to monitor our BG readings aren’t accurate enough? 

So forget fancy insulin pumps or continuous gluose monitors.  Yeah those would be nice to have.  But as long as my pancreas isn’t working and I need to monitor my blood glucose in order to stay alive, I wish for gluocose meters that give me readings I don’t have to second guess.

One Thing to Improve.

A1c, Advocacy, BG, Community

Day 3 of Diabetes Blog Week’s topic is this: “Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let’s look at the flip-side. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!”

Yesterday I started my post with the notion that I do everything related to diabetes spectacularly.  Then I went on to say let’s get serious.  Which seems like the perfect intro to today’s topic! 

The main thing I would like to improve in regard to my diabetes management is my A1c.  My A1c’s growing up were always high by today’s standards.  (I’ll chalk that up to a few reasons why but not what I want to get into now)  Then some years ago, when my effort to manage my blood sugars was enhanced if you will, there was an improvement in my A1c levels.  But not as much as I would have liked.  Don’t get me wrong.  It’s not terrible.  And I’m glad that it has at least been stable for the past 2+ years.  But I cannot seem to get under that 7% mark.  And it’s tremendously frustrating.

With that being said, there are numerous things I can probably improve upon to possibly get that A1c improvement.  But for today’s topic I need to pick one.  Hmm.  This is actually a tough one.  I’d have to say logging is my biggest diabetes “failure”.  The only time I log anything is to write down what I eat and activities for a few days prior to my CDE appointements.  That’s about four times a year.  I never download my Dexcom data.  My CDE does this at my appointments with her.  The only time I download my meter readings is to print them out for my endo appointment.  On a day to day basis, I monitor my BG regularly and meticulously.  However on a big picture basis, I suck bigtime.  Granted I’ll notice if I’m say running high at nighttime and adjust my basal accordingly but only if it’s enough to stick out.  Like recently.  There are most likely other patterns to be spotted if I actually took a look more often at the bigger picture. 

Now that I’ve made a public confession of something I need to improve, I feel like the worst diabetes patient ever.  I better get working on that……………

One Great Thing.

Advocacy, BG, BG Meters, Community

Today’s Topic is this: “Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”. But today it’s time to give ourselves some much deserved credit. Tell us about just one diabetes thing you (or your loved one) does spectacularly! Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes. Nothing is too big or too small to celebrate doing well!”

So we have to pick just one great thing we do.  Well, it is really hard for me to pick only one great thing that I do spectacularly.  I do everything related to diabetes spectacularly!  I am thee perfect diabetes patient! 

Okay, let’s get serious.  If only the above were true, I’d be walking around with an A1c of 6% all the time and my Dexcom graphs would be flat lines constantly.  A girl can dream 😉 

With that being said, I do have to give myself credit for knowing what my blood sugar is.  I went from a period where I probably only checked about once a day, to testing (on average) a minimum of 8 times daily.  It may help just a little that I tend to have my hands on the latest, cool, glucose meter.  Hey whatever helps right?  But not only that, it has been over 2 years since I let a day go by without using my Dexcom.  And I act on those readings too.  If I’m high, I correct until I’m in a better range.  If I’m dropping, I try to head off a low by lowering basal insulin or having a small snack.  Knowing what your BG is, is a crucial piece of managing one’s diabetes.  I certainly don’t have anything perfected, even after 30+ years but I do try.  And I try hard.

I like this topic a lot.  Living with diabetes can seem so daunting and difficult and scary most of the time.  And there are so many moments potentially leading us to feel like we don’t do things well enough.  But we do many things well and focusing on the positive is something we should all do more often.  Thanks for this Karen!

Find a Friend.

Advocacy, Community

Thank you so much Karen for coordinating yet another Diabetes Blog Week!  This year’s is starting off with this topic: “It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends. With that in mind, let’s kick off Diabetes Blog Week by making some new connections. Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!! Let’s all find a new friend today!”

I’ll admit that I’m not in the best frame of mind tonight and don’t want to seem like I’m taking the easy way out on this one but I’d like to point you all to my blog roll (on the lower right hand side of my page).  I’d love to introduce separate individuals that stick out in my mind but I honestly like to keep up with all those on my list (as best I can) and am glad to call them all friends.  Without all these people, there wouldn’t be a diabetes online community and everyone’s advocacy efforts should be commended!  Thank you friends, for all you do 🙂

In the Name of Research.

Advocacy, Education, Family

When I was at the JDRF Research Summit last month, the main focus of the presenters was the progress, current efforts and complexity of finding a cure for type 1 diabetes. There was also mention by Dr. Desmond Schatz (Professor and Associate Chairman of Pediatrics, Medical Director of the Diabetes Center and Director of the GCRC at the University of Florida, Gainesville) of the need for people in the diabetes community to get involved in research studies. And this makes sense. If doctors and researchers cannot identify the cause and possible factors that cause diabetes, they will not be able to cure it. I hate to admit that in my 30 years of living with type 1 diabetes, I have not participated in any research. But I changed that recently.

TrialNet had representatives at the summit and I approached them to see if there were any research opportunities for twins and type 1 diabetes. If you’ve never heard of TrialNet, “Type 1 Diabetes TrialNet is an international network of researchers who are exploring ways to prevent, delay and reverse the progression of type 1 diabetes. TrialNet was established in response to the Surgeon General’s Report Healthy People 2000. This report identified diabetes as a national health objective for the Nation. In response to the report, Congress created the Diabetes Research Working Group (DRWG) to develop a plan for diabetes research. One recommendation of the DRWG was to conduct additional research studies (clinical trials) to prevent type 1 diabetes.” “TrialNet is conducting clinical trials with researchers from 18 Clinical Centers in the United States, Canada, Finland, United Kingdom, Italy, Germany, Australia and New Zealand. In addition, more than 150 medical centers and physician offices are participating in the TrialNet network. Studies are available for people newly diagnosed with type 1 diabetes, as well as for relatives of people with type 1 diabetes who are at greater risk of developing the disease.” So of course they organize a study for type 1 diabetes and twins. If you don’t know already, I have an identical twin sister who does not have diabetes. And if you think about us developing from the same egg, having nearly identical DNA, having the same environmental influences both in my mother’s womb and growing up, not to mention having the same father who had type 1 as well, it makes me wonder why my beta cells destroyed themselves but not my sister’s. (Not that I am in ANY way wishing she had it too. This is strictly a scientific marvel) Both my sister and I gave blood samples that were mailed to TrialNet for the to test for certain antibodies related to type 1 diabetes. I was very happy to take part in research that will help the mission of finding a cure for diabetes. Even if I don’t see the cure in my lifetime, it would please me to know that I helped people after my time.

Research is very critical to finding a cure for diabetes. And who better to help with that research than those of us already living with the condition? Please check out TrialNet’s website (https://www.diabetestrialnet.org/index.htm) and see what clinical trials you would be able to participate in.  It will benefit the entire diabetes community!

image credit: JDRF

Diabetes Alert Day.

Advocacy, Community, Education, Events

I live with a type of diabetes that cannot be prevented or reversed. My diet or weight as a five year old had nothing at all to do with why I was diagnosed. I have taken insulin every day for the past 30 years to stay alive. Eating right and exercising of course helps me stay healthy overall and does improve my blood sugar readings but it will not get rid of my diabetes. There are about 900,000+ other people in the US alone who are in the same boat as me. But that is only 5% of the diabetic population. There are approximately 18 million more people in the US who have type 2 diabetes. Type 2 diabetes is when the body does not produce enough insulin or does not utilize it properly. It is sometimes linked to diet and(or) lifestyle. There are different treatment options for type 2 diabetes depending on each case, including diet and exercise, oral medication and insulin.

The CDC estimates that there are an additional 7 million people in the US that have diabetes and do not know it. That is an astounding number. Any type of diabetes is no joke. But you can live a fulfilling life with diabetes as long as you get the medical care you need. Today is American Diabetes Association Alert Day. If you aren’t already living with diabetes, please take a few minutes to take the ADA’s risk test for type 2. And share it with your friends and family members. Early diagnosis is crucial. I was extremely fortunate to have parents who recognized the symptoms before I was even sick. And I am certain that has helped me maintain a life of diabetes with minimal complications up to this point.  Knowledge is power when it comes to anyone’s health.  And if you or someone you love happens to be diagnosed with diabetes, know that there is an extraordinary community waiting to help you.

JDRF Summit.

Advocacy, Community, Education, Events, Insulin pumps

This past weekend I had the great opportunity to attend the JDRF Type 1 Research Summit in Maryland hosted by the JDRF Capitol chapter.  I have attended diabetes events before but never one that was focused on research for advancements in management and a cure for type 1 diabetes.  I’m really glad I went.

Joe and I made a weekend trip out of it and did a little sight-seeing in DC.  That was nice.

Of course the first thing I spotted when getting out of the metro station was Crumbs bakery!  We didn’t indulge but just seeing the sign put a smile of my face 🙂 

We also got a glimpse of the Occupy DC movement that still resides near the capitol.

The summit itself was a day full of education to say the least.  We heard from presenters like Dr. Juan Dominguez-Bendala from the Diabetes Research Institute, Adam Brown from Close Concerns and diaTribe, Dr. Mark Atkinson and Dr. Desmond Schatz from the Diabetes Center of Excellence at the University of Florida, Dr. Stuart Weinzimer from Yale School of Medicine Pediatric Endocrinology, Cynthia Rice from JDRF Government Relations, Marie Schiller from Health Advances and T1D First and Gary Scheiner from Integrated Diabetes Services.  The moderator was Riva Greenberg, columnist at the Huffington Post.  I thought each and every one of the presentations were very informative and well demonstrated.

A lot of the guests spoke about the current and future research that is being done for type 1 diabetes.  Some in terms of the steps to get to the artificial pancreas and some in terms of getting to a cure.  I won’t pretend that I understood all the scientific or medical terminology but it did reiterate how extremely difficult it is to find a cure that will work.  I’ve been living with diabetes for 30 years already and for so many of those first years, my family and I heard that there would be a cure in the next 10 years or so.  For this reason and not being a pessimist, I don’t think I will see a cure in my lifetime.  However, hearing all that is being done in terms of research, even to improve the quality of diabetes management, does give me a little more hope to hang on to.  Especially after hearing Gary’s presentation about how much things have changed in the last 25 years.  Who remembers the autolet lancing device (shown below)?? That thing was horrible!

One highlight of attending the summit was not only did I get to spend time with some of my D friends, I got to meet some more in person!  I got to meet Tony, Colleen, Bennet and Kim and that was a huge plus to the weekend.

Another highlight was getting to see the t-slim insulin pump by Tandem in person at the exhibit hall.  I got to hold it and test it out (without being hooked up of course).  My initial opinion is that it is very sleek and slim – hence the name!  It holds 300 units of insulin which is a plus to a lot of people.  The touch screen makes moving around the menu and entering functions very simple and easy.  Tandem says the pump is waterproof for up to 3 feet for 30 minutes.  To me that’s not really water”proof” but better than nothing if getting caught in a downpour or accidentally coming in contact with a lot of water.  The only thing that makes me hesitant about the device is that it has to be charged like other electronic devices.  Charging something that is attached to you poses some doubts for me personally.

Overall it was a great experience and I applaud the JDRF Capital chapter for organizing a great event at no charge to the attendees.  I would highly recommend going to any future conference to anyone that has a loved one with type 1 diabetes in their life.

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.