MasterLab 2016: The Lessons

Disclosure: Diabetes Hands Foundation provided me with a scholarship that paid for my flight, hotel, and registration to the MasterLab workshop. All opinions are mine.

I’ve been doing some thinking, some introspection. As I have shared before, I started this blog as an outlet for myself. Soon, I realized that by sharing our story I am also trying to make the world a friendlier place for my daughter and all other people with diabetes. But what lies beyond sharing our story? What diabetes-related issues do I want to focus on? What organizations do I want to support?

I can advocate everywhere. I cannot advocate for everything.

In his opening remarks at MasterLab, Scott Johnson talked about paying attention to and feeding “your fire.” That message struck a cord. I want to advocate for something I am passionate about, something I truly believe in, something I can throw myself into without any reservations. I need to advocate where my heart is.

My heart is with #DiabetesAccessMatters. Having diabetes is hard enough. We don’t need constant battles to get access to and coverage for needed diabetes supplies. We don’t need insurance companies to play doctors and tell us what treatment is better for us. We don’t need to worry about being able to afford insulin which, for Type 1 diabetes, is literally a life-saving medication.

My heart is with diabetes tech. Sure, a cure would be nice and it will hopefully happen one day. In the meantime, diabetes tech is what continues to make  the biggest difference in easing diabetes burden, improving safety and effectiveness of diabetes management, and improving overall quality of life.

I got to touch iLet!

My heart is with Riding on Insulin, and not only because they organize amazing adventure sports camps for T1 kids. ROI people are the kind of role models I want V to have in her life. I want her to be around T1’s who can show her via their actions that everything is possible and who will encourage her to follow through on her goals, challenge herself and live her life to the fullest. I am determined to continue my fundraising for ROI until I reach and surpass my goal.

Proud to be RIO Global Athlete

My heart is with Camp Conrad Chinnock. Diabetes camp is such a special place for T1 kids. It’s a safe place where they can be totally free and where everyone “gets it”. I want to make camp work weekend a family tradition so that every year we can help get camp ready for summer. I may also fundraise for it in the future and participate in other volunteering events/functions. And while I am not officially fundraising for camp now, I have selected it as my charity via Amazon Smile.

Having a blast at diabetes camp. Image credit: Camp Conrad Chinnock

My heart is with being a patient voice on behalf of my daughter. I want a seat at the table with health care providers, tech developers, policy makers, drug and device manufacturers, and other involved parties. We are all in it together and I want us to have a joint discussion on how to improve care, access and quality of life for all people with diabetes. I’m getting that seat at the table, literally, at the Diabetes Mine Innovation Summit in October. I am so honored to have been selected as one of the Patient Voices winners.

Not long before I left for MasterLab, I created a new category for my blog: advocacy. Looks like it’s going to get quite a workout. Chaaaaaaaarge!

MasterLab 2016: The People

 

I am traveling home after a full day of MasterLab in Orlando – a diabetes advocacy workshop put together by Diabetes Hands Foundation. I spent a day flying across country to spend 8 hours in workshop and then turn around and travel another day to come back, and it was worth it. I will write a little later about what I learned. Today it’s all about people.

I love my d-peeps of all types. None of us asked to join this elite crappy club but somehow we beat some serious odds and got in. Turns out it’s a club filled with incredible and awesome people. Maybe it’s the diabetes that makes them awesome? Or maybe you have to be awesome in the first place to get into the club?

Diabetes creates an instant bond and a feeling of trust between people. By the virtue of being in this elite club we have a lot in common, we speak the same language, we share similar stories. I knew some of the people from DOC (Diabetes Online Community); others were perfect strangers. I finally got to meet them in person and it was fabulous.

I loved talking to adult T1s and learning about their journey with diabetes. A few of them shared how, at the time of their diagnoses in the 70s, they were told that they would not live past 40 years old. Let that sink in. Imagine what it’s like to hear it from the doctors when you are a child, a teen or a young adult. Imagine what it’s like as a parent to have a doctor tell you that your child has 20-30 years to live, tops. And that they would die slowly from awful and painful diabetes complications.

Fortunately, treatment of Type 1 Diabetes has come a really long way. These people who were not supposed to live past 40 are living healthy, productive, active lives. And when V was diagnosed three years ago, the only message that we received was that it was going to be OK, that diabetes was manageable and that V would be able to live a normal, healthy, happy life. We never considered any other alternatives. I am so grateful for that.

It was also interesting to learn that most, if not all, PWD (persons with diabetes) I spoke with don’t care about the cure but are very excited about new treatments and technologies. There is a shared acceptance that the cure is far, far away but better treatments and technologies are here and they are making diabetes management easier, safer and more effective.

I am thankful for the opportunity to hang out with d-peeps. There is nothing like sitting down over a few drinks and having an honest talk about life with diabetes. I got to hear a few diabetes war stories too – some shocking, some funny, some a little scary. One person was concerned that she was scaring me off with all the information she and others were sharing. On the contrary! Being surrounded by people sharing their real-life experiences gives me hope for V’s future. We cannot protect V from the reality of life with diabetes, but by understanding it better we can give her the tools to do well. There I sat, surrounded by vibrant, resilient people, who surely had their ups and downs and made many mistakes along the way. Their diabetes management was not perfect and perhaps at times it was downright awful, but they found ways to live well and thrive. That’s good enough for me. No, it’s better than good, it’s inspirational.

Thank you for allowing me to into your lives and giving me a glimpse of my daughter’s future. Her future is bright.

 

Disclosure: I applied for and received a scholarship from Diabetes Hands Foundation that covered my flight, hotel, transportation and registration. All opinions are mine.

Quiet before a storm

I haven’t posted in a month. I guess after Diabetes Blog Week wrapped up, I needed a little break. Consider it a quiet before a storm because tomorrow I’m getting on a plane and heading to hot and humid Florida for MasterLab! I am beyond honored and excited to have been selected to participate this year. I can’t wait to meet all other advocates and presenters and learn how to take my diabetes advocacy up a notch. There will be many posts in July. The storm is right around the corner.