Building awareness for diabetes is a full-time job. It’s not just telling people about the disease, as I wish it were, it’s explaining the type you have, what you do about it and how you manage it in this whirlwind of a life. In recent weeks, I’ve received comments and questions concerning my pump, my diabetes, healthcare and questions about my insight. I’ve had deep conversations with healthcare providers, diabetes educators, health fanatics and people who want to help me control my glucose levels.
On April 5th, I had the pleasure to see our work come to fruition during the American Diabetes Association EXPO in Chicago. I sat on the executive planning committee for months previous to the big show and was happy to hear that over 13,300 people made it out to the event to learn a lot more about diabetes, resources and see that it’s possible to live a healthy life with the disease.
Since my pump warranty is up in October, I also had the opportunity to learn about the options I have as a person with Type 1 diabetes. Regardless of calling myself an advocate, I’m continuously learning to keep up the good fight of balance, education and proper management. I need my eyes to see, my ears to hear (I had NO clue diabetes affected hearing) and feet to walk!
After reading Kelly’s post about #DayofDiabetes, I felt the need to write this post (finally) and participate, because well, as the title says, EVERY DAY is a #dayofdiabetes for me!
In the never ending story of diabetes, like everyone else, I’ve heard comments regarding my life with diabetes. We should start a hashtag just for this!
See the following:
- “You look healthy.” [In reference to me saying I have diabetes]
- “You know that cinnamon helps with blood sugar levels, right?”
- “Are you really wearing a pager?!”
I know, I know, we hear it all the time and this shit never gets old. In fact, I think it’s practice for me to perfect my answers to the questions. Additionally, it also helps for me to practice patience and allows me to further educate the people I speak to.
My answers to the bullet points above:
- “I am!”
- “Yes, but just so you know, my pancreas doesn’t work.”
- “What did you think it was? An insulin pump?!”
My background has allowed me to dive a bit deeper when talking to others in the health space as well. For example, when talking to a representative from a clinical network, I was able to question the level of expertise being provided at their clinics. Are they just M.D.s or are they diabetic educators? Do your patients have access to an endocrinologist? How much are you actually offering the people who use your services?
I spoke with a few diabetic educators who showed me the Journey for Control maps of management. Meant to instigate conversation about diabetes and management levels in groups, I asked if they had something like it in Spanish, if they offered this to young people with diabetes and if they had ever considered using it for parents of children with diabetes. It’s an awesome idea I wish my parents had access to when I was growing up.
I feel that I’m growing in knowledge and in many aspects of my life that only enhance my efforts for proper advocacy and education. My endocrinologist spoke at the EXPO about technology and diabetes tools in a digital world. When I caught up with him afterward, he mentioned that it was a conversation we had had that lead to this lecture. It is different when it comes from a doctor. I was live tweeting using #ChiADAExpo14 from my @Kikisbetes account.
“You made me trend,” said Dr. Philipson, who is also on Twitter. I laughed.