From the importance of finding support to tips for performing pain-free finger pricks, some of the Internet’s top diabetes bloggers tell us what they wish they had known when they were diagnosed. Here’s what they had to say.
Log on. “I wish more people were told about the online diabetes community when they are diagnosed with diabetes. Doctors can give you information, but the anecdotal, living-with-it information learned from real people with this disease is what makes the burden of diabetes so much lighter.”
Look beyond the belly. “Your body is full of excellent diabetes-device real estate options. Using my arms, thighs, back and hips as places for my pump and sensor has been a nice change of pace from the standard belly placement!”
Seek out success stories. “It wasn’t until I was pregnant with my own daughter, chronicling my own diabetic pregnancy, that I realized how much I needed to hear a positive story instead of the ‘Oh my goodness, have you seen Steel Magnolias?’ response. Thankfully, now I am that positive story.”
— Kerri Sparling has been living with type 1 diabetes for 25 years, and she lives her life by the mantra “Diabetes doesn’t define me, but it helps explain me.” She’s a passionate advocate for people with diabetes, and she writes one of the leading patient blogs on the web at www.SixUntilMe.com. Kerri lives in Rhode Island with her husband and their daughter.
Don’t expect to be “perfect.” “I wish I had realized a long time ago that the ‘perfect diabetic’ doesn’t exist. My best advice — and advice that I still have a hard time following myself — is not to beat yourself up for out-of-range numbers. They happen, they are part of having Type 1 diabetes, and they will creep in no matter how hard you try to manage this disease. Instead of seeing the number as a failure, see it as important information that you can act on. Pat yourself on the back for doing the blood sugar check and for doing what you need to do to bring your blood sugar back into range!
— Karen Graffeo was diagnosed with Type 1 diabetes in 1979. She blogs about the ups and down of diabetes at www.bittersweetdiabetes.com. When she’s not advocating on-line or in-real-life, she can usually be found knitting while hanging out with her husband and adorable cat.
Just breathe. “To make shots and finger pricks not hurt so bad, I take a long, deep breath and inject or prick on the exhalation. When we are less tense, our nerves are not as hypersensitive and we feel less pain.
Test frequently. “I test six to eight times per day, some days up to 12 times. I do it because it often means catching a blood sugar of 150 before it becomes a 250 or a 50 before it’s a 35. This is huge. When I did this, my A1c went from 7 percent to under 6 percent. In the long run, a lower A1c can be the difference between having and not having a diabetes complication.”
— Sysy Morales has had type 1 diabetes for 17 years. She is a married mother of two-year-old twins. She is a passionate diabetes advocate, diabetes patient expert and blogger at The Girl’s Guide to Diabetes.com.
Get connected. “The best advice I can give to someone with type 1 diabetes is to reach out for support. Whether that support is online or offline, the ability to connect with someone who understands is a powerful motivation.”
— Sara Nicastro has been living with Type 1 diabetes for about 8 years. She works in higher education. She also writes about her experiences living life to the fullest with a chronic illness and shares stories about her family, friends, and faith on her blog MomentsofWonderful.com.
Take charge. “Do not expect to sit back and have your doctor do everything for you! Diabetes is a self-managed disease. The doctor, nurse or diabetes educator you work with can help guide you, but most of the time you’ll be out and about, living your daily life, and managing diabetes alongside everything else you’re responsible for.”
— Amy Tenderich was diagnosed with type 1 diabetes in 2003, and subsequently launched the popular blog www.diabetesmine.com. She’s now a leading patient advocate, blogger, and book author who recently joined health social media company Alliance Health Networks as VP of Patient Advocacy.
Know your stuff. “Make it a point to start learning everything you can about diabetes. Embrace information. Start a notebook, buy a few books and interview some people. The online diabetes community is very active, so join in!”