National Diabetes Awareness Month (NDAM) may be coming to a close, but for those who live with type 1 diabetes (T1D), thinking about diabetes doesn’t stop after the month of November. For many of us at JDRF, our organization’s mission is deeply personal–whether we have a child, family member or friend with T1D or if we live we T1D ourselves–we know the importance of the research we fund.
In honor of NDAM, we spoke with our chapter’s Development Coordinator, Marianna Seefeldt, to learn more about what her experience is like living with T1D. Read her story below!
What was your diagnosis like?
I was diagnosed when I was three years old. With that being said my parents tell my diagnosis story better than I do. My mom is a DNP (Doctor of nurse practitioner) and she noticed my extreme thirst and bed wetting after I was already potty trained. She said she had this horrible feeling come over her that I was T1D. She took me into her office, and they took a blood test and finger prick to find out I was type one. This was in 2002 when T1D wasn’t as familiar as it is now. I was life flighted to Pittsburgh children’s hospital and that’s where we learned more about T1D.
What were you told at the time of your diagnosis that’s no longer true?
Carb counting was different, now we know that all carbs are not the same. When I was initially diagnosed a carb was a carb no matter the about of fat or fiber that was paired with it.
How has your treatment plan changed/improved since diagnosis?
I initially came home on NPH and regular insulin, I had to eat every 3 hours as a toddler and would frequently throw up and have to eat again. I had grand mal seizures from hypoglycemic unawareness until I received the Dexcom (CGM) that completely changed my life. The education around T1D has improved immensely, I remember frequently being treated as someone who couldn’t eat sugar or needed to exercise more. Now most people I meet know that is not the case. I had a nurse that accompanied me in school and at home to make sure my blood sugar was checked on time (before CGM) and that all my carbs were accounted for correctly and there was still so much pressure from my doctor to be “better” at “controlling” my diabetes. We now know that T1D is meant to be managed to our best ability, not controlled, and there will be times that our blood sugars are not in range for several different reasons.
How do you navigate the mental toll and burnout that living with T1D can cause?
I make sure to tell my family, and friends when things are getting hard. I have a great support system that is willing to cheer me up at any time. I’ve learned over the years not to keep it all inside, carrying negative thoughts can get awfully heavy.
What are some factors that impact your blood sugar that others might be surprised to learn?
Heat, long car rides, emotions (stress, sadness, anxiousness)
This is a very exciting time for T1D research. What are you most looking forward to in the months and years ahead?
I am looking forward to any and all breakthroughs. Sometimes just hearing everything that is being done for people like me is a reassurance that we are not alone in this battle.
Is there anything you would like others to know about life with T1D?
Diabetes doesn’t care what time of day it is, if you have a presentation, if you have a meeting with someone very important. It doesn’t care if you are tired from the night before, had a stressful day at work, or if you just need a break. There are no breaks, there are no nights off, and there are no holidays. The technology makes it easier, yes. However, it does not take it away. Diabetes effects every aspect of your life. There are good days, there are bad days, but all days I have T1D.