Adam Schefter and Peter Friedfeld: Perspectives on a Spouse living with T1 and a Later in Life Diagnosis

Today we have the unique opportunity to hear from two guests and two perspectives of Type 1. We have Peter Friedfeld share his story of being diagnosed with Type 1 Diabetes later in life,  how he adjusted and adapted to his diagnosis, while maintaining a positive outlook.  We also have ESPN's Adam Schefter share his perspective of living with a Spouse with T1 Diabetes, and his approach to being supportive.  These are both topics we hear about from our listeners, and its great to discuss these two topics today with Peter and Adam!

 

Peter was kind enough to share his Diaversary story with us:

My Diaversary story:
(Or everything you wanted to know about T1D but were afraid to ask)

Yes—-we Type 1’s do some crazy things....and acknowledging the date when we were first diagnosed as a Diabetic is just one of those things. So I thought I would take a moment to reflect, and hope y’all hang in there with me while I share a few things.

My Two Diagnosis: 5 1/2 years ago on February 7th, upon a regular yearly checkup, my doctor shocked me when he told me my A1C number (which measures blood glucose in cells for an average of 3 months) was out of whack. My ‘number’ was 8.1, which technically made me a diabetic. He misdiagnosed me as Type 2—and put me on Meds for Type 2 diabetes and told me to change my lifestyle (food and exercise). I was in shock as I contemplated that my days of being a life long Foodie would be coming to an end. I remember walking out of his office and going to lunch, and not knowing really what to eat. It was a very difficult time, I cried and felt completely lost. But I was also blessed with a great Husband, friends and family who supported me in amazing ways. Without them, I really don’t know how I would have moved forward. Within two weeks of my diagnosis, on the advice of my Doctor to find a CDE (certified Diabetic Educator), I ended up at Southampton Hospital in the office in one of the most caring, supportive, helpful persons I’ve met in this journey, who helped me chart my course.

The Vegan Days: As many who follow me know, about 5 years ago I became a ‘vegan’ and changed my healthy diet to a healthier plant based diet. In fact, one of my best decisions was to begin my Vegan/alcohol free/no oil diet one week before I went on a food and wine trip I had planned to Porto! (Thank you Peggy Haug Kraus, my amazing CDE who taught me so much and held my hand each step of the way). Yes friends, I would not eat an olive because it had oil, I would not eat meat, drink wine or port (remember, I was in Porto), eat anything ‘white’ (pasta, potatoes, etc). My friends on my trip, as many others at that time, thought I was certifiable! I dropped 20 pounds (remember those really scary skinny days?) really fast. And in the process I got off all my type 2 meds for a year, and my A1C number quickly moved into the ‘normal’ range. I had reversed my diagnoses of type 2 diabetes...except, I wasn’t Type 2!!! (Misdiagnosis is common).

Take 2, Type 1: Slowly over time, my hard work in diet and exercise could no longer help me in steadying my blood glucose, and my blood glucose numbers began to rise. Something was not right. My Doctor told me I needed to go back on meds for Type 2, which I took for over a year. When he recommended that I take three different meds daily....I knew something was wrong, and I contacted an Endocronologist (who we fondly just call Endo, as in,...he’s my Endo....)...who correctly diagnosed me as a Type 1 Diabetic. T 1 D. Oh Shit.

The Shock: I’ll never forget the moment when he pulled out two ‘pens’ on his desk. “You take one injection with this pen first thing in the morning, and you take an injection with this pen at every meal. Every day.” For how long I asked? “For the rest of your life”. (He also said it could be worse, you could be Type 2, but that’s another story!!!). I think I passed out. I’m not sure. I am melodramatic.

My analysis: I asked my Endo the ‘why me’ question. His response? “It’s just your thing”. I gave it some thought. What I learned over the next 2.5 years is that Diabetes is a disease that does not let you rest. You always need to be on, to be alert, to know where everything is (and we have a lot of ‘things’—insulin pens, pumps, CGM’s, tape, lancets, meters, sensors, insulin, cooler packs as well as our ‘low supplies’...candy, juice, figs, and the emergency mysterious Glycogen kit for emergencies). OK—-to start with, I never know where ‘everything’ is, let alone where ANYTHING is. I am also a Hypochondriac, have been since as long as I can remember. So yeah, I guess as my Doc said, this is ‘my thing’. Give a Hypochondriac that can’t keep track of anything (wallets, phones, cars, papers, pills, etc.) a disease that requires incredible discipline and the need to know where everything is at every moment TO SURVIVE...and it sounds like the perfect storm for me!

Facing my Fears: In the early days, I really was scared. While I was told ‘just take your insulin’ and life will be normal—NOTHING was normal anymore. Taking Insulin daily would become the easiest part of my day. Learning all the nuances, all the issues, all the personal ‘care', all the exceptions to the rules, all the ways your BG can go up and down; this would become an incredibly scary and humbling experience. I became paralyzed in parts of my life. How could I travel safely (My passion), how do I exercise? what can I eat? (nothing), do I talk about being Type 1 or remain in the closet ? (been there, done that), will I ever sleep a full night again? Will I (UGH) suffer and meet an early demise? Yes, these were the thoughts that ran thru my head constantly ...I needed to do something....

My T1D Family: When I was first diagnosed 5 years ago, I needed to do something to help me manage ‘me’. To find some peace, to grow, to relax. And that’s when I discovered Yoga. I began a practice a few days a week, and I found that consistent devotion to practice, in the quiet Winter in the Hamptons, was what I needed. But when I was re-diagnosed as a T1D—I knew I needed more help, more support and to connect with others ‘like me’. So I turned to social media. And I discovered some incredible social groups which would slowly developed into what I call my T1D family. I have many friends and family members who have been incredibly helpful and supportive. But I realized that only other T1D’s, and perhaps their family members, really understood what I was going thru. They got me and I got them. Given my newfound passion for Yoga, I reached out online and found an amazing coach who became my first T1D contact. Lauren Bongiorno helped me get on my feet, and taught me that I can, in fact, that I NEED to take full control of my life as a T1D. We discussed my passion for travel, and my ‘fear’ of not being able to continue adventure travel going forward. She assured me I could, and put me in touch with Erik Douds, who as a T1D hiked, biked and traveled the world alone, and was about to embark on a bike ride across America. Amazing T1D’s doing amazing things. Thus began my connecting with the T1D community. A community that understood firsthand EXACTLY what I was going thru, and helped me move forward.

So here I am, 6 years after a misdiagnosis as Type 2, 2.5 years after my ‘formal’ diagnosis as Type 1, a happy, proud, engaged T1D. And my life....?

  • I live connected to devices that alarm me when I’m high and low. If you have been next to me for more than a few hours, you know. You hear it too.
  • I am alive today, and ‘live’ because I have access to healthcare thru my work, and can afford insulin. (Lifesavers and other candy is relatively cheap).
  • I don’t sleep. I can’t string together more than 3 nights of uninterrupted sleep. (High alarms, low alarms, wearing devices, etc. keep me from having a restful sleep). I no longer can take sleep aids for fear of sleeping thru my alarms.
  • I've never felt healthier and more in control of my health in my life—despite the challenges.
  • I am filled with gratitude for all my friends, family, TD1 Family, healthcare providers and incredible ‘guides’ who are helping me on my journey.
  • At times, I am scared to be alone. Other times, I relish in my solitude.
  • I have taken up biking, yoga, hiking, paddle board, meditation.
  • I am a flexitarian (or as my friend Erik says, a flawed vegan).
  • I am thankful for all that I have, I embrace being T1D, and I’m looking forward to amazing new adventures filled with excitement, peace, love, engagement, empowerment, growth, leadership, community, partnership, friendship, challenge and health.
  • I am blessed to have Patrick Mclaughlin in my life who watches over me, for the most incredible family are always there for me, and for amazing friends who having given me more over these past 5 years than I have given you.

The Appendix:
(OK, truth be told, I’m really a LADA. What is LADA? Latent Autoimmune Diabetes in Adults. Latent autoimmune diabetes in adults is a slow progressing form of autoimmune diabetes. Like the autoimmune disease type 1 diabetes, LADA occurs because your pancreas stops producing adequate insulin, most likely from some "insult" that slowly damages the insulin-producing cells in the pancreas).

Essential Fact: Type 1 Diabetes (T1D), often called Juvenile Diabetes, is an autoimmune disease where essentially your immune system attacks the insulin producing Beta Cells in the Pancreas. Type 1 Diabetics can no longer produce insulin. Many are first diagnosed as kids or young adults, but adults of any age can also ‘become’ T1D, as was my case 5 years ago. Please do not confuse T1D with Type 2 Diabetes, which is a different disease.

The ESSENTIAL things that keep Diabetics alive—that most people don’t fully understand:

  1. Insulin—we take insulin daily as we don't produce any on our own. Insulin LOWERS our blood glucose when we are HIGH, we usually take it before we eat a meal. Many people think we take insulin when we are LOW. (Oh Petey, you're low, take some insulin!) That might kill us too! Many T1D’s know that Insulin —the drug that is essential to our survival, has been around 100 years, and at that time was given to companies to produce at no cost as a life saving drug. Without it we die. Today, it is un-affordable for many without insurance, and even challenging for many WITH insurance. Diabetics need to know our ‘carb’ intake at every meal, to determine how much insulin to take. We excel at Math! That’s why we prick our fingers to test our blood glucose (at least 6 times a day) or wear a CGM (continuous Glucose Monitor—which i switched to) that measures our BG every 5 minutes, and sounds an alarm when we are LOW or HIGH.

  2. Carbs/Sugar —RAISES our blood glucose. We ingest carbs/sugar when LOW (Hypos), it raises our Blood Glucose—- That is why we always have candy, glucose tabs (YUMM), juice, cookies, frosting , sugar, etc. on us at all times. It is basically the only thing we ingest that will bring us UP when we are LOW. When we are low, we can have seizures, and even worse (you know, you read about it from time to time). LIFESAVERS take on a whole new meaning for us Type 1’s