Talking Type 1: Erin Stege

Erin is last in our blog series about people who were diagnosed with type 1 diabetes as adults, not young children, and had to suddenly adapt to new lifestyles. Type 1 runs in Erin’s family, so she knew what to expect, but of course it was still a major challenge. Find out how she coped with her own diagnosis, plus that of her teenage son.

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Name: Erin Stege

Age: 39 (diagnosed at age 21)

Location: Edwards, Colo.

I was diagnosed with type 1 diabetes in 1993, but I am not alone in my family. My mom, brother and 16-year-old son, Aidan, all have type 1 diabetes.

My mom was diagnosed when she was 28 years old, and I was 10. She was the first confirmed person with type 1 in the family. I remember her being very sick and in the hospital for a long time as we waited for the diagnosis. After 30 years of having type 1 diabetes, my mom now suffers from eye and feet complications, but she doesn’t share too much about this anymore, as she doesn’t like to cause worry. She is a very strong, tough and amazing woman.

I was diagnosed next. At age 21, I was a single mother of a three-year-old boy, working two jobs and going to school at a community college three days a week. I believe the stress level at this time in my life might have been a reason my diabetes kicked in. I was losing five pounds a week and was so exhausted. To confirm my suspicions of type 1 diabetes, I went to the hospital. After a blood glucose reading of 670, I was sent straight to an endocrinologist.

My brother Keegan was third in line to be diagnosed, at 26 years old. Though I understand it’s not easy and brings him down sometimes, he knows his diabetes pretty well. He has a “go with the flow” personality and is actually quite humorous about it.

Aidan was diagnosed in September 2007. All the signs were there, but my husband and I were able to find an excuse for each one and had not quite put the pieces together. Aidan actually asked to test his blood one evening after watching me. I was numb with a feeling I can’t describe when his reading came up with only the word “HI.” After he washed his hands and got another “HI” reading, I knew.

Aidan’s blood glucose at the hospital was 777. I remember trying to make light of the situation and suggesting maybe his blood glucose was James Bond or that we should find a slot machine right away— I’m sure my son thought that was funny. I remember Aidan immediately taking his own shots in the hospital and even having to correct the ICU nurse. I’m still amazed he caught that.

I know diabetes must irritate the heck out of my son, but overall he has handled it amazingly. I often think that being able to see his mom, uncle and grandma have fun “blood glucose test competitions” was incredibly helpful as he coped with his diagnosis. I couldn’t imagine having a child diagnosed with no prior history or awareness of the disease.

I didn’t take the best care of my own diabetes until Aidan was diagnosed. Our recent A1Cs (a measure of a person’s average blood glucose level over the past two to three months) were identical at 7.7. Mine hadn’t been in the 7 range since my “honeymoon” stage.

Type 1 diabetes hasn’t stopped Aidan and me from doing the things we love. In Colorado, there are a lot of physical activities you can indulge in. Aidan competes in big-mountain skiing, plays on the high school soccer team, golfs, mountain bikes, slack lines, wakeboards and water skis. I participated in my first triathlon last summer, which was just awesome. A few months before, I even found a fabulous group, Team Wild, designed to help females with type 1 diabetes. That was a life-changing find for me.

Aidan didn’t like the sound of diabetes as a word when he was diagnosed, so he decided to start calling it “livabetes.” We even have this on his medical alert dog tag.

Type 1 diabetes is a meticulous disease, and it’s with you at every moment. You don’t get breaks, but it is something you can live with.

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13 Responses to Talking Type 1: Erin Stege

  1. Gwen Worden says:

    Thank you for sharing your story. My son Adam was diagnosed with type 1 last year when he was 14 . He’s the only one in the household that has type 1. Although he picked up on it very quickly and has adjusted well..I still get overwhelmed at times. Hearing stories such and yours helps many of us! Thank you so much and good luck to you and your family!

    Sincerely ,

    Gwen Worden

    • Cindy says:

      Thanks for your story. I was just diagnosed with type 1 at age 50. It sure was a shock & has only been a few weeks. I’m learning that its an everyday thing that is now part of my life. Reading your stories has helped me accept it better. Thanks & good luck to all of you!

      Cindy

      • Melissa says:

        I know a thing or two about diabetes and how it can affect your life. I imagine you have a lot to deal with, but taking care of your feet now will go a long way. Diabetes can really take a toll on the arteries and nerves of your feet. Take care of your feet as if they were baby feet. Check them every night to make sure you have no cuts, calluses or blisters. Anything that is not the norm for you should be checked out by a podiatrist. Try to walk every day for exercise. Walking is the best calf pumping exercise that improves the blood flow into your feet. Stop and go walking does not help, so it must be continuous walking. Socks and closed shoes are also an important way to protect your feet. Please avoid flip flops- they are an all around bad idea for anyone, but more so for diabetics.

  2. Heather says:

    Hi Erin,

    Thank you for sharing your story. My daughter, Madison was diagnosed with type 1 almost two years ago at the age of 8. My husband is also type 1 diabetic, if wasn’t for him I would have been ten times more overwhemled. They never get a break, but they find ways to make the best of “livabetes”.
    Best,
    Heather

  3. barb says:

    Hi, I was diagnosed when I was a freshman in collede at 19. I treated it horribly and now after 25 years I have had a Kidney/Pancreas transplant. Neuropathy to my Heart and ave a pacemaker, had a stroke.Because of my transplant drugs I have lost the ability to see at night, am losing my deapth perception and have Gout. The Gout medicine is contraindicated to the transplant medicine. It is all messed up. I try to cope. I make jokes out of everything and try to go day by day thru life. Thank you for your story it is always great to know you are not alone.

  4. BabsCampbell says:

    Thanks for sharing your story. I was diagnosed with T1 at the ripe ol’ age of 46. It certainly is an adjustment, but I believe attitude is EVERYTHING! Keep up the good work-LIVABETES!

  5. Heidi Di Cesare says:

    I was also diagnosed in 1993 at the age of 28. It’s nice to see a pretty, healthy face with the same disease I have had to deal with all these years! But no complaints here. It’s just a way of life after the shock goes away. Thanks for sharing your story; you and your family are certainly professional livabetics!!

  6. Charlotte Day says:

    Thanks for your story. I was diagnosed at 25 with Type 1. It was a huge shock. I had just come out of an abusive relationship and I believe that was what caused my diabetes. I am hoping that my 3 year old son does not get it at all.

  7. Marlene Fisher says:

    Erin is my niece and her Mom is my sister and as a family member I am so proud of the way that all of them have handled their “Livabetes”! At our house it is normal to see test kits and everyone checking their blood levels. I too have a son with livabetes and he is Erin’s cousin and he too was diagnosed at the age of 28 after an emergency bout of pancreatitis. It was upsetting at the time, but it was easier to deal with since his Aunt and Erin had already been diagnosed and we were all so familiar with everything. I am so proud of “all” of them because of the way they handle their daily lives and just keep on “Living their Lives”! I Love you, Erin!

  8. Suzanne Schrader says:

    My daughter, age 15, got diagnosed with T1 last month. It was a complete shock, as nobody in our family has T2. Erin, you spoke about stress as a suspected factor in your onset of diabetes, and so does Charlotte in a comment above.

    My daughter was having a very stressful, anxious time adjusting to a new school, to the point that her attendance and grades were affected, and I believe that stress was the trigger for the onset of her diabetes.

    I wish more research was being done into treating and curing diabetes. It seems that with the huge profit motive of selling insulin and supplies, there is very little motivation for Big Pharma to research a cure that will eliminate their market. Still, I dream that a solution will be found in my daughter’s lifetime. It is so hard to watch everything she must go through.

  9. terri says:

    I was diagnosed with Type 1 Diabetes at 32 years old with no family history. I can’t seem to control my blood sugars and am a working single mom of two kids who don’t understand why I feel so sick and tired all the time. No one seems to understand having Type 1 and being dependent on insulin shots to survive. People hear “diabetes” and see how thin I am and don’t understand that I am very ill. Stress has had my sugars unmanageable. I hate it so much and wish it would go away. It is nice to read other people’s stories and know that I am not alone although I feel so alone every day. Thanks

  10. Sam says:

    I hate it, i was told i was type 1 a year ago.. i hate it.

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