Friday, June 14, 2013

How Did Your Type 1 Diagnosis Make You Feel?

Dr. Stephen Ponder, a pediatric endocrinologist, started a discussion on his Facebook page about the effect that a type 1 diagnosis had on the lives of his type 1 Facebook friends. He invited us to reply and describe our feelings back then. Most of his type 1 friends are the moms of type 1 children, so I am posting about this here. My reply is unique because of my number of years as a diabetic, and is posted below:

I am 73 now, with very good diabetes health, but I was diagnosed in 1945 when I was 6. Years later my mother told me about the diagnosis and that the doctor gave no advice except that I should not eat sugar. For that reason diabetes did not change my life very much. I adjusted very well, and rather quickly. Having to take a shot once per day and not getting to eat candy and other goodies were the only day to day changes in my life back then. There were no finger sticks until the 1980s, testing urine each morning was painless. I did not know about the possible diabetes related complications until I was an adult, so I led a carefree life. This makes it seem like things were better then than now, but that is not the case. Many more type 1 diabetics had terrible complications with eyes, kidneys, etc back then and there were very many deaths from diabetes. It is not known why some of us from the early years lived so long and stayed healthy. I am not aware that I ever had DKA, and I never heard of it until the 1980's. I led a rather normal life without worrying about my diabetes.

I wish you parents of young type 1 children today did not have so many worries. The extensive knowledge available now enables you to know what can happen without good control, so you worry so much and watch your children so closely. That is good though, and it leads to good results. At the present time the life expectancy of young type 1 diabetics is almost as good as that of non diabetics. That is a very encouraging fact!!

3 comments:

  1. Thanks for sharing, Richard. Times sure have changed, haven't they. I'm glad you're here and in good health. I appreciate all that you do to share your story.

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  2. Thanks Scott. I appreciate all that you do. I wish I was able to be out there doing the same thing that you are doing. I hope we will meet again at the FFL in July.

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  3. Dear Richard,
    I read your book a few years ago when it was published - before I found the online community and before I read many blogs written by parents of cwd or adults with diabetes. Your story was very inspiring to me and still is. I remember reading it and thinking you were just sitting in my living room telling me your story because this is how you write - like you are just sharing a story. It was comforting. Although I believe you mentioned your online presence in your book I didn't think to go looking for your blog. It took me a moment to realize who you were sitting in the front row of the social media session. I was the loud little bit crazy lady also in the front row but other side than you.
    I had mentioned how some very well meaning members of my extended family suggested recently that I have too much diabetes in my life. I can't really help them understand what it means to have the support of the online community. Just like I don't believe people that don't have diabetes in their lives can truly understand it - I don't think those who don't participate online can understand it.
    Being so involved means I am always aware of the newest technology and medical advances. It took me over 5 years to get involved. During those first 5 years (and two kids diagnosed) I relied on my kids endo's to know what the best management tools were. Now I believe I likely know more than their doctors. Also living where I live in Nor Cal - just 45 min away from Stanford University means my kids get to participate in studies using the newest technology. My kids each wore the Dexcom G4 CGMs before they were available to the public. It is amazing to have so many tools available.
    I asked my kids about how they felt at diagnosis. My youngest doesn't remember (he was only 2) but I do remember when he realized that diabetes was not a good thing. He realized it when my daughter (diagnosed 2 years after him at age 7) said she hated diabetes. My son got very defensive - said "don't you say diabetes sucks". Yes I had to leave the room after hugging them both so I could cry in the privacy of my laundry room.
    Because of all the advances in insulin my kids diets didn't change all that much. Yes we limit fast sugars - basically anything that can be used to treat a low blood sugar is not something they eat when it isn't needed. We didn't give up pasta, potatoes, rice or bread for the sake of diabetes - we just started measuring them prior to eating them. I wonder if this is always the best choice - reducing the frequency and quantity of starches would likely result in better control but my kids are growing and need carbs to continue to grow. IMHO
    We have had the great fortune of knowing Dr. Ponder in person. He is the medical director of the week long sleep away camp my daughter attended for 3 years in TX and my son attended once. Sadly we moved and my kids are no longer eligible to attend his camp since it is only for TX residents. He is brilliant man and I thank him for all the knowledge he shares with us.
    I've been wondering how our lives would be different if we lived in a time that information was not so abundant. If ignorance can be bliss? Mostly I am grateful for all the knowledge shared - my kids live full lives and you are correct - people with diabetes can and do live as long - sometimes longer than their peers with little to no complications. My kids are strong and smart and brave and I see their futures as bright and wonderful.
    Thanks for sharing your stories and thoughts.
    Cheers
    Tina

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