Who am I?

(Updated July 10, 2012, because the previous page was really outdated and irrelevant.)

Hello.  My name is Scott.  I’m in my late thirties and have had Type 1 (formerly known as Juvenile) diabetes for over 31 years.  I live in New Jersey with my wife and two sons (born in 2007 and 2011).

No one in my family has diabetes but me.  My family supports me with it, but I’m convinced there’s no way to really, truly understand what it’s like to live with diabetes than to actually experience it.  Not that I recommend it; if you don’t have diabetes, be thankful.  But if you do have it, particularly Type 1, you understand where I’m coming from. It’s tough, but completely manageable.  This blog is about how I manage, how diabetes affects my life, and how life goes on with or without diabetes.

I use an insulin pump.  I started pumping in 2006 when my wife and I decided to start a family, because I wanted to get better control of my health, and to make sure that I could care for my kids for as long as possible, before they had to care for me.  At the time, I automatically selected the Medtronic Minimed product line without doing any research.  If you asked me six years later, with much more knowledge of pumps than I had at the time, I’d still select Medtronic.  It’s a fine product.

I put Novolog in my insulin pump.  The pump puts Novolog through a tube and then into my body.  The tubing doesn’t bother me at all.  I also take Synthroid pills, because my thyroid seems to be following the lead of my pancreas.  I’ve had my share of hospitalizations due to hypoglycemia, but never went into Diabetic Ketoacidosis (DKA).  I have no complications, that I know of, other than the thyroid thing.  Knock on wood.

I don’t know much about my diagnosis.  It was in April of 1981 (UPDATE: I now know more about it, and it was in May, not April), and I remember peeing a lot, so my mother decided to take me to the doctor.  Then I was taken for a ride in an ambulance to the hospital, which was fun for a seven year old.  Since I was getting over Chicken Pox, they put me in my own room in the adult wing of the hospital, not in pediatrics.  The nurses loved me since they usually saw grumpy old people, not little kids.  In the hospital, I played with the buttons on the bed that make the head and feet go up and down.  Eventually, I broke it, so they brought be a bed with a manual crank which I couldn’t operate.  That wasn’t fun.

Only recently, since becoming a parent myself, I’ve grown to appreciate how much my parents did for me when I was younger.  I also am a bit apologetic at not taking care of myself in those years, despite their efforts to get me to do better.  But I can’t change the past, I can only look at today and tomorrow.

Not only did my parents have to deal with me and diabetes, but also with my younger brother, Daniel.  He’s got a neurological disorder called Angelman Syndrome, which happened because of a flukey genetic mutation.  Sometimes I write about him.  He’s two and a half years younger than me, but his mental abilities are those of an infant.  I’ve watched my own kids grow and surpass my brother, and it’s awkward to see that happen.  But he’s been a huge motivator to me, demonstrating to me that I can do things that I never thought possible (Seriously.  As gross as it sounds, once you’ve changed the dirty diaper of a 30-year old man who’s kicking and screaming and fighting back, you realize that you can accomplish just about anything.  Though I never want to do that again).

My parents are incredible people for raising two kids with their own special needs.  Even though I don’t consider myself a “special needs kid”, from a parent’s perspective, I suppose I was.  I never tell them that, though.  I’m not good at speaking emotionally, from the heart.

I am good, however, at writing from the heart.  And that’s what I plan to do here: write from the heart, relying on emotion, observation, and compassion, because that’s just what I do and who I am.

But enough about me, I’d love to hear from you.  Please add your comments and feedback to my blog posts, because I’d really like to get to know my readers.  The feedback is what I crave, and it keeps me going.

  1. I’m glad I fell upon your blog; definite follow! I’m Type 1 diabetic as well and blog about it and life as a parent with Type 1. Stay strong! :)

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  2. Thanks for reading, DY, and I’m glad you’re enjoying it so far!

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  3. We have a few things in common. :) T1, of course, but to this day, I still don’t know the exact date of my diagnosis. I should ask my mom, but maybe part of me resists that knowledge. I have no desire to know it. I only remember it was mid fall, around Thanksgiving–I think–’89?

    I also love my MM pump and am upgrading this month with the Revel. Anyhoo. I never met anyone with diabetes until four years after my diagnosis. Even then, it was just a girl in my school and we never did connect. I never went to camp or any type of support group. I was alone. That’s hard to say outloud because it seems like a huge negative against my parents. Yet, at the same time, perhaps it made me the independent, resourceful person who was able to find the DOC and make the most of the disease. who knows? I can’t go back in time either… we have that in common, too!

    I’m looking forward to following your blog.

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    • Thanks for the feedback Bethanne, and thanks for reading! I did recently, finally learn the date of my diagnosis (there’s a link in the 5th paragraph) but it doesn’t really mean much to me. The details of what happened at the time are more interesting.

      About never meeting anyone, I’d said that for the longest time, but looking back, there were a few others I knew who had T1D, but we never spoke about it so it really didn’t click. Something about me has changed lately and I love to talk about it, which in part is reflective of this blog.

      Anyway, don’t get upset with your parents about not going to D-camp. I did twice, once when I was 7, right after diagnosis. My thoughts are summed up in the letter I wrote to my mom (but never mailed) that she found when I came home and she has saved to this day. It read, in big letters, “I HATE IT! I WANT TO COME HOME!”. After two classmates of mine were diagnosed five years later and each spent two weeks at the camp, I decided to give it a go again the following summer (this time with people I knew). It was better than the first time around, but really wasn’t anything to be overly joyous about, as I tend to read on other blogs. This isn’t a knock against the camp or anything, it’s just me. I was (and, to a lesser degree, still am) the type of person who keeps to myself and doesn’t do well when thrust into hyper-social situations. My point is that it may not have done anything for you, so don’t feel like you missed out.

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  4. I’m a type 2 diabetic, you have a very interesting website. Thank you for sharing, sir. :)

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  5. Type 1 diabetic that recently embraced having diabetes after 10 years. I have always had good control of it, but would rather not think about it. Definitely will follow your posts, good stuff!

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  6. Melanie Koenig

    Hi Scott! I help run a Meetup Group in Atlanta of T1’s on pumps. I just sent all of them a link to your blog which I stumbled upon while researching the t:Slim (who is sending a rep to talk to us at our May meeting) Thanks for taking the time to blog. It is always helpful for T1s to know they are not alone…

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  7. Hi Scott, so happy to have found your blog. It was by accident while searching the net for “Motor Error” that I came across your experience of the same, and hence your blog. I have a 7-year-old son with T1 diabetes who was diagnosed on his 4th birthday. It was the first time we had that erorr message so thanks very much for sharing your experience.

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    • (Following is my reply to the above — I sent by email because I wanted to make sure Kerry didn’t miss the recent Medtronic alert, which could be related to the issues described. I’m also putting it here if it may be of interest to other readers. Of course, this just describes my own experience, and if you continue to use a pump after the manufacturer advises you not to, you do so at your own risk. As always, my particular actions are not an endorsement of the behavior, and nothing written here constitutes medical advice)

      Thanks so much for reading!

      I would ordinary post a reply on the blog itself, but I just wanted to make sure you’ve heard of the latest Medtronic “alert” (you can find it here: http://www.medtronicdiabetes.com/servlet/servlet.FileDownload?file=00PC000000HITvd ). From what I gather, it could be related to Motor Errors (though not of the variety I’ve had). As far as those errors go for me, I’ve continued to use the pump after getting the error (just call Medtronic so they can record it and have you run through some tests). If you get two – and I suspect that after the first, the second isn’t far behind – they tell you to discontinue using the pump until you get a replacement. I continue using it, just making sure I have enough backup supplies with me. (Also, if they ask you to send it back, they say to keep the battery in but set the basals to zero – It helps them to troubleshoot it. Make sure you also turn off the “Auto-Off” feature and un-link the CGM, otherwise the cardboard box with the UPS sticker will be beeping and vibrating incessantly. It happened to me and was quite annoying!)

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  8. I have a MM pump and just recently called in because I had 2 motor errors within a few weeks of each other, and they sent me a replacement. Wish I’d been following your blog earlier to see this tidbit of info!!

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  9. Hi Scott, thank you for sharing your story. I’m glad that I found your blog. I’m a T1 also and have been for the past 19 yrs. Currently I’m using the Animas Vibe pump and will soon get my CGM sensors YAY! I’ve used the Medtronic CGM because after I had my son, I suffered from nocturnal hypoglycaemia and needed to keep a close eye on my sugars over night. Anyway I look forward to reading more of your posts. Happy pumping :)

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  10. Hey Scott, Just finally added you to my “blogroll” – entering stuff manually without some gadget button to hit, haha… Totally know what you mean – everyone in my life is also VERY supportive about T1D but impossible to know what it’s really like. As Hermann Hesse said – as human beings, we can understand one another, but one man can interpret himself to himself only… also think it’s inspiring about your life, kids, management, etc. Hope to touch base on Twitter and elsewhere soon!

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  11. Hi Scott! I just stumbled across your blog. I’m a T1 in my mid 30’s, have had T1 since the age of 1. I also live in NJ, my husband’s name is Scott, and our son was born in 2011 :) Looking forward to reading more about your T1 thoughts and experiences!

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  12. “No one in my family has diabetes but me. My family supports me with it, but I’m convinced there’s no way to really, truly understand what it’s like to live with diabetes than to actually experience it. Not that I recommend it; if you don’t have diabetes, be thankful.”

    I’m in the exact same boat as you in that regard. It’s an often terribly lonely (and awkward) position to be in. Feeling alone, you want your kin truly understand what it feels like; your altruism, however, prevents your from wanting them to ever experience this disease. It’s an uncomfortable position to be in…you’re torn.

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