Saturday, March 10, 2018

A Dia-versary Note to My Pancreas (and Ghosts of Diabetes Past)

As I mark my 34th year living with type 1 diabetes, it's a perfect chance to pen a letter to my lazy pancreas.

You know, the main culprit behind this chronic condition who managed to convince my immune system it ought to attack what it shouldn't.

But before we get to that, let me recap my D-story for those who haven't heard it before.


My Diagnosis Story


Being 5 years old at the time, I don't remember too much.

I'm not exactly sure when my diabetes anniversary actually is. I have self-designated March 10, because that's as good as any date. And because it happens to be Chuck Norris' birthday, so for me it adds a theme of karate-kicking diabetes into line.

Anyway there was an overnight visit to my paternal grandparents' home. An unfolding of events that mirror many diagnosis stories -- waking up during the night, excessive thirst, frequent bathroom trips, moodiness (for a 5-year-old). My grandparents explained these symptoms to my parents, who instantly knew there was a problem -- as my mom has been a type 1 since she's been 5 years old herself.

Urine tests, which were pretty much all that was available at the time, showed results that were very high. A quick visit to the pediatrician's office had that doc pointing to diabetes, but him wanting to send me for blood tests and admission at Children's Hospital before declaring defeat. My mom recalls standing in the hallway crying, and having a staff member at this doctor's office saying to her, "Don’t worry, it’s not that bad.” Her response: “You obviously don’t know what is involved in this or what it is, or you wouldn’t have the nerve to say that to me.”

Luckily, due to my parents' preexisting knowledge of "juvenile diabetes" as it was referred to then, they acted fast and thus BGs were only into the 200s at the time I was admitted to the hospital. Tests confirmed the suspicions, but I stayed there for just three days, since I'd been diagnosed early in the "honeymoon" phase and my parents already knew most of what they were instructing on diet, injections, and so on.

The rest, as they say, is history. 34 years' worth now.

With that, I have the following "short but sweet" message to my pancreas...


Dear Pancreas...

You are damn lazy. You've not been doing your insulin-producing job for more than three decades now.

Our relationship can be frustrating and occasionally your failure really gets me down. At times, it can be scary. As I near my 40th birthday and have lived more years with diabetes than without, complications have become a reality and I do fear that more may come as I get older.

I also realize that I'm one of the "lucky" ones, as I'm able at this point to afford what I need to stay healthy. And as much as I take my health and often that access to meds and supplies for granted at times, I recognize that many don't have that luxury. And so with your help, Dear Pancreas, I use my written voice to help in whatever ways I can.

At least for the most part of the past decade, I've not been too angry -- because your slacking has brought incredible moments into my life that wouldn't have existed otherwise. Mainly, a connection to the Diabetes Online Community (DOC) where I've met amazing people. And the ability to use my journalism background to work to help inform others dealing with this disease, while also "wearing the advocacy hat" to make a difference in other ways.

For that, I must say Thank You.

You are a complex organ and many mysteries remain in trying to pinpoint the causes of T1D and why you do what you do. And make no mistake: If I could trade you in for a better pancreas, I might think about it. But all in all, I appreciate you. I'm still standing, and feeling pretty well right now to boot.


Ghosts from My Diabetes Past


I also want to recognize a few individuals who were the first to play a part in my diabetes care. We all have them -- those "first responders" who helped us get through diagnosis and learn to thrive.

For me, three individuals stand out: my first two endocrinologists and first diabetes educator, who will remain anonymous here as Dr. Friendly, Nurse Kathy, and the unforgettable Dr. Strict. To this trio, I say the following:

- - - - - - - - -

Dr. Friendly: You diagnosed me with type 1 way back in 1984. We came to see you at Children's Hospital of Michigan in Detroit. Although the details are fuzzy, my mom and I both remember that you were very nice and really cared. Unlike other docs through the years, you were very good at dealing with kids and didn't try to treat them like little adults, meaning you didn't have expectations that I'd follow rules and routines like older patients might.

Not long ago, I found you on Facebook and it's been great to reconnect online! I believe every PWD should start their journey with someone caring like you, because what mattered most to my 5-year-old self is that you didn't make diabetes scary; you made it seem doable.

- - - - - - - - -

Dr. Strict: You teamed up with Dr. Friendly a few years into my diagnosis, and we were together through the time I was about 18. While I remember you knowing your diabetes management tenets of the 80s and 90s, we didn't see eye-to-eye on how to communicate.

You were very tough and liked to use scare tactics to convince me why D-Management was so important. What you didn't realize was that your attitude and judgement made me rebel even more. I heard those horror stories all the time, and didn't need your reminders at every visit! Of course, my double-digit A1Cs were bad news... but the support and two-way discussion I needed wasn't your strong suit.

Now of course I regret not taking my diabetes more seriously back then, as you were just trying to make me understand. One memory stands out among the rest: You looked into my eyes after seeing my 15% A1C, and told me that I was killing myself and would be dead by 21 if that continued. Yes, that was harsh but it was a truth -- and it set me straight for a time. So that particular scare tactic worked briefly, but it didn't inspire long-term change. That didn't happen until many years later when I found hope, a purpose in my life, and peer-support that truly gave me the empowerment and motivation needed. And make no mistake: long-term motivation is the stuff of survival.

- - - - - - - - -

Nurse Kathy: You were the face of my Diabetes Care Team, the person that I always looked forward to seeing and working with when I came into the office. I understood that you were "overseeing" all aspects of my day-to-day D-management, and our family could reach out to you at any time. You wrote a touching letter for me about several years ago when I was applying (belatedly) for my 25-year recognition certificates from Lilly and Joslin, and I think that quoting that letter here would be the best way to illustrate how much impact you've had in my D-Life:

I have known Michael Hoskins since March of 1984, when he was diagnosed with insulin-dependent (type 1) diabetes at the age of 5. I recall specifically that Michael was 5 when diagnosed, as that was the same age his mother had told me she herself was diagnosed with diabetes. I continued to work with both Michael and his parents through our outpatient clinic, until I left my position at Children's Hospital when Michael was 17 years old.

It is with great pleasure that I write this letter, and I smile even now when I recall the image of 5-year-old Michael for two reasons:

1. Michael had a stuffed animal, "Froggy" that he held and dragged around with him (as seen to the right, in a pre-dx'd pic with my mom's parents).

2. He always lit up with a smile when 'Nurse Kathy' came to see him.

Mr. and Mrs. Hoskins were in regular contact with me through the years I worked at Children's Hospital, and I recall providing helpful hints to his mother when he was getting ready to start school and continued with regular contact on the phone as well as at clinic visits as Mike grew and developed. I remember that both of his parents highly respected our advice in regard to handling Mike's teenage years, and I was always proud that the love and limit-setting they provided helped him (and them) make it through his growing up period without any obvious physical or emotional scars.*

Since 1996, I've continued to maintain contact with Mike and his family as a friend and at times a consultant. I have seen Michael grow from a brave little boy who did not complain about taking insulin injections or having to follow a diet, to a mildly rebellious teenager and now to a responsible man who is married, working in the newspaper industry, and taking charge of his diabetes control.

*See? A health professional attests that I have no scars -- all good!

Nurse Kathy, thank you so much for all you've done for me through the years. You now have your own private health education and consulting practice and it looks like you're doing great. The advice and care you gave me when growing up helped empower me, and that's been invaluable.

 - -- - - - - -

Now that I've moved on from general and legal news reporting to diabetes journalism here at the 'Mine, and in connecting with many more CDEs through the years, I can appreciate even more how much you did for me early on. Also, just so you know: Froggy still sleeps with me each night, as he's still my special "Frog Before Diabetes." There aren't many memories or items that have stuck with me from those very early days, but an image of your face always did -- and still does now -- bring a smile to mine. All I can say now, once again, is Thank You!



So, whether your diabetes diagnosis was over 30 years ago, like mine, or whether it's another day of the year or even a day you don't remember, happy diaversary to you too! Here's to long life with many positive influences!