Wednesday, April 6, 2011

Getting to know the man in the rainbow tie.

He was the gentle looking man in the corner with a rainbow tie. When I walked into the room after lunch and saw him there, I thought it would be nice to introduce myself.

I walked over to him and said, "Hello, I'm Meri Schuhmacher."

"Hello," he said, "My name is Richard Rubin."

"Nice to meet you."

And I walked on. As I settled into my seat, introductions for the next half of our session began. Dr. Francine Kaufman introduced him. She kissed him enthusiastically on the cheek and said, "Everyone in this profession has learned at his feet. If you don't know probably shouldn't be here."

I sunk in my seat. I had no idea who he was. Filled with shame I grabbed my pen and poised it for action. If I didn't know him now, I dang well would by the end of his session!

His name was DR. Richard Rubin, Associate Professor at Johns Hopkins University.

For the record: I now know who he is, and I love him. Seriously, I wanted to wrap him up in a gum wrapper and put him in my purse.

He started his speech with pictures of his family, and his connections to type 1 Diabetes. First his sister, then his son. I bawled like a baby. We all know that is how I roll. Here is a tip for the next forum Medtronic...Kleenex on the tables! I was 5 minutes into the water works before I realized I had a napkin under my can of Diet Pepsi. This man was one of the firsts to recognize the emotional element to diabetes. He wanted doctors to be cognoscente of the impending burn out that ALL people with diabetes face.

Most of his speech is a blur to me. I was transfixed on his words...wide eyed. He so eloquently explained how much he "gets it." The entire room nodded in unison as he spoke of Diabetes Burnout and his advice how to curb it.

What he wanted to convey, and what I always have it's all about perspective. And laughing.

Perspective and laughing.

90% of those who read this blog are parents of children who have Type 1 Diabetes. I'm going to go out on a limb here and guess that our biggest ailment is GUILT.

Every time a number is high. We feel guilty we didn't bolus enough, or SWAG properly, or take in consideration the emotional aspects of our child's day.

Every time a low number flashes before us, we are ridden with guilt that we should have bolused less, or we should have stepped back to look at the bigger picture of the day...or seen the pattern of lows from days before.

Every time anything happens, be it an occlusion in the pump, or a Chinese food buffet gone wrong, we blame ourselves.

Dr. Ruben encourages us not to look at things as "mistakes," But rather to think of our efforts as an "experiment" to get information.

He says DON'T look back...look forward and ask yourself, "What can I do next time."

Letting go of the guilt is a big one. It goes against the metaphorical grain of a parent. We want to bang our head against a tree again and again and lament on how badly we messed up. It took me 12 years to be able to look at a 400 on the screen and not feel like 100% loser. Do you feel like that 400 is your fault, or diabetes fault? I reckon many of you feel as though it is your fault. That you failed your child. I still have my moments, but I am able to let it go more easily these days.

Let's face it, guilt is like throwing kerosene on a forest fire. It isn't going to do anyone any good.

To help with the feeling of failure, there was a great story brought up about Thomas Edison. A man came into Edison's lab and saw all his failed experiments. "Why do you continue to try to invent the light bulb after failing 5000 times?"

"I don't think of it as 5000 failures," says Edison. "I think if it as 5000 steps closer to a solution."

Booya! Love that!

Dr. Rueben also gave some tips for avoiding diabetes distress.

* Keep your eyes on the prize.

*Motivation has to be has to come from you. (For us parents, I think that motivation may be a bit easier than those who live with it. Our motivation is a healthy future for our child/children. They are our constant reminder. Their sweet faces is why we keep going.) Whatever our motivation, it needs to be personal, present and positive.

The biggest thing I took in was the importance of looking at your successes. Dr. Ruben says there is a TREMENDOUS benefit to looking at success rather than failure.

As parents it seems some days/weeks/months...all we do is fail. As a parent of three type 1's, it seems sometimes I am set up to fail. I mean really, what are the chances that all three of my boys are right on target? We are REALLY hard on ourselves. But we can move forward by recognizing that we ARE doing things right. Looking at success can lift our spirits. We can all be better parent-pancreases if we look at things positively, rather than negatively.

If we do something right, ask why it went right, and what we did to get it right.

Sure, sometimes it is dumb luck, but that dumb luck is a victory none the less!

Lastly we learned that we all need to find a way to get the support we need, and we all need to find a way to relax. Yes, parents with children with diabetes need support too! We can't do it alone! Find a friend who gets it! (Hey, I'm one right here!) Find a way to relax! (Hey, blogging is great way to get it all out!) And most importantly, find a way to laugh.

Laughter really is the best medicine.

Dr. Ruben asked me how I relax...and since I was put on the spot, I said going out with my husband. But afterward I wanted to kick myself. Honestly, as much as going out with my husband is DA BOMB, the best way for me to relax is to blog. I don't plan out my posts. I sit in front of the computer and just start typing what is in my heart. I wasn't planning on blogging about Dr. Ruben today...but I saw my notes on my dresser and laughed when I saw a note to myself, "Meri, get over it! You are doing a good job!" Maybe I need to make that into a plaque. :)

I hope I didn't bore you with all my notes, but I wanted you to get a feel for the experience I had. Dr. Ruben had an intense desire for us to go back and tell all of you these things. He wishes as much as I do that all of you were there with me. Dr. Rueben is good people. For sure.

Dr. Richard Ruben has co written a bunch of books. Google him and check them out for yourself! I won "Sweet Kids" in a drawing at the end of the forum. I can't wait to dive into it.

Next time I meet Dr. Ruben I won't walk on. I will thank him profusely for his tireless work to get endos to understand the importance of emotional help for those with diabetes. His efforts have made a difference to so many in this, that includes me.


  1. Fabulous post from your heart. I so needed to read what you wrote, about Physicians and the professinals putting the emotional element first. And the guilt, oh ya, I compare my wife to the dinosaur in Toy Story. Great Post!!! I'm so glad you spotted the notes.

  2. Love you, love your post, love Dr. Richard Rubin!

  3. Love this post Meri!
    I have recently started calling my son - "my little science experiment" and it does really wash the guilt away. There is no guilt in science! Maybe I am finally seeing the plan God had for me when I suffered thru grad school and did all these stupid experiments that never seemed to work out - He was teaching me the patience I'd need 8 years later to look at what did work, analyze what didn't, and use it to make my work better the next day. I hated grad school and have always thought that given the chance to do it over, I wouldn't have done it. But you know, I wouldn't be the same, and I wouldn't be the great D-momma that I am without it. Thanks for a post that really made me think and brought me a smile on many many levels.

  4. Thanks, Meri. I will *try* to focus on the successes. We had a great day with nothing over BG 205, then Pod failure and all I could think of was the Pod failure. Guess I have a ways to go. BTW: we got a T1D baby sitter coming on Friday. That will be "da bomb"!

  5. Dr. Rubin is one of my long-time heroes, and when I grow up, I want to be the female art therapist version of him. He's been a gift to the diabetes world.

  6. Not the least bit boring! Thanks for sharing your experience and encouraging words. I need a plaque, too! My daughter is T1 and we're rocking daytime numbers as of late, but my focus is on the nighttime that is kicking my butt right now. Just have to keep tweaking...not wanting 5000 nights to get there, but I'm getting closer and we're on night 12. :)

  7. I love that the way you relax is to blog . . . on a selfish level I am just so darn happy you blog because I NEED to here from other d'rents. I also love that you sit down and write from you heart. Too much filtering and thinking about a post ruins the authenticity, ya know?

    So, what I am saying is I am glad you relax with us and not with a 5th of Jack Daniels ;)

  8. You always seem to hit the nail on the head and this time is no exception. I too am very good at being hard on myself and thinking, why did I give him his meds BEFORE he ate instead of after when he decides not to eat. Then I kick myself for not giving meds before bedtime (afraid of the nighttime low when he doesn't eat dinner) and then he wakes up high. I need to get over it and just try to look to the future. What can I do better tomorrow.

    And Becky V. I am so totally like you too. My children are my "science experiments" and I think like that because I was a science teacher (and hope to be again) and plan on someday going back to school to become a real life scientist too!

  9. Thank you so much for sharing this, Meri! Dr Ruben sounds phenomenal! I'm going to have to go look him up now!

  10. You are never boring. Even when you're writing about tough days, lousy numbers, I always come away feeling like I've been standing at the fence next door, just chatting.

  11. I've read several of his books. I would have loved to meet him in person...but I think I would have missed out on this message while my mind was still filled with worry. I appreciate your point of view and just the fact that you were able to make this trip with three with d at home, it gives me great hope to know that my day will come, too where I will be able to board that plane and have fun without overly worrying all day long. Thanks so much for sharing about this experience - I love knowing you weren't just learning about medtronic while away :)

  12. I love the thought of thinking of diabetes management as an "experiment." It really is.

    This sounds like it was an amazing experience! Thanks for blogging about it! I'm definitely going to have to check out some of Dr. Ruben's books!

  13. This was just the post I needed to read today! Thank you for sharing your notes with us. Not boring - not even a little bit boring.

    I'm so glad you blog!
    Thank you, Sweet Meri!

  14. Dr. Rueben IS good people, and so are you, thank you!! I almost feel like I was there, thanks-and we totally need to manufacture some plaques! : )

  15. I love your posts ho, sounds like you are chatting with us all. I heart Dr. Rubin too and wish I could meet him in the upcoming years. Sounds so worthwhile for you to have attended this!!!

  16. Going to look him up NOW! This post was so timely..right on the heels of a disappointing A1 c. You always inspire Meri..THANK YOU!

  17. This is great! He sounds amazing!

    Thank you for this. I am someone who always feels guilt about something. And after yesterday- I NEEDED this today.

    So when I feel bad or guilty or down--- I will think if you and this post and I know I will feel better!!

  18. You are the bestest Meri!!!! I love all your posts. I always wonder how you always know how to time them just right :)

  19. So glad you had this experience, and let us all peek in. I'm not sure anyone other than another D-parent can understand the emotional stress we undergo every day, and how personally we take every one of those off-target numbers. Sometimes I am amazed that people actually expect us, untrained as we are, to be able to protect and defend our children's health and lives every hour of every day. But, we do it, and I know I couldn't keep on keepin' on without you and the rest of the D-peeps out there. You're doing great, and so is every other D parent I know of. Big hugs!

  20. Thank you so much for sharing! I LOVE this post and it's filled with great info!!!

    Science mantra....

  21. He is soooo right. I need to remember this post the next time I am about to lash myself (not the "mascara"-type of lashing).

    Your insight paired with his disucssion is uplifting. Thank you for that. xoxo


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