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CWD: "You Can Not Like It and Still Do It."

Joe"Friends for Life ... this conference is delicious.  It's like the Woodstock of diabetes," he said, pacing around the room and smiling warmly.

Meet Joe Solowiejczyk. 

According to his bio on the CWD website, "He [Solowiejczyk] currently works for LifeScan, as Manager of Diabetes Counseling & Training and is a faculty member of the Johnson & Johnson Diabetes Institute. Joe is healthcare professional who has lived with Type 1 diabetes for over 47 years, Mr. Solowiejczyk has been able to translate his personal experience into patient care."

To my untrained eye, Joe is the "guy who gets it."  He's a diabetes nurse educator, and a person with diabetes himself.  If he was a member of my personal medical team, he'd be the one I take most seriously because when I say, "It sucks," he could respond, truthfully, with "I know."

Joe hosted a session at Children With Diabetes called "It's Not Just a Numbers Game."  This grabbed my attention because I write constantly about how an A1C is only one part of diabetes management.  There's all this emotional and mental stuff that comes into play.  

"Ask me if I like it," Joe said to the group of us.  He paused for a second.  "I hate it."  

I was sitting at a table with a bunch of CWD parents (including Bennet and Michelle) and I heard them all chuckle, but I just nodded in agreement.  Empowerment is being able to say that diabetes is hard and that it sucks sometimes, but still forging ahead and working towards better health.  I was glad to hear Joe telling this group of parents (and adults diabetics) that diabetes doesn't have to be something we like.  We can hate it, openly, and still remain positive.

"I schedule my diabetes depression days," he said.  "I plan them and then I tell everyone I know to call me every hour and tell me how courageous I am."  He laughed.  "After about an hour, I'm sick of it and I just want to move on with my day."

I like Joe.  I like listening to him talk and I respect him for managing diabetes for over 47 years.  I respect him for saying, "It took years for me to be able to say, 'I'm having a hard time with diabetes,' without it being a chip on my integrity."  This statement resonated for me because I think people want to read blogs about diabetes and find a lot of upbeat moments and happiness.  But the truth of life is that there is an emotional gamut to be run and we have the right to run it, diabetes or no diabetes.

"You can not like it and still do it.  Hating it [diabetes] and doing it are not mutually exclusive states." 

He talked about the daily duties of a person with diabetes, from waking up in the morning and testing to all of the bits and pieces of precision management that are required along the way.  The possibility of a cure was mentioned.  And while many diabetics say "I'll eat the contents of an entire Crumb's Bakery," or "I'll drink orange juice FOR FUN," Joe smiled gently.   

"If there's a cure?  What will I do?  I'll sit on a park bench for three weeks and stare at the sky and do nothing."   

Counting clouds for a cure.

It'll be 23 years for me this September.

I'd love to sit on a park bench and count clouds for a while.

Comments

Thank you Kerri for summing up some of what I have been feeling for the last 6 months. Daughter diagnosed at age 6 in January. I'm allowed to hate diabetes while strive for optimal care for her - Hallelujah!!!! Thank goodness cause I am tired of everyone telling me that a cure is around the corner and just you wait, it's a comin'. Can I just get through today I wanna tell them honestly, all I am asking for in this diabetes game is to get through today. I applaud you for 23 years. Thank you.

There need to be more people like Joe in the diabetes care community. People who do more than just tell you all the "shoulds" of what you're doing wrong, or need to improve on, and can completely sympathize with you in the emotional toll caring for yourself takes. Allowing a small pity party, but then helping you see that really, it's life and it's better to be lived healthy. YAY for Joe! And for all those others out there who can see through the medical numbers to the person struggling to get through the emotional battle of living with diabetes.

I like Joe, and I've never even met him. Thank you for sharing. What I also wanted to point out is that he works for a pharmaceutical company. Sometimes our diabetes community can bash the companies where we get our supplies and medicine because the suppliers "don't care". I've never been in that camp. Thanks for a real life example in Joe. Gosh I wish I and my young adult son had gone to CWD this year (ever for that matter).

Doing nothing. Wow, that has never sounded so beautiful. Thank you for introducing Joe and his words. Wow.

Joe is magic.

He has been an inspiration since we met him three CWD conferences ago. He has helped us separate feelings and doing too. That is a real gift.

Joe helps me focus on what is important. Doing is important and so are feelings. They are just different thing.

Seem like truths we should hold self evident but it isn't evident at all.

I love it....and I love being reminded of the fact that I can openly hate this disease that has barged it's way into my little girl's life. It's often a struggle for me to really share my true thoughts and emotions on my blog for fear of sounding whiny. I try so hard to stay positive for Jada- but sometimes I just have to let it all out!

It would be so weird to have a cure. I'm at 21 years of Diabetes and I think I would stress every time I sat down to a meal and didn't bolus for at least a year. I would probably freak out and still test my blood all the time to make sure diabetes didn't come back.

Kerri, thanks for this post.

It helps to be reminded that hating my diabetes is okay. It's been such a struggle for me, hating the meds, hating the testing, hating the limitations on what I 'should choose' to eat.

Ironically, I was diagnosed type 2 about 5 years ago, just after finally making peace with food and an eating disorder that ruled my life.

Now, I often feel that a disease (albeit a different one) rules my life, and food is (still) an issue.

Ignoring my disease doesn't make it go away...and paying attention does give me a sense of control.

I've brought my A1c down from 8.9 to 7.9 in 30 days...so I've got incentive to continue the journey. Thanks for the reminder today that it's worth it. :-)

I was at this session and it has had a profound impact on me and my relationship with my son already (and it's only been 6 days since the session!). Thank you for the well written recap.

I enjoyed reading this post. I've always tried to not hate diabetes,but last week i really did hate it. My son ended up in the hospital in Atlanta during the Boys Volleyball Junior Olympics because he caught a bug that his teammates had and hid diabetes complicated everything, They got to still play, but he ended up dehydrated, ketotic, and in the hospital.It SUCKED.I'm ready for that bench NOW.

What would I do? First thing say a thank you prayer.

A 'cure' always seems to be so far away, but one day we'll be there. For me a cure would be not having to worry about BG testing. So if a cure was injecting myself with a special insulin that only worked when I was high I'd take that. The big PITA is the testing and trying to keep things around 100.

Hearing him speak was truly inspiring, and his honesty was funny and refreshing.

They filmed him at our session, and I wonder if the tape will be made available to the public. His is a message worth spreading.

Thanks for a really wonderful post. As a PWD / Type 1 for 45 years it has been a struggle to be able to honestly deal with my feelings about this betrayal of my body. I was never allowed to express ANY unhappiness about this disease growing up and as a child and teenager it made me feel completely unknown, unheard and alone. I'm sure my parents couldn't deal with their own emotions so it was all shut down. I hate whining and complaining, but occasionally it's necessary. I certainly do appreciate reality and honesty and sometimes admitting to having difficulties, acknowledging that something just sucks is not the same as complaining - especially when it's limited in scope and time. It might be the most appropriate of expressions possible. So great we can come out of the closet and be more fully feeling human beings - helps one to experience both good and difficult. And it's so great to know, finally, that we are not alone figuring out how to live with the Big D and its many complexities. I am SO grateful. Blog on and thank you!

Glad you stayed to listen to Joe!! He is awesome, and even if you heard the same talk last year, it is always worth repeating. We make a point of hearing him every year!

This post came at a good time for me. I am having one of those "I don't want to do this anymore" days - not that I don't want to do everything for my son that I can, but that I don't want to do everything I can and not see a number that seems like we are making headway (I was going to say succeeding, but I am learning that I cannot hang "success" on a number . . .) This is a good reminder that I can still do this - even though I hate that I have to do this.
Thanks Kerri

I am definately looking forward to that bench no matter when it comes.
I wish I could have heard Joe speak. I am certain it was amazing.

Thanks for this post.

Up until a couple of years ago when people would comment to me "wow, that must be hard" I would respond with "na, it's not that bad". I've learned to say, "yes it is really hard, and I work my butt off to have good control." Is it crazy to want to say that one of my talents is diabetes management?

I'd like to sit on that bench with you one day...

I had the pleasure of listening to Joe at a JDRF event here in January. I really enjoyed it and wish I could have been there for this talk.

"I schedule my diabetes depression days...."

That is the best comment I've ever read!

As always, Kerri, I enjoy reading your posts. Those of us with diabetes are blessed to have someone like yourself who has a gift of writing combined with a heart of thoughtfulness and kindness.

People like Joe are always an inspiration in that you see that it is possible to live with type 1 diabetes for over 40 years and still look and feel and be healthy.

I will mark 22 years with type 1 diabetes this December, and am committed to good health. I am far from perfect in my diabetes management, but I am blessed to have a doctor at the Joslin who always tells me to not sweat the sometimes higher than I'd prefer BSL's.

Just as important as striving to maintain good glycemic control and healthy habits (exercise, diet), a healthy and sound mind is essential as well.

Forums like this, people like you, and all of the dear folks who read and comment on your blog, all help to create a healing, restorative, and inspirational place that benefits the mind, body, and soul.

Joe is the man! I've known him for years through Camp Joslin. He's quite a character. I was just browsign through your page when I saw his picture.

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