Of Diabetes, The Lion King and Paying It Forward

At our most recent Children's Hospital of Philadelphia (CHOP) Parent Network meeting there was a newly diagnosed mom having a tough time. Diabetes is hard. Having a child diagnosed is devastating. Truth be told at every meeting, everywhere, there is almost always a family in the emotional deluge of a recent diagnosis.  

Why us, why now, we don’t know what to do.

Our family has been there. Twice. The second diagnosiwas no easier even with the skills to manage it. Maybe because we had the skills and experience and knew more clearly what a diagnosis meant.

That’s the deal with a diagnosis like diabetes. As I become closer to people living with other chronic conditions I learn that the flood of emotions associated with diabetes isn’t unique. A lot of my e-patient friends with other conditions to manage share similar stories. Many also share the value they have found in patent communities. There is a common theme of receiving much needed support from communities and ultimately providing. 

So climb up on Pride Rock and queue the music, that is part of the circle of support. Sometimes I wonder who is doing more for who in that process. Sure the newbie needs a shoulder to cry on. Still I think there are those with experience also have a deep need to offer that shoulder. The truly gifted turn the circle a little farther. The make their chronic condition valuable and see it as an ability.

I read this on the Facebook page of Glu*, It was written by Jen Block, “I consider diabetes to be an asset. Its presence in my life has brought many challenges, but with each challenge I face, I emerge a little stronger.” She is a 15 year veteran so she isn’t all pollyanna and goes on to add, “Don’t get me wrong this is a challenging disease and I have no idea of the challenges you face in managing diabetes; but I do know you are all incredible people.”

In there is a rock solid answer to, why us, why now, we don’t know what to do. Because you can be better for all the challenges you will face. You can be a little stronger and that is incredible. 




*Glu (myglu.org) is a T1D community launching this spring. I have been having fun with the beta.   

Dear Kerri - We used a pumpkin

 Kerri asks,  "Who learned injections with an orange?" We did and we also used a pumpkin. Here's our first dx story written ages ago for the Thank Shoe Section of BadShoe.com.

Connor was just starting to learn the saxophone. His first public performance was in a school talent show.  I think he played Peter Gun. We went out to dinner, something Connor typically enjoys. 

He had a soda or two, used the rest room and felt crummy. He didn't eat. We figured it was stage fright. The next day he moped around drinking OJ and complaining he didn't feel very well.  So Mrs BadShoe took him to the doctor. They called for some blood work so the next day I took him to Quest for a blood letting first thing. 

They tried and tried to get blood and it took both arm to get what they needed. It was early on a school day but Connor didn't feel up to school. So we put on the Star Wars trilogy (the real originals with Harrison Ford not the stupid prequel movies.) Connor was semi conscious, drinking juice and going to the bathroom. 

I figured that if the doc sent us to Quest it was no big deal and we could wait for the results. Mrs. BadShoe and the doctor's office started feeling otherwise. Finally that afternoon she decided to take Connor to the local hospital ER. His blood sugar was off the chart. He was borderline conscious in DKA. He was shipped out to Children's Hospital of Philadelphia as soon as they could get transport.

So not a whole lot of hours after his first ever saxophone performance Connor was diagnosed diabetic. So it turns out it wasn't nerves about performing that had him feeling funny before hand.

Connor (Mom & Dad) needed some help learning what to do. Melissa was our nurse / trainer when Connor was at CHOP. She was very cool teaching us how to get started with Connor's treatment. She was more than happy to turn over the needle to Kim & I so we could stick it to Connor. She also was very good about helping him learn about what was going on. 

As you can see below, Melissa is the type who enjoys her work. 

Particularly when it is sticking needles into loud children like Connor.

It was a rough time at first. Connor was hooked up to this machine as they put fluids and insulin into him. He later came to mock it, and if you look, you'll see he stuck the pumpkin.

Melissa was very good about helping us not only the mechanics of what we needed to do but also how to go about it with a smile. As Connor picked up his louder than life sense of humor returned and found a happy audience in her. She was serious but not solemn and that was a big help.

Connor awarded her a BadShoe Pin and she went straight to looking at her shoes. Lots of laughs Melissa that is another part of the family web empire and your shoes seemed like you could walk on them all day - you pass.

Thanks Melissa. Melissa is part of the Children's Hospital of Philadelphia Empire. The scope of this operation would put Darth Vader and Emperor Zurg both to same. It is everywhere it is everywhere. I also seems that every where CHOP is it is an outstanding operation.

A Little Help From Your Friends

Just after our first diagnosis we got a great email from friend we didn't know was type 1. We were in that wildly fluctuating state of shock, denial, confusion and determination that all parents new to Type 1 experience. This friend knew that we needed some reassurance and chose humor as the way to do that. He used a brilliant strategy of injecting laughs into a time when we had precious few of them. I have shamelessly try to follow his lead since.

This is roughly the story he told.

Like any type 1 kid he did fair number shots. Being a typical boy he was curious and playful with the things in his environment.

Much to his delight he found that if he used toe nail clipper to cut the needle off the syringe it made a particularly effective covert tool to squirt water on classmates.

Now I think I made it clear by the use of the pronoun ‘he’ that this individual is male. So it should come as no shock to anybody with experience at being male that this is just one of those things that we males are genetically incapable of not taking to ludicrous extremes.

Being a male in good standing and with the particular lack of forethought that adolescences ads to the mix he achieved the kind of extremes that guys love to talk about over beers for years to come.

With a little R&T tinkering he found that if he used the toe nail clippers as small pliers he could bend a small angle on the needle to allow for even more concealed around the corner squirting.

These concealed weapons achieved great success. In an entrepreneurial society, like ours, such success is rewarded in the marketplace.

Consider the business model, the cost of good sold is negligible with insurance covering the purchase of syringes. The supply is plentiful with multiple daily injections. Only minor skilled labor was required in the transformation the medical device into the covert squirted. It is practically pure profit. Who can blame the young man for capitalizing on such an opportunity?

Initial sales were outstanding even at the low, low price of twenty five cents a squirter. Sadly anti free market regulators took notice when modified used syringes started showing up all over the school.

His unique access to the building blocks of the product brought administrative queries his way. At this point our success story comes to a crashing end. The budding business is shut down by do gooder regulators in the form of the school principal who for some odd reason objected to syringes all over his school. Our budding young businessman was sentenced to served time in detention.

There are a few morals to our story. First, obvious to all us right wing reactionaries, is that big government interference ruins the business economy. Next probably is that sharps really do need to be carefully handled. Most important for me however is that we need to laugh at diabetes like everything else.

When you're down, it is great to have a friend remind you that serious and solemn are different things.