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my friends all think i'm crazy...

...but i had to do it.

we were in mcsorley's - the oldest bar in new york - and there was a table of men next to us.  a few were graying, the others were probably in their 30s.  one of the younger ones in particular caught my eye, just because he was rather good-looking and muscular, and we made eye contact a few times.  i wasn't drinking any alcohol since they only have beer there, and i am not a beer person.  i just sat, sipping my water and chatting with my friends.

all of a sudden, i looked over at the table of guys, and i saw something very familiar on the table in front of the guy i had been eying.  it was a black, zippered case.  then, i watched in awe as he unzipped the case, pulled out an all too familiar bright orange syringe, and stick it in his giant bulging arm.  i almost fell out of my chair.

"dude!" i half-whispered as i hit my friend impatiently, "look what that guy has!" not clear enough. "DUDE THAT GUY IS F-ING DIABETIC" (i swear a lot when i'm excited).

but as soon as the needle was out of his arm, everyone at his table got up and started to leave.  as they lingered for a moment, i was having a major debate inside myself and out loud. 

"oh man...i really want to go over to him..." i said, expecting at least one of my friends to support my urge.  however, none of them seemed to want to condone such bold behavior.  i realized in those quick decision-making moments that this was not something anyone was going to understand but me and my new-found comrade.  until you've had something like diabetes, you cannot understand how absolutely necessary it is to commiserate with people that understand what you're dealing with.

so, i went for it.  with my own little black case in hand, i approached this man as my friends watched on laughing at what they saw as my chutzpah.  as soon as he realized why i was there, he lit up.  he told me how he has been a diabetic for 20 years and how he chooses to stay on injections because he doesn't want something on him all the time that shows people that he has diabetes (hmm...this sounds familiar).  when i told him i've had it for six months, his immediate response was "it's easy!"  which i loved.  whether or not any of us really believe that, his optimism in the face of 20 years with diabetes and doing old-fashioned drawn-up injections all along is really quite inspiring.

we only chatted for a few minutes as his group was already on their way out, and we never even exchanged names, but the whole experience made me so happy.  it was a refreshing reminder that diabetes does not preclude me from a normal life.  while i might logically know this, it is easy to forget sometimes when i'm in a group of non-diabetics, and i feel very different.  until this guy took out his case, he looked like a regular guy just getting a beer with his buddies.  he made me realize that diabetes or not, i am still me, as normal or regular as i was before.

also, his nonchalance about injecting and what not at the table made me think about when i get nervous about checking my sugar or shooting up in public.  maybe this isn't the best route...for all i know, i could be forming a new friendship just by pricking my finger above the table instead of under it. 

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Five Oh Four...or...Diabetes & the Annoying Orange

We had our meeting...the 504 plan meeting, that is.  All went well.

I am so glad that we started having a plan right from the beginning of kindergarten.  I was apprehensive about it back then.  I remember asking the only other family with type 1 at our school regarding their daughter's plan.  She was considerably older than C.  They had never done one.  The Health Aide said there was no need for one.  The nurse agreed.  But something told me, though these people had C's best interest at heart...and, they are lovely people...I needed to protect my little type 1 kid's rights, in writing.

Each year, the plan is tweaked just a bit, to accommodate a growing kid.  As I think back over the last 3 years, I am pretty amazed at how C has grown in her self-management of this disease!  Don't get me wrong.  She will always be able to count on me to be a part of it all.  I read plenty of grown-up diabetes blogs to know she will continually need a strong support system even when she's an adult.  I am just in wonder sometimes, when she demonstrates a deeper understanding of this crazy thing called diabetes!

So...back to the five oh four...

Really, the only changes this year included the point that one of her parents or designated caregiver must be allowed to ride with her on the bus, for field trips.  There had been a couple instances last year that made me feel that it had better be stated in our plan.  The comments and stares from other parents don't really bother me (kind of).  But when her teacher tells me on each field trip day that I'll be allowed to ride on the bus "if there's room," I figured we should include this little stipulation.

Another small change was the simple added statement:  C will work toward testing and treating out-of-range blood glucose in the classroom.  By 4th and 5th grade, I don't want her to miss any instructional time, unnecessarily.  I really just wanted to mention it to the nurse and principal so they have an idea that the time is coming.

During last year's meeting, I seriously wanted the 2nd grade team of teachers to all handle the glucagon kit and be educated about when and how to use it.  It was quite a hurdle for me.  Maybe this year's teacher expected it. He had no qualms about it.  He went for it!  It almost seemed like he couldn't wait to give that orange an injection! Maybe he had heard about this mom who insisted on teaching the staff about how to inject glucagon into her daughter using an orange. Who knows?

I ended up sharing about the meeting later that night with the family.  Big C chimed in..."Wouldn't that make a great Annoying Orange episode?!"...

"Diabetes & the Annoying Orange"

You say you've never heard of The Annoying Orange??  You're missing out...or...maybe you don't live with a 13 year old!

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Walking on Eggshells

This last weekend, my sister F and niece Emily made the 70 mile drive to central Minnesota to look in on my mother. We'd received a call from assisted living that she was coughing a lot and also very tired.

We took her to the dr, who said that she "perhaps" had pneumonia. They couldn't tell by a chest x-ray because there was too much scar tissue from the emphysema, nor could he tell by listening to her lungs. I said "pneumonia is very serious in someone with existing lung problems, right?" He then muttered that we should hope that it was pneumonia, which could be treated. Worsening emphysema cannot - one just progresses further down the tunnel of poor health. My M does not have much of a margin left before her quality of life is totally hosed.

So, it was not a happy visit. On the way home, Em and I were sitting in the backseat, playing travel bingo and working on learning some old Beatle songs. I took out my meter and lanced my finger. Em said, "wow - is that blood?". I told her that yes, it was blood, and that I was going to put it on a little piece of plastic and then a number would show up on the screen. We waited and looked at the number. I told her that the number tells me what to do next to take care of myself.

A few minutes later we pulled into a gas station and F turned around and shouted "don't you ever do that again - Emily is traumatized". Well, that was news to me. Em was singing "Good Day Sunshine" somewhat offkey but with a lot of gusto.

In truth, it was F that does not want to be reminded that I have db. She was very close to one of my cousins that died from it a couple of years ago. None of my immediate family has ever seen me take an injection, and I've always discreetly treated my hypos. It's a lot to keep up with. But no, I musn't upset anybody.

When we got back to my place they both came in to try on a sweater that I'm knitting for Em. F was in the kitchen and saw a piece of paper on my frig. Plain and simple, it is a list of all my meds and db stuff that I need to pack when we go home for my M's final days and/or funeral. F knew that and then again blew up. "You've already got her dead and in the grave - how can you think like that?" I calmly told her that the list had been written 9 months ago. I took it and moved it to the side of the fridge.

F is a high strung person, and my M's illness has been difficult for her. She refuses to talk about the funeral when M brings it up, but, I have. I don't know how to handle these episodes but to keep my mouth shut and not stir the pot.

I've talked to my friend Elise about it and told her that I was willing to make the compromise so that I could be a part of Emily's life. She said, "but there's no compromise involved. You are letting F dictate all your actions - she is not giving up anything". Hmmmm.

Well, hopefully she's cooled down. I'm tired of tiptoeing, and need to take the stage front and center, with everything that belongs to me. DB and ailing mother included.

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D-Day: Sugar Invasion

Today, October 9th, is the day I was diagnosed 14 years ago.  It was the day that sugar invaded my body in places where it shouldn't have been, like my eyes. Things were blurry back then. The things I remember from that week in the hospital, not in any particular order:

-Being scared, but not sure what I was scared of.
-My mother stepping into the hallway to call my father.
-The autumn plant my stepmother brought to my hospital room.
-My brother visiting.
-Playing with plastic food to get an idea of how exchanges worked.
-Tiger, the stuffed animal, my stepfather brought me. (It's still in my bed.)
-Being embarrassed and not wanting to tell any of my friends.
-My mother sleeping on the couch.
-Getting released for a night, only to end up back in the hospital, because I was scared.
-My father, quiet.
-Holding a needle in front of my pinched stomach for hours trying to give myself the first injection.
-Giving the orange an injection instead.
-My aunt Karen, dressed in purple.
-Get Well cards from kids at school.
-Calling a friend to tell them about my new life.
-Morning snack. Half of a banana and vanilla wafers. I always wondered who got to eat the other half.
-My exchange book.
-Wanting to do a good job.

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Support the JDRF

If we know each other, you probably already got this in email, but I'm posting it here just in case.

Please bear with me for a minute. After writing this, I thought for a moment I might be getting over-dramatic.
But how can you be over-dramatic when kids are dying?

This October I'll be taking part in the Juvenile Diabetes Research Foundation's Ride to Cure Diabetes in Death Valley along with riders from across the country as we try to help the JDRF reach it's goal of curing type 1 diabetes.

I was diagnosed with type 1 diabetes at the age of 15, 37 years ago. Although I personally would like to see a cure for myself, that's not really why I'm riding for the JDRF.
I've been living with diabetes for a long time. I know I can survive, even be healthy, in spite of it. I'm used to it. But this disease is hard on kids.

In February of this year, a personal hero of mine, Jesse Alswager passed away at the age of thirteen, after 10 years of fighting type 1 diabetes.
When I say fighting, I don't just mean like all of us type 1 diabetics fight, with finger stick blood tests, injections or infusion sets, machines and medicines, counting grams of carbohydrate, thinking through the metabolic effects of every meal, every bit of physical activity, everything....
What I mean is that Jesse was fighting as if he was in a war.
When Jesse was diagnosed at the age of three, his mother, Michelle Alswager, declared war on the disease, and she took her son into battle.
Jesse raised thousands of dollars for the cure, a cure he will never enjoy. Michelle, as a member of the board of directors for several diabetes foundations and an executive at the Juvenile Diabetes Research Foundation, was involved in raising millions.
Jesse met governors, Congress members, First Lady Laura Bush. Politicians loved to be photographed with him and talk about him.
I never met Jesse. I wish I had the chance to thank him. He did a lot for me, and all people with type 1 diabetes.

One of the things that Michelle Alswager did to fight diabetes was to come up with the idea of a type 1 diabetic triathlon team, and a documentary about how they could train for and complete an Ironman.
That was how Triabetes began.
Triabetes has had a profound effect on my life, and I know that it has touched many more diabetics out there.
When I first heard that Jesse had died, it knocked the wind out of me. It was more than a little discouraging personally, to learn that the inspiration for Triabetes had died.
The inspiration had died.
Yeah, that's how I felt.
And it was heart-breaking to think that Michelle Alswager, who had worked to spread hope to people like her son, people like me, suffering from type 1 diabetes, had lost her son.
For several hours this was a hope-crushing thought for me.
But now I've decided that it's part of a war. I've been around for the war, but mostly on the sidelines. I have not yet begun to fight.
I have to take to the battlefield now.

I'm riding across Death Valley in honor of Jesse Alswager, and to help the children who now have this disease or will have it in the future.

Also riding will be Michelle Alswager, in memory of her son, and Bob and Jen Nicholson, who lost their 14 year old son Trent to type 1 diabetes in March of this year.

Please go to this page to donate to the Juvenile Diabetes Research Foundation:

Thank you,

See this video to learn more about Jesse:
Or here:
Learn more about Michelle Alswager here:
And more about Triabetes here:

Memorials to Jesse:

Memorials to Trent:

Many employers do charity matching gifts. If you decide to give to the JDRF, please find out if your company will match your gift, and make your contribution count twice as much.

If you want to make a contribution in honor of or in memory of someone, whether they have diabetes or for any other reason, please state that in the "Message for Rider" box in the online contribution form. I will put that person's name on my bib number to wear while I ride across Death Valley. Thank you for the opportunity.


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