The Caboose. 36.

In 36 Days I will be attempting to ride 100 Miles in Burlington, Vermont.

Scratch that.

In 36 Days, I WILL ride 100 Miles on my bike in Burlington, Vermont.

Today is my diaversary.  Diagnosed with T1D 36 years ago today.

I figured out this mathematical magic this morning… 36 more days til Ride and and 36 years of T1D on the same day.  That’s gotta count for something right?

Here’s the newest bit of “flair” in my fundraising plans.

Ok, you knew I was going to figure-out a way to decorate this bike right?  I used to bedazzle Dexcom arm sensors.  All these warnings about creating drag on the bike… I’m already the slowest one folks.  If I’m going to be the caboose, I’ll be a brightly colored, glittered one for sure!

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Here’s my social media fundraising idea (scheme) for today:

YOU are going on The JDRF Ride! Say WHAT?!?! For everyone who has donated to MY riding 100 Miles on 7/25, YOUR name (or message) is going ON the bike! Come with me! This bike is all about inspiration, funding vital research, and a LOT of Alecia flair. Where’s the glitter paint? ‪#‎gettingcrafty‬ #36 ‪#‎diaversarydream‬ 

-> ****MY Dream**** <- (So close to beating the 2001- first year Alecia’s Stem Cells total).

I have had a bit of a heavy heart lately.  When I think about this diaversary stuff, I have uncharacteristically lacked feelings on it.   I haven’t been upset per se, but I have lacked enthusiasm.  My friend posted this photo today.  This certainly turned my mood around.  Note: I definitely do NOT like chocolate mint Cliff bars.

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Also if anyone has a bike helmet covered in LED lights and rhinestones, let’s talk.

 

 

 

New Rates And Some Other Stuff

Endo appointment yesterday.  Didn’t have high hopes (high, ha) as I have been running way TOO high lately, especially overnight.  A1c is a higher than it has been in 3 years.  Disappointing but not surprising (up .3 BUT that takes me to the next whole number and that I seriously dislike).  Also gained a chunk of weight.  More than I thought, but not upsetting as I missed having a butt.  Baby Got Back can’t be my favorite song without some junk in the trunk right?

Adjusted some basal rates with my doctor as the last adjustments did zilch.

New basals worked way TOO well overnight. Ooof.  This morning’s headache plus allergies was like being b*tched slapped by my pump and then a bag of freshly cut grass… over and over again.

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Also, I found a whole bunch of hearts this morning. And TONS the last few days.  Timing. Found: hearts . I still have a lot to add.  I find myself walking routes where I know I will see hearts that I’ve already met.  If nothing else, it’s a good breathing exercise.  See a heart, take a HUGE deep breath.

According to FitBit, I’m averaging just shy of 40 miles a week.  How the H-E-double-hockey-sticks is that possible?!?  Amazing.  That’s all walking!  Cray.

There appears to be another shot (shots, ha) at my getting into an artificial pancreas trial.  I don’t want to think too much about it and set myself up for disappointment but the idea of this old body being used for diabetes progress is deliriously exciting.  Stop thinking about it.  Easier to say than do.

My 35th diaversary is approaching next month.  My feelings on this are a tangled web.  I should write about that, as maybe I’m not the only one?  35 years of this fear and giving myself incessant mental pep talks is a really long time.

In other news, my eye is FINALLY healing (and an allergy puff ball).

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This past Saturday, I said goodbye to two of the very biggest Alecia’s Stem Cells supporters.  They were with me from the very beginning of founding ASC.  Saturday would have been their 60th wedding anniversary.  Now they are back together.  Also, being on a moving dock with ashes is a possible recipe for disaster.  Life is short.  Never lose sight of the wonderful experiences you’ve had along the way.  The people who believe in you… hug them, love them, appreciate them.  Sappy-McSappster moment.

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A few other random thoughts and observations:  50 Cent should stick to rap, I need to try pump sites in my lower back, Maya Angelou was one hell of a woman, and I may have seen Apollo Creed at a train station in Jersey on memorial day.

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Lordy Lordy…

Look who’s 40!?!

Today is my dear friend Sara’s 40th Diaversary!

Sara is an incredible woman, an amazing friend, a true advocate, and has spread a wealth of Diabetes information to so many.  She has also been a guest blogger here, at Surfacefine sharing her experience with The JDRF Voices Council AND her Research Retreat.

Cheering you on Sara!  xoxoxo

34th Diaversary on a Business Trip

I’ve been struggling (read: procrastinating) about my 34th diaversary blog post. I’m in a different spot than I was a year ago. In putting this off, it’s hard not to focus on what seems like an incredible amount of flat-out craziness in the past 2 months. If you follow me on Twitter, you might have picked up on my health insurance woes (I mean it’s just nuts). Bronchitis and emotional turmoil/lack of sleep/ and not eating much didn’t do my BGs any favors. During the bronchitis that wouldn’t quit incident (come on lungs, enough already), I kept taking more and more insulin, pulling pump sites I had hoped were “bad”, and switching vials of insulin. I’d get those bg’s down to the low 200s but just couldn’t get them to budge any further. These issues were just the tip of the iceberg. In the interest of preserving other people’s privacy (and perhaps my own sanity), I will simply say I have endured and been surrounded by a heck of a lot of heartbreaking loss recently. When I really think about it, it’s overwhelming and completely surreal. Then, I think of my diaversary and I’m just like, yeah, whatever. I have bigger fish to fry.

Monday night I attended my very first JDRF NYC Board meeting. I only knew one other person there, it started late, I got there early and it was, well, a bit awkward on my part. I felt very “new” in an organization where I often feel “old”.

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Yes this was the view from the meeting. Yes, this is insane.

Fast forward to the dinner presentation. Tom Brobson spoke (if you don’t know who he is, he is the National Director of Research Investment Opportunities at JDRF). Yes, THAT Tom. Tom spoke and I was elated. I’ve watched Bob’s artificial pancreas videos before. As you may know, diabetes discoveries really do occur, another mouse is sometimes cured and I make the same comment for the upteenth time, “Oh to be Minnie Mouse”. Tom, in my view, is sort of like Mighty Mouse. He’s been IN these clinical trials. He has seen and been part of an experience that I don’t know.

As Tom spoke on Monday night, I felt a sense of levity. When he talked about not having to think (stress) about what he was eating (during his study out in the wild… AKA the real world), his enthusiasm was evident. It was intoxicating.

I read a lot about what some term “practical cures”. Hmpf. Let me get this straight, I could eat or not eat what I want and not think about bolusing, or splitting a bolus, or needing to bolus earlier or later or not at all or dropping after all this bolusing hours later? Are you frigging kidding me? I’d have to wear some devices and carry a smartphone? Oh that would be so tricky since that’s EXACTLY what I do now but I have to think about this stuff ALL the time. A steady stream of checking and reacting, reacting and checking.

Tom spoke about other technologies on the horizon. Other clinical trials funded by JDRF. I could go on for pages, Some I knew of and others were new to me, but here’s the part that was the happiest to me. When the presentation concluded (also note he fielded questions the ENTIRE time he spoke which was also awesome), I decided I wanted to hug him. Yeah that’s right. If this guy is the Mighty Mouse of clinical trials and the technologies I fantasize about, you sure as hell can bet I’m going to thank him and hug him like there’s no tomorrow (and take photos of course).

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Tom is awesome.

As is often the case in my hugging world, Tom seemed quite surprised and offered me his smart phone to take a photo while I held it (with the artificial app screen showing). What the heck, humble guy? I didn’t cry but I did tell him about how much I have loved watching his videos. How I send them out to the people who love and support me on this fight against T1D. That I show his videos to our Alecia’s Stem Cells supporters to show them WHAT they are funding. That I admire the trials he’s been in, by choice, that sounded awful. Trials hooked up to 2 IVs and being all bundled up so his veins wouldn’t collapse as he sat in a hospital bed. So yes, I hugged him and I hugged him hard!

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So here’s the scoop kids. Happy 34th diaversary to me. I still have hope. Pure and simple. I am still me. I have hope that technology will continue to better my future. I acknowledge that there is such a small percentage of people who are T1Ds in the world, that I need to push this agenda for a cure and better treatment options. I need to raise money and take part in grass root efforts and get other people to support these ideas. I’m still not giving up. I will continue find joy in life and I will fight like hell to keep living. I will also fight like mad for a better future for my fellow T1Ds.