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.

Freaky Friday- Give Me A Break

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Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)

I’m Feisty and it’s Friday.  I have thought quite a bit this question throughout the week.  In my mind, I have answered this many different ways but always come to the same conclusion, no, I would not switch T1D with another chronic disease and I’m annoyed with myself for thinking about this as much as I have.

In the past 5 years of my life, among my close friends, I have witnessed the following: a friend diagnosed, fight and BEAT the shirt out of breast cancer; a beloved friend diagnosed with cancer and three weeks later watching him take his last breath on this earth; a friend diagnosed with MS; a friend’s constant battle with debilitating depression; a friend responding VERY favorably to a Lupus treatment.  In a phrase that was often part of my Catholic upbringing, “We all have our own cross to bear”.  I believe this is true, so no, I’m not entertaining the idea of switching.

The EXACT spot I thought of SurfaceFine is across the street past the double parked van.  Please notice my favorite building in the top left corner.

The EXACT spot I thought of SurfaceFine is across the street past the double parked van. Please notice my favorite building in the top left corner.

It’s been a year since I started Surfacefine.  Rarely does anyone question the name (you know, the 6 people who read it).  The name came from a moment when I was considering participating in Diabetes Blog Week (again, way to go Karen).  I woke up early to go to the gym.  I had an appointment to workout with a trainer so there was not an option to cancel.  My bg was in the high 200’s when I woke up.  For all intensive purposes we’ll just say it was 300.  I had an hour before I had to leave for my appointment.  Correction bolus taken plus a little additional rage bolus for good measure.  No ketones.  I practically drowned in my attempts to hydrate and flush my system.  As I walked to the gym, I checked my Dexcom at every intersection.  The arrow continued to angle downward.  I know it’s counteractive to workout that far out of range.  I also know I had to pay that trainer if I canceled.  I saw my neighbor on a street corner.  She  made a comment about my going to the gym and “good for you”.  As I race walked my way along, I couldn’t help but think of my attire.  There I was in my new sneakers, dressed in spandex, moisture-wicking gym clothes, hair in a messy ponytail looking the part of the committed health nut.  No one who saw me knew there was a bedazzled Dexcom sensor in my arm under my jacket, a Dexcom receiver vibrating that my blood glucose level was too high in my pocket, an insulin pump connected to my abdomen with it’s clip pulling down my pants, that I was thinking how I had put a temporary basal rate reduction into my pump soon because the exercise would drop me too much.  If I canceled, the outside world would never know it wasn’t because I was a lazy bum who over slept, the world would never “see” that my bg was too high that morning.  A morning smile to people I met or recognized on the street.  Rosy cheeks from the uphill hike through my neighborhood.  A heart pumping sugary blood through my veins while my organs worked double duty trying to flush it out my system while my body absorbed the extra jolt of insulin pouring through me.

Yes, on the surface, I’m fine.