Tag Archives: type1. JDRF. T1D

34th Diaversary on a Business Trip

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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.

Are you free?

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Below is the email I finally finished (I usually have this letter ready to go in June so I am terribly behind this year) to get my friends and family to sign-up for the 2 walks I will be participating in on behalf of JDRF.  I’ve organized/led Alecia’s Stem Cells since 2001.  We have walked every year, rain or shine, since then in NYC, across the magnificent Brooklyn Bridge. In order to keep people involved and interested, I have made it my mission to constantly change things up.

I did 2 walks in two cities in 24 hours 2 years ago (Boston & NYC). I’ve hosted give-aways, walk kick-off parties and post walk parties.  I’ve worn pirate props along with 30 of my friends while walking 3 miles.  I’ve made videos.  I’ve sat in the dark at Battery Park waiting to do TV interviews at 5:30am about why I walk.  If you haven’t guessed it, this is an event near and dear to my heart and this year I will have the largest turn-out of my immediate family we have ever had.  My parents, both brothers and their wives, my sister and hopefully my new niece or nephew are all registered to walk with me.

I’m posting this note to invite you, the DOC, to come join me.  Its a great day for a great cause and I would be thrilled to have us walk together!

As you may know (OK seriously, who doesn’t know?), I have lived with type 1 diabetes (T1D) since I was 6 years old. I have managed to stay alive thanks to insulin but insulin is far from a cure. I am committed to JDRF, the leading global organization focused on T1D research.  JDRF raises funds that power the global movement to cure, treat and prevent type 1 diabetes (T1D).  The goal of JDRF is to improve the lives of every person affected by T1D by accelerating progress on the most promising opportunities for curing, better treating and preventing T1D.

In the past year, I’ve embraced some new technologies and have become further involved in diabetes advocacy.  I suspected I was having inconsistent low blood sugars in my sleep. I was not experiencing the symptoms of low blood sugar until I was already in the “danger zone” (hypoglycemic unawareness) which terrified me since there are too many of stories of people who hit that “danger level” and simply never wake up.  I now wear another device along with my insulin pump.  It’s called a Dexcom sensor and is inserted into my tummy or my arm (I prefer the arm since my insulin pump is on my stomach).  The Dexcom sensor gives continuous blood glucose readings to a receiver which is always with me and helps me make smaller and faster changes on my insulin pump.  The cool part about the Dexcom is that it gives me trends with my glucose levels although I still have to check my blood with fingersticks throughout the day.  Most importantly though, an alarm sounds if my blood gets too low (and I feel so MUCH safer at night).

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I also completed training to become a JDRF mentor.  The experience was eye-opening especially about issues currently facing many diabetics and their families.  Listening to stories of bullying and depression that often walk hand-in-hand with any chronic and degenerative disease was heartbreaking.  After a truly horrific experience involving an insulin pump emergency on an airplane, I realized that MY story and experiences with managing this disease could help other people, especially parents of diabetic children. Through a series of coincidences or simply fate, I started writing and advocating in the process of trying to give back.  I realized I was getting something out of this too… encouragement not only from my fellow diabetics but from other people who heard and read my story.  I had no idea how much that encouragement would relieve my own sense of stress (and that I’d learn some new diabetes tips in the process).

Amazing advancements are happening all around us and to keep this momentum alive, I am asking you to walk with me!

This year’s Walk takes place in New York City on September 30, 2012, AND we will also be walking in Los Angeles on November 11, 2012.  I’m writing to ask for your support. Now more than ever, you can make a real difference in my life and the lives of all people with type 1 diabetes. Please either join my team, Alecia’s Stem Cells, as a walker, fundraiser or support me with a donation. It’s simple, fast and fun AND we will of course go out and watch football afterward!  Please visit my personal page to get started.

NYC:  ALECIA’S STEM CELLS NYC

LA:  ALECIA’S STEM CELLS LA

Thank you for your support!

xo Alecia

 

Bus riding with B

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Memorial Day Weekend and I did what most New Yorkers do (Ok that’s not true.  I did NOT go to the Hamptons).  I did however enjoy time with friends who happen to have outdoor space (yep, a rooftop get together).  Gorgeous right?

I wore a strapless sundress and just inserted my first (drum roll please) unassisted (more drum rolling) Dexcom site in my arm earlier in the morning (woo hoo *Victory Dance*).

Friends arrived at the rooftop festivities with their 2 1/2 year old, Lady B.  I joke that Lady B is smarter than I am.  The joke is that I’m not joking.  This kid quite possibly (possibly = definitely) has a better vocabulary than I do and is so bright that I am considering hiring her to work in my office and run my finances.  Anyway, when it became too dark to sit on the roof, we went to my friend’s apartment where Lady B and I sat next to each other on the sofa.  We started playing what I would like to call, “Riding A NYC Bus” (lots of colliding into each other).  Quickly it was determined that said friend’s loft steps were the “bus stop” and the sofa was the bus.  When we sat on the steps we were squished (the steps are narrow, or I have a big butt, or something like that, shhh no judgements), and my Dexcom sensor was right in Lady B’s face every time she spoke to me.  I kept her jabbering, not sure how to explain my arm if she asked (I have limited knowledge on 2 year olds. That is also true for 1 and 3 years olds).  Lady B and I ran around the coffee table and back to the bus stop.  I felt a tiny little hand cup right over the Dex sensor and Lady B leaned up and asked what was on my arm.  I stammered and started to explain that my body doesn’t always work correctly and this helps me know how to make it better.  She kept patting the sensor, with the gentlest touch, so cautious.  Her Dad started explaining it is medicine.  She kept smiling, staring at the Dexcom sensor, so I told her it helps me stay healthy and strong so I can play with her.  Apparently that was all she needed to know because she pulled her hand away and told me it was time to get on the bus.

The bus game continued (its Manhattan on a holiday weekend, lots of transfers) and my Dexcom sensor became the hot topic (what else are you going to talk about while waiting for the bus right?).  When Lady B realized a sticker held the Dexcom on my arm her eyes were as wide as saucers and her whole face lit up.  She kept patting my arm and telling me how much she likes “this” (The Dexcom).  I wasn’t sure whether to laugh or cry.  I’ve had my fair share of frowning looks and stares from strangers in the last few weeks.  The weather is warm and I own far more sleeveless items of clothing than I ever realized.  When asked, I explain to strangers that I’m diabetic and and quickly explain “it” tracks my blood sugar levels.  Depending on the person’s reaction I might say something like I’m under house arrest OR I’m in the Witness Relocation Program and add a giggle, but there I was, playing crazy bus ride, with a little girl who wanted to talk stickers and for some reason, kept nodding her head and saying, “I like this”.