Category Archives: juvenile diabetes

Costume Included.

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This is the thank you note I sent to the many, many people who generously supported my Amelia Island JDRF Ride.  What a journey.  700 Riders.  154 with T1D. 3 Million dollars raised!  

WE DID IT!  Saturday’s 104 mile JDRF cycling goal is in the books, but there’s a behind-the-scenes story too.  

The weekend’s adventure started on the flight.  I was on a plane with a bunch of fellow JDRF cyclists but was startled to hear someone saying my name and grabbing my arm, only to find one of my teammates and the only other one who’s had T1D as long as I have, with a crashing and dangerously low blood glucose level.  Things got a bit frantic but we pulled together, got him quick carbs and we all worked together.

My fundraising theme this year was Type ONEder Woman and my bike was covered in the names of all my amazing donors, Wonder Woman stickers, glitter and stars.  What you may not have known, was last winter I had the honor to address 700 people on behalf of JDRF in New England.  I shared my experience in clinical trials to improve the treatments of T1D AND I shared my JDRF Ride story (from Burlington to Tucson).  I met so many amazing people that day, but one truly stood out, a little girl named Emma and her Mom.  Emma was decorated with Wonder Woman facepaint (her favorite) and we talked about our mutual Wonder Woman love (who doesn’t love Wonder Woman?).  Her father is even a fellow JDRF cyclist! Throughout the training season, I donned a Wonder Woman sports bra peaking out of my ride jersey.  Slowly a theme evolved, Type ONEder Woman and this little girl and her family, constantly liking my training photos, fundraising pushes and cheering me onward.

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When I arrived at the hotel, I was handed a Wonder Woman gift bag filled with Wonder Woman goodies (the tiara fit perfectly) and the most adorable card, again cheering me on (Thanks Emma’s family). In a matter of hours, I managed to drop a vial of Novolog insulin in our hotel room (sorry Paige, insulin smells disgusting) and then to my complete HORROR, at dinner, my insulin pump DIED (what?!?!?)! I was so fortunate to discover I had a backup pump and supplies in my luggage, but I was reminded of two things: Bad things happen in threes (friend emergency on flight, wasted insulin, pump death) AND the incredible power of teamwork.  In all of these scenarios, my teammates offered to help and share all THEIR own supplies.  And that’s exactly how ride day went.

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Photo credit: Ian Joyce

For the first time in my ride experience, the NYC team stayed together, and we worked as a team.  We rode the same speed to keep ourselves all together.  We laughed at the same ride hilarity.  We helped one another out.  We were truly a team.  Since the route had multiple distance options and looped back to the hotel, we were able to say goodbye to our friends who rode shorter routes and they were able to cheer us on as the last group made the extra 25 miles to get us to the 104 mile mark. Whew!

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At the 76 mile mark, I had shooting pain in my frozen shoulder (they should call it stabbing pain shoulder, not frozen) and my right hand was constantly going numb.  I had the opportunity to call it day.  I looked down at my bike, and the first name I saw was Emma’s, so I hopped back on my bike (I didn’t hop, it was more like a careful climb), stuck with my team and kept pedaling.  From mile 101 to 102, I had a rather cathartic moment, I was looking at Emma’s name and then the names of my nieces and nephews and then my sister Paige, who was right there, pedalling along with me.  I kept thinking about Emma, and what my life was like growing up with T1D. It sounds dramatic (who me?) but it was like watching a montage of my life, like a scene in a movie.  My childhood was directed by the advice given to my parents at my diagnosis, I was a child FIRST and a diabetic second.  I did everything, played every sport, never missed out, but I remember quite vividly when I was the only girl in my class not invited to a birthday party because the birthday girl’s mother told her I was going to die (nope, still standing), or being on a date with a guy who freaked out that I had an insulin pump because I was “sick” and had “fooled him” into thinking I was healthy (ah the old bait and switch of perfection, oy), or the hours I have spent arguing with health insurance companies about the tools I need to take care of myself.  And the rest of that mile I focused on the fact that I was on a historic bike ride for JDRF, my T1D buddies, and myself as this ride raised  an epic 3 million dollars to ensure a better future for everyone with T1D.

At mile 103, we lined up as a team, and waited to cross the finish line ALL TOGETHER.  In that moment of waiting, I saw my friend’s name, the one with the emergency on the plane. He’s got two adorable kids (who were at the ride), a fantastic wife (who rode) and he’s an accomplished cyclist (unlike my scattered cycling skills) and we are in the 37 years with T1D club, together.  As I then told my ride mates, we are so lucky because so many people will never know what it feels like to accomplish a goal in an endurance sport and even luckier, because so many of the people with T1D prior to us, never got to see this point in life.  I am grateful but I’m on a mission to change the future of this disease.

And then I got to do something I have dreamed of for the past 2 years, I crossed the finish line, side-by-side, with my biggest fan, my sister Paige.

 

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Needless to say, no beer has ever tasted as good as the ones waiting for us when got off our bikes!

I thank you with all my heart and busted pancreas for supporting me and inspiring my dream.

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Now, let’s celebrate! xo Alecia (AKA Type ONEder Woman… yes, the tiara has gone to my head)

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Insulin N’ Roses (I N’ R)

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I posted this earlier this morning on Facebook and was surprised to hear from 3 friends in a matter of minutes that they didn’t know this program existed.  One is a T1D friend I met through JDRF Los Angeles a few years ago and another is the Mom of a recently diagnosed T1D who I was introduced to through a business competitor (yes, the world is small).  I take for granted that there are people in the #DOC who do such an incredible job promoting the Spare a Rose, Save a Child campaign that a few tweets from me are enough.  The messages I received both publicly and privately to the FB post certainly prove otherwise.  So here you go (yep, Do Good, Feel Good) and spread the word

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In many parts of the world, a child diagnosed with T1D will die in a matter of days, due to a lack of available insulin. By sending one less rose this Valentine’s Day, you can provide a child with a month’s worth of insulin. For the second year in a row, my Mom will be receiving a Valentine’s card thanking her for being my Mom and notification that in lieu of a dozen roses, she has instead kept a child alive for another year.

Roses die, kids shouldn’t.  http://www.SpareARose.org/give

From www.spacegirlw.tumblr.com (took this over the weekend. Perfect for this post)

From www.spacegirlw.tumblr.com (took this over the weekend. Perfect for this post)

#SpareARose

Curiosity?

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Foot is healing and Dexcom site is switched.

Left thigh doesn’t hurt at all but I am curious as to why the blood pooled around the edge of the sensor (yep, that’s a skort in the pic…  I like to rock a skort regardless of the teasing I seembikeshorts to keep catch about it) .  Anyone?  I don’t know why I’m so curious about this, but after all the blood upon insertion, I expected a big bloody bruise under the sensor, not around it…. Anyone?

 

So what’s next?  In a dramatic moment (read: insane), my sister and I signed up for  JDRF Ride.  No, not one of the BIG Rides, but a local one…. well Jamaica….ummmmm Jamaica, Queens… which seems far away (right now) since I still haven’t figured out how we are getting there.  You know what else I haven’t figured out?  Bikes!  We don’t have bikes!  We *may* have a connection to borrowing bikes thanks to JDRF.  Great!  There is a 10 mile version to which I said, “pish-posh”.  I regret my pish-posh attitude now.   I will be riding 20 miles.  I had no idea how far that was.  My training so far has been 2 Citibike rides.

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That is the Brooklyn Bridge in the background, which is part of the route of NYC’s JDRF One Walk.  This is also the view over my Citibike handlebars and my big huge purse strapped to the front.  My training looks wimpy.  My training IS wimpy.

After eating way too much unhealthy food over the 4th, yesterday I went to the gym.  Granted I have some sort of upper respiratory thing I’m fighting through, BUT I did a 1/2 hour on the elliptical and then switched to a stationary bike.  I was good and sweaty and coughing and figured maybe I rode 10 miles.  I looked down.  Nope.  2.16 miles.  Holy Smokes this going to be ugly.  How many spin classes can I go to in 3 weeks?  Eek.  Remember when I did that CYC (spinning madness) class for JDRF?  My sister and friend loved it so much that they still take the classes!  I hope my sister doesn’t mind me riding on the handlebars of her bike.

Here’s the route (terrifying YET exhilarating and then a little “OMG” and then “those stops look fantastic”):

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Next up: I leave Wednesday for Washington DC for the JDRF One Walk Conference: Road to Success.  I’m excited and super curious.

And finally, in the next few weeks I hope to have some updates on the AP trials which are to begin HERE in NYC.  Not holding my breath for my own guinea pig involvement and not getting over enthusiastic (so I keep telling myself).

Keep advocating folks.

 

 

 

 

 

 

 

 

 

Wordless Wednesday – PROGRESS!!!

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I can’t even describe how inspired I feel today (I’ve been up since 4:30am so it may partially be exhaustion, but I do feel excited).  While my brain and my heart settle a bit… here’s a pic of me last night (microphone not working and video without sound).  I definitely think I was a bit stiff and far away, my chit-chat was the most boring part of the evening, but who cares…. BECAUSE…..

Not a bad pic. Pretty sure this is when I realized there was no video playing!

Not a bad pic. Pretty sure this is when I realized there was no video playing!

 

THIS IS WHAT IT’S ALL ABOUT!

Dr Aaron Kowalski

Dr Aaron Kowalski

Dr. Aaron Kowalski.

MIND.

BLOWN.  

I got to sit next to him and afterward, bombard him with questions.  If my pancreas could smile, believe me, it would have.

Pancreas from I Heart Guts

Pancreas from I Heart Guts

 

 

 

 

More information on all of this later!  And here’s some additional info about Dr. Kowalski:

Dr. Kowalski, JDRF’s Vice President, Artificial Pancreas Project.  He is an internationally recognized expert in the area of diabetes technologies, and oversees JDRF-funded research aimed at accelerating the delivery and development of the artificial pancreas systems. He has authored numerous articles in the field, including co-authoring the landmark study in The New England Journal of Medicine that revealed the effectiveness of continuous glucose monitors in T1D.

Dr. Kowalski’s brother Stephen was diagnosed with type 1 in 1977 diabetes and in 1984, Dr. Kowalski was diagnosed with type 1 diabetes.

 

Be good. ONE Walk

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little curl

How did I possibly breathe out of that nose?

 

 

There was a little girl
Who had a little curl
Right in the middle of her forehead.
And when she was good
She was very, very good
But when she was bad
She was horrid!

 

 

Let’s be good.  Let’s feel good.  Let’s do good.

It’s official.  Alecia’s Stem Cells NYC JDRF Walk Team is registered to walk again.

I want you.

I need you.

We need advocacy.

We need to push technology forward.

We need to a CURE.

Come walk with me.

Come support our team.

Spread the word.

Reach out.

What are you doing September 28th?  NYC.  Brooklyn.  A beautiful bridge.  13th Anniversary of the founding Alecia’s Stem Cells.  15th ASC Walk.  25th Anniversary of the JDRF Manhattan Walk.  My 35th year with a busted-up pancreas.  35…. WOW.

Type ONE, until NONE.

ONE WALK.

I need your help.

I.  NEED.  YOU.

For more info, come visit Alecia’s Stem Cells.  xo

 

Sara’s Research Retreat

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My friend Sara guest blogged here back in August.  She is part of JDRF’s T1D Voices Council and also my dear friend.  Last week, she sent me an email about my blogging break, and attached a speech she wrote to present to the Board at her Tucson JDRF Chapter.  She thought her presentation might work for a guest blog post and I’m thrilled she wants to guest blog yet again.  So here it is and thanks Sara.
How Far Has Research Come, and Where Else Can it Go?
allenmonograph“First, a little history lesson, if you will indulge me. Diabetes has been around a LONG time, first notated by Hippocrates, and on through the ages. A brief history of the disease is included in this monograph published in 1918.  At different times, the ailment was thought to be a problem with the kidneys or the liver, or the blood, or the psyche. Proper diagnosis of diabetes became possible in the 1600s when Thomas Willis noted that the “urine is wonderfully sweet, as if imbued with honey or sugar,” as if he was describing a fine wine!  The doctors and scientists were determined to find out what caused the fatal dis-function of the body, and endeavored to find better, more effective ways to treat it.  
 
In the late 1700s, one treatment called for confinement to the house, preferably to one room, with the utmost possible quiet and avoidance of exercise. THAT I could live with. The diet however, called for milk and lime water, bread and butter, blood pudding, game and other rancid OLD meats and lots of fat. The skin was to be greased daily with hog’s lard, and flannel [GAH] was to be worn.  Another called for the drinking of melted beef fat mixed with hot oil, and regular bleedings….In the mid 1800s, they threw out the rancid meat treatments in exchange for alcohol, (which works for me). Milk was forbidden, careful mastication was encouraged, and finally bleeding and opium treatments were condemned. About 150 years ago, improved techniques of research determined that it was the pancreas that was the offending organ, and with not-yet-invented-laser-like focus they began to study it, often in tandem with more and more rigid dietary restrictions. in 1911, a Dr. Hodgson advocated eating a raw egg with a few ounces of olive oil several times a day, and that’s it.  
 
All that to say, thank GOD, I was diagnosed in April of 1974, when I could treat my diabetes with THIS insulinsyringeThough i must say this 30 unit syringe with its super fine needle is a lot more palatable than the 100 unit syringe with the pool cue sized needle I first used. 
 
But had I been diagnosed a mere 60 years earlier in 1914, my parents would have been told that I had an almost 100% fatal disease, Like my great aunt Gigi, who was diagnosed in 1918, I may not have lived long enough to see the next christmas.  If the high sugars didn’t do me in, i most likely would have died of starvation. For, as the monograph outlines in great detail, until 1922 and the discovery of insulin, the only way to stave off death was literally to starve the patient.  As Dr. Allen wrote, “Expectations of an actual cure, in the sense of a restoration of the normal power of food assimilation will be disappointed under any dietetic treatment, and the need of some more potent therapy than diet is a keen stimulus to research.”
 
I think you get the point that research has never stopped on this disease. And that brings me to the point of this talk. I just got back from the annual Research Retreat held by the JDRF in New York, and never has Research been more important AND more productive. The first part of the meeting was the T1D Voices Council of which I am a member, along with 15 other voices from around the world, other T1Ds, medical professionals including our own Dr. Insel’s brother, several parents and even a grandmother. We reviewed some of the budget considerations of JDRF, and without going into the specific details and the way the funding is split up into different buckets, I can assure you that it DOES go to research that will lead to a Cure. We also discussed some issues JDRF faces with clinical trials and what the role of the individual is in terms of developing these. There are several places on line, including the JDRF web site, Medivizor and the National Institute of Health where you can go to enroll and be alerted when a trial comes up in your area…though there are not that many in Tucson. 
 
Lastly, we thought it would be a GREAT idea if JDRF took the opportunity of the 100 year anniversary of insulin in 2022, to develop  some clever, exciting marketing campaign. We felt it would great awareness and advocacy tool and hopefully, they can really put some effort into it.
 
It was then on the Research retreat where we got to sit in on the talks given by various researchers, the most interesting to me was that of Viacyte, a bio tech company in San Diego. We head from their lead researcher about this credit card sized thingie that will be implanted in the back and will ultimately offer 24 months of diabetes-free living. While JDRF is waiting for the clinical trials to go forward (Phase I and II begin next year, by the way), they are working with another company to develop the capsule materials. The encapsulated islet cells die without insulin so this other company has developed this material that is actually being incorporated into the body  – I wish I had that slide, but you could SEE blood vessels growing in and around it…bringing blood to the islet cells
 
And it is partnerships like this that were the focus of another talk by Pure Tech – this is basically a Venture Capital Firm that, in partnership with JDRF have created T1D Innovations which “will accelerate the development of innovative T1D therapies and enhance our ability of turning Type One into Type None.  Basically, T1D Innovations will create and fund companies to translate discoveries into products, helping them cross the well-known biomedical “valley of death” – which is the notorious gap that often prevents promising biomedical discoveries from being developed and reaching patients.  T1D Innovations will develop new companies around promising scientific research, providing the infrastructure and resources that are necessary to advance the research to/and through clinical development  and finally to the T1D community. 
 
We also heard from a guy at Pfizer who talked about another collaboration between Pharma, academic science and JDRF. The upshot of that was that if, after all the study and research, Pfizer doesn’t want to invest to bring it to market,  it reverts back to JDRF’s or the academic instuitutions control to find another way to bring it to the market, so some big pharmaceutical company is not going to discover our cure and then decide it isn’t WORTH the investment!
 
There is considerable research being done on restoring and rejuvenating islet cells which may someday lead to a vaccine that everyone gets, like the measles or polio vaccine. This would prevent the body from developing the disease in the first place, but in the nearer term, that very research will be used hand in hand with the encapsulation research.
 
Yes, the focus is definitely still on ending this disease. Some of the work being funded on islet and beta cell treatments, antibody treatments, smart insulin and especially the artificial pancreas, all point to exponential Improvements in treatments, eventual reversals and some day, the prevention of the disease world wide. 
 
The official line from JDRF is that “The path forward from Type One to Type None is a continuum of therapies that leads to a cure. As our research programs and therapies move through the pipeline, new treatments will progressively remove the daily burden, side effects, and complications.”
 
German Pathologist, Bernhard Naunyn, said, “the therapy of diabetes has been well founded by painstaking labor, highly fruitful in all directions; we may be proud of that which has been achieved and yielded here…….”  he wrote that in 1906, and I think it is still true.
 
We WILL turn Type One into Type None and on my and Errin and Brody and Aidan and Alecia and Nathanael’s behalf, not to mention everyone else, thank you for your support and belief in this organization!
Sara
alecia for blog

Relax. Don’t Do It.

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I consider myself a cyclical sleeper.  That is I go through phases of sleeping like a normal person and hopefully getting balanced sleep and then phases of extremely interrupted sleep or just a pretty acute lack ‘o sleep.

2 weeks ago I was visiting my parents.  I have a truly beautiful and happy-go-lucky little nephew.  I am pretty sure my nephew would love to get to know my dog better.  My dog seems quite determined to bark like crazy every time my nephew makes a peep.  My otherwise awesome dog woke my nephew up once within hours of his being there.  My awesome dog is a jerk at my parent’s house.

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My happy-go-lucky nephew’s crib is in the room next to where I sleep.  If you are not used to the Dexcom high or low beeps, they are fairly loud in a not so densely walled house.  I decided to switch from my overnight Dexcom audio to vibrate.  I even slept in PJ’s with a pocket so I would feel the alarm.  The Dexcom ended-up out of my pocket and under my ribs while I slept.  I had run earlier that day and the weather had been quite hot (anyone else see the low bg coming in this story?).  My vibrating ribs woke me up (If I’m ever in a band I will call it Vibrating Ribs).  Glucosticks to the rescue, back to sleep.  More vibrating, more Glucosticks, back to sleep.

This formula worked pretty well (not counting going low in my sleep twice… ahhhh running).  The vibration woke me up both times.  Great.  Dex rocks and no one else woke up.

So I got lackadaisical.  Who me?  Lazy?  No, say it isn’t so.  Careless?  Say What?

Yes, me.  I have probably put my Dex on audio overnight 2 times since visiting my parents.  Both times it was on days I did killer workouts.  Otherwise, it was a nice break to not hear the beeping at 171 when my HIGH beep starts at 170.  I have been sleeping with Dex on my pillow.  Sometimes Dex slides off and is under my arm, but I haven’t been running too low so yes, I thought all was well.

I spend a lot of time worrying that I will be another statistic of Dead In Bed Syndrome.  I worry that I will miss vital medical treatment because no one will know I’m unconscious in my bed.  I worry that if these scenarios happen on a weekend, my office won’t know to look for me until Monday and by then my body will stink and my dog will have possibly eaten my fingers (if you are squeamish, I absolutely should have warned you that I love shows like Criminal Minds and Dexter.  Oops.  Sorry.  Walk away from the blog now).  I got a Dexcom 7+ a year and half ago for EXACTLY these scenarios.  Every time I read of a case of Dead In Bed, I thank my lucky stars I have my Dex G4 and that on quite a few occasions Dex wakes me up, NOT my own body.  So why, WHY, would I relax about the audio on the Dexcom?  Why would I trust vibrate?  Because it worked before and therefore would absolutely do the trick again?

Diabetes dummy.  There is no relaxing.  I’m not a rookie.  I am however someone who’s been waking up with perfect bgs at 3am and finding myself unable to fall back asleep for hours.  Oh sleep, I need a good night’s sleep.  I didn’t turn off Dex, I just switched to vibrate.  That’s OK, right?

LOW bg

This morning I woke up and immediately felt the fuzz of being low.  I laid there feeling low.  My phone alarm would be going off in 5 minutes.  Oh I should hit snooze.  The alarm hadn’t gone off yet though.  There was no snooze to press.  Then what’s that noise?  Wait, I feel low, not like emergency low, but I-am-not-quite-right low.  Oh Dexcom.  Under my arm.  Dexcom.  Maybe I went low overnight.  No, I’m low right now.  65.  On the other side of me, in my bed, glucose tablets.  Grabbed them.  Ate 2.  Phone alarm went off.  Hit snooze.  Dexcom kept beeping.  66.

66 bg

Ate another glucose tablet.  Sat up in bed.  Fuzzy headache.  Looked at Dex.  Still too low.  Been low for awhile.  Scrolled back.  Horror.  I’d been low since shortly after 2am.  Took pics of Dexcom screen.  I should blog about this.  THIS is MY fault.  Sit up.  Dog is awake and burying head in pillow.  I am exhausted.  Head still hurts.  I am not shaky.  I don’t feel great.  Ask dog to make me coffee.  Nope.  He still won’t learn to do it.  He flat out ignores me.  Turn on TV.  Dexcom is buzzing.  It’s now under pillow.  Pillow keeps buzzing.  Still in 70s.  Check meter.  Yep, 70s.  Dog is back to sleep.  He’s not making me coffee.  Go make myself coffee.  Sit on bed.  Dex keeps beeping.  Under 90 pic (my low setting).  This is my fault.  Tweet pic of Dexcom.  Think back on my evening.  Didn’t each much.  Didn’t bolus much either.  Strolled 30 blocks after while I chatted with my Mom on the phone.  Was in 180s pre-bed.  Took conservative correction.  Hours later I dropped.  I never turned on the audio.  I know better.  No one would know I was dead or unconscious.  Drink coffee in shower.  Listen to Beyonce.  “I’m a Survivor”.  Rub-A-dub-dub.  No crying.  Things happen.  I am fine.  Get dressed.  I love this dress.  No one would have known I was dead.  Double arrow up on Dexcom.  Bg is too high now.  Take correction.  Walk out front door.  Eyes get misty in hallway.  Fight back tears in elevator.  I am tired.  I finally slept through the night.

THIS was my fault.

Turn Dexcom audio on.

 

Wordy Wednesday – Strength

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I had something else planned for Wordless Wednesday but the quote below crossed my path and stopped me in my tracks this morning.

This applies to things far, far beyond diabetes, huh?

And to the person I was thinking about at the exact moment I saw this quote, this is for you.  You are a star in my world.  xo

“When something bad happens you have three choices. You can let it define you,

let it destroy you,

or you can let it strengthen you.”
Ricochet. Grrrrrrr.

Ricochet. Grrrrrrr.

And in other news, this morning’s awesome Viper workout (oh boy am I going to be sore) resulted in a bg of 82 and a straight down Dexcom arrow in the last 5 minutes.  Grrrrr *shaking fist at sky*.  Quick Sticks to the rescue but I was running so late, and didn’t have time to wait it out before I hopped in the shower.  I am almost positive I washed my hair with body gel and washed my body with conditioner.  My skin feels very slippery (but soft and detangled).  I’m not-so-patiently chasing down the ricochet bg high that is occurring.  Ah diabetes… why so sassy today?

 

 

 

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.