JDRF Meet-up & Tandem

Last night the JDRF Metros group met at a bar/restaurant and got to do a Q&A with our local Tandem T-Slim pump rep.  As much as I have read about the T-Slim and know people who have it, it was extremely informative and very cool to get to play with the actual pump a bit.  A few items of note (well for me and these are in no specific order, just how my mind recalled them):

  • I got to grill the rep on the finances of the company.
  • I did not realize that the developers and financiers are from the same company that created Symilin.  I had a horrendously BAD experience on Symlin.  Like really, really bad.  Like dangerously bad.
  • To my objection that there is no back-up battery for the T Slim (it’s rechargeable which scares the shirt off of me after losing power for 6 days during hurricane Sandy), the rep suggested getting one of those mini portable chargers you can get at the drug store (they take 2 batteries).  Almost like having a portable battery back-up, I guess.
  • The charging time for the T Slim was much shorter than I thought and it does NOT need to be almost drained before you charge it (like old cell phones).
  • I was impressed by ALL of the features that make the T-Slim advantageous to other pumps while on airplanes (cabin pressure issues).  I found this part super interesting (and although I didn’t totally understand it, the differences in the venting system were cool… get it?  Venting?  Cool?  That’s 3 cups of coffee making these jokes people!).
  • Alarm for the pump getting too hot and possibly compromising insulin.  I think I’ve had this issue in the summer months and this is an advantage to me.
  • FONT:  On some of the screens I found the font a bit small (and I was wearing my glasses).  The font size can’t be changed.  Insert bigger-is-better jokes.
  • Cut off: If a piano fell out of the sky and landed on me, I’d probably have problems far bigger than my pump getting crushed.  The maximum amount of insulin I ever have in my pump is approximately 110 units.  My total daily does ranges from 18.5 to 24 units a day.  According to the rep, if my pump were smashed, I could possibly get injected with 110 units at once.  I’m fairly certain 4 days of insulin all at once, could be the end of me.  With the T-Slim, due to how the reservoir works, it would apparently be impossible for it to give all the insulin at once.  I didn’t totally get that part but weird stuff falls off NYC buildings all the time so safety is important.
Incredibly dark space.  We used flashlights on phones to snap this pic.

Incredibly dark space. We used flashlights on phones to snap this pic.

  • I think reps believe we all want to hear that a company isn’t in it for the money.  Tandem just made their first profit this previous quarter.  That doesn’t sell me.  I want a pump from a big profitable business.  I want to know if something goes wrong, they can afford to fix it.  I also want to know a company is investing in “what’s next” all the time.  I want to know they can afford the patent process.  I want to hear they have lobbyist.  This DOES not mean they can’t handle these issues, but there is a comfort to ME knowing a company like Johnson & Johnson is diversified and not just making one product.  Yeah, I’m a nerd but a pump is a huge investment and something we need to rely on completely.
  • When statistics are rattled off to me about a pump having larger growth (in the market place) than any other pump available, I think to myself “No shirt, Sherlock”.  If your pump is brand spanking new, your sales figures (percentage) started at zero.  If your growth percentage is NOT the biggest, you’re in big trouble.
  • Sitting in a bar with 4 other young women learning about the T-Slim from a rep who demonstrated from both from a T Slim pump and from his IPad was interesting.  Occasionally I would forget where we were, look up and see guys staring from the bar.  Gotta wonder what they were thinking.  A bunch of ladies pouring over some sort of technology sales presentation in a loud and very dark bar.  Sexy, smart?  Or weird and possibly illegal activity going on in the corner?
  • I was impressed that the rep sat there for 3 hours answering our questions (and he ordered food but never got to eat it).
  • Another item I appreciate is that the basal rates go to the thousandth decimal point.  That was a factor in my Animas pump decision.  My regular weekday basal rate runs at .425, .475, .600, and back to .475.  I think that those fractions are helpful for me.
  • The Tandem rep is not T1D, but has members in his extended family who are.  The NYC 1/2 Marathon is this Sunday.  There are 33 runners on the JDRF Team.  This rep is one of them.  Does that make me like the T-Slim more?  Yes.  Should anyone be using this logic to make a decision about a pump?  No way.  I do however think (to me), it gives the T Slim a bonus point.
  • I am not due for a new pump any time soon however I would consider the T-Slim much more than I would have before.
The worst photo ever taken.  No, I was not in a moving vehicle.

The worst photo ever taken. No, I was not in a moving vehicle.

Lucky 12

LUCKY 12I pass by this patch of sidewalk almost everyday.  I noticed it again as I rushed home from the gym this morning.

12

12 is my favorite number.  12 is my “lucky” number.  Alecia’s Stem Cells was founded 12 years ago.  2012 wasn’t quite what I thought it would be.  There’s gotta a be a BIGGER 12 out there.  Please, please let there be a bigger 12 out there.

I received some horrible news from a friend over the weekend.  My Dad hugged me and I just started sobbing.  I believe that is very much a Dad/daughter thing.  Hug from Dad = tears from me.  Life has thrown me a slew of challenges, all in a row lately.  My Dad kept whispering in my ear, “It doesn’t make sense right now, but there is a plan for you.  Just remember, there is a plan for you.  It’s just a different path.”  There was some God stuff thrown in there too but that’s between me and Dad and well, God.

I was with the friend with the horrible news last evening (that is a terrible description by the way).  There were some tears.  We discussed many things.  She’s always supported my diabetes and JDRF projects.  I told her about the JDRF Walk Kick-Off/ Research Update I’d attended on Wednesday night.  I told her about JDRF’s encapsulation program (or at least what I understood of it) and all the things I learned last week.  I told her about how I felt inspired, a renewed sense of hope, again.  I told her about my friend who’s part of JDRF’s Voices Council and how she recently shared with me that she too felt inspired.  At the end of our meal, I think I’d not only given her a pep talk, but I’d also given myself one.  She kept telling me how much I inspire her.  Talking with her really helped inspire me too.  Sometimes, I think the energy you give off, really does come back to you.  I got the most positive e-mail from her first thing this morning.  It felt like a hug.

12

LUCKY 12.

I’ve gotta a lot of work to do.

Join me.  Join our team.  Get involved.

Oh, and if you don’t like me or think I’m a jerk or I talk too much, just donate to this guy.

The fundraising all goes to the same place although we seem to be in some sort of competition.  This is the photo he put on Facebook last night.  Yes, that is me.  No, that is not my quote.  If this quote raises funding for research, then yes, that is EXACTLY what I said EXCEPT, I definitely didn’t call anyone Mr. Strahan*.

Ben H

 

And if you’d like more info on Alecia’s Stem Cells, want to spy on how we’re doing, want to join our team, want to sponsor one of our walkers, want to donate, please go here AND read the post below this one for more ASC info. XO

* Team Hoffmanderson is an awesome team and I am extremely happy to call them friends.  I mean, they might not even be friends, but I’m happy to call them that.

 

You walked where?

This is late but life is busy.  I already told you about my trip to the ER.  So now it’s time to flip the switch.  Sunday arrived (9/30), I told my stomach to knock it off, and we all arrived at the walk bright and early.  Here is the email I sent to my fellow teammates and supporters AFTER The Walk (with an updated total and some added photos):

What a day for a JDRF Walk! 

As many of you know, this year was our BIGGEST Alecia’s Stem Cells WALK TEAM EVER!  I could not have been more excited as Sunday approached.  (My friend ) D and I had our WALKS With FRIENDS themed shirts (hats & tote bags too) ready to go, we had a lot of newbie walkers, and for the first time ever, we had a whole bunch of my fellow T1Ds all walking with us too!  

As my fellow walkers know, Friday afternoon turned kind of crazy when I ended up in the ER, stayed there through early Saturday morning, had to cancel my interview on our local CBS Saturday morning show (to speak about JDRF, the Walk, and our AMAZING Alecia’s Stem Cells team 11th anniversary).  If I wasn’t so dehydrated, I probably would have cried a river BUT I did make it to Walk Day!  I think JDRF felt sorry for me and as a cheer-up, they had the President/CEO of JDRF, Jeffery Brewer, come talk to me at our Alecia’s Stem Cells table, which was pretty awesome! 
I have some other incredible moments to report to you, my fellow walkers, and supporters of our fundraising mission…as of today, we have raised a whopping $21,381.62.  Incredible! WOW!
Next up….D’s incredibly cool, customizable shirts WON for BEST FRIENDS & FAMILY TEAM SHIRTS! YAY D (that’s the pic from the moment we heard the shirts won)!


The weather miraculously held-up (after some dicey weather forecasts), WE BEAT OUR GOAL, and my parents and siblings were all with us (except my nephew and sister-in-law Alysson who cheered us on and sent pics of my week and half old nephew in his Alecia’s Stem Cells gear).  We had walkers travel from California, Chicago, Philadelphia, New Jersey and a 7 hour bus ride from Penn State!  Friends I’ve known for 20+ years walked, new friends-of-friends I just met that day walked, and my office mates and their families walked!  We had 46 team members make it to walk day and I could not be prouder!
Walk Day is like a weird holiday for me.  Its a day full of hope, promise and an incredible amount of love!  It is a day near and dear to me.  I can’t thank you all for your amazing generosity and supporting the ongoing efforts of JDRF. 

And just remember, if they don’t cure diabetes by next year, we would LOVE to have you join us in our NYC bridge crossing!