Breathe, Absorb, and Learn.

This was the first thing I read when I woke up this morning (as I treated a nagging low BG). I have read it a few times throughout the day, and have read it 3 more times as I’m getting ready for bed tonight. I hope to absorb this message, let it really sink in. Let it soak through and weigh heavy in my heart. I’d like to live more like this. It’s a quote too good to keep to myself. You are already naked. How beautiful.

“Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Almost everything–all external expectations, all pride, all fear of embarrassment or failure–these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart. ”

—Steve Jobs (1955-2011)
Co Founder Apple Inc.

This Happened Today (and some news from yesterday).

ASCWWW

This is from my Thank You Supporters email, however TODAY ASC reached a flabbergasting milestone and based on yesterday’s news, the final paragraph needed to be updated too:

Wow!  We did it!  We raised an astounding $40,714.55 and we still have donations and sweepstakes ticket sales rolling in.  We have achieved a fundraising level far beyond my greatest hopes.  Thank you!

We had Walkers this year from NY, NJ, PA, IL, VA and MN.  We had our largest Walk team ever.  We had friends and family from the very first Alecia’s Stem Cells team in 2001 and first time walkers who’d never been across the Brooklyn Bridge.  We had a grandmother who’s T1D, a 40-something T1D (me), a 20-something T1D and a 8-year old T1D.  The team may carry my name, but we were walking for ALL of us. Alecia’s Stem Cells was announced as one of the top 5 fundraising teams for JDRF NYC.  We ran out of yellow ASC team ONE to NONE shirts and even had some walkers in the grey shirts from our online fundraising sale last month.  Simply put, it was AMAZING adventure this year.

At our post Walk lunch, I finally got to announce what I’d been waiting 2 months to say, this year I was saying good-bye to Alecia’s Stem Cells.  Sunday 9/28 was the end of a HUGE part of my life with JDRF and the Walk program.  This team has walked 15 JDRF walks;  13 in NYC, 1 in Boston and 1 in LA.  Sunday wasn’t just an end though, it was a step for me in the next level of my involvement with JDRF, and a new adventure.  I am now joining JDRF’s endurance sports program, specifically I am looking to participate in 2015’s “The Ride” which is a 100 mile bike ride held in various spots across the United States (including Death Valley which sounds like a place I’d like to avoid).  I am excited and scared silly to train for something like this, not just as a T1D navigating low and high blood sugars in an endurance sport, but as someone training on a bike via Manhattan streets (yikes… well for now).  My next “step” is less about stepping and more about pedaling.

To the Walkers, the fundraisers, the donors, and everyone who sold/bought our online shirts and Mercedes raffle tickets, I thank you.  Whether you walked or cheered us on, you are indeed part of the ASC team.  Thank you to everyone who supported my fellow walkers too.  We had many walkers who reached V1P status by raising over $1000 for our team.  Thank you for supporting my dream, a dream shared by so many others involved with JDRF, that there IS a future where T1D simply doesn’t exist.

As all this Walk stuff has been going on, I have been involved in another project that has been a rollercoaster (since June 2013).  On Friday, I had my final screening at Mt. Sinai for the next step as a hopeful participant in an artificial pancreas clinical trial.  As I have mentioned, this is just ONE program that is happening because of a grant from JDRF.  The Artificial Pancreas is not a CURE, but it is an incredible advancement in diabetes care and management.  The Artificial Pancreas Project is JDRF money at work.  This is happening because of YOU.

Yesterday I got my results.  I am no longer a candidate.  I have PARTICIPANT status.

Thank you for helping JDRF turn Type One into Type None.

Now, I need to get a bike (don’t worry, I do have a helmet).

Love and gratitude. xo

 

On The Road and In The Air

Here are some D travel pointers and PLEASE add to them.

There is enough information out there regarding insulin pumps and being on a plane that you could stay busy reading for days. All sorts of info about the affects of altitude, cabin pressure and the pressure in our own bodies. Here’s what I know (for myself). Be prepared to do a pump site change once you get where you’re going. Traveling with extra supplies is a given, so add an extra, to your extra set of supplies, for that change.

You are allowed 2 carry-ons. Do not put your D supplies in the larger of the the 2. I repeat DO NOT. Your roller board may be small and fit perfectly in the overhead BUT that does not mean, with all the other passengers, there will be room for YOUR bag above your seat. If it comes down to checking your bag at the gate or at the door of the plane, frantically pulling out Dexcom and pump supplies with your undies falling out of your bag is no fun. Nope. No fun. Unless you have silly undies.

Insulin pumper? Yes? Bring a back-up pump. You could live your whole life and never have a pump problem. You will go someplace unfamiliar and your pump will be so excited, it will go cuckoo. Lots of companies have pump loaner programs. Did you have a pump BEFORE the one you have now? Bring it. It may be just something else to lug around and if that’s the case, consider yourself lucky. If you are in another country over a major holiday and discover a crack in your pump, no matter how great the pump company is, customs is a biatch and you will really really really be glad you have a back up.

Carry quick sugars that don’t melt. Glucose tabs are my go to. Glucolifts are my current fave but who doesn’t want a Starburst from time to time? They melt. Treating a low while eating the Starburst rapper because it was all melted together is simply not the ideal. Maybe the paper is a source of fiber? Doubtful. No melting treatments for lows. Do it.

Take a photo of your pump settings. Let’s say that awful scenario of having to use your back up pump OR simply something goes wonky with your current pump…. Do you have any idea what your basal rates are off the top of your head? I do not. Having a pic on your phone can be a true game changer. Also this takes maybe 20 seconds to do, so do it.

We all know a zillion horrible D stories of people going through security. I have a few incidents myself which were full-on “oh no you didn’t”. Here’s what I try to do. I try to be pleasant. I smile. I make jokes. I am courteous. Why? Because why the hell not? I want to get on the damn plane, not cause a scene. I engage in conversation. Don’t get me wrong, I actually was in tears once with a bunch of security BS and then flew across country being upset the entire time BUT for the most part, I lay on the charm. Flies, honey, vinegar. You chose.

If all else fails and you’re away from home, and perhaps you’ve traveled all over the damn place and yet THIS is the trip where you forgot a supply, reach out to the DOC. The diabetes online community is a bunch of doers and helpers. It’s amazing and heartwarming. Social media can really be your BFF. When my Dexcom sensor went bananas on a trip to Dallas (and I didn’t bring a spare), I was amazed at people’s willingness to either send me a sensor OR contact Texans they knew to try to help. Amazing. Dexcom Fedexed me a new sensor to my hotel. All worked out but would have loved to have skipped that stress.

I’m off and running! Travel safe.

Last Call KISS

2f66677eb0cf8d07c91dbe56cd32015cIn a matter of hours, our T-shirt sale/fundraising extravaganza will come to an end (and the shirts will GO TO PRINT).  The ONE to NONE shirt sale ends TONIGHT at midnight CST.  I had hoped we’d sell 40 shirts (needed to sell 24 to go to print) and Pres-To-The-Effing-O (PRESTO) I just heard we are up to 46.  Wow!  Not bad!

Proceeds go to JDRF, rocking graphic T goes to YOU (or you could give it as a gift, right?  Or buy a whole bunch, and give as LOTS of gifts).

I’m too tired right now to end this post in a witty, or snarky or even sassy way (although I’d like to, so I’m open to suggestions), however earlier today I explained the rationale behind a KISS work/design project (Keep It Simple, Stupid).  I then used a photo from over the weekend when I happened to meet Paul Stanley in a restaurant (he of KISS fame) to drive my point home.  I laughed myself silly and even cheered for myself which is just full-on weird.  My wit is now long gone for the day (possibly week), so if you would like a T-shirt, just get on it, because you are running out of time (mere hours).

Rock and Roll all night?  Yep, tired.

http://inktothepeople.com/marketplace/ink-detail/38593

 

OnetoNone

Alecia’s Stem Cells JDRF ONE WALK team is selling shirts again!  New spin!  These awesome shirts are NOT the shirts our walk team will be wearing this year.  This design comes in a slew of styles and sizes…. mens, womens, kiddos.

2f66677eb0cf8d07c91dbe56cd32015c

Here was the idea…. design a shirt for sale to the public and the proceeds will go to JDRF.  CHECK.

Design a shirt that is a conversation starter…. One arrow none?  Oh what does that mean?

Design a shirt that anyone and everyone would wear.

Design a shirt that embraces both JDRF and Alecia’s Stem Cells…. yep, done.

Use red!  Red is the color of energy, blood, desire and PASSION!  WE have the PASSION to PUSH Type ONE to Type NONE!

Want a shirt?  OnetoNone

Care to help?  Share this link: http://inktothepeople.com/marketplace/ink-detail/38593

And a HUGE thank you to Ink to the People who are so supportive of me, ASC, and fighting T1D!

Happy Labor Day weekend! xo

Go You

“Never forget that you are one of a kind. Never forget that if there weren’t any need for you in all your uniqueness to be on this earth, you wouldn’t be here in the first place. And never forget, no matter how overwhelming life’s challenges and problems seem to be, that one person can make a difference in the world. In fact, it is always because of one person that all the changes that matter in the world come about. So be that one person.”
—R. Buckminster Fuller (1895-1983)
Archtiect, Engineer, Inventor

FREE – NYC JDRF ONE Expo

There is quite a roster for the JDRF NYC ONE Expo on 9/16.

ONE event to get Educated, Engaged, and Empowered!

I will be speaking during the Research Update along with Marlon Pragnell,  JDRF’s Senior Scientific Program Manager, who will be discussing the advances in JDRF’s priority T1D therapies, including encapsulation, prevention and a detailed look on the Artificial Pancreas Project and Dr Carol Levy, Director of Type 1 Diabetes and Diabetes in Pregnancy at Mt Sinai Hospital who will be presenting about Artificial Pancreas research being conducted at Mount Sinai Hospital in NYC.

I know space is limited for the presentations, so here’s the registration link AND it’s FREE (more info if you follow link than the image below): ONE EXPO

One-Expo-Flyer_v2

 

 

Baby Got Back (For 24 Hours)

In an effort to give my tummy a break and a little healing time, I tried a “flank” pump site Monday morning.  Yep, my back.  I know people wear insulin pump sites there.  Its an approved spot on those pump site diagrams.  I have attempted this before without success.  Animas (Unimedical) blue 6mm cannula and I was ready to go.  It’s a little strange to rotate around to do the insertion BUT it’s a spring loaded site inserter and I suspect that makes it a hell-of-a-mucho more manageable.

*BAM*.  I was good to go and made sure to wear jeans yesterday that were far lower than the site spot.  I was aware that the site hurt.  It didn’t hurt like a tummy site that gets all crazy stabby immediately upon insertion and you just know you have to yank it out and then you’re either prepared for a geyser or your cursing at yourself because you have blood tie-dying your clothing AND you SHOULD have been prepared.  Nope, the flank was not that kind of pain.  Just irritating.

back site 2

 

Mind over matter?  I was busy all day but it hurt.  A bit stingy.  A bit itchy.  The insulin absorption from the site seemed off, but eventually worked (although slower than usual).  I went out to dinner and sat on a bench type seat (I happened to be on a boat which was lovely) so my back was never pressed against the back of a chair and I avoided that irritation completely.  Getting ready for bed, I kept thinking it felt stingy-itchy, but I needed to stick (pun intended) it out.

I woke up in the wee morning hours when I felt the Dexcom site pull off my thigh.  Seriously? I had IV3000’d the hell out of it right before my Gilligan’s Island dinner tour and the IV tape somehow dislodged from me in bed, got slightly stuck on the sheets and when I rolled to the side, I ripped that Dexcom site right out.  BG was in the 120s, so back to sleep.

Early gym morning.  Replaced Dexcom and slathered the new one with SkinTac.  Good to go.  Pulled on my gym pants and felt something move on my back.  Well those gym pants are tough.  So incredibly tough that they *flicked* the pump site right off me.  Put a new site on my tummy and was off to the gym.  My phantom back site still hurt.  Ouch.

back site re

So what’s the deal?  Am I really the only one who can’t get these flank sites to work?  The pant flicking was unfortunate BUT that site was still hurting and I don’t think I would have made it the full day with that stabby site.  Thank you gym pants.  Well done.  All sarcasm aside (there is no such thing, so some sarcasm aside), does anyone have a flank site recommendation?  I had previously tried the 9mm and thought the 6mm would be the solution.  Nope.  Does this need to be a two man operation and I just need to get further back on my back?  Should I be going to yoga to get better contortionist moves?  Do I just have it in the wrong spot?  Anyone?

Fear? Cowabunga Dude

IMPORTANT: WE WILL NOT OFFER YOUR HEALTH INSURANCE POLICY NEXT YEAR.

That sentence (and the letter it was attached to) has been on my list of life fears for years and years and years.  Due to a rather complicated (ok, weird) work situation over the past 12 years, I have joked (read: definitely NOT joked) that I would marry for health insurance.  New York State (and NY City) have some health insurance laws (not to mention premiums) that seem to be “different” than many other states.

This “NOT OFFER” is not taking effect right away.  I have a few months.  I will slam my face repeatedly into a window if I have another conversation with my “advisor” at Fill-in-the-Blank Insurance because:

1. He has a name that is only fitting for a child.

2.  He sounds like he just hopped off his skateboard to take my call.

3.  When he told me about the other plan available to me, he explained that other people with my “old timer” plan switched last time they had open enrollment and they all, “REALLY LIKE THEIR NEW PLAN”.  (God I wish I could say his name but I’m afraid someone who reads this has a kid with a cute bowl cut named —- and will be eternally offended).  Really —-?  EveryONE who switched plans likes their new plan?  That’s amazing!  So, how exactly does this “everyone” measurement work?

“Well, no one in my territories has called to complain.”

Seriously, no one has called you, —-, to complain so therefore EVERYONE likes their new plan?  Holy shit, this is my advisor?  (Note: I took Logic in college to fill a core requirement.  I did not do well.  I am sure I beat —- in that class).

4.  When I ask about durable medical equipment coverage, I actually want an answer about durable medical equipment.  Crazy, I know.

5.  When I’m finally told (by someone else) that the plans we are talking about are subject to change in October, before the enrollment period, and I ask —- about this, here’s what I don’t want to hear, “I think you’ll really like the plan everyone else switched to and there will probably be a plan like-that in October”.

6. That phone call required many quarters.  Many.  I would smack —- across the face with his skateboard if I could.

7.  My favorite part was when I said, “So you’re basically telling me I have options that sound like cheaper premiums but less coverage and more expensive costs in almost every other area, but you can’t confirm any of this because the official insurance plans don’t come out until October?  And now I can feel like I’m going to throw-up every day worrying about this for 2 months?  Well at least I’ll be really skinny and sleep is over-rated anyway right?.”  The response, “You really are funny.”  Ugh

Here’s the thing and hey maybe it’s because I’m just a laugh-a-minute, or because it was a day where other huge fears (job related) also happened to come true (oh the timing!), but I’m just not freaking out.  I am so oddly calm, I’m wondering if someone is drugging my coffee.  HUGE fear….happening… not freaking out.  Who am I???  I almost feel guilty that I’m not freaking out, but when you are juggling, more than you ever thought you could realistically juggle, does one more ball in the air change everything?  I dunno, I don’t actually know how to juggle, I find most clowns annoying (unless they make balloon sculptures… balloons change it up completely), and my athleticism doesn’t always lend itself to eye-hand coordination, so I have no one to ask about my juggling theory.

I’ll deal with it (while I attempt to stockpile the eff out of every supply I can get my hands on).*

*I’ve decided “eff” doesn’t count as cursing.

tmnt