Category Archives: Alecia’s Stem Cells

A Frozen American Girl (give away)

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*PLEASE NOTE: THE GIVE-A-WAY PORTION OF THE POST BELOW ENDED ON 1/6/16… the frozen shoulder is starting to get better, or shall I say “thaw”? Thanks! 

I keep starting and stopping a post I’ve been writing about how I was diagnosed with Frozen shoulder a few months ago.  It’s another bizarre complication of T1D and I did not have an easy time getting it diagnosed (2 doctors thought it was a partial tear of the rotator cuff although I suspected frozen shoulder but they thought I had too much mobility for it to be frozen), 3 failed MRI’s (it was impossible to keep my arm still at that weird angle for so long), and the absurd amount of time I had to wait to get into physical therapy (insurance, referrals, etc).  2 things seem to have accelerated the “freeze” this past Fall… I started boxing again and the trainer kept having me do push-ups on a strange angle and the fact that I ride my bike in Manhattan and have to keep reminding myself to loosen up and hold my shoulders down (I suspect I ride looking like I’m holding on for dear life… because I AM).

Due to this insurance mess, this morning was my last session at physical therapy.  I still have more sessions to go (pre approved) but can’t use them since my plan is being discontinued (12/31) and will have to start this process all over again next month with new insurance.  GRRRRR.

Iontophoresis? Yes please!

Iontophoresis? Yes please!

This week I received a return check from a deposit I had to put on my home many, many years ago.  I was quite surprised and decided 1/2 would go to something special.

When I left physical therapy this morning, there were police barricades every which way and I was redirected to walk across Rockefeller Center.  Big tree, tourists a’plenty, and my path blocked.  There were hundreds of officers standing in line on 5th Avenue.  Today was the funeral of NYPD Detective and Air National Guard technical sergeant Joseph Lemm, who was killed by a suicide bomber last week in Afghanistan.  It was another reminder of just how short this life is, as he leaves behind a wife and 2 children.  When I finished navigating barricades, I was standing in front of the American Girl flagship store which opens at 9am (surprise).

Yesterday my social media newsfeeds and emails were inundated with postings about how The American Girl Company had released a diabetes care kit for American Girl dolls.  So, for the first time in my life, I walked into an American Girl store (holy smokes, kid culture shock), and asked for the diabetes doll stuff.  Yep, they had it on display.  It includes:

Diabetes storage case, ID card, medical bracelet, glucose monitor and lancet device, glucose tab container, an insulin pump, an insulin pen, some stickers, adhesive disk, and a log book.

American Girl Diabetes Care Kit

American Girl Diabetes Care Kit

I did not cry in the store since I was still shocked I was there and have also never understood American Girl dolls.  These dolls weren’t around in my time (I was all about Barbie) but my sister had them.  I always thought they were focused on historical periods which confused the heck out of me because why would Kit from 1934 be hanging out with Samantha from 1904 and why would either of them have inline skates?  Made zero sense to me.

This morning, I learned that there are a TON of these dolls and the American History dolls are just one part.  Kids, well parents, get the dolls to look like the kid.  They have a whole resturant in the store where people go to have tea with their doll.  Kids have birthday parties and all bring their American girl dolls along… and NOW that kid with T1D, can have accessories (a whole kit) that gives their doll the very same devices they use to manage and thrive with T1D.  Yep, no tears until right this very second.  I never grew up with an insulin pump and blood glucose meters came later in my diabetes days (I = Barbie playing dinosaur) but I did play a heck of a lot of sports.  American Girl dolls have a zillion sport accessory options (A ZILLION) and NOW they have diabetes equipment options too. Amazing.  Truly Me!

American Girl TRULY ME

American Girl TRULY ME

I took  home deposit money and bought some American Girl Diabetes Care Kits and then I did what any grown woman would do after being a kid in a toy store… I called my Mom.  Although she was flabbergasted that this diabetes equipment exists for dolls, she was more surprised that for all these years, I’d thought American Girl dolls should have been called Time Traveler dolls.

I now have 6 American Girl Diabetes Kits to GIVE away and my Mom suggested I give them away right here.  So in the comments, please tell me why you would like the Care kit and my Mom will pick out the winners (and I’ll notify you via the comments section by 1/6/16 and I will pick-up the shipping.  Shipping outside of the US will take a bit longer though).

AG box

I ask one thing in return though, that you pay it forward.

On the other side of Pain is Wisdom.  xo

And for more information on how this American Girls diabetes care kit happened check out this story from the LA Times.

AG IP

Nice Stems – Advil On Ice Please

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Quick update… One of the Alecia’s Stem Cells JDRF Walk team shirts from many moons ago made reference to “Nice Stems”, as in “nice legs”.  It was cheeky.

Stemmy

Never in a million years, did I think the switch to cycling would leave my stems looking like this (4 days after my last “accident”):

AW Stems

 

Clipless pedals are awesome, until they are not awesome.  Also why are they not called clip-in pedals?  Or Holy-shirt-I-can’t-get-out-of-these-pedals?  Or I’M TRAPPED pedals?

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Saturday 5/23. First day with clipless pedals. I was killing it, until the very end when I was heading home, and slowing down at a red light. Suddenly found myself on the ground in Manhattan traffic.

My legs hate T1D more than I do.  Really.  I asked them.  65 Miles on Monday.  My bike is fixed (again) and I will be back out training tomorrow.  Hopefully no more hitting the wall (literally and figuratively) or being one with the pavement.

Dex AW

65 miler on Memorial Day. Highlight was my nephew showing up at the midpoint. Clipped my helmet on for me and then tried to force feed me the clip.

Also this article came out this week.  Excellent and a glamour shot of my dear friend Brian and more information on our Artificial Pancreas trial (definitely one of the better articles out there).

A year ago, I was planning what I was going to wear to a polo match and what snacks I needed to bring tomorrow.  Tonight I will be laying out my cycling gear, grabbing bananas, Gatorade, and pickles on my way home from work.

If you’ve ever felt inclined to support someone doing an endurance sport for the 1st time, please share my link.  If anyone tells you there is no crying in cycling, please tell them that phrase is only good for baseball.  #StayStrong #CryItOut #AdvilAndIcePlease

Last Call KISS

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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

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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

Cha-Ching MF!

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Last week I took the Curse jar to the bank.  The jar itself is stupidly heavy (I did not buy the jar nor write the label) which led me to believe there would be more dinero in there than there actually was…BUT, Office Cuss Jar donated $43.55 to our Alecia’s Stem Cells Walk Team!  F yeah!

cussjarJPG

And on that note, THIS is my current favorite (and yes I just put a quarter in for posting this…. seemed like the right thing to do).

MF

 

I Love You More

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There is so much D stuff going on around here that I crashed yesterday and …

TOOK a NAP (I am NOT a napper).  While my brain tries to process and absorb the past few days, I have some pics I just can’t wait to share.

I (oddly, nervously) HELD the encapsulation project from ViaCyte.

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My friend Cindy took this pic.  She is a lovely and a really funny D-Mom and we tend to make each other cry.  You know what she’s not?  A photographer!  Hello Blurry pic.

Next up: #JDRFOneWalk Conference in Washington, DC was wonderful.  HOPE is so beautifully motivating.  Facial tattoos while on a 20 minute walk by oneself in this nation’s capital, lends to some pretty confusing conversations (I kept forgetting I had it on my face… most of the confusion involved the World Cup).

Mike Tyson without the ear biting.

IMG_4165

My bike riding has taken on a new angle.  Details later, but I’m riding a 3-speed Citibike or a stationary bike at the gym, but more.  My joking is no longer a joke.  I’m training-ish.  I ring the Citibike bell like nobody’s business BUT mostly when no one’s on the path.  Yes, I’m a 10 years old.  Want to join the Manhattan/Brooklyn JDRF One Walk?  That’s the bridge in the background of my bike training pic.  Gorgeous right?

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And finally, I had an incredibly magical moment on Saturday.

Exhausted and pedaling along when I saw a BIG heart!

IMG_4233 IMG_4227

Yes, that is a piano that appears to have washed ashore on the tiny bank of the East River.  I hit the breaks and wondered just how tired and dehydrated I could possibly be.

These pics are my proof that I did indeed see a piano in the sand, tagged with A HEART.

Magic, I’m telling you, magic.

More to come. xo

 

 

Wimpiss Breath?

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Tonight is the official kick-off for the NYC (Manhattan’s) ONE Walk which is the roll out of a whole new platform for JDRF’s Walk (the evening is called Progress to Type None).  The purpose of the event is to discuss research developments over the past year (artificial pancreas, complications, encapsulation, smart insulin, restoration, and prevention), upcoming Team Walk plans, and the new website for the walk this year (thank God)… AND guess who the opening speaker is… ME.  Guess who I get to introduce? Jeffrey Brewer (I just found this out 15 minutes ago… yikes).

Today seems like a GREAT day to shake-off all this fear stuff that has really been nagging me since my 35th diaversary last week (check out the comments section of that post… yay DOC).  Let’s face it though… I’m not going to simply shake it off (although I really LOVED Scott’s comment “Yes, thirty five years is a long time – but it’s just a series of individual days, and so far you’ve survived every single one of them. There will be many more, and I’m sure you’ll survive those too.”)  So awesome. 

So, what’s my plan, you say?

Redirecting scared energy.  Granted this is an experiment… but, I think this could work (read: OMG this better work).  I have a lot more to read at this event than I thought and I haven’t actually seen the powerpoint that I will speaking along to (terrible sentence structure by the way… ending with a preposition.  “Along to”… cringe worthy).

But here’s the really great part… I get to speak a tiny bit about Alecia’s Stem Cells and with that, I will absolutely talk about the goals of this team.  That puts me in fighter mode.  That takes me out of worry mode.  I really need to get back to outlining that part though (geez where is this day going?).

Also on a slightly humorous side note: in my introduction tonight I am supposed to state that I am our Walk’s Corporate Team CHAMPION.  When I was a kid, my brothers and I would wrestle (although this story applies to most games we played).  When someone won, they SANG (often while flexing their muscles), “I am the CHAMPION, YOU ARE THE WIMPISS BREATH”, over and over (there was a tune involved, I promise).  I still don’t even know that wimpiss breath means but it had something to do with being a wimp and it sort of sounded bad.  It is damn near impossible to think of saying that line tonight, CHAMPION,  and not flexing like a professional wrestler from the 80s and then raising my arms up and hopping up and down like Rocky (I may just do the flexing anyway).

Tonight I get to embrace my fear of public speaking yet again.

I WILL redirect my fear.

I am forced to be brave.

When you’re SCARED but you still do it anyway, that’s BRAVE. -Neil Gaimon

 

New Rates And Some Other Stuff

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Endo appointment yesterday.  Didn’t have high hopes (high, ha) as I have been running way TOO high lately, especially overnight.  A1c is a higher than it has been in 3 years.  Disappointing but not surprising (up .3 BUT that takes me to the next whole number and that I seriously dislike).  Also gained a chunk of weight.  More than I thought, but not upsetting as I missed having a butt.  Baby Got Back can’t be my favorite song without some junk in the trunk right?

Adjusted some basal rates with my doctor as the last adjustments did zilch.

New basals worked way TOO well overnight. Ooof.  This morning’s headache plus allergies was like being b*tched slapped by my pump and then a bag of freshly cut grass… over and over again.

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Also, I found a whole bunch of hearts this morning. And TONS the last few days.  Timing. Found: hearts . I still have a lot to add.  I find myself walking routes where I know I will see hearts that I’ve already met.  If nothing else, it’s a good breathing exercise.  See a heart, take a HUGE deep breath.

According to FitBit, I’m averaging just shy of 40 miles a week.  How the H-E-double-hockey-sticks is that possible?!?  Amazing.  That’s all walking!  Cray.

There appears to be another shot (shots, ha) at my getting into an artificial pancreas trial.  I don’t want to think too much about it and set myself up for disappointment but the idea of this old body being used for diabetes progress is deliriously exciting.  Stop thinking about it.  Easier to say than do.

My 35th diaversary is approaching next month.  My feelings on this are a tangled web.  I should write about that, as maybe I’m not the only one?  35 years of this fear and giving myself incessant mental pep talks is a really long time.

In other news, my eye is FINALLY healing (and an allergy puff ball).

eyeheal

This past Saturday, I said goodbye to two of the very biggest Alecia’s Stem Cells supporters.  They were with me from the very beginning of founding ASC.  Saturday would have been their 60th wedding anniversary.  Now they are back together.  Also, being on a moving dock with ashes is a possible recipe for disaster.  Life is short.  Never lose sight of the wonderful experiences you’ve had along the way.  The people who believe in you… hug them, love them, appreciate them.  Sappy-McSappster moment.

GBK

A few other random thoughts and observations:  50 Cent should stick to rap, I need to try pump sites in my lower back, Maya Angelou was one hell of a woman, and I may have seen Apollo Creed at a train station in Jersey on memorial day.

apollo

 

 

 

 

 

 

 

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

 

Australia?

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ASC 2013

Alecia’s Stem Cells- JDRF- 2013

 

WE’RE GOING TO AUSTRALIA!

 

Well actually the Alecia’s Stem Cells 2013 Shirt graphic is. Remember our award winning ASC 2013 JDRF NYC Shirts?

“New Technologies, New Treatments, New York”… ?

 

ASC JAJ

JDRF Australia contacted me for their New York, New York themed Gala (well, Galas!). They LOVED our shirts (hey we loved our shirts too), so presto, I sent over the graphics.  They have a printer who printed the shirts for free (yay) and I just got word they have printed shirts for all their volunteers to wear at the Australian Galas… So in a way, ASC will be at 4 Galas this May…Melbourne, Sydney, Perth & Brisbane.  Amazing!

This perfectly ties in with my last 2 Volunteering themed posts too!  More amazing!

Do good, feel good.

Me and my parents

Me and my parents

JDRF 2013 Walk