Nice Stems – Advil On Ice Please

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

Insulin N’ Roses (I N’ R)

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

SquareTag

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

THREE.

Here’s the conclusion of the Artificial Pancreas Trial blog on the JDRF page.  As I have said before, these trials need volunteers and people to spread the word.  I was asked by a relative last night, if I got “the” pancreas.  She thought my participating in this trial was a pancreas replacement of some sort… like surgically.  People beyond the T1D community need information.  I ask you to please help me spread the word if you too want the AP to become a reality.   Get other people to like the JDRF Facebook page too.  Every once in a while, people get inspired by something they read, something that catches their eye, a conversation.  Let this be part of a continuing conversation.  Good conversation.  Keep it going beyond us in the T1D community.  Thanks.

2 Items of Importance – I Don’t Mess Around

I, along with 4 other people affected by T1D from the JDRF NYC chapter, met with representatives from Senator Chuck Schumer’s office 2 weeks ago (yes I did almost autocorrect his name to “Chick Schumer” recently, caught it in time, and then laughed so had alone in an elevator that i partially slid down the wall).  We were there to discuss S. 2689 (Medicare coverage of Continuous Glucose Monitors).  I left hopeful and with finger’s crossed.

On Thursday night while in route to Artificial Pancreas stuff (Wow, yes, wow), I received an email that Senator Schumer will co-sponsor the bill.  We need this to happen folks.  Many people (and I’m sorry to say fellow T1Ds) don’t see how important this is.  Let me reiterate why this is important to support this and help fight, even if you are nowhere near 65 years old and think this doesn’t affect you.

1. If you support the Artificial Pancreas Program, a CGM is an integral part of this program.  Let me spell it out:  to Close he Loop, you need a CGM.  If Medicare does not support and cover CGMs, whatever the device is that becomes the Artificial Pancreas will have THAT much tougher of a time to get in OUR hands.  CGM coverage by Medicare is a hurdle we can knock out of the way to get us closer to the availability of the Artificial Pancreas.

2. Health insurance companies look to Medicare.  If Medicare does NOT cover CGMs, it makes CGMs “appear” unnecessary.  My CGM is a savior to me.  If yours a savior to you? A savior to someone you love?  A savior to someone you mildly like?  Then go HERE and support THIS.

Now here is the BIG part… TALK this up!  Post it on Twitter, FaceBook, Instagram and whatever other social Media things people use these days.  Reach out to people BEYOND the diabetes community!   REACH OUT.

Did you go to High School?  Reach out to your High school alumni.  Do you have siblings?  Get them to sign.  Friend of friends?  Yeah, grab them too.  This doesn’t cost money.  it just takes a few minutes.

GO!

Next up… Artificial Pancreas stuff.  The photo is pretty ridiculous (why are we in a magnifying glass?  Well it’s appropriate that I’m laughing, no?) but here’s the skinny from Brian and me over at JDRF’s Type One Nation.

Thanks for reading.  Spread the word.

 

 

 

 

Ready…

A few items of note:

1. Health insurance stuff is taking up a tremendous amount of my time and is downright upsetting (re-applying to have an insulin pump? & No CGM coverage?).  After an exorbitant amount of BS, I finally am working with a health insurance broker.  After the 16th phone call and 14th email to my current insurance company asking about the durable medical equipment of the new plans, I was emailed a list of approved diabetes durable medical equipment suppliers.  I Googled every single one on the list.  They do not carry insulin pumps, pump supplies, Dexcoms or Dexcom supplies.  You know what they do carry under “diabetes supplies”?  Glucose meters, prosethetic legs, and impotence devices… ummmm WTF?).  So yeah, I went to a health insurance broker.  When she told me yesterday that this process would be easier if I either had a dependant or a spouse, I didn’t even want to kill her (shocking since under other circumstances, those words would sting like crazy).  By this, she meant that due to how my business is set up and living in the state and city that I do, having someone else to put on the plan would be a benefit for me and give me more options.  I’m running out of time to get this sorted out.  Health insurance being a constant stressor in my life is getting old.

I'm the Smurf in a weird outfit on the lower right corner

I’m the Smurf in a weird outfit on the lower right corner

2.  On the other side of insurance woes, is beauty.  True, all encompassing, can’t-get-enough, I-can-smell-it-in-my-sleep, beauty.  Beauty that is soothing, and seems magical.  I experienced this kind of beauty on Sunday when I hiked through Muir Woods in San Francisco.  Realizing you are just a speck, with a limited timeline and are only here for a blip is humbling and also beautiful.  You know what else is beautiful?  Hearing a rustling on a hillside and a few seconds later having a buck jump right into the trail a few feet away from your face (ok that was beautiful and heart-pounding-out-of-my-chest scary).  We are just so small.

 

muir heart

3.  I didn’t see this right away, but yes, a moss/Redwood trunk heart.  Also, the clover leaves are all hearts too.  I’d love to go back and take in all the smells again (but I’d wear warmer clothing and a hat).  It smelled like Autumn leaves, moss, wood, damp air and adventure (adventure smells awesome).

It's all sweatpants and leggings for me these days.  Totally sexy.

4.  I am blogging about my Artificial Pancreas experience at A Sweet Life (and some stuff for JDRF that I think comes out tomorrow).  I’m a little behind (a lot) and need to catch-up ASAP.  Tomorrow I go back on the clinical trial’s insulin pump.  Today I started both trial Dexcoms.  I currently look like this (well it’s freezing here so I am also wearing a HUGE sweater that looks like a tent).  It’s all sweatpants and leggings for me these days.  Cozy rules.  Totally sexy:

 

 

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

 

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?

Wordless Wednesday – Riders On The Storm

The story to go with this post is just outrageous, bizarre and absurd, but it’s Wordless (and way stressful) Wednesday.

I think maybe the smile is enough to convey my thoughts (and wet hair blown across face /stuck to my cheek apparently).

20 miles.

Adventure.

Check!

Also, Dexcom in shirt.  Can I be like Sponge Bob Square Pants, but instead Square Boob?

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In The Business

WARNING: THIS POST CONTAINED AN INCREDIBLY GRAPHIC IMAGE.  I MADE A DECISION TO SHOW BETTER JUDGEMENT AND REMOVED IT, HOWEVER IF YOU HAVE A WEAK STOMACH OR ARE EATING, I SUGGEST YOU READ ANY OTHER POST FROM MANY OF THE WONDERFUL DIABETES BLOGS LISTED ON THE SIDE OF THIS PAGE.

Saturday morning, some errands and cleaning.  I was in my kitchenette, took a step, felt a sharp stab to my heel and pulled my foot up like a flamingo.  My mind immediately flashed to the wine glass I dropped 2 weeks ago and I knew my clean-up had been less than perfect.  I hopped across the room, grabbed tweezers and magnifiers (yep, jewelry supply), bent myself like a contortionist (yay flexibility) and found the offending piece, sliver, of glass.  It was still partially sticking out of my heel.  I was careful as can be, got the glass out (hurrah), cleaned the spot with hydrogen peroxide, made sure it bled a bit and kept it covered and clean.  Whew.

Saturday night I had dinner plans and as I walked, it felt a little tender but then, on certain steps, I’d wince because it felt stabby.  My favorite Mexican corn, tacos and margaritas and some walking/exploring/adventure.  I wasn’t limping but I was aware that something hurt.  Home, more peroxide.

Sunday was the Pride parade.  My sister had never been.  We had a fantastic day.  I wore flip flop leather sandals and stayed out all day (according to Fitbit I walked 7.29 miles).  My foot felt a little stabby still.  The stab spot didn’t look red and was the tiniest of wounds.  We met up with another friend.  I sat on a bench and when I got up, I felt something pull on my leg.  Yep, the arm of the bench hit on JUST the right angle that it pulled the Dexcom right out of my thigh.  Eek.  I was then the lady who reached up her dress and pulled out a Dexcom site and transmitter.  I am robot, hear me roar.

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Long, beautiful day, such a great parade.  Love in the air, happiness in the city, catching-up with my sister, bonding with her T1D friend.  A memorable day!  Returned home, cleaned-up and placed a new Dexcom sensor on my thigh.  The familiar pinch/stab of the Dexcom insertion.  It wasn’t more or less pain.  Went to place the brain (transmitter) in the sensor.  WHAT IS THAT??? BLOOD!  BLOOD!  BLOOD!  Dark, thick blood.  What to do?  Get the damn transmitter in that sensor!  Little Dutch boy with his finger in the dike.  Get the transmitter in!  I’ve never made that happen so fast.  Whew?  Nope, blood coming out from AROUND sensor.  Blood drops on carpet and floor.  The carpet AGAIN?  Really?  The carpet.  Yep, blood.  Started sensor.  Got misty.  Kinda miss wearing sensor in my arm.  Dog starts licking blood on floor.  Always disturbing.

IMG_3713

Sensor started.  Time to clean foot.  More tender but the wound was practically invisible.  Peroxide did nothing.  Pinched area around where glass penetration/assault happened.  There must be another piece in there!  Enough pressure and it bled a bit.  Sunday Bloody Sunday.  U2 singing in my head.  I’m oh so entertaining to myself.  Kept looking (with magnifiers and body bent like a contortionist).  So, so, so careful.  Was absolutely convinced a little shard of glass was going to pop up and out.  Nope.  Cleaned-up.  Bloody leg Dexcom looked kinda ok and wasn’t hurting.

Calibrate Dexcom.  Bed.  Dexcom goes bananas overnight.  ??? Oh how I hate that ???.  People have Dexcom bleeders that work fine.  Do they have Dexcom geysers though?

Wake up through the night.  Heel hurts.  Dexcom is completely wacky.  4am and I’m wide awake.

Monday morning I begged the podiatrist to see me.  Got referral and was on my way.  I’ve written about Dr. podiatrist before.  50+ years T1D.

Let me repeat that. My doctor is 50+ year T1D.

IMG_3717

I can’t get enough of him.

I quickly changed my mind about our bonding time when he explained the game plan for treating my foot.  No way to know if there was still glass in my foot (lead is no longer in drinking glasses so wouldn’t show up on Xray).  He was going to scrape the wound.  Sure, I’m down with pain.  “We” would know if there was glass because he’d feel it and hear it.  Ummmmm, hear it? “uhhhhh Hi, I’m glass, sorry I got stuck here in your foot.  Thanks for taking me to the parade.  Your sister really loves you.”  Ugh.  So scraping started.  I kept pulling my foot back.  He changed my position.  I agreed completely.  Yes, I AM staying 100% still.  No, I was flinching.  In my mind I was still.  THEN it hurt!  HOLY HELL!!!  What was he doing to my foot??? I’ll keep the glass!!!  Please keep the glass in my foot!   Dr. podiatrist reclined me practically upside down.  Nope, just a an upside down squirmer.

New plan.  Dr Podiatrist explained this would feel worse but temporarily.  Errrrrr, ok.  Numb the foot.  Yay!  Numb my foot!  Numbing will feel like fire.  Fire you say?  No, your foot will feel like it is burning inside, in the nerves.  I gave a soliliquy on my toughness.  We laughed and practiced sarcastic barbs.  Cold spray on foot?  Cold but doable.  Injection.  ACCCCKKKKKKKKKKK!!!!

More scraping.  I saw blood all over his gloves.  I decided to look away.  I talked about inhalable insulin and the artificial pancreas project.  I blabbed about ONE walk and agreeing to a JDRF bike ride even though I don’t have a bike nor a way to get to the ride.

And then the noise!  A metal blade sliding along glass.  GOT IT!  YAY!  Clean-up time and wound dressing.  No ocean, pool, lake, pond or puddles for 10 days.  Use all this tape and gauze and stuff.  Neosporin.  10 days to heal.  UGH!  No puddles?  Wear real shoes.  Ummmmm real shoes?

My doctor walked me out and we kept discussing the AP study in NYC.  We talked a mile a minute.  We talked about how no matter what you do, that balance…. the balance we all dream of, is just up to so many factors.  We started listing the factors at each other and laughing.  Food.  Sleep.  STRESS (stress got 2 votes).  Exercise.  Travel.  Weather!  Exercising in changing weather conditions.  Living Life.  I said carb counting.  He said he doesn’t count carbs.  I said he must eat the same foods all the time.  He claimed no but he started listing meals and they sounded the same to me.

It was a fun conversation yet so poignant at the same time.  He reiterated what I had said when I first came in.  It looked like a nothing, little spot but it hurt, and hurting is good.  Yes, hurting IS good.  FEELING is good.  It hurt, I felt it, I came in, and a minuscule piece of glass came out.  I asked again about my feet. I never completely believe him, but I always ask about the condition of my feet.  He tells me the same thing.  He doesn’t worry about MY feet.  There are certain feet that have problems.  I don’t have those feet.

He wears shoes in his home.  I have 2 planks on my wood floor that are chipped.  I need to wear shoes at home too.  Maybe flip flops.  But I never thought about it.  I’m careful outside.  Time to be a bit more careful inside.  Indoor shoes.  Count me in.

I didn’t want to leave.  My foot was numb and felt FAN-FRIGGIN-TASTIC!  I wanted to stay there all day.  I wanted to keep talking about finding inspiration.  I promised to update him on any AP news.  This would be a nice end to the story.

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I walked out and took a pic of my bandaged foot.  I returned to my office and everyone freaked-out.  I had bled through all the dressing.  I was bleeding up the tape.  UP?  Yep.  An office mate insisted on putting huge bandaids on top of the gauze.  I looked like the Frankenstein of foot injuries.  I poo-pooed everyone until I saw all the blood that had soaked into my shoe.  I called Dr. Podiatrist.  I told him about the blood (this is where I removed the pic in this post).  He said its ok.  He said, in the business, “blood is good”.  I laughed and explained how we DEFINITELY do not say that in MY business, ever. IMG_3724

So Blood is Good.  Strong pulse in my feet and extremities.  Strong blood flow.  My blood glucose levels were outrageously high the rest of the day after the glass/scraping (so gross).  Good glucose levels are key in healing.  No stress there with super high BGs the rest of the day.  Blood flow promotes healing.

IMG_3701

And as for the Dexcom,  It’s still in.  Looking at the foot is enough Halloween Blood Manor madness for right now.  I just took this pic.  That’s not a shadow on the side, its a blood tie-dye.  I’m going with the Dr. on this one.  Blood is good and with that, I continue to learn.

IMG_3761

 

Be good. ONE Walk

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