Launch

I have to make this short and sweet as I need to get my butt to the gym since this bike riding thing is legitimately happening on Saturday and I even have the bike shirt in my purse at the moment which seems odd (read: scary).

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Last night I was asked to speak about my “feelings on being involved” in the Artificial Pancreas Project at the Official launch of the APP clinical trials at Mt. Sinai hospital.  It was an amazing experience, listening to the presentation and success of the UVA APP trials.  I said this elsewhere on social media last night, but it bears repeating, I believe my experience last night was a pivotal life moment, where all I felt was inspired and determined.

And that could be the end of this post, but there was something much bigger going on for me.  The BEST part was that my Mom, one of my brothers and my sister were all there and shared the experience with me. Yeah, THAT was the best part.

#HOPE

What’s New (The Preview)

A few items:

1.  Recently someone told me how they find it easier to manage diabetes without working out.  Exercise makes their BGs bounce around.  I agree with the bouncing.  I get it.  Where I disagree though (and I can only speak for myself), is exercise makes your body and mind stronger.  Exercise keeps your blood pumping and I LOVE, love, LOVE that I have a strong pulse in my extremities.  Exercise is a good stress reliever (even if I stress about my blood glucose levels while I exercise).  And the most important part for me (currently), is there are days when I feel like I have zero control in oh so very many areas of my life (sometimes read: ALL AREAS).  Exercise is O N E area where I have some say… making the time, making exercise goals, achieving a goal.  My “mantra” (thanks Stacey for reminding me) is Do Good, Feel Good.  I think when it comes to exercise, this applies to one’s own body too:

Do Good For Yourself, Feel Good About Yourself.

Now when it comes to the BG bouncing, I get it.  Saturday is my JDRF Jamaica, Queens bike ride.  I believe I am getting a loaner bike.  Yep, 20 miles in an area I have never been on a loaner bike (I hope it’s not a beach cruiser… I’ve heard they are not ideal… ha).  Tonight I rode again at the gym.  I played around with the screen and ended up with some sort of video of a path in a Northern “pocket” of California (pocket was their video screen word, not mine).  The video kept changing.  It may have made me nauseous.  I believe the videos are for running because the path turned to sand on the beach right up against crashing waves.  Biking in the sand?  That “may” be out of my reach.  Then I became the smirking girl on the bike.  Could be worse.  I am far from riding in the woods on paths of roots and dirt as learned when I wanted to hit the breaks before the log going across a creek… yikes.

The photos below are what happens when you take pics from a moving vehicle…. oh, wait, I was on stationary bike.  You are viewing paths (and a log I had to dodge) and a Dexcom screen.  What you can barely see is the Dexcom down angle arrow and a BG of 128.

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I had reduced my basal by 40% for 30 minutes which started 10 minutes pre-workout.  I thought it was a HUGE success when I finally stopped dropping at 82 YAY!

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I made dinner, and after bolusing and eating, I started dropping again.  Bummer.  And then treating a low after I JUST had eaten was less than ideal, BUT every workout isn’t like this and hopefully Saturday will be a smoother ride.  Get it?  Ride?  Bikes?

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2.  I love seeing and hearing so much publicity around Miss Idaho.  Rock on Sierra and #showmeyourpump  Out of all the mainstream press I’ve seen though, this article from Bustle is my fave (EXCEPT the part that describes an insulin pump as “an aid that controls her diabetes”… oh how I wish that was true…. but more on THAT on THURSDAY).  Would “Helps” Control, make it better?

3.  I’ve gotten a lot of information about this whole putting your Dexcom on the Cloud stuff (cool pics ).  I haven’t looked much into it for 2 reasons: 1. Time is a little tight right now and 2. There is no one in my life who would want/need/be aided by seeing my Dexcom readings in real time.  I will say though, I can see how this is immensely helpful to parents of T1D kiddos and like Kerri said, her husband and Mom can check on her when she or they are away.  At some point, I will look into this further (although I suspect/expect this to be COMPLETELY over my head since I can’t even delete emails off an iPhone… they just keep coming back).  Having my Dexcom readings on my wrist or phone would be cool.  There is a fascinating Facebook group for this technology CGM in the Cloud . Cool right?

4.  I caught this earlier tonight (post bike ride lows).  Dating and Diabetes.  I have spent a solid year avoiding this topic.  I feel my stories could be discouraging and I want to encourage, not discourage… and then I feel incredibly torn on the entire topic, my feelings and my experiences.  Sigh.  Briley at InDpendence tackled it a bit tonight.  I truly applaud her bravery.

5.  I had a #5 item but for the life of me, I can’t remember what it was #OldAndTired

 

 

 

 

I Love You More

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.

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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!

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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

 

 

Curiosity?

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.

 

 

 

 

 

 

 

 

 

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.

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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.

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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.

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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.

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Wordless Wednesday – PROGRESS!!!

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.

 

Wimpiss Breath?

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

 

Houston we have a problem?

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Well it’s more like Dallas. After a bunch of shenanigans with my hotel, I received a new Dexcom sensor yesterday and was back in business. I woke up this morning a little after 4:30am to the dreaded ??? There is no panic and I’m not even upset but this is a reminder of why advocacy is so important. The continued push for the advancement of medical technologies couldn’t be more necessary (well in my opinion).

And for my quote of the week (although it’s been my go to for a bit longer):

Throw me to the wolves, and I’ll return the pack leader.