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?

IMG_4713

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.

IMG_4198

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?

IMG_4216

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

 

 

Advocacy With A Rhyme

A few weeks ago I was asked to do a Q&A with 2nd year medical students at (it rhymes with) Mt. My-Oh-My (medical hospital and school). Yesterday was the day.  I was given very little information other than this was part of the teaching program and my doctor needed info about my T1D diagnosis (June 19, 1979).  I was also told to be prepared that the students may ask some “weird” questions.  Weird you say?  Hell to the yes, count me in!

I ended up being 10 minutes late  to the meeting spot with my doctor.  I full-on ran from the subway to the hospital (I despise being late).  Taking the subway during the conclusion of the St. Patrick’s Day parade was a lesson in madness.  Out of breath, my doctor also a bit frazzled, I was led into the auditorium.  My guess is there were about 300 students. There was another doctor presenting an older woman (dare I say elderly?).  I had missed much of her presentation but as I made it to my seat, I caught that she is a fellow T1D and her doctor was giving different facts about her and asking the students what tests should or should have been performed under specific circumstances.  After sprinting to the hospital and my heart pounding in my ears, I found it a bit jarring that Cutie Oldie T1D was asked to go into detail about when she had a UTI while on vacation a few years ago.  Holy Shirt, things got graphic FAST.  Cutie Oldie T1D spoke about getting a stent in her kidney for 3 weeks and how much it hurt to pee…. (get ready to gag or skip the next few words)… and she was peeing…puss.  BLECH.  Why did I agree to this AND what the hell was MY doctor about to say about ME?!?!?  I frantically searched my brain for gross medical stuff I might have to talk about… oh this was NOT good.

My turn.  I sat in a desk chair in front of the 300 students.  My doctor struggled to find her PowerPoint presentation.  I hooked up the mic to my sweater dress.  No turning back now.  A sea of students.  I was the last part of the presentation.  Lots of yawning faces staring at me.

I looked back at the screen.  There was the paragraph I’d written about my diagnosis.  My symptoms, local hospital where I went for blood test, my pediatrician telling my parents to take me to “the best” and sending me to Hahnemann hospital in Philadelphia.  My doctor got into some specifics about the diagnosis that were not part of my story but relatively universal in many diagnosis stories.  Then, “Does anyone have any questions?”.  Ummmm that’s it?  2 questions about my diagnosis.  Yeah, I was 6.  I explained I’m about to turn 41 and I am too old to remember all the specifics but I was able to tell them some of my memories and then I was off and running.

I’m a talker.  I had the floor (well chair).  I started answering stuff no one was asking.  My doctor threw in some questions and explained things like Regular insulin and NPH.  Before I took my seat, I had heard the doctor who was running this program tell my doctor to take her time presenting because we were ahead of schedule.  Too bad you let me hear that lady, because I will fill up this whole time slot…. and boy did I.

My doctor showed an image of some of the insulin pumps on the market.  I pointed out the one I have and then it happened.  My doctor asked if I would be comfortable showing the students my insulin pump.  Ummmm. I said how I probably should have worn something different.  My doctor then noticed why I said that.  I was in black boots, black tights and a grey/green sweater dress.  Pump squished to my thigh IN my tights.  She said something about how she should have mentioned that to me earlier and I thought,  “To hell with this”.  I stood-up, turned to the side and saw a woman shaking her head “No”.   Too late.  As the words came out of my mouth I just couldn’t stop them…

“You guys ready for this presentation to get REAL racy?” and there I was with my sweater dress hiked up on my left hip while I traced the outline of my Dexcom on my thigh and my pump right next it.  I showed how I could move my pump around because my tights were holding it in place but that the Dexcom was fixed in place.  I talked and talked, looking damn flashy but knowing, this was a true chance to educate and I had EVERYONE’s attention.

I told them about how much I’d agonized for 3 years about getting a pump.  How, like so many other T1D’s, I wish I’d done it a lot sooner but that my advice to them, if they ended up in endocrinology, was not to force a pump on anyone.  Plant the seed, water it, show it some sun and then see what happens.  I needed to want a pump on my own.  I had to deal with my own issues of being attached to something, and my own issues of self consciousness, and meeting other people using technologies (especially Dexcom).  On and on I went.  I told them about how important it is for me, the patient, to work with my doctors like a team.

My doctor told them about the benefits of insulin pumps and different types of boluses. How a square wave bolus works and and I explained to them my enemy… pizza.

And then the questions… Someone asked about the psychological impact of wearing a pump.  Alleluia!  So I explained how I’ve had a pump for 14 years and how amazed and hopeful I am when I deal with kids, many times they are not diabetic and how they will tell me there is a kid on their (insert sport) team who has a pump too.  He/she is diabetic.  That’s it.  They NEVER, EVER see it as a big deal.  That it’s the parents of that kid who are more likely to see it as a big deal…. so-and-so’s kid is diabetic and HAS TO BE ON A PUMP.  I told them my belief that these generations beneath me, live in a different, much more open minded world and they (the doctors) can help foster that.

I told them how it is hard dating and being in relationships.  I can control how I present information and why I have an insulin pump but I have zero control over someone’s reaction to it and that can be hurtful no matter what age you are.  How I have no control over the internet and when you Google diabetes it isn’t a pretty picture.  How I look like the picture of health most of the time.  I am in the best shape of my life right now, but people think my being diabetic could/will mean I will go blind, have all my limbs amputated and will die when my body can no longer handle dialysis.

More questions and more screens of the Dexcom.  I explained how the Dexcom is a Godsend for me.  That I live with a dog who is useless in giving me glucagon or getting me carbs.  That I don’t always feel myself go low in my sleep and sometimes I manage to sleep through the Dexcom and how I feel “lucky” when ‘i see the graph the next day.  I poured it all out and how freaking scary being alone and treating a low can be.  My doctor explained the Dexcom arrows and I gave them my real world reactions to those arrows and how they are my very personal warning system.

I told them how I hate admitting it, but that I worry every single day about what this disease is doing to my body.  I workout like crazy because it makes me feel good, it reduces stress, and it is keeping my heart and circulation going BUT it is a battle to keep glucose levels in my target range with exercise.  I told them how frustrating this can be and how quickly the workout “high” fades when battling a dropping or rising blood glucose level.  I explained that there is a ton of trial, error, doctorly pointers and glucose tabs that dissolve in the wash in my gym pant pockets.

I ran out of time.  There was applause.  My voice felt scratchy.   Student thanked me as I walked from the stage.  Before I left I thanked them for listening and to please become GOOD doctors.  I was smirking.  I couldn’t hide it.  I took that presentation in a different direction and I flooded them with stories and information.  I shared my passion.

My doctor walked me out and informed me that 3 people in the class are T1Ds and another 2 students have siblings who are T1Ds.  She thanked me for getting a discussion started.  I’m not sure about the discussion part (it was the end of the day on St Patrick’s Day) but I did feel like I did my thing.

Advocacy.  Go.

For Today

“It’s impossible said pride.

It’s risky said experience.

It’s pointless said reason.

Give it a try whispered the heart.”

-Author Unknown

So lovely.

And here are some more Found Hearts.

Flying to LOVE field?

Flying to LOVE field?

Now back to being an undercover Wonder Woman (well, except my Rope of Truth is really pump tubing).

 

 

Wordless Wednesday… But…. errrr Butt.

This is NOT the face of diabetes, but rather the butt.

The butt on the beach.

The butt under an umbrella.

diaface

 

 

 

 

 

 

 

 

The butt (and the rest of me) being VERY fortunate on a spur of the moment weekend getaway.

There is also a thigh of diabetes with a Dexcom G4 sensor on it.

The sensor had 3 heart rhinestone stickers to jazz it up.

The thigh of diabetes was too busy getting some sun to pose for pics.

 

Don’t Fall For Pretty

If you are going to bed, and see this:

 

Note the time.  Started treating 5 minutes before this photo.

Note the time.  Started treating 5 minutes before this photo.

DO NOT TREAT WITH THIS:

g2

 

Why?

Because apparently my NEW emergency juice is low calorie which means = LOW CARBOHYDRATE.

And then THIS will happen:

NOTE the time.

NOTE the time.

At almost 11:35 pm, after BGs hovering between 49 and 54 for a FULL 30 minutes and feeling my heart racing, tears welling in my eyes over and over as my brain short circuited, (but oddly not sweating), panic creeping further and further into my body, I looked at the Gatorade label.  5 grams of carb per serving.  Like drinking air.

Who knew Gatorade made such a low carb drink?  As a non-Gatorade drinker, I picked the WRONG emergency juice to have at home, but the purple had looked so pretty.

Learn from my mistakes people.

 

 

Love Spies

As a New Yorker, as an American and simply just as a human being, 9/11 is wrought with emotion, deep sadness and many memories.  I have stories I could tell, my fellow Alecia’s Stem Cells teammates have many, many stories too, some of survival, some of hope and kindness, but quite a few of unbelievable horror and grief.

I can’t possibly do justice to any of these stories today and planned to post some Wordless Wednesday photos I’ve taken over the years of the Twin Towers, the blue lights that symbolized the towers from past 9/11 memorials, construction photos of One World Trade Center, and the 9/11 memorial pools.

911 pools

 

If you follow me on Twitter or Instagram (especially Instagram), you know over the course of the summer, I became keenly aware of “hearts” in my world.  On the sidewalk, in graffiti, a crumpled piece of paper in the street, gum on the curb.  Frequently, I see a “heart” somewhere.  Depending on what’s going on in my world, they symbolize different things to me.  I usually see them when I’m alone and they always make me think (or change my thinking), and usually stop me in my tracks (well I’m not taking action photos, so I do actually need to stop).  I try to change my walk routes now, in the hopes of finding an undiscovered heart.  Often these hearts give me hope.

love 3

This morning I passed 2 familiar hearts on my way to work.  Hearts I now see all the time.  I was secretly hoping I would see a NEW heart today but it didn’t happen.  The 9/11 TV coverage I’d watched as I walked out the door weighed heavy on my heart.  I thought of the friend I was with on 9/11, who has since passed away, and how very much I miss him.

At the office, my BG skyrocketed, work stress elevated (like crazy yo), I very politely but firmly argued with a medical supplier and I glanced out my window.  I have pigeons that land on my windowsill often.  I call them Pigeon Spies.  I claim they are stealing my designs and that they are annoying, but secretly, I love them (even though they occasionally give me a heart attack when they tap the window as they land).  They taunt my dog and fall asleep inches from him.  They are bold, brave and curious.  Those pigeons are New Yorkers.

Every once in awhile, two pigeons will be on the sill at the same time.  One is always going after the other and there are never two on the sill for more than a few seconds.  Today, I watched something new.  Two pigeons.  One much bigger than the other one.  They stood together, side by side.  They watched me for awhile and mirrored my movements (yep, spies) and then they turned and sat down, touching, looking out on a corner of New York City.  The smaller one leaned over and the big one got down a little lower.  There’s a term for this, allogrooming, meaning grooming performed by one animal upon another animal of the same species.  Perhaps we all see what we want to see, but the smaller pigeon spent so much time fixing the other pigeon’s head feathers, it was remarkable.  I was less than 6 inches away, they would look at me, but they didn’t leave.  There was something tender about it.  I felt exactly like when I see hearts.  It felt like love.

pigeon love

So today, just remember to love.  On some level, we are all in this together.  Whether it’s helping someone in the DOC, or reaching out to a friend or a family member.  Just remember to love.

Thanks for bringing me some magic today, Pigeon Spies.  Tomorrow you can go back to taunting and stealing.

 

Are you feeling blue?

#BlueFridays !

My buddy Stephen over at Happy-Medium referenced my blue boots this morning in a post explaining Blue Fridays.  Check out his post to learn more about why we participate in Blue Fridays.

Oh and here’s my contribution (yes, my pants are neon blue, don’t judge me.  It’s OK to dress like Charo).  So happy Friday and cuchi-cuchi.

Neon anyone?

Neon anyone?

 

Diabetes Thoughts and Notes

  • I love this idea from Chris over at A Consequence of Hypoglycemia Seriously, how could you not like this idea? #DBlogCheck ! Do this. It’s a great Do Good, Feel Good to start off the week!

2Dexcom

  • I am back in business (see previous post). My broken slidy door Dexcom needs to be sent back ASAP, but for the weekend, I was monitored by 2 glorious blue G4s. It was perfect timing for #BlueFridays (and some pretty nice pre-lunch BGs from Friday too).
Training starts when?

Training starts when?

  • JDRF is involved in the Disney Marathon (and 1/2 marathon, 5K and 10K). It’s actually called the Disney Princess Marathon. I’m not going to hide it. This intrigues me (heck, I’ve already got the ears right? A friend recently got them for me and my name is even embroidered on the back. Oo-la-la). I would have to get rid of the shooting pain that keeps happening in my left knee when I run. I’d also need to actually train. Going to Disney World to run a 5K would be funny. Going to Disney World to run a 5K AND raise money for JDRF? Sounds kind of awesome (and still funny).
  • I’m a big fan of Katy’s over BigFoot Child Have Diabetes. As someone who did not go to the FFL conference, I enjoyed her recap of all the events and activities (she also cracks me up).
  • Am I the only one who thinks this looks like some sort of vampire call signal? I watch too much True Blood I guess.Vampire Call Signal
  • Are you going to be in NYC on Sunday, September 29th? Want a GORGEOUS view of NYC from the Brooklyn Bridge? How about getting a little exercise? Come join Alecia’s Stem Cells! Our goal is simple, to assist JDRF in it’s mission: to find a CURE for diabetes and its complications through the support of RESEARCH! If you’d like more information on ASC, we’re on Facebook too.
  • Also, if your looking for some in real life D bonding, JDRF NYC hosts a New York Metro Region group for adults living with or new to type 1 diabetes (T1D). The meetings are monthly at the NYC office “to greet and chat with one another in a safe and supportive environment”. Last week we had fun presentations from John at ShugaTrak and Caitlin at TypeTanks and then some of us went out afterward. If you’d like more info, please check-out the JDRF Metro NYC T1D Adult Group page.
  • And finally I am off to my diabetes eye specialist. I was supposed to go in May. Life got in the way of my remembering to make that appointment. My doctor’s office treats a D celebrity. My doctor has done amazing things for my peepers. I have tons of reasons not to be scared. I’m scared.

20130722-082953.jpg