Flying on a Trapeze

The photo at the top of the Surfacefine page is from New Year’s Eve a few years ago. It’s up there for a few reasons…  1. It’s a terrific photo of my pump.  2. It embraces the whole “diabetes doesn’t stop me/ slow me down” mantra (however my eyes are closed because I was petrified). 3.  Writing a blog took me far out of my comfort zone (what really is a comfort zone anyway?) just like swinging from a trapeze did.  Blogging about diabetes has left me far less bruised than the trapeze, but being diabetic comes with a hell-of a lot of bruises… both physical and mental.

I could go on and on about how a new year doesn’t carry much weight with me  (thanks Renza for listening to my theory this week) but I’d like to keep this post a bit more, well positive.

In May of 2013 I started noticing hearts. Specifically I noticed a graffiti pink heat with an arrow through it drawn on a mailbox right outside the building where I live. I would find myself taking a deep breath like I was in a yoga class whenever I ‘discovered’ a heart. Gradually I started noticing hearts everywhere and occasionally posting them online. Now, a year and a half later, finding hearts has the same effect on me. Stop (Hammer time) and take a big, deep breath. People send me heart photos now. They ALWAYS make me smile. Many of the hearts I see are instantly uploaded to a Tumbler page,

Found : Hearts ( http://www.spacegirlw.tumblr.com ) Here are the archives:

I want to capture that moment, that deep breath, those feelings. When people ask me “what’s the deal with you and the hearts?”  I usually tell them about taking a deep breath and stopping everything for a moment. Those hearts have far more meaning to me than viewers know, but there’s a sweet moment when I sometimes realize something that means so much to me, something that feels magical even, I can share with  just a photo.

Breathe.image

Listen to your heart (hey my pancreas doesn’t work so I gotta pick another organ anyway right?)

Xo

 

 

Down Time?

Over at Moments of Wonderful, there is the annual Best of The Betes Blogs.  There are A LOT of blog posts that have won monthly Best of The Betes Blogs awards throughout the year and it’s fantastic to see them all easily consolidated in one place.  I’m hoping to do some catch-up reading this week in a few areas (read: too much to do, too little time) and if you didn’t know or forgot that Sara puts this together (which looks like a heck-of-a-lot of work) I urge you to both vote, and bookmark the page.

I find it incredible humbling and just flat out weird to see my own posts in the mix as I think there are FAR better writers within my T1D peer group and people with better stories to tell (although I still do like my Captain and Tenille post and sometimes rereading your own thoughts, months later, can change your perspective), but I’m definitely honored (and have much reading to do).

Art Installation near Madison Square Park and The Flatiron Building in NYC.  It's illuminated at night but those photos didn't turn out as well.  The reflections and changes in view while you walk around this sculpture are so interesting.  All about change in perspective.

Art Installation near Madison Square Park and The Flatiron Building in NYC. It’s illuminated at night but those photos didn’t turn out as well. The reflections and changes in view while you walk around this sculpture are so interesting. All about change in perspective.

 

 

Oops! Super Strength Mishap

I posted the wrong link before (previous post).  My new super strength may be draining brain activity.  What a trade-off.  Sheesh.  Here’s the link about my post- Artificial Pancreas Low (literally and figuratively).  I’m going to take some vitamins now.  Anyway here’s the story:

A Sweet Life.  I Tried The Artificial Pancreas and I Want It Back .

 

“There are always flowers for those who want to see them.”

– Henri Matisse (1869-1954) Printmaker, Sculptor, Painter

Man Vs Wild

A few quick items:

1. Health Insurance “stuff” (I typed 4 other non-PG words in that spot but I’m trying to be a lady… for a day or two) continues to drag on.  I saw my Primary care physician last week for 2 reasons, I banged up my thumb AND to say good-bye.  She is not a participating provider on the *new* plan with another company and I am still unconfirmed to be on said plan, starting January 1st.  I also won’t be seeing my podiatrist anymore.  I have written about him before.  50+ T1D, fun doctor, and the guy who put me back together better than Humpty Dumpty when I broke my foot years ago.  Both of these doctors I consider a big loss in my wellness protocol.  Who knows, maybe these insurance laws and plans will evolve again in a year?  Never say never right?  Oy.  I will continue to see my endo because she doesn’t even take insurance.  Yep.  And my key doctor, my diabetes eye specialist does take the new plan.  From what I can tell, I can stay on my insulin pump and Dexcom G4 and I just spoke to Animas this morning to finalize paperwork for my Ping to Animas Vibe trade-off.  Adventure!!! Well, more like… adventure.  Not so much exclamation pointing but I think there’s going to be trial and error and some frustration and some sort of snarky, yet witty, angry blog post from me, so there’s always that.

2.  I got a very short haircut and I may have developed super strength.  This makes me the polar opposite of Samson.  I need to keep testing this out but I will let you know.

3.  I am still blogging about Artificial Pancreas stuff and my latest blog post (which further supports my dislike for the number 41) can be found at A Sweet Life .  I believe this technology is SUPER important.  If you agree with me, please keep the momentum going and SPREAD THE WORD!

4.  Man vs Wild…. OR…. Dog vs. Pancreas? (Dog is missing 7 teeth so fight is not quite as lopsided as it may appear)

dogvspancreas

 

 

 

 

 

 

 

 

5.  I asked Moira a while ago if I could link to her post about Brett Michaels.  Brett was diagnosed with T1D at 6 years old.  I was diagnosed at 6 years old.  Brett is from Pennsylvania and so am I.  Brett plays Glam rock.  I LOVE Glam Rock!  Brett was on a horrendous reality TV dating show.  I WATCHED (and loved) that horrendous reality TV dating show.  But here’s the BIG difference (no, not the wig and bandana b/c I love a good costume and no one rocks a Pocahontas wig like I do) but Brett has had T1D 10 years more than I have (yes, I was also shocked he’s 51 years old).  So here is Moira’s post: On Brett Michaels and His Latest Diabetes-Related Setback: The Good News Behind His Brave Fight .  I think Moira is spot on with this post, but I am keenly aware that I am closer to Brett’s duration with T1D than Lauren’s (Moira’s daughter) and that’s a tough pill to swallow.

6. Always remember to switch back the time on your pump and Dexcom when you travel across time zones.  Simple advice I seem unable to remember myself!

 

 

 

 

Ruining Your Life

Was up early today, drinking coffee in bed, bracing for a cold, wet day (I dropped/spilled buttery brussel sprouts on my winter coat and forgot to pick it up from the dry cleaner yesterday.  Damn) and saw this in my newsfeed.  I read it once and thought it was interesting and then a second time as the inner Jimney Cricket in my mind seemed to want a re-read (and a second cup of coffee).  I think this is worth a share.

How to Ruin Your Life Without Even Noticing That You Are 

IMG_8696 - Version 2

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.

The First Time

I have another post over at A Sweet Life today.  I wish I’d done a better job editing but it was a bit (totally and completely) rushed.  I am still in the Artificial Pancreas clinical trial and there continues to be lots more information to share.  The more people who know about this program, the better.  The more people willing to participate, the better.  And the more people who get involved in fundraising for crucial research, the better.  My experience is proof of a JDRF grant at work and testament to the incredible and honorable dedication of teams at both Mt. Sinai New York City and the University of Virginia.

2 other things:

1.  This is my DiAs screen from last night.  The loop is CLOSED in this photo and I am supposed to be asleep (and a cool view of the Empire State Building):

1441587_10203863463560998_7523724626892269245_n

 

2.  I was briefly reunited with my dog today.  He smells less than superb and I don’t care:

IMG_8513

 

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.