Tag Archives: diabetes

Stars Align in the Advocacy Sky

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Martin and I met early last week. We spent a day on Capitol Hill meeting with various representative offices as part of Diabetes Patient Advocacy Coalition DPAC, addressing issues/legislation pertaining to diabetes.

Between meetings, we talked about the clinical trial I’ve been in and devices I’m using.
Martin has lived with T1D for 66 years which is by all accounts, especially Senator Markey’s office, quite amazing, especially considering how crude treatments were when he was diagnosed.

In one of our meetings, Martin spoke about having been one of the clinical trial participants of laser treatments for diabetic retinopathy in the 1970s (‘74). I felt a lump in my throat.

I spent many years feeling ashamed of my own diabetes complications (I didn’t do a “good enough” job). I was just starting my career in design, a visual field, in the wonder of New York City. The diagnosis was terrifying. A brilliant doctor gave me 2 treatment options. I chose a new technique involving very aggressive laser therapy. Many rounds and a few years later, my eyes stabilized.

Now, I get to give research updates and motivational talks for JDRF and I am asked to speak at medical schools about T1D. In this roll, I show photos of the inside of my eye. I explain the laser scars and how my eyes compensate. I encourage (beg) people to get involved in clinical trials, and how I do them for ONE specific reason. I do them to pay-it-forward. I say how I will never get to meet the people who tested retinopathy laser treatments. Some of the first participants went blind immediately. I NEVER say what I was once told, that I would never meet these “testers” because they had died already.

On Tuesday, I learned my talks will have to change a bit. Not only did I meet one of the trial participants whose actions have given me the gift of sight, but I finally got to say, “thank you”. I tried to explain this to New Friend Martin, but I couldn’t get the words out, so outside a Senator’s office, we stood there hugging and crying.

On World Diabetes Day and everyday, Martin, I thank you, again and again, I thank you. 

Bonding outside Elizabeth Warren’s office. Martin was the true star of my day.

40th Birthday Party

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40 years ago, my parents were told to take me to the ER and get my blood taken. I was 6 yrs old. It took 2 nurses and a questionable doctor 3 tries to get a vein. They held me down, I cried. My Dad took me to McDonalds for pancakes (with syrup, ugh) afterwards. 

That afternoon, my parents were on the phone, my Dad walked out the front door and sat on a rock (yes we had a rock garden, weird) and for the first time ever, I saw my Dad put his head in his hands and cry. The next day, with my little suitcase and teddy bear, my parents took me to Hannehman Hospital in Philadelphia. I learned the word “diabetes” and that I would have to take shots. In my 6 year old brain I thought the shots were like the blood draw the previous day and doctors would hold me down. For two weeks, I went to arts and crafts, practiced giving injections to an orange and slept in a room full of children with various ailments. I remember the boy in the bed next to me, Raul, who had a heart condition. His Mom cried a lot. There was a girl across from me who had been severely burned in an accident. The thing that scared me the most though, was that I wouldn’t get to go to school. I was very eager to start 1st grade but now, something was wrong with me, I was sick and I thought I was going to be sent away. 

My parents and relatives visited me everyday. At night, my parents would call on the pay phone to say goodnight. My Dad would tell me I needed to be brave for the other kids. I would try not to cry, I would cover my face, begging my parents to please bring me home. 

Type 1 Diabetes treatments and research have elongated my life expectancy. Although there are a litany of items I hate about T1D, I believe some of the best parts of me are based on the idea that I live on borrowed time. 

Outliving peers who’ve been on the same path makes for some incredibly hard feelings. Testing technology that stands to improve people’s lives is awesome yet extremely troublesome when one looks at the lack of access so many of us face. Diabetes is a tricky disease with no easy cure… yet. 

I haven’t fooled myself into thinking riding a bike will cure T1D, but certainly funds raised from walking and riding has directly impacted the fact that I am here. The eyesight i need to ride is proof of the technological progress and amazing doctors, in my lifetime. 

I’m the co-coach of my JDRF ride team this year. You’d be hard pressed to find anyone (including me) who thinks I’m a “good” coach. I’m not the technical person. Not even close. I care most about safety and that people enjoy the ride (in that order, safety FIRST). And I as I begin what marks my diabetes’ 40th birthday, I plan to live (and celebrate) with just as much vigor, determination and wild ambition as I guess I’ve always had but it’s tempered these days with a growing sadness for the increasing number of people who aren’t here with me. 

My role in the diabetes space has evolved over time and I’ve worn a lot of hats, jerseys, and a hospital bracelet with my first name misspelled, but one thing has never changed, and that’s my belief that we can help make a difference. 

Thank you for cheering me, and all of those affected with T1D, onward. 

http://www2.jdrf.org/goto/Alecia

Blinded Me With Science

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IMG_9580Thomas Dolby wrote and sang a song called “She Blinded Me With Science” which was released in 1982.  I have always liked the song and am currently waiting at The Joslin Diabetes Center donating all sorts of parts of myself (a lot of blood in the photo above and DNA stuff) and having all sorts of tests for a clinical trial.  I am now waiting for the 2.5 hour eye exam (actually waiting for my eyes to dilate) and the Thomas Dolby’s hit is totally stuck in my head (ear worm) and making me smile like a lunatic banging away on my laptop.

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Little known facts about the song (Thanks Wikipedia):

The song features interjections from the British scientist and TV presenter Magnus Pyke who repeatedly shouts “Science!” (thanks Google).  Thomas Dolby wrote the song because he had an idea for a music video and needed a song to go along with it.  There are a lot of interesting parallels here today.

One of the first lasers to treat diabetic retinopathy

One of the first lasers to treat diabetic retinopathy

The lyrics:

It’s poetry in motion
She turned her tender eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in biology

When I’m dancing close to her
Blinding me with science – science
I can smell the chemicals
Science
Science

Mmm – but it’s poetry in motion
And when she turned her eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in geometry

When she’s dancing next to me
Blinding me with science – science
Science
I can hear machinery
‘Blinding me with science – science
Science

It’s poetry in motion
And now she’s making love to me
The spheres are in commotion
The elements in harmony
She blinded me with science
She blinded me with science
And hit me with technology

‘Good heavens Miss Sakamoto – you’re beautiful
I don’t believe it
There she goes again
She’s tidied up and I can’t find anything
All my tubes and wires
And careful notes
And antiquated notions

But – it’s poetry in motion
And when she turned her tender eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in geometry

She blinded me – with science
She blinded me with

For more information on clinical trials in the US I encourage you to visit www.clincaltrials.gov

Lab Mouse Center

Lab Mouse Center

Bye Phife – A Funky Diabetic

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“Now here’s a funky introduction of how nice I am.

Tell your mother, tell your father, send a telegram.

I’m like an energizer cause, you see, I last long.

My crew is never ever whack because we stand strong.”

 

Five years ago I attended a screening of Michael Rapaport’s documentary “Beats, Rhymes & Life: The Travels of A Tribe Called Quest”. Tribe had been one of my absolute favorite Hip Hop bands (still is).  I went to a TCQ show shortly after college when I moved to New York City.  Busta Rhymes made a guest appearance and I remember fondly how everyone went bananas-cuckoo-crazy when he jumped on stage.  It was at THAT very show where A Tribe Called Quest announced that they were breaking-up.  It was shocking.

Years later I learned Michael Rapaport (actor/director) was at the very same NYC show in 1998.  He was so fascinated by the break-up and was a super fan, that he decided to make a documentary or “rapumentary” about the group’s rise to fame and subsequent feuding and break-up.  I made it my mission to go to the opening screening of the movie at the Tribeca Film Festival.  I knew Phife Dawg (member of TCQ) was diabetic, person-with-diabetes, and had undergone a kidney transplant.  i was quite curious to see how he was doing.

What I didn’t know, and was surprised to find while viewing the movie, was the significant role diabetes played in the break-up and conflicts within the band.  Diagnosed in 1990, Phife made it clear in both the movie and in the Q&A with the audience, that he struggled with his diabetes diagnosis.  Phife had problems with hypoglycemia and hyperglycemia as the fame of the band grew.  He also addressed how fluctuations in glucose levels led to moodiness which also led to conflicts with his bandmates.  I sat in the theater next to my college roommate, as Phife spoke, we both cried.

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Can I kick it?

Yes you can!

This morning, I read that Phife passed away.  I just saw a release from his family that he passed from complications of diabetes.  One of my brothers contacted me about whether Phife was T1D or T2D.  Over the years, I have seen reports of both.  All I know, is when I hear of a loss of life from diabetes, I am flooded with feelings and then ideas. Today, I think of my many happy memories listening to and seeing a Tribe Called Quest while in college, when I was a brand new New Yorker, and at a film screening.  I think of the massive influence TCQ had on so many of today’s musicians.  I think of all the times I giggled listening to the incredibly creative lyrics of Tribe songs.

“When’s the last time you heard a funky diabetic?”

Mayor

Stripped?

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This morning I went to the gym before work. 40 minute+ workout. Cross training (ish). Weights, planks of torture, rowing, kettle sillies and some dancing around because that’s how I talk while exercising (apparently). Jump around! I stopped at Starbucks as I walked home. My local Starbucks remains under construction. I keep going there, forgetting the closed sign on the door. I started to walk down the steps and OUCH!  It felt like something stabbed me in the butt. Not my butt really, but the part under your butt where your thigh starts.  I took 2 more steps down. OUCH!  Was I being bitten ON the crease of my butt?  What?  Nope.  Kept walking feeling too embarrassed to grab my own butt. At a traffic light I pulled on the fabric of my spandex pant leg and jumped around, smiling, knowing the expression “Ants in Your Pants” was appropriate to my movements.  Somehow that fixed the problem.  Weird. I kept walking.  Took a step off the curb and OUCH.  The biting was back but slightly moved.  I jumped around wanting to stick my hand down the butt of my pants but keenly aware that I would absolutely run into someone I knew.  I kept pulling on my pants and swiped my hand over the spot expecting to feel a straight-pin sticking out.  Nope.  Nothing.  Stabbing feeling stopped.  Weird.

I thought this might have been on my butt since I had 2 of these in my feet a few days earlier. they are called Sandspurs. Logically.

I thought this might have been on my butt since I had 2 of these in my feet a few days earlier. They are called Sandspurs, logically.

As soon as I walked in my front door, I pulled off my pants (careful not to disturb the Dexcom sensor on my thigh and my insulin pump site on my hip).  Looked inside my pants.  Nada.  Looked at the outside of my pants.  Nada.  Looked at the floor.  Nope, nada.  I took a step towards the shower.  OUCH!  I felt my butt.  Look what I found.

bg test strip

They are everywhere, people.  Everywhere.  I walked around (and worked-out) at least an hour with a BG test strip in the crease of my butt/thigh.  Well played diabetes…better than being in my sock…. again.

Why am I sharing this story?  An opportunity to chat about my butt?  Not really (ish).  I believe sometimes we just have to laugh at the absurd things that happen because of diabetes.  At the end of the day, here are your cards, play the hand you were dealt (I couldn’t come up with anything like that involving butts.  I went down a path of Sir-Mix-A-Lot and then a thing about the Kardashians but that got too strange).  I stripped and found a strip?  Nah.

 

Duck, Duck, Goose?

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DUCK FIABETES.

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If you would like more information on Big Duck, check out Wikipedia.  If you would like more information on why I went crazy when I pedaled around a bend and saw Big Duck, click HERE.*

*Note: I went to architecture school and Big Duck was in my favorite class, Modern Architectural Design History.  When I say “in my class”, I mean it was a topic covered, not that Big Duck sat next to me and was in my study cram group.  The later would be 1000x better, however this still all seems special to me.

If you would like even more information on Robert Venturi’s use of the term, “Duck” in architecture (hey, learn something new), check This out.

Day total: 66 miles cycled.  Riding across Manhattan at 11pm in stinky bike gear (P.U.) and a “South Hampton” sweatshirt big enough to be a dress or a tent for 3 of me, pretty terrific too.

#DuckFiabetes

 

 

 

Worth.

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Sunday.  Back on Piñata Bike.  Across Manhattan. up the West Side, Over the George Washington Bridge to 9W.  Just me, Piñata and a ride coach.  For months, I have wanted to take photos on the George Washington Bridge while I pedal along.  Finally did it.  Don’t worry, I was wearing a parachute.

Silly Rabbits, there are no parachutes, one adventure at a time kiddos.

The phrase on this photo bugs me because of the grammar.  Ending a sentence with a preposition?  What the what?!?!  But, the saying is true to me, and applies to so many things.  Endless.

I didn’t have a great ride on Sunday.  I rode slower than I envisioned.  I struggled on a route I sort of already know.  It was a gorgeous early morning, and I wasn’t riding strong.  There was so much road kill on 9W.  A lot.  I kept running over very flattened, furry things.  Oh man.  Sometimes I tried to imagine I just ran over a very dirty Barbie fur coat.  I wasn’t feeling great.  Blood glucose ran pretty well and I was drinking my electrolytes.  As I lagged behind the coach, I looked up a hill and was stunned.  There was a deer.  A fawn.  In the shoulder of the road, right in the path.  I yelped to the coach (yelping is a sort of description of a really weird non yell noise that I made).  Cars sped by.  The fawn jumped into the brush and there were two baby deer.  The ride coach passed the deer.  I sped up, a little scared the deer would jump into the road and tackle me (another bizarre bike adventure? Please don’t tackle me deer).  As I got closer, all 3 just stared at me.  The fawn had large scars on her back.  She clearly didn’t have it easy.  For some reason I said in a low voice, “You guys need to move over.  Go.”  And I waved my arm.  They stayed put in the brush.  Apparently even deer don’t listen to me.  Oh, dear (errrr deer).

I didn’t ride as far as planned.  I was the reason we turned around early (I hate that).  I had a MUCH better ride back (wind on my back helped) and I got the coach to talk to me (I actually said “tell me a story”.  When I’m not feeling 100%, I find chatter an awesome distraction).  I ended up riding 46.5 miles.  Not great (for me) but acceptable.

Obstacle are placed in our way to see if WHAT we want, is worth fighting for.

I want to help cure diabetes.  I want to push new technologies forward.  I want to use my voice, my time, my life, my experience to make a difference in this diabetes game.  I’m gearing up with a new plan.  My goal didn’t end in Burlington.  Here’s where to help: RIGHT HERE , or you can physically push me along (I’m really not kidding)… I’ll let you know the route!

 

 

Diabetes Blog Week – Ride On

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It is Diabetes Blog Week.  Karen at Bitter Sweet Diabetes wrote (in 2012?), “If you don’t have a blog but have thought about starting one, now is the perfect time”, so I did (which was my first post).  For more information on Diabetes Blog Week please check this out. And thanks Karen for putting this all together.

Here’s today’s topic:

In the UK, there was a diabetes blog theme of “I can…”  that participants found wonderfully empowering.  So lets kick things off this year by looking at the positive side of our lives with diabetes.  What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could?  Or what have you done that you’ve been particularly proud of?  Or what good thing has diabetes brought into your life?  (Thank you to the anonymous person who submitted this topic suggestion.)

There are a few positive aspects of my life with diabetes… friends I’ve made and the incredible people I’ve met because of T1D would be at the top of the list, but currently, right this very second, I can only answer this by sharing a little more of my on-going JDRF Ride cycling progress.

I can cross “NEVER EVER wearing and entire outfit made of Spandex while walking through, and waiting in Penn Station” off my list of things I would never ever do.  Yep, nailed that one.

I have also learned you need a Bike Permit to take a bike on the Long Island Rail Road (life is full of surprises).  The permit is $5 and doesn’t expire.  It looks like a train ticket.  I’m sure I’ll never lose that one.  Yep.  Lost.

Long Island is shockingly hilly.  An early morning in those hills is far chillier than one would expect.  Getting lost is not the fun adventure you would like to believe it will be.

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Beautiful home, streets lined with potholes, and Oyster Bay way down and in the background.

70% basal rate reduction worked pretty well but I should have started it a bit earlier. I had a GU because the Dexcom arrow was starting to drop, I stayed steady the rest of the ride.  Woot.

A week later, I learned the following: trying to cross the street during the 5 Boro NYC Ride (when you are NOT in the ride but ARE on your bike) is damn near impossible.

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Next, I learned that repeatedly bouncing off the railing of the “OMG-why-the-heck-is-this-SO-narrow” ramp up to the George Washington Bridge is similar to being a ball in a pinball machine.  It is quickly becoming my signature move.  Watch out people.  No really, watch-out.

Are you ready for the big part??… I rode 60 miles in one ride!!  Holy smokes!  The hills were challenging, I went through a LOT of water, and my bgs ran a smidge high until about the 30 mile mark, but I rode 60 MILES.  Nyack, New York is so beautiful.  Just amazing.  If someone told me that someday I would ride a bike from the lower half of Manhattan, up and over the George Washington Bridge, up through New Jersey, back over the New York state line, under the Tapanzee Bridge and up to Nyack, New York, I would have laughed so hard I would have peed my pants.  I might be the slowest and the sweatiest, but I did it.  I still need to improve my pacing (it is currently not so hot) and keep increasing my endurance (also still weak).  And in even stranger news, I happened to have a meeting right over the Tapanzee Bridge 4 days later and pointed out where I had been on my ride.  They asked where I started.  When I answered with, “My apartment”, no one could believe it (I include myself in “no one”).  It was SO far away!!!

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And here’s the deal.  I have thought about doing a JDRF Ride in the past.  After almost 2 years of the back and forth of getting into one of the Artificial Pancreas clinical trials, I publicly stated (at a conference) that I would do the Ride if I got into the trial.  I received the email that I was officially a candidate while still at the conference.  I was/am a chatterbox. I told everyone about being on the candidate list.  There was no way I was getting out of this Ride!

So here I am 2 and a half months from a 100 mile ride in Vermont (OMG x1000).  I think of the many T1D athletes who I admire.  My childhood hero, NHL great Bobby Clarke, Olympic swimmer Gary Hall, Jr, and professional snowboarder Sean Busby.  I admire them in a way I simply couldn’t imagine before now (and believe me, I already admired them tremendously).  I never thought someone with T1D couldn’t do a ridiculous amount of cycling, BUT I certainly didn’t think that I would ever be inspired enough to try (you read the part about all the Spandex right?).  And now, I am inspired… and I continue to try.

Tried to stop Fred Flinstone style but with my elbow instead of feet.

Tried to stop Fred Flinstone style but with my elbow instead of feet.

A Wednesday That’s Really A Tuesday and a Kardashian Booty

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This was going to be my Wordless Wednesday post but it’s D Blog Check day (thanks Chris) so I’m jumping ahead.  I learned to ski when I was 8 years old.  My college boyfriend got really into snowboarding and we ran around with a snowboarding crowd in the winters during my early 20s (I made a brief switch to snowboarding, broke my coccyx bone, and decided I would remain a skier).  In my early 30s, I skied inconsistently at best.  As far as I can tell, the last time I’d skied was 2008 and I broke my foot in 2009 (unrelated to skiing, tripping in high heels getting in a cab and rushing to the airport… and then wearing high heel platform boots for 2 days before I got an x-ray… woof).  Although I’d talked about skiing again, I haven’t made it happen until this winter.

For the rest of this story, you need to know the following… no matter what my weight, I have a butt.  You know that strange photo of Kim Kardashian where she is balancing a glass of champagne on her derriere?  You know, the photo that was supposed to break the internet?  If not, you may be too highbrow to be reading this blog (or you don’t have interwebs or live under a rock).  I’m fairly certain I could do that Kardashian maneuver AND also balance my pump, Dexcom receiver, my cellphone and a couple bottles of insulin simultaneously on my butt.  Yep, baby got back.

So, “back” to skiing and a big butt.  I have new ski pants this year that are snug in the waist.  Great.  They also swish a lot when I walk so I could never sneak attack anyone.  On Sunday I skied.  I clipped my pump to the back of my pants, with the pump itself on the inside of my waistband.  It seemed firm between Smartwool long undies and my new, loud swishing pants.  I skied my heart out.  I am shocked I got right back into skiing in the past month as though I’d never left and maybe, as I’m in better shape than I think I was 7 years ago, I kinda killed it.

Purple Mountains Majesty!

Purple Mountains Majesty!

As the day progressed, I felt my pump pop off my pants twice as I got off the gondola.  I blame my butt.  I sat down,  the pump got pushed upwards by my Kardashian-esque booty.  When I stood to get off the gondola, my pump had been pushed above the waistband.   Once, it slid down the back of my pants.  Once I felt it loose inside my jacket against my back.  Not cool, but my jacket unzips from the bottom so poles stuck in snow, mittens off, glove liners off, pump re-clipped, velcro on pants tightened, layers adjusted, coat re-zipped, glove liners on, mittens on, poles around wrists.  Whew.  Ski.

Second to the last run of the day, I was flying (well as fast as I could go before my rental skis started shaking because I technically needed high performance skis and believe me, I LOVE typing that.  one more time, I needed the performance package).  As I soared down the mountain singing in my head and strategically shifting my weight and the edges of the skis, I saw something in my shadow.  Something sticking out of the side of my jacket.  Oh, just my lift ticket.  Ummmm no, the lift tickets don’t clip onto a zipper anymore.  The lift ticket is now a keycard you put in your pocket and they scan you with a zapper in the lift lines (this fascinated me as once scanned, the zapper operator would say your name and chit chat.  Lovely). As soon as I realized that strange shadow waving in the breeze was not my lift ticket, I started hitting the breaks.  We’re not talking hockey stop, I hit the breaks in a pie wedge, like a beginner, and the shadow whacked me in the back of the leg.  I scooted to the side.  I stopped. I tried and missed grabbing whatever was in the shadow with my pouffy mittens. I had already tossed my poles to the ground.  I tossed the mittens there too.  I reached again and grabbed my swinging pump.  Whew.  I just stood there thinking that this was NOT the ideal situation.  I then smiled.  I’m fine.  I caught it.  This wasn’t a calamity.  I snapped a photo because based on my maturity, I started giggling to myself that my shadow could be the source of many a dirty joke.  Diabetes is so effing annoying sometimes, but I was absolutely fine.  A little freaked out, but fine.  I was better than fine, I was skiing my heart out.

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So I skied down the rest of the way and thought about what I’d do.  If I’d lost my pump, that would be a horrendously expensive problem, but I could have taken the gondola down to the lodge as I had insulin and emergency syringes in my purse which I’d put in a locker.  If I’d never found my pump, I had a back-up old Ping in my purse too.  I have a photo of my pump settings on my phone.  Inconvenient and expensive for sure, but I’d live and that’s the thing…

I recently had a conversation about the concept that you can never go back.  I’m not sure I believe that.  After all these years, I returned to a sport I once loved as a child.  Oh sure I hated the cold, and carrying all that gear, but the art of skiing was always me in my zone.  My Dad would say he could hear me humming and singing as I skied past him as a kid.  I was always making up my own songs with the theme of “You can do it” (I was a creative, cuckoo little kid).  What if instead of not being able to go back, you take all that stuff you learned, stuff that’s supposedly behind you, you smush it into a ball and you toss it ahead of you?

I think it’s true of diabetes too.  You learn all this stuff, you screw up, you learn, you try again, and you don’t leave it behind.  You use it all to lead you.  You can let it beat you down and God knows I understand diabetes fear, but its also your motivation.  Sometimes your pump needs to smack you in the ass to make you slow down and then, you pull on your mittens and race ahead.