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.


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?


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

NO Change

Changes – Thursday 5/14 
Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

I read 2 of the posts this morning for the “Changes” theme while I waited at my retina specialist’s office.  I had an early appointment.  It was a gorgeous morning.  I was ready.  My referral however, was not.  I have some new doctors since I had to change insurance coverage.  When I worked with the insurance broker, there was ONE non negotiable for my medical team.  I keep my eye doctor.  No matter what, I keep my retina specialist.

When I was in my mid twenties I took a job in New York City.  Maybe a year into the job, I was sitting at my office drafting table with a drawing on a piece of graph paper.  I had an itch and rubbed my eye while looking at my drawing.  Absolute and complete horror hit me.  The graph paper turned wavy like that fisheye tool in Photoshop.  I uncovered my eye and looked again.  The graph paper looked fine.  I covered my eye with my hand.  The graph paper was wavy.  I moved my head.  The wavy lines moved.  If there is a stronger word than horrified, than I was that word. I had changed to New York doctors but I’d never changed retina specialists since I’d moved.  No way.  I saw the same retina doctor every year from the time I was a little girl and he was considered one of the best in Philadelphia.  Its all a blur now (ahhh bad joke), but I went to my parent’s and saw my doctor.  Yes, non proliferative retinopathy.  I had laser treatments.  I was scared out of my damn mind.  This kept up for maybe another year.  I had to switch to a New York doctor.  My Philly doctor was a big shot.  He recommended a doctor group in New York.  Only a few doctors in the group took my insurance.  The Philly doctor immediately named one of them as the guy I needed to see (see? Oh man, I swear I’m not doing this on purpose).  He told me he was young.  I didn’t want young.  I wanted seasoned.  Philly Dr said this NY Dr just spoke at a retina conference and the head of the NY group was the doctor for a D celebrity.  Ok.  I’d give it a try.

I saw the NY Dr in the late 90s.  Yes he seemed young.  He told me I needed more laser.  This scared me more.  I didn’t know this doctor.  He wasn’t the doctor who’d treated me for years.  Then he told me I had 2 options.  One was the current laser treatment protocol. The other was much more aggressive treatment.  Something new.  I am not doing justice to this story since my brain can’t remember all the technical aspects, but it involved using the laser to cauterize the bleeding vessels AND then to also treat other areas preemptively.  If other places were going to bleed, to make it so those places would be further away from my center of vision.  It made sense to me (sort of) and it involved a lot more laser than I’d previously had.  I could get worse before it got better.  I went for it.  I’ve lost count of how many times he treated me.  Sometimes a little laser, sometimes a lot.  Both eyes were involved.  He was so nice and enthusiastic and we’d talk design and he made it all seem so positive.  I would be there for hours and hours waiting.  Sometimes I cried afterward.  And then there was a time I didn’t need any laser.  And another time and another time.  That last time was over 10 years ago (I think 13).

So I was the patient today without a referral.  It took me forever to get someone at my new primary doctor’s office to answer the phone.  I was apologizing to everyone in the damn office, as I knew I was screwing up the doctor’s schedule (apparently I really wasn’t but I felt like I was).  Letters and numbers projected on a mirror, reading test, the wavy graph. I made lots of jokes.  Waiting.  Eye scans.  The room for the tracking laser tomography.  I walked in and called it “fancy”  the technician shot me a look (it couldn’t be less fancy of a room).  As she set everything up, I called it “exciting”.  Then an “adventure”.  She said, “well that’s one view of it”.  So I explained it to her.  If I consider this an adventure, that the equipment looks “fancy” and this is so freaking exciting, then its a positive set-up.  Everything is less scary when it’s an adventure.  She sat back and said, “Ok, let’s get you back on your fancy adventure”.



There were some hiccups when I got to see my doctor.  They couldn’t get the scans to upload but when one of the technicians said, “There’s something wrong”, my stomach sank to my toe. (I thought they meant with my peepers, not uploading the scans).  My doctor showed me how great my eyes are.  How beautifully the laser from long ago worked. I saw the layers of my eyes and heard how thrilled he is with the results.  Then he said it,


He told me how he thinks all my exercise continues to help my eyes.  Then like everyone I now talk to, we spoke about cycling.  Seriously I have nothing else to talk about anymore really.  He is going on a cycling trip in Italy.  His kids are no longer kids.  And I walked out, dilated pupils like a cartoon character, and orange sunglasses I got for free at Food Bank event, I decided to walk the 30 blocks back to work.  I put on my music and George Michael’s Freedom ’90 song.  I know, I’m so old it’s ridiculous.  I kept the song on repeat the entire walk.  I was all smiles thinking about the theme of DBlogWeek being CHANGE today.  If you know nothing about the song I type of, read this: George Michael’s Freedom ’90.  It’s interesting, about his changing.  I walked with swagger.  I smiled at every damn person.  No Change!

I walked in the door of my office and took my iTunes off repeat.  Next up, Iggy Azalea’s ‘Fancy”.  My fancy, exciting, adventure to the eye doctor.  They won’t all be winners.  I don’t expect them to be and there will be many more bumps in the road.  But today, was a No Change.

Cleaning? Phewy.

Clean it Out – Wednesday 5/13 
Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)

Hey, I didn’t keep it “in” yesterday.  I let it out.  I thought a few times after I hit “post’, that if I’m talking about my conflicting feelings that I have too much information out there, I was willingly increasing that “out there-ness” with yesterday’s post.  Any second guessing myself thoughts were erased last night.  I was on my way home when I checked my email. Every note about the post yesterday made me cry.  The notes were beautiful, some heart breaking but all so touching and relatable.  Dammit these eyes are all misty just typing this.

As for things you need to physically toss… oh where do I start?  About a month or so ago I ended up with a sinus infection that knocked me on my derriere for 3 full days.  I wondered if I was actually dying and do people die from sinus/bronchial infections.  I don’t have an answer to that, since I couldn’t keep my head up long enough to do research.  As I slowly lost my mind being trapped in my apartment and peaking around for the grim reaper (and misplacing the TV remote and watching 4 episodes of Keeping Up With The Kardashians… who i learned are tought to keep up with for sure), I started going through my diabetes cabinet.  Please note, this sounds like I’m organized.  Smoke and mirrors my friends (dry ice anyone?).  I have a diabetes cabinet and then Dexcom boxes on shelves, back-up syringes in a closet, old pump supplies on other shelves… you get the picture right?  Oh and I almost forgot there is a secret hiding spot in the wall under my bed.  I refer to that as “the Well”.  I dropped a pair of tweezers in there once and never saw them again.  Scary.

So I started going through the diabetes stuff.  If asked, I would have guessed there were supplies that were expired and probably the earliest date was 2011.  Nope. 2005.  Yes, I have pump supplies that have discolored.  You know why?  Because they are over 10 years old!!!! EXPIRED 10 years ago so I have probably had them for 12 years and they belong to an old pump I would need a training class to ever use again.  Now, you can make a solid argument that I am just messy and that’s the whole pathetic story.  That argument is indeed solid.  Although the demise of my sinuses got me to go through ALL the stuff, I kept some of it.  What?!?!  Hoarder?  Maybe (probably), but when I think of things like the week there was NO electricity in my neighborhood during Superstorm Sandy, or the denial letter for my Dexcom from the insurance company (still not worked out but things seem to be going in my favor), I worry that someday, the most recent “expired” supplies will be useful.  If nothing else, I could form an escape rope out of all the pump tubing right?  I mean I’d need to learn some speed knitting but it could happen, no?

Yep I kept supplies that expired in 2013 (2005-2012 bit the dust). Hopefully I will never have to use the 2013 or 2014 supplies, but there is a weird sense in comfort knowing that they are there, and that’s ok by me.  Maybe I’ll turn them into an art project the next time I’m home sick, because seriously, cleaning is/was the worst.



Painful Secrets?

Day 2 of Diabetes Blog Week #Dblogweek:

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.

Keep it to Yourself 
Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  

I started writing my response to these questions, about my dating life and thought maybe 10x that I should go with this from a different angle or just not at all, but I work best with a stream of consciousness approach and heavy doses of unedited “winging it” so here goes.  I was in a serious relationship when I started this blog years ago and my then partner was referenced in my early posts, often.  I have not tackled dating here for a multitude of reasons, and diabetes is not the reason I didn’t find “the one” (please note that there is an eye roll that goes with typing that, “the one”), but diabetes has played a role in my relationships, to varying degrees, along with many other non-D aspects of life.

There is something specific to dating that has occurred with me in recent months.  If you have followed me on twitter, or you know me, you might know I participated in an Artificial Pancreas trial back in November.  It was pretty incredible.  Since that time, I wrote about my experiences for JDRF, A Sweet Life, have spoken at various JDRF Type One Summits, spoken on behalf of Mount Sinai hospital, did interviews with some diabetes publications, ended up on the local news and witnessed a newspaper interview I did, get picked-up internationally.  Wow.  Sounds braggy right?  I agreed to all these things for the reason that I want people to understand and learn about T1D.  I want to help further the cause and if my body and my time enabled Artificial Pancreas research to progress, then I can use my mouth and my brain to explain both my experience and also why I believe research and diabetes research funding are so damn important.  I could go on and on, but that’s not the point of today’s post.

What I considered but didn’t really fathom, was Google.  I don’t hide the fact that I’m T1D (or PWD, but I never remember to use that terminology).  I have been google-able for a long time.  As far as T1D goes, my JDRF Walk team has had fundraising stuff all over the damn interwebs for years.  There is no hiding and that’s not my desire anyway.  The press over the AP trial though, I didn’t/don’t control.  An article that says I’m haunted by T1D (Seriously? I want ghosts if that’s true.  I want ghosts that can go do stuff for me… pick up dry cleaning, walk the dog, give me a massage and go scare my obnoxiously loud neighbors, etc).  According to a reporter, I haven’t had a good night’s sleep in 35 years (I was diagnosed in 1979.  I must look like a zombie!).  I am a horrendous sleeper but not just because a Dexcom has beeped at me periodically over the past few years.  I live in Manhattan.  It’s effing loud here, people. Or my favorite, that I’ve “suffered” with T1D since I was a child.  Yeah it hasn’t been a walk in the park, but the word “suffered’ is drop-kick worthy to me. You get the point.  Sometimes the facts were corrected in online press, but printed press is, well… printed.  And now when it comes to dating, and even in some recent business situations, people actually Google me.  Instead of explaining to someone new that I’m T1D and what that entails, the internet gives them a slew of information, not necessarily spun how I would introduce it and sometimes not quite accurate.

Can I have Space Ghost?  Chiseled jaw and funny? Check.

Can I have Space Ghost? Chiseled jaw and funny? Check.

I have to admit though it isn’t all bad news for dating.  I went out with someone a while ago who I had to keep rescheduling our get togethers (yep, I’m good like that).  At one point, in a casual conversation, he text me that he had Googled me.  Oy.  He made comments about my career success and some photos (hey thanks), but he never mentioned T1D.  I knew he knew.  So I waited, until I actually wasn’t rescheduling dates and while we were out, he seemed to bring it up -ish, you know, Google and I helped him out.  We discussed T1D.  He clearly did some homework (huge plus in my book) and finally asked where I put my pump.  I pointed between my boobs (I rarely wear my pump there but the dress I was wearing had no other good spot).  Nothing like an ice breaker where you have actually encouraged a guy to stare at your chest.  And then it happened, I know this sounds like a Romantic Comedy, but as soon as I pointed to my chest, I went over my target blood glucose (ps I’m on an Animas Vibe and the screen was facing outward) and my pump beeped and then lit up!  Right through the dress, a blue light. Yep so I had a guy staring at my boobs and then my chest beeped and lit up like I’d swallowed a strobe light.  After explaining, “no I did not do that by pointing at my chest”, it was good for some laughs and then I’m sorry to say, unlike a romantic comedy, he wasn’t “the one” either, but the two other times we went out, I was truly amazed at how he showed-up clearly having done more and more T1D research and we have actually stayed friends since.

There have been some, what I consider, bee sting moments too (well more like a wasp).  In a way, I am relieved I can weed out the “possibles” from the “toss to the curbs”, thanks to some AP press, but let’s face it, those bee sting “Oh Wait,  You’re Sick?  I can’t handle sick!”  moments happened both in my 20s and 30s.  They were rare, but yes, they happened and nothing has ever been as shocking as a 3rd date I went on in my late 20s where the guy went nuts on me in a restaurant about how I misrepresented myself and he doesn’t deal with sick people.  It was awful, he had had a few drinks, got louder, wouldn’t shut-up and I left in tears.  The end of that story though is I’d been set up with him by a friend and a year later she told me he had testicular cancer.  I wouldn’t wish that on anyone, even a boy who made me cry, but maybe he has a different perspective on “sick people” now.

So there you have it.  This is one of a few things I don’t talk about online and for the record, I would do another AP trial again in a heartbeat.  I would do all the press in the world and write as many stories about it as I could as I believe so strongly in research.  The clinical trial experience is like nothing else I’ve ever done and it opened my mind and my heart to the people who are trying to bring this technology to all of us haunted by T1D (sorry I couldn’t resist).  I might get a Casper cut-out on my bike for the JDRF Burlington ride.

And as for the question of why this is important to keep to myself, I just realized it isn’t, is it?


Diabetes Blog Week – Ride On

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.


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.


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!!!


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.