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.

JDRF Meet-up & Tandem

Last night the JDRF Metros group met at a bar/restaurant and got to do a Q&A with our local Tandem T-Slim pump rep.  As much as I have read about the T-Slim and know people who have it, it was extremely informative and very cool to get to play with the actual pump a bit.  A few items of note (well for me and these are in no specific order, just how my mind recalled them):

  • I got to grill the rep on the finances of the company.
  • I did not realize that the developers and financiers are from the same company that created Symilin.  I had a horrendously BAD experience on Symlin.  Like really, really bad.  Like dangerously bad.
  • To my objection that there is no back-up battery for the T Slim (it’s rechargeable which scares the shirt off of me after losing power for 6 days during hurricane Sandy), the rep suggested getting one of those mini portable chargers you can get at the drug store (they take 2 batteries).  Almost like having a portable battery back-up, I guess.
  • The charging time for the T Slim was much shorter than I thought and it does NOT need to be almost drained before you charge it (like old cell phones).
  • I was impressed by ALL of the features that make the T-Slim advantageous to other pumps while on airplanes (cabin pressure issues).  I found this part super interesting (and although I didn’t totally understand it, the differences in the venting system were cool… get it?  Venting?  Cool?  That’s 3 cups of coffee making these jokes people!).
  • Alarm for the pump getting too hot and possibly compromising insulin.  I think I’ve had this issue in the summer months and this is an advantage to me.
  • FONT:  On some of the screens I found the font a bit small (and I was wearing my glasses).  The font size can’t be changed.  Insert bigger-is-better jokes.
  • Cut off: If a piano fell out of the sky and landed on me, I’d probably have problems far bigger than my pump getting crushed.  The maximum amount of insulin I ever have in my pump is approximately 110 units.  My total daily does ranges from 18.5 to 24 units a day.  According to the rep, if my pump were smashed, I could possibly get injected with 110 units at once.  I’m fairly certain 4 days of insulin all at once, could be the end of me.  With the T-Slim, due to how the reservoir works, it would apparently be impossible for it to give all the insulin at once.  I didn’t totally get that part but weird stuff falls off NYC buildings all the time so safety is important.
Incredibly dark space.  We used flashlights on phones to snap this pic.

Incredibly dark space. We used flashlights on phones to snap this pic.

  • I think reps believe we all want to hear that a company isn’t in it for the money.  Tandem just made their first profit this previous quarter.  That doesn’t sell me.  I want a pump from a big profitable business.  I want to know if something goes wrong, they can afford to fix it.  I also want to know a company is investing in “what’s next” all the time.  I want to know they can afford the patent process.  I want to hear they have lobbyist.  This DOES not mean they can’t handle these issues, but there is a comfort to ME knowing a company like Johnson & Johnson is diversified and not just making one product.  Yeah, I’m a nerd but a pump is a huge investment and something we need to rely on completely.
  • When statistics are rattled off to me about a pump having larger growth (in the market place) than any other pump available, I think to myself “No shirt, Sherlock”.  If your pump is brand spanking new, your sales figures (percentage) started at zero.  If your growth percentage is NOT the biggest, you’re in big trouble.
  • Sitting in a bar with 4 other young women learning about the T-Slim from a rep who demonstrated from both from a T Slim pump and from his IPad was interesting.  Occasionally I would forget where we were, look up and see guys staring from the bar.  Gotta wonder what they were thinking.  A bunch of ladies pouring over some sort of technology sales presentation in a loud and very dark bar.  Sexy, smart?  Or weird and possibly illegal activity going on in the corner?
  • I was impressed that the rep sat there for 3 hours answering our questions (and he ordered food but never got to eat it).
  • Another item I appreciate is that the basal rates go to the thousandth decimal point.  That was a factor in my Animas pump decision.  My regular weekday basal rate runs at .425, .475, .600, and back to .475.  I think that those fractions are helpful for me.
  • The Tandem rep is not T1D, but has members in his extended family who are.  The NYC 1/2 Marathon is this Sunday.  There are 33 runners on the JDRF Team.  This rep is one of them.  Does that make me like the T-Slim more?  Yes.  Should anyone be using this logic to make a decision about a pump?  No way.  I do however think (to me), it gives the T Slim a bonus point.
  • I am not due for a new pump any time soon however I would consider the T-Slim much more than I would have before.
The worst photo ever taken.  No, I was not in a moving vehicle.

The worst photo ever taken. No, I was not in a moving vehicle.

Batman Makes Dexcom Appearance

Yesterday.  Day off from gym.  No overnight basal reduction needed (or so I thought).  Exciting dinner of avocado and PopCorners (OMG they are so good).  Glass of wine.  Went to bed. Fought Dexcom beeping lows from 12:30am onward.  Slept in normal spot… inside of bed (against wall).  On outside of bed: Ipad, cellphone, Dexcom, dog, dog’s BFF toy Froggie, entire jar of Glucolift tablets.  Ate periodic tabs.  Hugged dog.  Dog annoyed. BG would come back up, but still too low.

Dragged this morning.  Shower.  Coffee.  Subway.  Therapy.  Latte.  Dexcom beeping.  Too high. Correction + bolus.  Bought flowers for office.  Subway.  Office.  Shared piece of toast with office mate. Bolus. More coffee.  Bg too high.  mini Correction.  Work.  Make jokes.  Realize no one likes rap Friday.   More working.  BG still to high.  Must be patient.  Busy.  Go to check Dexcom.  Straight arrow down.  Candy.  Keep working.  More beeping.  Double arrow down.  Use last (very old) Quick Stick. Wait.  Sad that Quick Stick is gone. Put quarters in JDRF jar for all the F-bombs I dropped.  $1.50 total.

Quick Sticks

Quick Sticks

And then ***PRESTO*** …..

Dexcom Batman!

Dexcom Batman

Dexcom Batmanhow-to-draw-batman-easy-step-6_1_000000094181_3

Not the ideal BUT there’s gotta be some entertainment value in this right?


Melissa, Marina and Freddy

Throwback Thursday.



Many, many years ago, I thought I caught a trash bag while fishing with my family.  Nope.  I caught a flounder that made me the Second place Cape May County Flounder Fishing Champion for that summer.  I was mentioned in a local newspaper, received an official champion certificate, and a fishing pin to be worn on my non-existent fishing cap.  Pretty damn exciting.  Beating both of my brothers for Biggest Fish Caught on our trip was amazing.  Finding out I was the second place Cape May County champ and watching the looks of disbelief on my brother’s faces was effing awesome (especially since I thought I had caught a trash bag).

Was it fair?  I did bait my own hook so by family rules, it did “count”.  As evidenced by the photo, I was too scared to hold Freddy the Flounder while on the dock.  Notice my hands pinned awkwardly at my sides and the nervous/proud/just-luck-I-guess smile on my face.  That is the first mate’s hand holding MY fish in front of me.  What I lacked in fish holding, I made up for in bragging enthusiasm.  My brothers weren’t amused on the car ride home as I went on and on and on about how cool it was to be the ONLY member of our family to EVER get placed on the HUGE Cape May County fish board.

When I saw this fishy photo today, it made me smile.  So proud and jumping around like I had ants in my pants, until I was supposed to hold Freddy, and then I froze.  Everyone shocked.  I was considered the least “into” fishing and yet I won.  Winner, winner chicken (well flounder) dinner.  How was that fair?

It wasn’t fair.  Like so very many other things in life, it wasn’t fair.  And that’s my favorite part of the story.  We were on the boat the whole day.  No one on the boat had caught anything for awhile.  The Captain decided to move so we could fish in another spot.  Everyone reeled in their lines lickity-split, except for me.  I was teased by both brothers, all of us simultaneously realizing my upper body strength was truly pathetic.  As my rod’s hook and weight got closer, it became more and more difficult to reel it in, but the pull didn’t seem like there was a fish on the line (This wasn’t my first time at the rodeo, errr, Atlantic Ocean.  I’d caught flounder before).  I remember thinking how cool it would be if there REALLY was a fish on my line after all this upper body weakness embarrassment.  I was wishing for that magical, “NO WAY”, moment.  Everyone was watching and I swear to God it looked like a shadow for a second and then like a big black trashbag being pulled to the surface.

Here’s what you need to know about flounder fishing.  You do NOT yank the line into the boat with the fish on the end.  Big No-No.  It won’t stay on the hook (I’ll spare you the details). You get the fish to the surface and then scoop with a net.  As the fish disguised as a trashbag came to the surface, the 1st mate yelled to me to stop.  Give me a break, dude.  My brothers were still mocking my lack of muscle tone.

“You caught a BIG one!!”

Huh?  I did?

Nope, not fair.  Luck.  And that’s why if you’ve made it this far in my fishing story, I implore you to read Melissa’s post from Diabetes Daily, “Diabetes Complications are Complicated” (If you haven’t already read it five times like I have).  She absolutely nails it and touches on things that have been on my mind…  guilty and frightened…yep, nails it.  Diabetes complications… nope, not fair… who is lucky?

Today there was a response to Melissa’s post (also on Diabetes Daily) from Marina, “To LOVE A Thing That’s Always Trying To Kill You: Diabetes“.  Wow and WOW.  Again, this touches on so much of where my mind wonders, and the very core of the place I have been struggling for months, “I am worth this struggle”…?

I’ve read Marianna’s post 3 times today and everytime, my eyes tend to get a little watery (allergies?) when I reach, “I am worth this struggle”…. This is my struggle, plain and simple.  If this mantra in any way can lift some of the weight of all this…. that anchor in my mind that seems a little heavier these days, I will gladly repeat this mantra to myself a hundred times a day.

I’ve got much more upper body strength these days.  I need to reel in that anchor a little bit now or I will sink.  I am worth this struggle.  How very beautiful.


Captain, Tenille and Dora the Explorer Take the Subway

I hopped the subway last week, late in the afternoon.  It wasn’t rush hour, but was just crowded enough that I didn’t get a seat.  I stood against the door and within a second I noticed the woman sitting across from me.  She was older, significantly overweight, and had a haircut that reminded me of Tennile (of Captain and Tennile fame… yes I date myself with my old lady Pop culture references).  I’ve lived in NYC a long time.  I have encountered my fair share of crazy.  Heck, I’m pretty sure there are people who readily describe me as crazy.  I’m not gonna lie, she gave off a crazy vibe.

Image from

Image from ABC News

My eyes immediately spotted something on her lap (you know, after I’d finished thinking myself quite the smartie recalling Tennile’s name and hair style).  The woman on the subway held onto a box with both hands.   The box was bright yellow and I immediately recognized the device photographed on the front.  That mini Freestyle blood glucose meter.  The top of the box was ripped off and paperwork was sticking out.  My heart lept.  One of MY PEOPLE.  I kept staring in a you-are -half-staring-at-people-on-the-subway sort of way.  I wondered what her story was.  I thought I should tell her I’m diabetic too.  My internal dialog then laughed at me.  If I saw another woman on the subway would I say to her, “hey I’m a woman too” and high-five her?  If I saw someone with the same brand of sneakers on would I say, “Oh I love Brooks too.. we should be running friends”?  I kept my non-staring, staring.  At the next stop, the person next to Tennile With The Freestyle Meter, got off the train so I grabbed the seat.  I sat there thinking, “Should I say something?  Am I crazier than this lady since I’m having this whole conversation in my head?  Why is there so much stuff sticking out of that box?”

Freestyle image from Walgreens

Freestyle image from Walgreens

I made a deal with myself.  If she didn’t get off at the next stop, I would say something.  We diabetics need to stick together right?  Being kind is a personal goal of mine and chatting is kindness right?  Sort of?  Or am I just a busy body who should be reading my book and minding my own business?

The next stop.  Tenille FreeStyle didn’t budge.  Neither did I.

Go time!

“Hi.  I noticed your glucose meter box (me, pointing at box).  Do you have diabetes?”

She barely turned her head (another sign of crazy maybe) and answered, “Yes”.

“Me too!” (I tried to sound like “yeah, whatever, cool” but am pretty sure I probably sounded way too excited, like a cartoon character).

She turned slightly but was still looking at me out of the corner of her eyes.  I also now had the attention of some fellow commuters who were practicing their non-staring-totally-staring look.  She said, “Doctor says I got it again real bad.  Blood over 300.  They gave me this” (I’m going to assume this was the box with the BG meter).

Hmmmm.  “Again”  threw me a bit.  “Got it real bad” made me wince slightly in that my-pancreas-quit-when-I-was-6-years-old-and-I’m-pretty-sure-I-don’t-have-it-“real good” kind of way.  Oh and did your doctor actually say that, because if so I’d like to rattle them.

My turn.

“Well I’ve been diabetic for almost 35 years.  It isn’t easy, but if I can do it, you can do it too.”

Tenille FreeStyle turned to look at me. She quickly looked me up and down and turned back to facing forward.

Nothing.  Awkward silence.  Ummmmm.

Next stop a woman got onto the subway with a very small child.  There were many more people now.  Unlike my fellow seated commuters who apparently were raised by wolves, I offered my seat to the woman with a kid who looked exactly like Dora The Explorer.  She nodded, took my seat, and pulled Dora onto her lap.

I stood to an angle overlooking Tenille FreeStyle.  Her eyes darted around but she definitely was NOT making eye contact with me.  Next stop, more people.  Now I had to move further from Tenille FreeStyle.  Well that was a bust.  At least Dora the Explorer was smiling at me.

My stop.  Dora and her Mom were getting off ahead of me.  I saw Tenille Freestyle give me a darting look as she slid into the corner spot where Dora and her Mom were sitting.  I thought I should say something.  What?  “Good luck”?  That sounded so lame but I needed to get off the train and way too many people were exiting all at once.  I looked down.  Tenille FreeStyle beat me too it.

“Thanks for talking.”

I’m not sure if she meant diabetes stuff or just that I spoke to her.

“I meant what I said, even when it doesn’t feel like it, you REALLY can do this.”

She thanked me again and said OK and I gave her a big smile.

I got off the train.  The whole thing was odd.  I blocked people getting on the train and they were clearly angry pushing into me as they tried getting where they were going.  I was the lone salmon swimming against the 6 train.

I walked down the platform thinking about Tenille Freestyle.   She’d smiled back at me as I left the train.  Her teeth were very mangled.  I thought how I really need to make a dentist appointment.  I thought how this little experience wasn’t a diabetes thing at all (I mean it is but it’s more than that).  It’s about being compassionate.  It’s about being kind.  But was I just kind because of diabetes?  I never would have spoken to her otherwise.  My immediate reaction was something was off with her.  I spoke to her because I thought she probably has diabetes and therefore I felt compelled to say something.  Hmmm.

I thought about how there are plenty of times that I feel burdened by diabetes.  That I am scared, sometimes really scared and that there are times I don’t feel I can necessarily just do it.  I usually keep these thoughts to myself.  Saying it out loud could make it true (and send up a major red flag to people who know me and give me a few more points in the crazy column).

Did I just lie to Tenille FreeStyle?  No.  I told her the truth.  I do think she can do it, and it is not easy.  If I’m willing to believe in a stranger, I need to believe a bit more in myself too.

Thanks Tenille FreeStyle.

*Please note: in an earlier paragraph I referenced people raised by wolves perhaps lacking the manners to give up their seat on the subway to someone in need.  I do not personally know any wolves.  I’m sorry if any wolves were offended by my comment.


Hammer Time

Today’s post was supposed to be about an diabetes incident/ talking-to-a-stranger moment I had on the subway last week.  However, I read the following quote from Eleanor Roosevelt this morning and thought, “Oh My God, THAT’s IT.”  I will probably read this a thousand more time this week. To diabetes and beyond… Thanks Eleanor Roosevelt and this is why if I could have dinner with any famous person, dead or alive, she is STILL my #1.

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

– Eleanor Roosevelt

Powerful words.

Now, in other news, I haven’t been to a Spin class in years but I will be participating in the JDRF event this Saturday (March 8th).  In NYC?  Looking for some exercise?  Want to try a David Barton class without becoming a member? Want to support JDRF?  Want to join me?  Want to push me back-up onto my bike when I keel over but my feet are still tied to the pedals?

Facing Fear.

STOP.  Hammer time.