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.

13 thoughts on “Advocacy With A Rhyme

  1. ROCK ON!!! Every advantage to teach….When I was in NYC with undiagnosed appendicitis in 1998 (before I met you), interns and med students kept coming in to see the patient who wouldn’t let the nurses manage her insulin and IV solution, wanting to see where my pump was “implanted” etc….Wanting to know how I calculated how much insulin i needed for the glucose in the IV etc…..CONGRATS on a job very well done Alecia!!

  2. Sounds like you need to go on a roadshow and visit every medical school in the USA along with every medical convention. Good job, Alecia, and I think your doctor did a great job supporting the things you said. A gold star in the advocacy box for you today!

  3. Rockstar status.

    What is it about diabetes that makes us not think twice about “lifting our skirts” (sometimes hypothetically!) and showing parts other people wouldn’t?!

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