diabetes

Health Tech, Brains, and Bodies

Many thanks to my Stanford MedX friend, Mark Freeman, as well as Matt and Daniela, for having me on the Everybody Has A Brain podcast to chat about wearable health technology.

These awesome folks are responsible for one of my favorite healthcare takeaways: Everybody has a brain.  If you have a brain, then you have mental health.  Let’s normalize the conversation, then.

Mark and I discussed the pros and cons of my Dexcom continuous glucose monitor (CGM) experience, to include physical and mental components of using health technology.  I even sent along a not-so-perfect CGM photo to illustrate the sometimes-wonky T1D reality of Dexcom alerts.  Matt and Daniela then continued the chat on wearables.

Please take a listen (link below), and check out everybodyhasabrain.com to see other cool content.

Everybody Has A Brain podcast

“Survey Says…?!”

***Update: The survey is now closed. 

Thank you so much to everyone who participated and/or helped to spread the word!

Diabetes folks, please consider participating in my research survey, which can be found here:

Very Light, No Sugar Survey 2016

 

Please read the bold text of the cover page, as it is very important to our data collection.

Sharing is appreciated. Thank you!

 

 

Kangaroo Krazy Dreams

My insulin pump administered ten units of Humalog in my sleep!  I must have rolled onto it the wrong way, and the buttons got pushed!  HELP!!!

 

I splurged.  I drank the entire island-themed mixed drink with all of the sugary syrup, and I forgot to bolus.  Where is the insulin vial that’s normally bouncing around in my purse?

 

My meter says “HI” but it’s not the same friendly “Hey what’s up hello” a la everyone’s favorite rapper, Fetty Wap.  I could drink an entire gallon of water.

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“Your GFR results were funky.  We’re going to do this Fancy-Sounding-Medical-Test to further evaluate things.  The nurse will be in soon with a mile-long needle to stick in your back.”

“Can’t we wait a minute for Dr. Z to arrive?  I don’t want to do this before talking to her.”

“This is healthcare, honey.  Time is money.  We can’t wait for another doctor.”

 

 

“What are you doing?!!  Why would you pull your car over in such a dangerous location?  There is a blind spot around this curve in the road!  Another car could hit you!  So, so stupid!”

“I’m low.”  Even if I’m not low, maybe that reasoning will be enough to make him stop this time.

 

Must. have. food.  Hamburger. Fries. Soft serve vanilla ice cream.  Anything.  The words aren’t coming out when the cashier rings me up…

 

I’m so tired of needles.  It’s not even the momentary pain.  It’s the voluntary submitting of myself to another human being whose societal title raises him or her “above” me.  Doctor.  Patient.  Needle.  I’m not signing up for this again.  One month off from appointments won’t make or break my health.

But then the baby kangaroo hopped over to me.  Overcome by its cuteness, I hugged it tightly.  Baby Joey reacted by biting my hand, slicing into my thumb.  Mom tried to catch him so we could test for rabies, but he bounced away into the woods.

Rabies shots?  No, please no more needles.  Can we just wait a little bit?  My doctors will be back from vacation soon and then we can move forward with the shots.  This is supposed to be one month off!  Please!  I promise I’ll be good.

 

baby kangaroo giphy

Source: giphy.com

 

I always assumed other diabetics dreamed about diabetes as often as I did, until an impromptu and unscientific Twitter inquiry informed me otherwise.  Some #doc members replied that they had only dreamed of diabetes once or twice; others shared a few humorous tales inspired by overnight hypoglycemia.

[After-Publication-Note: The above-mentioned were just dreams.  All is well.]

I am in the Twitter minority that dreams of diabetes on a weekly basis.  The snippets illustrated above come back to one resounding theme: There is an emergency, the odds are against me, but I somehow am responsible for getting myself out of trouble.  Life with diabetes in a nutshell, if you ask me.  We just look pretty damn brave while we live it every day, so others do not always notice our superhero capes.

Along with some valuable assistants, I have moved mountains to quell my anxiety in recent years.  Anxiety will always be there, but it does not have to be the loudest voice in my head at all times.  What saddens me with these regular, scary dreams is that my body is subconsciously in survival mode even when at rest.  Diabetes never sleeps, and neither do we.

The good news is that these dreams have value.   The incessant cravings in the McDonald’s line?  Yup, my body is signaling that my blood sugar is low.  Eventually a light switch goes off and I jerk awake, covered in sweat, just in time to hear the CGM alert going off and to gulp down the juice on my nightstand.

The kangaroo?  Well, I have to be honest with myself: Although I appreciate the wonderful healthcare I receive in Boston, everyone needs a break at some point.  I recently booked a few non-essential appointments closer to my Rhode Island residence in an effort to cut some traffic corners where I can.  For now, I’ll reserve Boston for the vitally important appointments only.

But as much as I want to pretend that I can handle all of this on my own right now- during the self-prescribed “month off”- the reality is that I still need the support of my healthcare team.

Can’t we just wait for my doctors and nurses before the rabies shots?  Can’t they just take it all away- diabetes and injections and highs and lows and fear- just for a few minutes?  Please. 

I don’t say it enough, but I’m braver with their help.  

 

 

 

 

 

 

Ally-gator Scratching for Answers

A few weeks ago, I attended some follow-up appointments at Mass General Hospital (MGH) in an effort to identify allergies that may be triggering an inflammatory response in my body.  In other words, #JustSayNoToKetones, random fevers, crappy BGs, and the typical symptoms of a type 1 diabetic’s response to the dreaded “normal person sick” (NPS).  A WordPress glitch is not allowing me to link to content tonight, but the background to my MGH visit can be found by searching for the blog post “Sleuthing” on verylightnosugar.com.

In April, a scratch test confirmed what we already knew.  I am allergic to the following culprits.  Do not let their pleading-innocent faces fool you in their mugshots!

 

 

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 #WhoMe? #TootsieWithTheGoodFur

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#FreeAceDog

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’16 Bonnie & Clyde

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Scratch test and shoe game

We scheduled more intensive allergy patch testing in June, in which potential household irritants are temporarily placed on the skin to elicit reactions and identify allergy triggers.  I visited MGH on Tuesday, Thursday, and Friday, logging hundreds of miles on my car and refreshing my memory on just how difficult Boston traffic is in the summer.  I averaged 2 hours on the way there and 3 hours on the way back to Rhode Island due to traffic.

On Tuesday, a nurse placed the patches on my back.  She carefully explained each step in order to keep me calm and informed.

“Now I am going to clean the area… Now I am going to dry off the area… Now I am going to place the patch.  It’s like a big sticker… Now I am going to secure the sites with tape… Now I am going to draw around the sites with marker so we can track the reactions and the locations… You may feel a little itchy… Do not get the sites wet or super sweaty… Try not to scratch so we can examine things clearly when you come in again… Call us with any problems…”

“That’s it?  I’m free to go?!”

And off I went for 48 hours of fun.

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I’ve always wanted to say that a crocodile, an alligator, a Great White Shark, a mountain lion, or a bear bit me.  Seize the day, folks.

The sites were a little itchy, but nothing unbearable.  In true diabetes form, my skin was more agitated by the medical tape than anything else.  Eventually I could tell that a baseball cap and perfume overload were not going to cut it; I needed to wash my hair without getting my back wet.

The first attempt in the kitchen sink resulted in me inadvertently mopping the floor with my soaking wet hair.  I moved on to the shower, my back carefully padded with towels and sweatshirts to avoid contact with water, which would jeopardize the test results.  I craned my neck into the stream of water and scrubbed as best I could.  The next day resulted in a “hat day” as well, my hair a total Punky Brewster disaster.  Shout out to the Betes On Tap crew for sitting next to the smelly girl at happy hour.  You are good for the soul.  🙂

On Thursday, I returned to MGH for the patch removal.  A nurse gently peeled off the tape and then the patches, always cognizant of how much her patient was flinching in the background.  The skin is understandably angry after all of that, so a 20-minute waiting period takes place before the sites are examined to allow the skin to cool down.  One of my top ten favorite healthcare interactions of all time resulted:

“Try not to scratch, okay?  I’ll be back soon.”  -Nurse

“Okay.” -Me

*Frantically scratches back as nurse leaves the room*

20 minutes later:

Nurse, lifting patient’s shirt: “Did you scratch…?”

“No…..I mean, yes!” -Me

Now I know how Tootsie and Ace feel: guilty as charged.

Further examination revealed some irritation to certain patches.  The nurse bid me farewell with strict instructions not to scratch at home.

On Friday, I met with the doctor.  The skin irritation had quieted down at that point, and she did not believe that I was reacting to the patches we tested.  Further testing of a wider range of patches was recommended.  TBD what that will reveal… But at least I’ll know how to wash my hair better for the next time.

We also did a penicillin test, which involved scratch testing of the skin, shots, and eventual ingestion of penicillin.  Being a healthcare nerd, I know that penicillin allergies are often misdiagnosed or that patients will outgrow the allergies, and I was hopeful that the one time I broke out in hives and ran to the bathroom every few hours while taking penicillin in college would be a fluke.  It was.  Your girl is free to take the antibiotic again, which is nice to know in case of any serious infections in the future.  Now to update my MedicAlert bracelet!  I will bask in the glory of removing a medical jewelry condition rather than adding one this time around!

I took everything in stride the week of the appointments, mostly because of the superb care I was so blessed to receive at MGH.  The appointments ran on time; I was seen by an expert in the field; the nurses were considerate and thorough; the receptionists were friendly; a volunteer greeter walked me to the elevator I needed; just wow.  From the moment I stepped foot in the main lobby at MGH, I was treated respectfully.  I was not just a patient.  I was a human being.  Just like everyone else in the building.  This is a welcome change from some of my experiences at other facilities, and I urge those clinics (you know who you are) to take a page out of MGH’s book.  There is a reason why MGH is repeatedly numero uno.

The following week, exhaustion and burnout reared their ugly heads, and I was just… done.  Done with diabetes, with healthcare, with publicly sharing my health story, with traffic, with pretty much everything.  I wanted my privacy and my identity back- to not submit myself to one more needle poke or to being a patient incessantly pingpong-ing around the healthcare system.  Alas, after lots of sleep and lots of time spent in good company, I can see the light more clearly this week.  I am extremely fortunate to live near Boston and to receive topnotch care.  It is okay to be tired.  But I have to keep going, not allowing health woes to take over; rather, to know that I am trying.  We all do this because we have to.

Goodnight.  Don’t let the scratch tests bite.

-Ally-gator

 

 

 

*My condolences to those mourning the loss of friends and family members from the diabetic online community this week.  I hope that this blog post provided some comic relief, but on a more serious note please know that you are all in my thoughts and prayers. 

#weneedacure

 

 

 

 

Coloring Book

Bruising happens.

Black-and-blues are inevitable with multiple daily injections (MDI) considering the sheer number of times we must poke ourselves each year.  None of this is natural for the body to endure, but it is necessary.

As I flinched while a nurse removed bandages from my back at a recent medical appointment, she paused and asked if she was hurting me.  “It’s okay,” I mumbled, more concerned that my tough exterior was noticeably crumbling down than I was about any physical pain.  After the initial diabetes diagnosis shock at approximately age 3, I bottled up my emotions in order to survive.  We might need a stronger corkscrew to open the floodgates at this point…

The visible reminders of insulin injection bruises on my abdomen are an aspect of MDI that I grapple with emotionally.  I am forced to admit that diabetes is right there looking back at me in the mirror, and that sometimes it does hurt me whether I want to concede that point or not.

Admittedly, this is a morbidly weird artistic endeavor.  But I decided to have a little fun by altering a photo of Mega Bruiseasaurus, which has camped out on my stomach just in time for bikini season.  The bruise’s purple hues became a sea turtle’s shell, and my jeans morphed into the water in the background.  Inquisitive face, green limbs, and a pointy tail sprouted up through the hard shell, determined to show off the good stuff that diabetes sometimes clouds from our views.  Bruiseasaurus is no longer the greatest creature in the jungle.  Sally the Sea Turtle has marked her territory, too.  She is the life of the party, after all.

sea turtle bruise pic

 

Pen-tastic

Today’s Dblog Week topic is about tips and tricks.  There are many nuances to my diabetes management.  This injections trick is probably my favorite:

1. Download the mySugr app.

2. Log blood sugars, insulin injections, carbs, and more in mySugr.

3. If your insulin pen does not have one of those fancy calculators indicating when you last took insulin, create your own system to minimize the risk of double-dosing, or forgetting to dose.

4. For example, in the photo shown below, mySugr would have indicated that I already took 3 boluses of fast-acting Humalog today.  For my fourth shot of Humalog, I move the green hair tie up to the #4 drawn in marker on the insulin pen.  Later, when I take my fifth injection, I will move the band up to #5 on the pen.  And so on.

*If I exceed 8 boluses in one day, I simply move the hair tie back down to #1 (which becomes #9 in this case, and according to my logbook information in mySugr.)

**Handwriting was never my strong point.  Sorry, Catholic grammar school nuns!

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5.  Injections are a blur when your body has endured a lifetime of pokes and prods.  This system helps me to keep track of which injection I am on for this particular day.  My hope is that sharing this trick helps someone else.  Get creative with those hair ties!  🙂

 

Disclaimer: This is my own experience; consult with a medical professional before making changes to your diabetes management.

Bingo


DBlog Week topic #4 is in regards to the healthcare experience.  Yours truly could write a novella about this, but instead I will direct you to a few relevant posts.

For my healthcare rants and proposed solutions, please see here, here, and here.

Erin Gilmer’s “To All My Providers” is a must-read.

I am well-aware of the flaws of our healthcare system, having studied healthcare in grad school, worked in it, and lived it for 25 years as a type 1 diabetic.  But for some odd reason, I just don’t feel like complaining about those flaws tonight.  Instead, I want to share a vignette about the spirit of healthcare that I wish the system embodied more often.

In 2014, I took a summer elective called “Healthcare and the Older Citizen” as part of my Master’s program.  I don’t know if I can really relate to this stuff, I thought.  But the instructor was my favorite, and we got to tour nursing homes and elder care facilities all over the state of Rhode Island.  Wins all around.

The juxtaposition of two facilities has always stuck with me.  Early in the season, we toured a fancy nursing home which cost enough to afford college tuition and then some.  The food was topnotch, organic, and prepared by the best chefs in the state.  The amenities rivaled an episode of MTV Cribs.  The picturesque sunsets were the stuff dreams were made of.  By the end of the tour, my classmates and I were ready to pack our bags and move in!

The residents at Fancy Home were not particularly memorable.  Nothing bad happened, per se, but nothing great was happening, either.  They kept to themselves and spent their days dining on lobster and not talking much to their neighbors.

Later that summer, we visited a different location, a Church-run, low income assisted living facility.  This place looked like the storage shed of Fancy Home.  The cafeteria was reminiscent of my Catholic grammar school days- overcrowded and overheated.  The food was run-of-the-mill, easy mac-n-cheese or hotdogs with green beans.

But the residents at Church Home were different.  There was a noticeable pep in their step as they gave us the grand tour.  One woman opened up her apartment to our entire class, and as we crowded into the room she showed us a black-and-white photo of a relative who- despite the diagnosis of diabetes at a time predating blood glucose meters- had jetted off to explore the world.  There were no regrets in that decision.

Other residents told us about the Friday evening luaus and Saturday Bingo tournaments, and the happiness of spending one’s days winding down on earth in the company of the best friends you could ever hope to encounter.  Life was good.  Death was with dignity, surrounded by people who cared about you.  The Afterlife was even better.

My classmates and I graduated from that course with a newfound appreciation for humanity in healthcare.  We understood that no matter how much flashy technology a hospital has, or how much money is invested, you still cannot put a price on healthcare that emphasizes the “care” part.  Love, respect, and grace go a long way, and these characteristics are relatable to any walk of life, any generation, any healthcare facility.

In order to provide good quality of life, healthcare does not always require the bells and whistles.  Perhaps we have been looking in the wrong places all along.  The secret to living well has been right in front of us, on Saturday evenings, at the Bingo tournaments.

 

Words

The third DBlog Week topic, Language and Diabetes, is one that hits close to home for all of us.  Currently, I’m saving many of my thoughts on the topic in anticipation of Stanford Medicine X in September.  At MedX, I will be participating in an ePatient panel on mental health and chronic disease, and language will surely be discussed there.  We hope you will join us- whether physically at Stanford, or virtually!

In the meantime, please see here for some prior thoughts on the words we use, and how we should use them.

 

We hear you.

Many thanks to Karen Graffeo of bittersweetdiabetes.com for organizing the 7th annual diabetes blog week.  For more information about dblog week, please see here.

I am not normally one to be short on words, but this week is a bit hectic for me.  (Head nodding along to Laddie’s great explanation.)  Karen has given me permission for stress-free participation, so here it goes!  🙂

Today’s prompt is the following:

“Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)”

I am in the diabetes blogosphere because my life is happier being in it than being outside of it, and I hope that in my own small, empathetic way I have given back to others by being a part of the #doc.

“Dblogging” is responsible for verbs such as, well, “dblogging.”  It creates a community of passionate healthcare advocates, a place to call home when diabetes tries to turn our worlds upside down, and hope for a better future.

The #doc has led to supportive friendships both online and offline, both in our own backyards and all over the world.

BetesOnTap selfie

It is an honor and a blessing to read the deepest thoughts and the most lighthearted inside diabetes jokes that each of you shares on your blogs.  Your companionship in the carrying of the diabetes cross humbles me to my core.

Very Light, No Sugar’s words go out to the diabetic online community.  I also hope that those words somehow reach the lonely, confused diabetic kid that I once was.  I hope that someone who is not yet actively involved in the #doc knows that he or she has a place to come home to when diabetes feels like a lot to carry alone.

I blog for my own emotional well-being, for the #doc friends who are like family, and for those who do not yet have a voice or do not know where to begin.  The #doc door is always open, and I hope that you will join us if you are ready and able to do so.

It may feel like the world is not always listening, but in the diabetes blogosphere, we hear you.