WEGO Health’s 2016 Health Activist Awards

If you feel so inclined, I would greatly appreciate your endorsements for my nominations to WEGO Health’s 2016 Health Activist Awards.  In my opinion, we are all health activists by virtue of being engaged in our own healthcare stories, as well as being supportive members of online (and even offline!) communities.  Your interactions over the past 2 years have been invaluable to my healthcare journey, and I hope that I have offered that same level of support in return.

To endorse me, please see the link here.

Many thanks to WEGO Health for all that they do to make healthcare better!

 

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Image credit: WEGO Health

Not-So-Terrible-Two’s

Very Light, No Sugar has reached its second blogoversary.  Although I find myself wondering how time has flown by so quickly, that simply means it’s been a fun two years.  In 2015, I had a lot to say at this time.  This year, I will keep it short and sweet.

Thank you to those who have visited my website over the past two years.  When starting a blog in 2014 from a tiny apartment in Rhode Island, I never imagined that people in 73 different countries would visit my little corner of the internet so far this year.

Although 2016 has brought some diabetes frustrations along the way, I am comforted in knowing that we have honestly shared our stories with the world.  Someone out there who needs to hear our words is listening.  The #doc and other healthcare arenas are platforms by which we can give a voice to a greater purpose, where we can make the decision to be good despite the bad that life throws at us.

Your faith and support on the bad days make the diabetes cross a lighter weight to carry.  Your genuine kindheartedness makes the good days that much sweeter.

I still daydream about the day when I will celebrate blogoversary # XYZ and get to write that our communal efforts cured diabetes that past year.  In the meantime, I am simply happy to have found your support, and hopefully to have offered some back in return.

 

Forever lifting my coffee mug to you,

Ally

XOXO

 

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Localized Empathy

Boston traffic sucks.

Especially in the summertime.

To save myself some unnecessary frustration, I did something that I do not normally do: booked a few local medical appointments here in Rhode Island.

Don’t get me wrong: In my graduate studies I met many nurses and healthcare folks who work in our small state and do a darn good job making patients well.  But, having begun my care in Boston at a young age, I historically stuck with the endearingly-nicknamed “Mecca of Healthcare” for my treatment.

An hour commute is a small price to pay for the best healthcare on earth.  I grew up in the Joslin waiting room, watching families fly in from all over the world to seek help for their kids.  I accompanied my #MedX bestie, Danielle Edges, and her brave daughter, Alex, when they traveled to Boston Children’s Hospital from Phoenix, AZ, earlier this year.  Trust me: Boston has it going on, and I am always cognizant of how blessed I am to live relatively close to these topnotch facilities.

The problem, though, is that my trips have not been an hour commute for as long as I can remember lately.  Between traffic coming from and going to Boston, as well as time with the provider, I am usually gone for 6 to 8 hours per appointment.  The bags underneath my eyes were growing larger by the day, and my attitude was strained.  I needed a break.

So, I made a pact with myself: For reasons of self-care, I would book some “non-essential” appointments back home in Lil Rhody.  While every medical appointment is certainly important, the urgency is not necessarily there for this local stuff, versus the “essential” diabetes tune-ups that I receive in Boston.

One hot afternoon in July, I gulped down my coffee and headed inside a RI dermatologist’s office.  I have experienced itchy-then-painful blisters on my hands since childhood, and no doctor has ever been able to crack the code.  If the best providers in Boston specializing in autoimmune disorders don’t know, how will anyone else? I naively wondered.  But, with the commute being a mere 15 minutes, it was worth a shot.

I arrived early to fill out new patient paperwork as instructed.  Parking had been easy- no expensive, overfilled parking garages.  The receptionist and intake nurse were both friendly.  And finally, it was time to see the doctor.  She was kind and concise.

“Do you have a blister right now?”

“Yes.  It’s healing,” I replied, extending my hand for further inspection.

“Oh, I know exactly what this is.  It’s dyshidrotic eczema- common in diabetics.  I’m actually shocked that you went through decades of your life with no diagnosis for this; how awful!  I’ll prescribe you some hydrocortisone creams which should help,” RI Doctor advised.

+1 for the local expert!  

I am a little miffed that Boston dropped the ball on this for so long, considering I looked like a burn victim who couldn’t hold a pencil in third grade due to the severity of the blisters.  However, I am SO grateful to finally have an answer and effective treatment options!

Then it was time for the mole check.  Melanoma does not discriminate between right arm or left arm, right butt cheek or left butt cheek.  Almost every inch of the body is observed to ensure safety.  Smart, yet still kind of awkward…

“Just so you know, I’m wearing a…” I began.

“A thong?” RI Doctor replied.

We’ve seen it all, honey, the observing nurse thought.

“Actually, it’s a continuous glucose monitor for my type 1 diabetes.  It’s on my…”

*Ten seconds later*

“Oh!  Good thing you warned me!”  RI Doctor exclaimed, having located the sensor where the sun doesn’t often shine.

As odd as it was to have a conversation while naked in a room among new acquaintances, the professionalism and thoroughness of the doctor made the experience more bearable.  I felt at ease knowing that the eczema- which has for years induced a stress response in my body, and, therefore, my BGs- would finally be tamed, and that the funky mole on my ribs was nothing dangerous.

“When were you diagnosed with type 1?” RI Doctor asked.

“Just before my third birthday.”

“And your parents caught it early?”

“Early enough that I survived.  But I was in DKA.”

And then I thought again about the little boy whose name I still do not know, who passed away from complications of T1D diagnosed too late, just a few days before my arrival in the same ER.

“Wow.  That must have been so hard,” RI Doctor wondered aloud.

“Yeah…”

“That must have been so hard.  It is so hard,” she pushed.

“It is…” I admitted.

 

And there it was: the truth, exposed.  Diabetes is hard.  But we’re still fighting.

Sometimes localized empathy makes all the difference.

#weneedacure

 

Feedback to Feed Forward

September will be here before we know it, and I am excited to share that I will be returning to Stanford Medicine X (#MedX) as a junior member of the ePatient advisory panel.  Additionally, I will be presenting in a panel entitled “Ah-Ha! moments in mental health and chronic disease management” alongside wonderful advocates Alan Brewington, Kristin Coppens, Danielle Edges, and Mark Freeman, and moderated by rockstar Charlie Blotner.

Accepted MedX 2016 presentations can be found here.  Our abstract includes the following information, some of which is quoted below:

“Mental health and chronic disease management are often interwoven topics in science. But what about the human side of the story? Whether or not individuals meet the diagnostic criteria for mental diagnoses, we all long for optimal mental and physical health to attain good quality of life.

How do we put a personal face to the feelings that hypoglycemia, or chronic pain, or other physical health struggles invoke in terms of our emotions? What moments have changed the way we think about mental health and chronic disease, and how can we encourage these same poignant healthcare interactions in the lives of others?

This panel will explore just how vital this conversation is in chronic disease and mental health management by featuring multifaceted patient, caregiver, and mental health advocate perspectives. In order to facilitate this conversation for all patients, we must raise the topic from the very source: ePatients themselves. Therefore, this panel is ePatient-centric in its selection of presenters. We will identify crucial learning moments in understanding our own mental health, while promoting a transparent discussion that remains much-needed in humanizing healthcare.

…Ah-Ha! moments relevant to the following topics will be discussed:

  • Why the words we use matter so much
  • Barriers to care
  • Continuum of “before, during, and after” mental health becomes a focus of care management; early intervention in normalizing this conversation
  • Caregiver resources and how to talk to children/teens about difficult health topics
  • Managing multiple diagnoses
  • Curtailing advocacy “burnout””

Source (linked here): MedX 2016 accepted presentations, “Ah-Ha! moments in mental health and chronic disease management.”

In preparation for our upcoming panel, we wanted to reach out to our respective advocacy communities to see if there are pertinent points that you would like us to consider and to possibly discuss in the panel (time-permitting).  I recently wrote about the diabetic online community (#doc) needing to hear more from “The Whole” in diabetes, and this is a good platform by which to reflect upon feedback from multiple sources.  While one presentation cannot represent all affected by health conditions, we can try our best to integrate community viewpoints into what we discuss.

With that said, if you have ideas about mental health and chronic disease of any type, please feel free to contact us.  We would love to listen to your perspectives!  My contact information can be found here, or feel free to comment on this post if you are comfortable sharing your thoughts publicly.

Thanks for your support!  We are so looking forward to MedX!