Month: August 2015

“Uh-huh.”

When I adopt my future child (see here), the phrase “uh-huh” will probably be worthy of a “Swear Jar” donation according to Ally’s Little Book of Rules.  (All proceeds will go directly to diabetes research- let’s chill out, please!)

“Uh-huh” offends me not because of what it says, but because of what it does not say.  It is an empty phrase which does not even pretend to hide its indifference.

I will be the first to admit that I tend to get overly excited about nerdy diabetes-related things.  I follow diabetes stocks and press releases on my cell phone, enthusiastically peruse the blogosphere, keep up with DiaTribe and DiabetesMine articles, and look for every opportunity to discuss the information I devour.  I have pledged to my doctors on many occasions that I will take a break from healthcare information overload, but it proves to be a difficult task when fighting for your health every day.  Diabetes and healthcare are interests which are inextricably intertwined with my very existence.  They are not the totality of who I am as a person, but they are passions of mine with very stubborn “off” switches.

However, diabetes and healthcare are not everyone else’s passions.  So when I am rambling on and on at happy hour about the latest blood glucose meter technology or that one time I ate the entire carton of ice cream during a nighttime hypoglycemic episode, I need to take a step back and realize that others may not be quite as into this stuff as I am.  Fair enough.  If I could be cured of diabetes tomorrow, I would jump at the chance.  Although I suspect that my interests in diabetes and healthcare may not subside once I am cured, I would not mind finding a new, less serious interest to take up some of my time.  Badminton, anyone?

“Uh-huh” is suitable if I am boring you at the bar with a story that you do not really care about.  “Uh-huh” is not acceptable if I am talking about something deeply emotional that affects my health.  Dexcom software upgrades are one thing, but my personal health triumphs and tribulations are quite another.  If I am describing a diabetes incident that spooked me or a frustrating few days of persistently high blood sugars, I am opening up to you because I want you to hear me.  I trust you.  I want you to value what I am saying as important, to empathize, to not pretend that you know the answers but to simply be there for me nonetheless. 

When you say “uh-huh” on the other end of the phone and change the channel on the television running in the background, what I hear is not “uh-huh.”  Instead, the message conveyed is, “I am sick of this same old story.  Diabetes sucks.  I get it.”  You know what?  It does suck.  And it may continue to suck.  It’s diabetes, and it’s a selfish jerkface.  Sure, I have experienced a rough year of diabetes transitions (insulin pumping to MDI to every emotion felt along the way), but I do not get to “uh-huh” away this disease.  I sure as heck hope that it is not especially difficult every day until there is a cure, but sometimes there are long stretches of time where diabetes is a royal pain in the a$$, whether or not we are talking about Lantus burn at backside injection sites.

We are all human, though, and I caught myself “uh-huh-ing” a friend last week.  My coworkers and I are working from home a majority of the time now, a nice perk for those of us who require multiple cups of coffee before we are properly-functioning each morning.  The downside to working at home is that we do not have one another within walking distance if we need help.  Recently, my friend (let’s call him Jason) called my cell to seek advice on a difficult case.  My blood sugar was a bit rocky in that moment, and I felt the familiar brain fog that accompanies those overtired, rollercoaster health days.

“I’m thinking if we use this regulation, I should be denying this issue,” he said.

“Yeah, but I just emailed you the updated guidance.  We can grant benefits only if that particular symptom is present, which it is here,” I replied, as we went back and forth with medical evidence and legal stipulations to try to make the right decision.

The more we interpreted the guidance on the case, the more I found myself nodding and saying, “right, right, uh-huh” as I clicked through online documents, only half-paying attention to what Jason was trying to tell me at this point.

Frankly, I had made up my mind about what we should do on the case five minutes earlier, and I wanted him to be on the same page.  Eventually, our viewpoints fell somewhere in the middle and we were able to move forward.

The moral of the story is that everybody “uh-huhs” now and then.  At times, I am guilty of what I am critiquing here, too.  So what are we going to do to fix this?

Society often incorrectly relates empathy to having actual experience in the particular situation occurring.  For example, a cancer patient can empathize with another cancer patient, but a person untouched by illness cannot offer any valuable input.  I do not personally believe this.  First off, every person’s cancer or diabetes or death of a parent or any other difficult cross to bear has its own nuances.  We are all different people from different backgrounds with different struggles.  But the common denominator is that we are all human beings.  Because of this, we all know how to empathize.  It does not mean that we have to experience carbon copies of one another’s pain.  Rather, we simply have to offer up messages of support.

Instead of saying “uh-huh” when I describe an aggravating diabetes day, say something like, “I’m sorry.  That sounds so tiring.  Let me know if you need to chat later.”  Please listen.  If I wanted to talk to an empty space, I’d jump rope to the beat of a diabetes jingle or throw a tennis ball against the wall while collecting my thoughts.  But instead, I have chosen to tell you, someone who is so important to me and my diabetes fight.

Acknowledge my pain, but do not feel like you have to magically erase it for me.  Do unto others as you would have them do unto you.  Nowhere in that verse do I hear the phrase “uh-huh.”

I pledge to support you in the same ways that I want to be supported- devoid of “uh-huhs” but generous in understanding.  If I do not know what to say, I will attempt to think twice before muttering an empty rationalization.  “At least it’s not XYZ” belittles the struggle.  Instead, I’ll speak the truth next time: “ABC is very difficult.  Please know that I’m here for you.”  We cannot suddenly cure illness overnight, but we can make a more concerted effort to see each other through tough times.

From now on, let’s walk together, instead of “uh-huh-ing” each other.  Promise? 

Before #MedX

Last year’s Stanford Medicine X (#MedX) took place during the same weekend that I created my diabetes blog, Very Light, No Sugar. I was new to the internet blogosphere in September of 2014, and I spent much of my time that weekend soaking it all in.

This exists?! THIS! These concepts that have been bouncing around in my head for so long have a place and a name and a community?! Perhaps I can be part of it? Everyone seems friendly and cool! YES!!!

These were my initial thoughts as I perused the blogs of the diabetic online community (#doc) and followed the #MedX hashtag as ePatient delegates and other MedX attendees tweeted live from the conference. I later watched videos of the MedX 2014 speeches, read blogs of MedX alums, and visited and re-visited and re-visited some more the 2015 ePatient application portion of the Stanford Medicine X website.

I made the rookie mistake of writing 1,000-word answers to the MedX application instead of providing 1,000-character responses as instructed. Upon discovering this issue, I stripped my answers down to the core of why I felt so passionately about this conference and improving healthcare, and I finally clicked “submit” late one evening. Fast forward to now- about five weeks away from MedX 2015- and I could not be more excited to be an ePatient delegate this year and to share the information absorbed at the conference with all of you.

MedX is so special because it takes the “What if’s?” and does not shy away from them in fear.  Rather, MedX imagines and creates the possibilities.  MedX connects the respective patient, provider, and technology dots of the healthcare equation by putting them all together at the same conference.  They are allowed to work together, to dare to dream big, to share the positives and the negatives of their personal healthcare experiences, and to learn from one another in the process.  Recognizing that healthcare is an ongoing evolution, MedX keeps the conversation going before, during, and after the conference.

Many MedX alums have noted how much their lives were positively-influenced by attending MedX. With the conference just around the corner, I find myself keenly aware that this is the “before” stage for me. I study healthcare, work in it, live it through my experience as a type one diabetic, and have moments of inspiration and frustration along the way. After attending MedX from September 25 through September 27, 2015, I will gain a viewpoint that covers a vast array of healthcare experiences- those of other patients, those of providers, and those of technological gurus and innovators in the healthcare field. This will be the “after” stage. I already know that this opportunity is a blessing beyond what I can imagine right now, and I am so very thankful to get to attend MedX 2015.

I am most excited about learning from different perspectives while at MedX. Although I know a lot about diabetes because I live with it, I recognize that healthcare goes far beyond insulin injections and endocrinology. At MedX, there will be industry leaders discussing breakthroughs in technology, ePatients who have battled brain tumors or acted as caregivers for their loved ones, and providers who put their patients’ best interests first and foremost. Taken together, all of these contexts are a valuable asset to improving healthcare as a whole.

The fellow 2015 ePatient delegates to MedX are a great crew of people, as are the Stanford Medicine X administrative team and advisory board. MedX participants come from diverse backgrounds, encounter different health obstacles, and have unique experiences from which to draw from. Yet we share an unspoken comradery before even having stepped foot on the Stanford campus. We have put ourselves out there online because we believe wholeheartedly in improving healthcare. We advocate for better access to care, more open dialogues amongst all members of the healthcare equation, promising futures for those who endure our respective disease processes, and more. We know the feelings of joy on the good days and pain on the bad days, and we maintain hope that the best is yet to come in the future. MedX provides the perfect environment in which to work hard towards these goals and to be a part of the conversation about improving healthcare.

For more information on Stanford MedX, please visit medicinex.stanford.edu.

 

Disclaimer: I have received a partial scholarship to attend MedX as a 2015 ePatient delegate. Opinions expressed here are strictly my own.

Adoption

Since I was very young, I’ve always said that I wanted to adopt a child.  Over the years, decisiveness has not exactly been my greatest strength, though.  Should I wear the grey dress, or the multicolored one?, Which school should I attend?, and other life choices have waged epic pros and cons list battles within my mind.  Yet adoption is a topic I have never really wavered on.  I want to do it- when the timing is right.

At this moment in time, it is not right.  I need to finish grad school and make major strides in improving my own health, for starters.  I also just need some time to enjoy what remains of my twenties.  Perhaps (probably?) I will continue with school after I finish my Master’s degree?  Realistically, adoption is many years away.

That does not stop me from occasionally Googling “adoption” and perusing the regulations and the steps of the adoption process, as well as the stories of families made whole by the addition of the adopted child.  I want to make sure that I keep that adoption dream alive somehow, that I one day can give back to another human being in a way that is beyond anything I have ever done before.  And, I imagine, that human being will in turn teach me a thing or two (okay, tons of cool things) along the way.

Years ago I attended an outpatient program focused on fine-tuning diabetes management skills.  The participants spent a week bonding with one another and working through our respective diabetes challenges.  This was prior to my #doc involvement, and it was the first time I felt the void inside me filled with what I had longed for all along: connection with others who understood.

While at dinner one evening, I mentioned my guilt about my mood swings associated with wacky blood sugars.  Was it fair to my family and friends?  Would it be fair to my future children?  I went on to talk about other anxieties.  What if one day my vision were to suffer as a complication of diabetes?

Judy*, one of the program participants and a proud mother, looked me directly in the eye and said, “Honey, you need to have children.  You won’t have time to worry so much about yourself then!”

She meant it both in jest and in seriousness, and that is why I respected her so much.  Judy had a certain aura about her- wise, outgoing, and elegant all in one.  When she spoke, you paid attention.

Many years removed from that moment, I still know that Judy is right.  In order to truly find myself, I have to become selfless.  When the day finally comes to adopt, only then will I fully understand Judy’s advice.

In the meantime, I think it is okay to maintain certain dreams, even if they seem far away.  I daydream about the diabetes cure party often.  I wonder about future graduate programs or job prospects.  There is no harm in dreaming big.

Adoption is definitely at the forefront of my mind because of diabetes.  Additionally, I have a wonderful cousin who was adopted and is such a blessing to have in our family.  Realistically, I am not sure that my diabetes management will ever be consistently safe enough for me to have a healthy pregnancy for myself and my child.  It is not impossible, though.  Perhaps in time things will change.  It does not have to be something permanently erased off my chalkboard of life plans.

I try not to dwell on it, but I admit that not dwelling on it is an easy way out considering I am far away from starting a family for various professional and academic reasons.  There’s that whole marrying a soulmate thing, too.  But I still think that adoption will be a route that I pursue, whether or not I also get married and have biological children at some point.

I do want to highlight that without diabetes, the blessing of adoption may not be something that I would be considering as a serious future endeavor.  If not for diabetes and my cousin’s great example, both myself and my future adopted child could potentially miss out on a wonderful opportunity to be a family together.  When the time comes to adopt, we may not choose each other if diabetes had not chosen me many years ago.

We say it often: Diabetes gives us perspective.  I see that here, especially.  Some of these topics are quite emotional for us.  I must admit that it feels a bit odd to write a blog post about something that I have not yet done; rather this blog is about something that I plan to do many years from now.  But putting it down on paper makes the concept more real.  Maintaining hopes and dreams despite diabetes being a big jerkface is one of our best assets in showing diabetes who the real boss is.  Whatever your future goals may be and however far away they may seem, keep that faith alive somehow.  Often God will surprise you with the right answer or opportunity when you least expect it.

*Name changed for privacy reasons.