2.

My 2-year-return-to-insulin-shots-anniversary came and went a few weeks ago.  The anticlimactic day was all the validation I needed to know that this was the right choice for me.  I no longer count down the days, weeks, or months on shots; they are my new normal until I switch things up again or diabetes is cured.

People probably wonder why I still harp on my defective insulin pump saga, and the truth of the matter is that one can talk as much or as little about trauma as one sees fit.  Medical trauma is particularly cruel; our already-limited “control” further fades away as our cells cry out for insulin.  I continue to harp on this because the wounds are still fresh, however many years after the triage.  Yet the bandages of an engaged healthcare team have eased the pain, and I finally feel better.

Two years ago I feared that I would die of ketoacidosis while sleeping on my couch.  I worried that the graduate school experience I had always dreamed of might slip between my fingertips.  Or worse, that the mental desperation would become too much- that in my attempts to be heard my voice would eventually fade away.

Multiple daily injections (MDI) are not always pretty, but they are a guarantee that insulin is getting into the body.  MDI is literally and figuratively another shot at life.  (More to follow, but not everyone has this guarantee currently; they deserve a chance, too.)

Two years later and I have successfully completed my Master’s degree.

I flew to California twice to participate in Stanford Medicine X.

I didn’t die on my couch.

And I was too busy living to remember that it was my 2-year Shotoversary.

Insulin makes it happen.

graduation-tulips

 

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!

 

#NoFilter Coffee?

In my enthusiasm for the start of DBlog Week yesterday, I did not give a proper shout out to Karen Graffeo until the Comments section of my post.  I’d like to rectify that here.  This is my first DBlog Week, and I am absolutely loving the discovery of blogs that I did not know about beforehand, as well as hearing from my usual favorites.  How cool is this community?  Seriously.  It’s bursting with goodness this week.  I am sure that organizing DBlog Week involves tons of hard work on Karen’s part.  Not only that, but every time I go to comment on a post, I see that she has already left her words of wisdom behind!  What a great example of giving back to this powerful community.  Thank you, Karen!

Here’s my take on today’s theme, “Keep It To Yourself”:

Those of you who read my blog or follow me on Twitter already know that I wear my heart on my sleeve and I speak with #nofilter in the heat of the moment.  There are some things that I have been rather coy about, though.

When I first began blogging in September 2014, I vowed to be transparent, and I still uphold that promise.  Sometimes it makes me feel like I need to share everything, though.  Realistically, I can be honest and helpful in the diabetic online community without jeopardizing the privacy of those who have not necessarily signed up to be featured on a diabetes blog.

When I was in high school, I used to hide behind bathroom stall doors when taking insulin injections.  My classmates did not know that I was diabetic until the end of my freshman year. I built up my “diabetes coming out party” so much in my head that I turned it into a much bigger deal than it was in reality. Once I was cool with diabetes, everybody else was, too. For the sake of living my life with more ease and with more safeguards in place in case of an emergency, I eventually disclosed that I was diabetic. A weight was immediately lifted. No more hiding syringes in my coat pocket. No more making excuses about why I had to sit out for a few minutes at soccer practice while my blood sugar came up from a low. The rest is history. Now ya’ll can’t shut me up about diabetes, right?

We all come to terms with diabetes in our own unique ways. Some people may always choose to be private about diabetes. Others might spread the diabetes Gospel loud and proud. We are all individuals, and just because I am outspoken about my life with diabetes does not mean that it is the right path for someone else to follow.

  • I have a type one diabetic relative who I have alluded to at times.  For the sake of my relative’s privacy, I do not mention personally-identifiable details online.  While my relative is not necessarily shy about diabetes, I also do not feel that it is my place to tell my relative’s story. It is not my own story to tell. If/when my relative ever wants to get involved in the #doc, I will always support that choice. But ultimately that choice is up to my relative, not me.
  • I also hint at my employment duties at times, not necessarily because I have some big, fancy, secretive job, but more because in a selfish way the #doc for me represents a little cocoon in which I go to seek comfort and strength. If I mingle my professional life with the #doc, it loses that element of “everybody gets it here” that I have grown to love. This is not to say that diabetes and professional lives do not mix. Heck, there are plenty of #doc success stories to show that one’s passion can become a great job. This is just where I am here and now, and right now I need the unconditional support that I find in the #doc. No strings attached.
  • I have never named my personal doctors and nurses on my blog. They did not sign on the dotted line to become the heroes that I describe in my writing, so I do not give their identities away. They may be humble about what they do, for example. I try to respect those boundaries. This is not to say that I would not disclose that information in the right moments. If someone lived in my geographic area and thought that my personal doctor could help him/her, by all means I would ask my doctor’s permission to pass along contact information. The point is similar to what I noted above with my diabetic relative: I try my best to respect that perhaps others do not want the spotlight on them.
  • My tweets have also been vague regarding the topics of mental health and sexual/physical assault, also out of respect for friends near and dear to me who are some of the strongest people in the world. Just know that I support their advocacy causes wholeheartedly. Society is starting to turn the corner on stigma in these situations, but we still have a heck of a long way to go.

With the final point in mind, I invite you to foster a Coffee Convo with someone who may need it.

It is okay to have #nofilter. But sometimes we do not need to yell things from the rooftops to get the job done. We can respect others’ privacy and still show the world that we care. I kindly ask you and your coffee cup to do so.

Hey, that’s mine. And I’m taking it back!

I must confess that I haven’t been in a “very light” mood this week.  It’s a combination of PMS, a pesky chest cold, and the manner in which they catapult my blood glucose to the stratosphere, stuck no matter how many tears I dry or units I bolus.  It’s diabetes at its most vindictive: Ha! Your bazooka-bolus will drop you a whopping TEN mg/dL!  This in turn causes me to feel badly about my irrational BG “failures,” as well as my subsequent grumpiness.  I tried to take a Twitter hiatus as the Catholic grammar school mantra, “If you don’t have anything nice to say, don’t say it,” rang in my ears.  I woke up the next day to a few private messages from well-wishers (thank you- you know who you are), and I realized that instead of hibernating on Twitter perhaps I should open myself up to that support.  After all, it’s the signature of the online communities that I have grown to love.

#BellLetsTalk tweets and blog posts inspired me during my figuratively “extra dark coffee, loaded with sugar” musings.  It is humbling to see that so many people worldwide shared their deeply personal stories during this Canadian mental health effort, and by doing so they inspired others to seek support and to perhaps share their own stories, too.  #BellLetsTalk celebrates these strong, courageous souls.  I could feel the societal stigma lifting as I perused their words, felt their pain as a fellow human being, and admired their strength.

When Sophie- the talented blogger of Writing Possibility whose honesty and eloquence in writing make her one of my favorites in the #doc- invited me to participate in the Take Back What’s Yours campaign, I knew that this was an opportunity to empower myself during a week where diabetes was making me feel especially vulnerable.  Take Back What’s Yours is an effort launched by Chloe’s Concept encouraging readers to take back something good that may have been lost along the way during life’s tribulations, such as a hobby that brought joy or a sense of hope.  If you feel so inclined, please join us in taking back what’s yours.  Let’s celebrate ourselves in the spirit of #BellLetsTalk and #TakeBackWhatsYours.

Here’s what’s mine, and I’m taking it back:

Note: You’ll get the gist of it as you read each paragraph, but in certain circumstances I am “taking back” in the sense of regaining my footing with something I have struggled with.  I am taking it back in that I am conceding that it happened, but I will not allow it to occur anymore if possible.  In other circumstances, I am “taking back” positive things that I have lost sight of recently.  While the hashtag’s meaning may have been slightly altered for purposes of this blog post, I think the theme of #TakeBackWhatsYours is still alive and well here.  This is the best way that I can express the hashtag in terms of my individual trials in life.

1.)  From a point-forward basis, I am taking back the nights that I went to bed hungry as an employed, educated American woman.  I have been blessed enough by my current circumstances in life to be able to put food on the table; now it’s time to enjoy it again.  I do not fit the stereotype of a starving child in a third world country far away from here, but I have been far too familiar with hunger due to the aftermath of faulty insulin pump sites and the fears running rampant in my own mind.  Food is not the enemy.  Insulin is not the bad guy.  And I am fully capable of doing this, no matter how scary it seems.  I will not go to bed hungry any longer.  This means I must make some concessions: bolus larger amounts of insulin before bed; eat when my blood sugar is higher than I would prefer for it to be going into a meal; learn that it is okay to see some slightly-skewed blood sugars during this time of growing; share my story in case someone out there is hungry for the same reasons.

2.)  I am taking back the “set in stone,” predefined amounts of insulin that have so dictated my dosing for many years.  Each day with diabetes is different, and insulin needs to reflect this.  I will be more flexible.  I will email my doctor about the mini-successes.  I will celebrate them.  And I will pledge to keep trying.  If the dose misfires, well, I have enough experience to know how to handle it by now.

3.)  I am taking back feeling guilty about my feelings.  From day one of creating this blog, I promised to be authentic, and I believe that I have been.  Sometimes the #nofilter thing makes me feel like I’m wearing my emotions on my sleeve too much, but I wouldn’t be me if my sleeves weren’t a little dirty.  I am taking back being too hard on myself for a tweet that I perceived as overly-cranky or for fear of annoying others.  We all annoy someone at some point at some time.  If we are in the wrong, we can apologize and move forward.  But if we walk the line of keeping too much to ourselves, we aren’t allowing others in as much as we should be.

4.)  I am taking back my former joys and living in the moment.  I will recognize that I am more than diabetes and health care advocacy.  While these are enormous passions of mine, I also need to take some time for myself to try new things and to chill out with my own thoughts.  Always being on the go and jumping head first into the next project are qualities that have helped me to succeed, but reading a book for pleasure or grabbing a beer after work with friends on a Wednesday night are also ways in which I can obtain happiness.  There doesn’t always have to be a goal: an A1C target, a certain GPA, a defined objective measurement of success.  Instead, there can be some down time to relax, to connect with the people around you, and to be present in life.  It is fine to be hardwired to “busy and productive mode,” but setting aside a few hours a week for other enjoyments is crucial to long-term health and happiness.

5.)  I am taking back my ability to allow others in to help.  As a diabetes-induced defense mechanism, I have handled things on my own for a while now.  When friends try to help, I’m initially willing to talk their ears off about diabetes, but by the end of it, I’m usually saying things I don’t mean to say out of frustration.  The more open I become, the more vulnerable I feel, and the more I can’t seem to come to grips with it.  For the sake of my relationships, this nonsense has to stop.  As much as I want to act tough and invincible, the reality is that there will be times where diabetes has a strong hold over me.  Why not accept the support others are so generously trying to give me, even after I have pushed them away?  These are clearly goodhearted people, and I should be counting my blessings instead of running from them.