On Advocacy

Life has been chaotic this year, and my own versions of advocacy have gone along for the up-and-down merry-go-round ride.  I still want to blog about the insulin access workshop from April.  Yes, April.  (Insert disclosure that Lilly paid for my travel, hotel, and meals).  There is so much to say and so little time to beat a figurative dead horse (which died from lack of insulin, in this figurative example).  Yet I will express it at some point, because 1) I promised our community that I would, and 2) I am still wowed by my peers and those with big hearts who are dedicated to improving life with diabetes; these big hearts come in all shapes and sizes in healthcare; the workshop reinforced that idea for me.

There have been other exciting opportunities, too, and the blog posts have been drafted and re-drafted in my head for a long time now.  I believe mentioning these feelings here is advocacy in and of itself.  Sometimes this part of the merry-go-round of life simply is what it is.  Advocacy can wax and wane and broaden and refocus as life dictates.

Reading and watching and writing poetry have encompassed a different avenue of creative expression for me.  Poetry is freedom.  Just go.  It’s funny where and when the roots of an English major choose to spring up.  I’m just happy to be writing in some capacity.

At a recent event with close friends and their families, one ventured to ask about diabetes advocacy.  To respect privacy in this story, let’s call her Friend.  Friend’s relative (let’s call her Relative) has dealt with type 1 diabetes for a large number of years.  Diabetes remains difficult despite the gadgets and gizmos of 2017; I cannot imagine how tough it was way back in the day.  Relative has faced her fair share of adversity in this life.

Friend’s daughter (let’s call her Daughter) explained, “Ally does a lot of diabetes advocacy work, and it’s really cool.”  That statement shocked me back to reality, in a good way.  Someone out there, aside from #DOC folks, actually cares about this!  

I mean, I know people care. But it was refreshing to hear this outside of #DOC-land. There are people who look to our examples of advocacy and find hope. How humbling and, indeed, cool.

Friend was visibly excited to talk to me, and, likewise, I was inspired by her openness and respect for our community.  Another round of drinks later, and there we still stood, steadfast in our shared mission.

“Why isn’t there a cure yet?” reverberated in our ears.

I have asked myself, God, and anyone who will listen that very question in the long 26 years since my type 1 diabetes diagnosis.  To have someone else inquire the same of me was a long time coming.  Not that anyone is to blame, per se.  We all want a better world, one in which diabetes is buried with the dinosaur fossils.

But truly, why isn’t there a cure?  We have the brain power.  We have the amazing labs working steadfastly to help us.  We see the faces of loved ones who represent why #weneedacure.  My two cents are that we remain fragmented in an already-divisive society.  We need to rally together and maintain hope that one day a cure will come.  We are good eggs with sometimes-different goals, and that is okay.  But our goals should center on paving the way for a better world- whether with diabetes, or (hopefully) without it.  My response to Friend was something along those lines.

“Why are people dying because insulin is not affordable and accessible- not just abroad, but here in the United States, too?”

We discussed the name Shane Patrick Boyle.  Keep saying his name.  We talked about how diabetes advocacy is moving the dial on this issue, but we cannot rest yet.  This disease is absolutely relentless.  We have to keep showing that.

Friend and I left the event table knowing that we both still had seats at it.  There is work to be done.  Engagement in advocacy is fluid; such is life.  But sometimes it takes seeing the other people affected by our work to know that we are advocating beyond ourselves.  That is why we started this in the first place, and that is ultimately how we will finish it- together.

Thank you to Friend, Daughter, and Relative for reminding me why we do what we do, and for your loving support.

 

 

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Hope in November

No, this isn’t another corny November election pitch.  I’m talking about hope during National Diabetes Awareness Month this November.  What better way to foster hope than to write letters to the families of newly diagnosed T1Ds?  You can learn more about @mumoftype1’s (Maureen’s) kindhearted project, Letters of Hope, by clicking here.

This is my Letter of Hope:

Hi!

Firstly, I want you to know that whatever you are feeling- anger, sadness, fear, anxiety, exhaustion, cautious optimism, a mix of all of the above- is totally okay.  Even many years removed from the hectic time of a type 1 diabetes diagnosis, you are still allowed to feel these things and to express them out loud, if you so choose.  Not everyone will “get it,” but some good eggs will rise to the occasion and offer support.  The aspect of diabetes that is not discussed enough is how you will see the light in others, and yourselves, more clearly now.  Empathy is just as important of a prescription as insulin.

With empathy in mind, I would like to share some diabetes advice that I wish my family had received upfront:

Life will go on, with some adjustments intertwined to ensure safety.  If your child was diagnosed with T1D, allow him/her to go to diabetes camp, or sleepovers, or field trips.  Have a preparedness plan in place: extra diabetes supplies packed, phone numbers to be reached in case of emergency, teachers who are aware of the diagnosis and know the basics of how to help.

Freaky diabetes situations will pop up from time to time, but trust in your knowledge and abilities to take care of things and to move forward.  Sometimes diabetes just has a mind of its own and you did not do anything wrong to deserve it; every new morning is a “reset button” where you have a clean slate to try again.  Above all else, your child will still get to be a kid, to enjoy school and sports and playdates.  If you are the type 1 diabetic of any age, you will continue to be the person you were before diagnosis.  Your perspective will change for the better; suddenly you will understand just how strong and resilient you are.

Words matter.  We “check” blood sugar, as “test” implies pass/fail.  “Manage” rather than “control” diabetes.  Remember that blood sugar numbers are not “good” or “bad”; they are a guide for making informed treatment decisions.  The person’s character is never implicated by a wacky blood sugar value.  It’s type 1 diabetes; wonky numbers will happen, and you will handle them- sometimes gracefully, other times not so much.  Remember that your job as a person with diabetes, or as a caretaker, is more complex than most people would ever realize; go easy on yourself.

Offer guidance in a supportive manner, rather than lecture.  The islet cells have misbehaved, leading to type 1 diabetes; but the person is never to blame.  Even if there are days where diabetes management seems to slack, remember what it was like to be a teenager yourself.  Be understanding.  Do not try to rewrite the diabetes wheel all at once.  Hone in on one time of the day that seems to need improvement- breakfast, perhaps- and start there to make the process manageable.

Diabetes discussions are inevitable, as you may collaborate on insulin dosing decisions, carb counting, and similar technical items.  Yet once you sit down for a family meal, try to leave diabetes behind.  T1D gets enough air time each day.  Dinner is for enjoying one another’s company, laughing about the funny anecdotes from work or school, being a family that is so much more than the diagnosis of a health condition.  Reserve that time for yourselves.  Take vacations and splurge a little; added insulin will cover ice cream for dessert, and your kids will thank you for giving them that freedom one day.

If and when you want peer support, there is a large, engaged community online- from Facebook groups to blogs to the diabetic online community (#doc) on Twitter.  These online interactions can lead to in-person meet-ups.  The friendships are real and the bonds are solid, whether they are formed online or offline.  We are here for you.  Although we have not met you in person, we are thinking of you and praying for you during this time of transition after diagnosis.

Sending love, and extra coffee!

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

 

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

 

 

 

 

“Wait, what’s diabetes again?”: Perspective from a 9-year-old

“Wait, what’s diabetes again?” my 9-year-old cousin (we’ll call him Daniel), inquired, eyes widening.

The wind suddenly knocked out of me, I deflated like a balloon in my chair at the dinner table.

He doesn’t know?

Thank God he doesn’t know!

How can my response enlighten him while maintaining his innocence, leaving him just the way he is- unscathed by diabetes?

How do I explain a disease that rocked my world by the time I was his age, while simultaneously praying that he never truly has to understand?

My grandmother had been describing a friend who was exhibiting the telltale symptoms of diabetes onset- extreme thirst and sudden weight loss.  Despite being familiar with the disease, my grandmother had not jumped to the diabetes conclusion.  Her friend was older and type 1 diabetes was not on the radar.  Thankfully, her friend was diagnosed and received proper treatment.  One drop of blood was tested in time.

As we lamented the lack of awareness of the warning signs of diabetes, I noticed Daniel’s focus shifting to us.  He fidgeted in his chair, the wheels spinning in his head.

Do I drink a lot?  Do I pee a lot?, he wondered.

Then: “Wait, what’s diabetes again?”

I took a deep breath and blinked back tears, buying some time to regain my composure.

“See this roll on my plate?  When you eat this roll, something called insulin helps you to process the food and receive energy from it.  I have diabetes.  So my body does not make insulin to cover the food that I eat.  I take shots of insulin to stay healthy,” I replied, except there were many more “umms” and much less eloquence in that moment.

Daniel looked directly at me and nodded.

“Oh, okay,” he said, satisfied with my explanation.

And with that he took off, dancing around the living room with the other cousins, back to more pleasant daydreams of race cars and Legos in place of insulin syringes and frequent urination.

Back to the way it should be.

We need a cure.

 

The Cloak of Diabetes

Diabetes has a knack for eliciting the barter games, those if/then compromises we make with ourselves, with God, with anyone who will listen.  Parents wish to switch places with their diabetic children, to endure all of the needles in their places.  Authors like Gail Caldwell document the phenomenon: “It broke through my disbelief, my God bartering, my every other defense, and for this reason I both needed and hated to go there.”

When it comes to diabetes, I’m not sure I want another person to go there, either.

During #IWishPeopleKnewThatDiabetes day, organized by the lovely Kelly Kunik, I tweeted:

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Diabetes is not all misery and sorrow, but let’s be honest: It would be amazing to wake up each morning and not have to prick our fingers, perform Calculus to determine a breakfast dose of insulin, rein in the effects of that insulin if it is inadvertently too much or too little, push back against misinformed stereotypes of the disease, and think about this stuff frequently as we lead the rest of our busy lives.

Frankly, diabetes is not “fun” enough for me to want to pawn it off on anybody else in good conscience.  This is why #weneedacure for future generations.  It is also why I invented the cloak of diabetes which hangs in the hall closet of my mind.

The cloak of diabetes is a way to explain that I want empathy with no strings attached- no harm, no foul.  Empathy does not mean that my doctors or friends have to live 25 years of diabetes to know exactly what it feels like to me.  Ideally, empathy means that they “get it” without having “it.”  They do not need to have diabetes to understand how frustrating being awake all night checking blood sugars is; they can trust when I tell them that the level of exhaustion is off the charts when that happens.  They can realize that sometimes saying the right thing means saying nothing; sitting with me in those moments is enough.

Even if diabetes is mostly manageable in the midst of living a full life, there are still the bad days where it hurts like hell.  I do not want my family, friends, or doctors to hear the words “chronicity” or “no known cure” and to imagine that their diabetes sentences are lifelong.

Hence, the cloak of diabetes.  They could throw on the cloak and briefly experience the grumpiness associated with high blood sugar, or going to bed hungry but unable to eat.  The shakiness in their hands of a bad hypoglycemic episode would be an acute incident, resolving when the cloak of diabetes is returned to the coat check.  The anxiety of the “what ifs” would dissipate when their lab work came back normal.

They could “get it” regarding diabetes, without actually having “it.”  They could empathize while having a better picture of what diabetes physically and mentally feels like.

But then it would go away.  Diabetes is not something that I want them to know intimately.  A little bit is enough.  So, I go back to the God-bartering games.

If I have to have diabetes, please don’t let them have to have it, too.  Allow me to be accepting of their support. 

Can I hang up Your cloak?  The weather looks nice today.