Diabetes Campfire Stories

“Back in my day, we used pork-sourced insulin when I was diagnosed!” I may one day proclaim to my future grandchildren.

At this point in time, there will be a cure for diabetes and they will laugh off my fireside tales of the struggles of the past, oblivious to the hardships that generations before them have faced. Honestly, that’s how it should be if we aim to improve the world during our brief time here.

So many changes have occurred in diabetes treatments since my diagnosis just before my third birthday in the early 1990s. And I have not endured half of what rockstars like Supreme Court Justice Sonia Sotomayor have lived through regarding diabetes management processes! Change does not have to be a comparison battle, rather it should grant a clear perspective of just how blessed we are today despite a conniving autoimmune condition.

Almost one year ago I began using the Dexcom CGM (continuous glucose monitor) in the hopes of alleviating anxiety surrounding my diabetes. From the first day, I was absolutely floored by this product. Sure, it is technology and it is not the same as a properly-functioning pancreas. I have to carefully prep my insertion sites to avoid blistering rashes. And I am still waiting on my winning lottery ticket so that I can make my first purchase: a fulltime nurse who will check my blood sugar at night and will perform Dexcom insertions on me so that I do not have to do the one-handed pretzel move to get a sensor in my lower back.

Despite these minor issues, Dexcom is, in my humble opinion, the best quality product on the diabetes market. Due to many diabetes hurdles this year, I cannot boast of an A1C that drastically improved while on Dexcom, but I can say that my mental anguish regarding diabetes has lessened substantially thanks to Dexcom’s accurate readings. That, my friends, is half the battle. I still fear overnight lows, but I am much more confident that I will wake up thanks to Dexcom rattling and alarming from an empty coffee mug on my nightstand. I owe my life to Dexcom, as do many others. In the past, we all had to make do with what we had, and plenty of us survived prior to CGMs. But Dexcom is an added safeguard that makes life less complicated. It is the sort of change that is easy to embrace.

The Dexcom Facebook group was my true introduction to the diabetic online community. For the most part, this group is wonderfully supportive and non-judgmental- a place where we can all feel at home. We are able to share our scary moments and our triumphs with an audience who “gets it.” As I ventured off into the blogosphere, I fostered genuine friendships with others in the community, but I will always have Dexcom to thank for being the springboard to finding some of my largest supporters in fighting diabetes.

In grade school my mother used to drive to the auditorium to check my blood sugar every day at lunch. These were the infamous NPH and R days, and lunchtime was primetime for lows. My mother recalls seeing me file into the cafeteria with the rest of my class looking white as a ghost; she does not know how I had enough energy to even walk on some occasions when my blood sugar hovered in the 30s and 40s. There was no Dexcom back then to alert my teacher to the rapid decline.

On the playground in fourth grade, Michelle spoke the unfiltered truth. “I’m sorry that I didn’t invite you to my sleepover for my birthday. You could come if you weren’t diabetic, but my Mom doesn’t know how to take care of your diabetes so you can’t sleep over.”

In fairness to Michelle’s Mom, after twenty-four years of diabetes, I’m still trying to crack its code. I give her credit for recognizing that this disease is much more serious than an herbal cure remedy. Perhaps she could have coached her child on her delivery of the bad news a little more, but we can’t always have it all.

When I see the parents of children using Dexcom CGM post in the Facebook group about little Joey or Susie attending the first big sleepover of the school year, it never fails to bring tears to my eyes. Those kids put up with enough pokes and prods, fingersticks and pump site rotations, Dexcom insertions and limited cake consumption that they warrant having some fun with their friends every once in a while. They deserve to stay up all night eating popcorn and watching movies, forgetting that diabetes exists while Mom and Dad rest comfortably at home watching the steady line of the Nightscout Project’s Pebble watch display or the Dexcom Share apps.

Enjoy that good type of change. Remember the freedom that this product affords us, even on the days where the calibrations seem a bit off. After all, we are dealing with type one diabetes; diabetes’ “calibrations” to everyday life are rarely on the mark. Innovative products like Dexcom CGM allow us to live life in the moment, to have an additional security blanket onboard, to do things that diabetics in the past may not have been able to do.

To the parents of the kids going to the sleepovers where Dexcom gets the invite, too: Your kids will thank you for allowing them to just be kids one day when they are old enough to realize the sacrifices that you made for them. One day we will all sit with our respective families around the campfire and talk about that first sleepover as a diabetic, the first time fast-acting insulin was introduced, and so on, until we can finally talk about the first big meal after the cure.

Keep up the good work.

Weird.

Today was weird.

It started off with getting called to the front of a 200-person meeting to participate in Dance Dance Revolution.  My coworker won the dance-off, but now the whole office knows who the real #LeftShark from Katy Perry’s SuperBowl halftime show was.  (That would be yours truly).

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Later I discovered a 300+ blood glucose reading at lunch and a blood test confirmed some ketones.  Yikes, considering we had another meeting on the way.  No more Dance Dance Revolution for this girl, though!  I felt like this lizard that I encountered on a recent trip to Florida, as in Leave me the heck alone, intruders! [in this case, ketones].

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I bolused quite a bit and played the “wait it out and let the insulin do its job” game, otherwise known as “patience is a virtue, but it’s really freakin’ difficult when you don’t feel well!”

Trusting in insulin after all of my insulin pump drama in the past has been a challenge for me.  I’m still getting accustomed to the idea that when I bolus, insulin generally does something.  Before, it was not always the case.  Today, it did its thing, although I’m still running too high.

Tomorrow we shall try again.  Bring it on.

Needles: #ItMakesSenseIfYouHaveDiabetes

In the early 1990s when I was in elementary school, I took part in a study through the Joslin Diabetes Center which examined whether or not patients “liked” new, shorter needles on their insulin syringes.  We had to fill out a chart with smiley faces for “minimal pain,” sad faces for “painfulness,” etc.  It’s probably why I remember this: the artistic part was fun.

A creature of habit, I emphatically voiced my displeasure with the new, short needles.  Big sad face for you on the chart, “new thing meant to help me!”

My parents, perplexed that I would elect to use the “behemoth needle model,” decided that it would be in my best interest if they switched out the needles unbeknownst to me.  I believed that I was still using a large needle, when in reality it was a short needle.  Not one to complain much about insulin injections to begin with, I did not notice the difference or care to vocalize it if it was there.

(Sorry to Joslin if we messed up your study!  I believe the switching out of needles was probably done after our part of the study concluded).  Also, #sorryimnotsorry to my parents for still being a little miffed about this.  I’m all about patient autonomy, albeit my parents were simply trying to lessen my diabetes burden at that time.

So, why am I reflecting on this during Snowmaggedon 2015?  Perhaps I have too much free time on my hands today.  But I’m also just plain kind of sore from injections right now.  The skin on my stomach bounces the needle off in protest after ten years of insulin pump sites.  Can I really blame it?  My upper left butt cheek looks like a game of pin-the-tail-on-the-donkey gone wrong, although the right side knows how to handle the infamous “Lantus Burn” like a champion.

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Needles are the easiest part of diabetes in many regards, but somewhere along the line I have noticed in social media groups that there is this pressing need for some to announce that diabetes never hurts.  Well, for some of us, it does.  And trust me, as a kid I was the first to judge the “insulin shot cry babies.”  Mine was a face of stoicism from a young age.  But as an adult making an effort to accept my emotions more freely, I can admit that sometimes the needle hits a sore spot and a few swear words are mumbled.

What can one do about this- this reality that needles keep you alive whether or not they cause pain?  Running with our theme of doing what works for you, exercise your freedom here.  If you like the bigger needles, use them, and then draw a big smiley face on your chart for good measure!  We have options here, and plenty of them at that rate.

#ItMakesSenseIfYouHaveDiabetes: Perhaps short needles work on some sites using a particular type of insulin, but larger needles work better in different areas with different insulins?  BD Nanos (4 mm) are the tool-of-choice for Lantus injections in my backside, while the BD Short (8 mm) needles work better for Humalog injections in less-padded areas.  Humalog does not pool at the injection site as often with the larger (confusingly named “Short”) needles.  Yet the Shorts with Humalog have the pin-the-tail-on-the-donkey effect on my left side- go figure.  Maybe I will employ Nanos for those sites?  Again, #ItMakesSenseIfYouHaveDiabetes.

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This is my personal configuration that works well for me, so I’m going to stick with it.  When I need to make alterations, I will do so under my own good intentions.  And, in some weird sort of psychological spin on things, I acknowledge that I am a fan of the same method as I was two decades ago: using a combination of long and short needles to get the job done while maintaining my sense of independence in living with type one diabetes.  Ultimately, it is about how you feel as the individual; however wacky your methods may seem, do what works for you.

***Update: Erin Gilmer over at healthasahumanright.wordpress.com brought up a good point with me via Twitter.  Not everyone has these numerous treatment options due to various obstacles to proper health care: limited insurance coverage, out-of-pocket expenses, socioeconomic status, and so on.  While I am a firm believer in fighting hard for the health care that you want, I must concede that there are certainly limitations to this idea.

I meant to disclose previously that I paid for the 8 mm needles out of pocket.  My insurance had already covered a regular syringe prescription when I first switched back to shots.  Then my doctor and I chose to go with pens out of convenience, so obtaining the Nano pen tips took a lot of jumping through hoops until insurance was kind enough to override my refill a few weeks early.  When it came time to try the Short 8 mm needles after the Nanos weren’t working on my stomach, I purchased a box on my own out of fear of insurance tightening their pocketbook with me.  If I remember correctly, the box of 100 pen tips cost about $45 out of pocket.

I will blog about the health care coverage loop-de-loop at a later time, but wanted to acknowledge Erin’s point here, as I believe this is an important one, too.  Patients can fight for their health, but the health care system needs to give back some of that same effort in order to help us to get well.

Type 1 Diabetes: Welcome to the 1%. (Rant Version)

This piece was previously bookmarked as a page reference on the blog in order to enlighten those readers who may not know much about type one diabetes.  After “word vomiting” all of my pent up emotions about misconceptions regarding the various types of diabetes, I realized that I needed a simplified, statistical page reference on the blog, and that I should retire the gushy feelings for a blog post.  So, here is the recycled “Rant Version” of the 1% for those of you looking for some diabetic attitude to read with your morning coffee.

In 2012, the population of America was almost 314 million people.  According to the Juvenile Diabetes Research Foundation (JDRF), there are about 3 million type one diabetics in the United States.  Crunching a few numbers illustrates that type one diabetics are a rare breed indeed; we comprise less than one percent of the U.S. population. 

If you are not type 1 diabetic or a close family member or friend to a type one diabetic, you may think that your education from the mainstream media in regards to diabetes is sufficient.  Newsflash: it’s not.  Diabetes is incredibly complex, and many reports and articles, quite frankly, miss the mark when portraying the disease.  I am eagerly working towards a Master of Science in healthcare administration degree, and my studies have included taking public health courses at the graduate level.  While I do not officially have those initials tacked to the end of my name quite yet (I can see it now- Very Light, No Sugar, Master of Science- okay, sorry!), I do know a thing or two about chronic disease due to my education.  I also have 23 years of personal experience as a type one diabetic, and I have a family member with diabetes as well.  In addition, my fulltime job in a healthcare-related field has allowed me to observe other diabetics’ stories.  If that unofficial transcript does not make you trust my judgment in discussing chronic illness, allow me five minutes to explain diabetes in simplified terms for this epic rant of a blog post, please.

Diabetes comes in many shapes and sizes.  It affects the young, the middle aged, and the old; the overweight and the thin; the black, white, purple, green, yellow, blue, and so on.  It places an unjust burden on people who are not only diabetics.  They are also parents, grandparents, grandkids, siblings, daughters, sons, cousins, friends, coworkers, race car drivers, actors, entrepreneurs, advocates, and much more.  Most importantly, they are all human beings who did nothing to “deserve” the amount of suffering that they endure each day as if it were some sort of punishment meted out in a courtroom, with society residing as the judge.

Some women encounter gestational diabetes with pregnancy.  LADA, latent autoimmune diabetes of adults, is similar to type 1 diabetes but with a later onset in life, in layman’s terms.  The diabetes that you often see in the media is type 2 diabetes.  Type 2 diabetes is characterized by insulin resistance and difficulties metabolizing glucose, but the body still produces some insulin.  According to U.S. News, one in eight Americans is diagnosed with type 2 diabetes, and evidence shows that many others go undiagnosed.  Clearly, these figures do not represent 1% of the population, as type 2 diabetes is quite common in our country.

I am type 1 diabetic, not type 2 diabetic; I can only speak from my own perspective.  However, I am going to defend the type 2’s for a moment here.  They get a bad reputation in the media, which critiques them as being overweight and “lazy” about their health.  While lifestyle may play a role in some cases of type 2 diabetes, it is not the only factor.  Genetics, the environment, and many other issues come into play to set the stage for the onset of type 2 diabetes.  The next time you catch yourself blaming a type 2 diabetic for his or her health situation, take a second to realize what you are really doing: rationalizing.

Society is prone to this.  It is easier to blame the rape victim for drinking too much or wearing a short skirt than it is to mentally process that one’s mother or sister could just as likely be that randomly-selected victim.  It is also easier to blame food for type 2 diabetes than it is to admit that we have many barriers to enjoying healthy lives in our society today.  Have you never had a piece of cake in your life?  How about a potato?  Potatoes carry a much larger load of carbohydrates than a half of a cup of ice cream does, for example.  Carbohydrates raise blood sugar.  If diabetes was so cut and dry, as in “Eat too much cake and you will get diabetes,” well, we would all be diabetic.  Give everyone a break, please!

Type 1 diabetes is much more rare, as evidenced by the 1% fact previously discussed.  It is caused by an autoimmune attack on pancreatic islet cells, causing insulin production to short circuit and eventually to stop altogether.  Type 1 diabetes is not caused by ingesting too many cookies.  Research indicates that the “perfect storm” of factors, to include genetic, viral, and environmental components, may be responsible for type 1 diabetes.  No matter the cause, diabetes sucks!  What also sucks is hearing that it is your fault in society’s eyes on a regular basis.  Paula Deen diabetes jokes and the like are thrown in our faces day in and day out.  When you have endured hundreds of thousands of needles to manage a disease that never rests over the majority of your lifetime, it is beyond frustrating to have diabetes minimized by society in such a fashion.

As I stated, my personal experience involves type 1 diabetes, so that is what I will describe here.  The goodness that stems from diabetes is seen in the wonderful people that you meet along the road in your health care management.  The other diabetics in the online community, patients at the diabetes clinics who understand exactly what you go through, doctors and nurses who dry your tears on the bad days, and friends and family who are always willing to lend a hand whenever they can- these are the people with whom diabetes has blessed me and other diabetics; they are the pillars of strength whom we rely on.

But the reality is that no matter how strong our army is right now, diabetes is the monster that never pauses to catch its breath.  Every bite of food consumed can impact a type 1 diabetic’s blood glucose.  Those 5 chips I had at the office party?  Yup, they will impact my blood sugar, sometimes at dangerous levels.  That short walk to my car after a party?  Yup, now my blood sugar is dropping.  Traveling?  Darn, I need to pack an entire suitcase full of medical devices and medication to sustain my life for a few weeks.  If that luggage is stolen at the airport, my life is immediately endangered.

You think that I should “control” my diabetes better?  Every day we wake up fighting a constant battle.  Insulin is not a miracle drug; it is not a “one size fits all” pill.  Insulin dosing for type one diabetics is an educated guess taken subcutaneously each time around.  What works on Monday may completely backfire on Tuesday.  Maybe you have a head cold coming on and your liver is furiously releasing sugar to fight the illness?  Now you may have to triple your insulin dose.  But oh wait, that was too much and now your blood sugar is crashing.  There is no crystal ball that tells us the perfect insulin dose to take at this point in time.  It is a trial and error dosing system.  And once you find something that works, diabetes changes its mind within a few days.

These are the calculations that never go away; they are sometimes minute to minute or hour to hour, and they are definitely day to day.  Until there is a cure I will never put a bite of food in my mouth without thinking over such factors to determine an insulin dose.  This disease is the farthest thing from a joke.  Trust me, we all wish that it were as funny and as manageable as the media makes it out to be.  I wish with every ounce of my soul that a cure would take away this never ending struggle for the parents of kids with type one diabetes, for the non-diabetic siblings who do not receive as much attention as their diabetic counterparts, for the toddler screaming in pain at injection time, for the young adults struggling to keep brave faces while showing up to work every day to deal with the normal stressors of life on top of the diabetes headaches.

Please, please take a moment to educate yourselves about diabetes and to share this knowledge with others.  Until we change our mentality about diabetes in this country, diabetes will continue to plague us, to take loved ones from us, and to be a mental and physical burden for so many people who do not deserve it.  The good news is that it is within our power to change this public perception.  It starts with each and every one of us.  Let’s get to work.

Thank you

Sources:

http://health.usnews.com/health-news/news/articles/2013/02/20/1-in-8-americans-diagnosed-with-type-2-diabetes-poll

http://jdrf.org/about-jdrf/fact-sheets/type-1-diabetes-facts/

http://www.mayoclinic.org/diseases-conditions/type-1-diabetes/basics/definition/con-20019573

http://www.mayoclinic.org/diseases-conditions/type-2-diabetes/basics/definition/con-20031902

Blue Fridays

*Edit as of October 15, 2014: In my original Blue Fridays post from September, I featured Project Blue November, but I also should have mentioned that Blue Fridays is the brainchild of Diabetes Social Media Advocacy.  See more here.

Meet Ace, everyone!

Those people (and dogs) that you see with the blue circles on their social media account profile pictures are participating in the Project Blue November movement.  I encourage you to check out their Facebook page.  November is diabetes awareness month, but we all know that advocacy takes place every day.  Each Friday is “Blue Friday.”  We are sporting our blue today in order to promote diabetes awareness.  This is a fun, easy way to get your friends and family involved in diabetes advocacy efforts.  We’re all in this together- one giant sea of blue.  Let’s do this thing.

Ace Blue Friday

True Life: I’m afraid of spiders and insulin, in that order.

Without fail, every summer night when I go outside to get in my car, a few yellow spiders are hanging out on the hood and roof.  When I approach, they look at me as if I am interrupting their block party.  After catapulting myself into the driver’s seat a la Angelina Jolie in Tomb Raider, I give myself the “spider pep talk.”

“Ally, you are better than this.  It’s one moment in time.  Try to forget about them and get on with your life.”

If only the “take your insulin” pep talk was that easy…

Every type 1 diabetic understands the rocky relationship that we entertain with insulin.  We can’t live without it, but sometimes living with it makes the act of living really, really difficult.  Like the times when it almost kills us at 3:34 am with a blood glucose reading of 45 mg/dL when we inadvertently over-calculate the spike effect of pizza for dinner by bolusing heavily.  Or the times when we hit a bad pump site at insertion and the cannula kinks and suddenly we want to drink water out of a fire hydrant like dogs do in 1960s cartoons.  Those times, and any other times that insulin doesn’t work perfectly.  Which is almost every time.  Because. insulin. does. not. replace. a. normally. functioning. pancreas!!!!  As we have all heard many times before, insulin sustains life, but it is not a cure for diabetes.

I will delve further into my own struggles with insulin as we progress in our blogger-bloggee courtship, but for now just know this: I sincerely appreciate the discovery of insulin and how much diabetes technology has changed over the course of my 23 out of 26 years of life spent as a type 1 diabetic.  Every time I go to Joslin Diabetes Center in Boston, I look at the murals on the walls in the lower level of the building which depict some of the history of insulin, and I am so thankful to be a diabetic “now” as opposed to “then.”  But I also fear and respect this life-saving commodity for the abusive lover that it sometimes is to all of us.  I have a tendency to “under-bolus” because of the trauma that over-bolusing has caused in the past.  Whew- the hardest step is admitting that you have a problem, right?

We are stuck in an ongoing oxymoron of sorts.  We can’t take too little insulin or our sugar will be high; we can’t take too much insulin or our sugar will be low.  And many of us grew up with the dreaded lecture from (insert whoever is applicable for you) ____________ (doctor, parent, school nurse, etc.) if we did not perform flawless algebra to compute the correct “insulin to carb to exercise to stress to illness to social life” ratios every time we took insulin.

But you know what?  Once I admitted that the problem was there, a doctor looked me in the eye and told me that it was okay.  Hers was not a lecture of blame.  She told me that I could forgive myself, that I did not have to spend the rest of my days in self-imposed “diabetic timeout.”  She told me that it was normal to be frustrated, that trying to play the role of a perfect pancreas every day was “not a good look” because it was essentially bullying myself, giving myself that loathsome lecture that I never really deserved in the first place.  But why give yourself that negative commentary when you fully understand that diabetes is not so cut and dry?  You are not an outsider to the disease, so do not treat yourself like you are.

I understand that I have the tools to do this, to improve and maintain my health. Not carrying “survivor’s guilt” of sorts is difficult for all of us who put in 110% effort every day only to have diabetes knock us on our asses with a herculean effort when we least expect it.  What truly matters is that we have already entered the boxing ring.  We have given ourselves the “insulin pep talk.”  We have calculated the carbs in the 5 crackers that we snacked on and pressed a few buttons on our insulin pumps to account for them.  And if we forgot to do so, or if we mistakenly took half a unit of Humalog less than what we should have taken to achieve an ideal blood sugar goal, so be it.  We have tomorrow, and the next day, and the next day.

And we keep showing up at the boxing ring ready for a fight, which is more than most people can say…