Sticks and Stones and Words

Many thanks to Douglas @salguodmai for being a supportive member of the #doc during the initial stages of writing this. And have I mentioned that he runs more miles in one weekend than I probably have in my lifetime?!  Inspirational!  Also, here’s a big shout out to Scott @Scott_InTheD for his Quotes that stick blog post, the concept of which I am borrowing here (with a somber spin on it- you’ve been warned!) with his permission.

“Sticks and stones may break my bones, but words will never hurt me.”  Maybe on Opposite Day?

Diabetes scares the people who love us on occasion. In moments of weakness or misunderstanding, they may say things that hurt us, often unintentionally. This blog post has been batting around in my head for a few weeks now, and my inner English major keeps reminding me to let it out.

Words from others are only words. They do not have to define us, but they may explain things like the subliminal pain masked by epic Twitter rants or the irrational self-blame that we impose on ourselves when the CGM graphs look like Mount Everest.  It’s sometimes there in the background, that internal voice that says you’re not good enough. The truth is that you are doing your best despite a rather difficult job as a substitute pancreas. Choice of words perhaps clouds this idea.

To quote Jay-Z, “Allow me to reintroduce myself.” Or at least to explain where I’m coming from on the bad days.

*****

“You’re a straight-A student, but you still can’t get it through your head!”

You’re right. I should have bolused more and eaten fewer carbs. But guess what? I’m going to be diabetic for a long, long time, and there’s always tomorrow. I messed up at a disease where you can give 110% and still not see the results that you want to see. I could do without the lecture.

^ That’s what I should have said. In reality, I probably walked away, did my homework to maintain those A’s, and hid my tears. And for the record, I’m still a straight-A student in grad school, and I still can’t get it through my head. But I know now that trying counts for a whole lot.

 

“If you didn’t eat _____, your blood sugar wouldn’t be 400.”

Because everyone loves a blood sugar value of 400…

 

“It IS your fault!”

No, it’s really not. My diabetic relative was simply trying to maneuver through a social setting, forgot about this pain-in-the-ass illness for a few minutes, and didn’t bolus until after the meal. You try doing this job and see how you like it.

 

“If this was Survival of the Fittest, you’d be long-gone by now.”

At the time, I laughed with the rest of the group. We were naïve high schoolers and the joke was not as tasteless as it looks on paper now. But there is that element of survivor’s guilt that still lingers. What if I had been born in another place or another time? He’s right; I wouldn’t have survived. But am I not ‘fit’ to survive as one of the ‘fittest’ now?

The consolation is that it isn’t another time, nor another place. It is here and now. I’m here. You’re here. Right now. We have survived as type one diabetics. It’s not a question of Why? but a question of What are we going to do with this life? We’re all doing a decent job in my book.

 

“Tons of people use the insulin pump. You’re the only one who had the problem, so it must be you.”

Look, diabetes is a blame game in society. We all experience this to some degree. What hurts is when people you love, who you’ve explained this to a million times before, take the cop-out option here. It’s easy to shrug pump problems or whatever it may be off on the user, the person with diabetes. None of us should ever have to defend actions we take to preserve our health, however unconventional they may be.

What I really want to say to you is that we both love each other. I do not want to keep rehashing the difficult stuff. You should inherently respect the decisions that I make regarding my own health. I may never know exactly why my pump problems happened, but they did. And every doctor and nurse involved came to the same conclusion: the issue was not caused by me, but by the product. I don’t want to have to prove it to you over and over again.  I have moved forward, and I would like you to move along with me.

 

“I’ve learned a lot from watching you handle your degenerative disease.”

Who said it’s degenerative? Not me.

Sure, there’s the term “complications” which none of us like to hear. But the good news with diabetes is that it doesn’t always have to be “degenerative.” We have a lot of tools in our toolboxes at this stage of the game. These tools enable us to potentially live better than those with diabetes in the past may have lived.

Diabetes will never be a walk in the park, for me at least, but I refuse to go down without a fight. And I also know that if it does become “degenerative,” it is not my fault. It will hurt, yes, but it is not my fault. There are too many outside factors that affect diabetes to hold myself solely accountable. For starters, I’m snitching on faulty islet cells, stress, hormones, inaccurate carb counts, exercise, not enough exercise, and many more variables which are all guilty as charged. But heck, there’s nothing “degenerative” about a heart and soul that refuses to stop fighting the good fight- whether we are speaking about diabetes or any other challenge. Keep doing your thing, #doc.

 

“If I were managing someone else’s diabetes and could take insulin freely with no personal repercussions [hypos and hypers] experienced, I’d be a good diabetic.” -Me

“Are you aware of your language?” –My doctor

What? I didn’t swear, did I?

“Good diabetic” and “bad diabetic” don’t exist. There is the diabetic, or the person with diabetes, or whatever you choose to call yourself. There is the human being, who is more than diabetes. But let’s lose the self-destructive adjectives. There is only the doing-the-best-I-can-diabetic.

 

“Camping. Soccer in Montreal. St. Patrick’s Day Parade. There are so many things that I still want to do with you.”

My former college roommate said this genuinely and nonchalantly. We were planning future trips with friends and daydreaming of warm summer weather. What resonated with me was how much I wanted these things, too, and how far away they had seemed a few short months ago when it felt like diabetes had the upper hand. There are so many things that I still want to do with my friend, and with others, too. Thankfully, I’m going to be around to do them now, whether diabetes likes it or not.

 

“You’re not saying you can’t do something. You’re asking for help. We all do it. It’s life.” -My boss

Wait, I’m not weak if I ask for help? (Sarcasm)

Also, you are a really cool boss. (Not sarcasm. That was a significant learning moment for me.)

*****

My doctor and I are working on this thing that we call The Wall. Sometimes I let her remove a brick from the wall with a tiny chisel. Other times I try to deflect attention away to something of lesser pain value.  I email her when I take a big bolus, a number that would have frozen me in fear in the past.  A few bricks tumble down.  We cheer via email and smiley face emoticons.  Slowly but surely, our masonry skills are improving.

The Wall impacts how I feel about and handle my diabetes management at times. It’s a learning curve, and there are days when I am not proud of my behavior or my attitude. There are disheartened tweets which I later feel guilty about. Curse words may be said to people who I care deeply for. Feeling sick is no excuse, but sometimes feeling sick negatively affects my emotional inhibitions.

I joined the #doc with the promise of being transparent, so I’m confessing my stumbling blocks here and giving my written word that I want to work on this. I hope to one day sledgehammer the stumbling blocks- rather, the bricks- into smithereens.

If this post rings all-too-familiar to you, I want you to know that you can be a straight-A student and still not get it.  Please know that it is okay.  You are smart, not dumb.  You are a fighter, not a failure.

Maybe diabetes is not yet meant to be fully understood? Just show up every day and work on it. That’s all anyone should ever ask of you.

 

The Real Patient Portals

For privacy purposes of those discussed here, some of the details of this blog post have been altered/omitted. The heart of the story remains the same.

 

To avoid the throbbing headache that is commuting from Providence to Boston during morning traffic, I stayed over in Massachusetts prior to my Joslin appointments this week.

I hoped to catch the end of the Providence-Villanova game at the hotel bar, but the thrashing PC was receiving was so embarrassing that the bartender instead flipped between The Voice and the Bruins. I asked a patron if the seat next to her at the crowded bar was available, and she nodded. The restaurant was busy and it seemed like it would be a while before my dinner was delivered, so I took a big gulp of my classy Bud Light and vowed to make friends while I waited.

“Are you here for business?” I asked the professionally-dressed woman.

“Actually, my child is being treated at Children’s Hospital.”

“I’m sorry to hear that. But your child is in phenomenal hands.”

“Yes, we have been here for a long time, but soon we will travel home with a stronger, healthier child. We have been very blessed.”

And so we talked for almost an hour. We discussed her home many miles away from here, admired the nurses who followed their professional callings to ease the suffering of their patients, educated one another on our respective areas of patient or caregiver knowledge, and, to be quite honest, took solace in finding a bar buddy who understood the stress and anxiety of Boston medical appointments. Sure, I seek out care in Boston because it is the best, and this lady does, too. But that doesn’t make it any less gut-wrenching every time the appointment days arrive.

We eventually wished each other well and parted ways. I want to give SuperMom an anonymous shout out here, though, because of the example of strength that she provided that evening. I have so much respect for the parents of any child who faces illness- whether that be type one diabetes or something else. Being the patient for most of my life, I have mainly been preoccupied with my own suffering- something I know that I can and will handle.

Watching others suffer, though, makes me nauseous, anxious, and somewhat frozen in “What do I do?!!” mode. SuperMoms and SuperDads don’t have the option of “What do I do?!!” mode. They activate “Do” mode because their child is hurting and they want the pain to stop. They remain calm when the world is shaken up around them. Yes, they have days of sadness and tears, but they try their best to provide their children with the greatest lives possible, to comfort them on the rough days, and to keep on going.

So, to SuperMom at the bar, cheers to health and happiness for you and your family.

The next morning, I hastily checked out of the hotel and made my way to Joslin Diabetes Center, where I had one thing on my mind: very light, no sugar coffee, and even better if you can hook me up to an IV drip of it.

I generally enjoy my Joslin experience because it is one of the only places on earth where I feel completely safe from a diabetes standpoint. If I go low or high, there are plenty of people who know how to help. But this time, I was nervous and emotional, as it was my last appointment with Current Endo before her departure; additionally, these days are quite frankly long and exhausting no matter what the outcome is.

I fumbled my way to the coffee stand through a haze of anxiety.

“What’s ah matter, my darling?” the coffee stand employee cooed, her brow furrowed.

“Oh, nothing. I just need some coffee to wake up,” I said, shrugging it off.

“I asked how your morning was and you didn’t reply,” she sounded off, much to my surprise and admiration. (I like a person who tells it like it is!)

“My apologies. I must not have heard you.” My level of distractedness due to nerves was obvious now.

Without skipping a beat, she looked me straight in the eye and stated, “You will be okay. You are so strong.”

This kind woman had never met me before. She had no prior knowledge as to whether I was in the hospital district of Boston as a patient, a caregiver, a sales rep, an employee, or so on. But she knew, without hesitation, that I was hurting simply from the look in my eyes. She seemed to recognize that I was the patient, and that I was trying to keep it all together. Her confidence that I could do this was the gentle nudge I needed to go check in at Joslin, ready to take on the day and whatever it would bring.

Blinking back tears, I thanked her for her reassurance and sauntered off with coffee warming my hands and coffee shop lady’s words warming my soul.

After my appointments, I needed more coffee before racing back to work. I stopped at the same coffee kiosk, and the same employee was still there. I filled my cup and went to pay.

“You were right. Everything was okay. I wanted to thank you for what you said earlier. You made me feel better.”

“God will take care of everything,” she replied.

“Yes. And there should be more people in the world like you. Your joy is contagious.”

And we both fought back tears, nodded our heads in agreement, and vowed to pray for one another.

Bars and coffee shops are the real patient portals. These are the watering holes for the warriors- the patients and the caregivers- to assemble and collect their emotions. Here, the pep talks happen. The fears and aspirations are relayed. The hugs are handed out a little more freely. The tears are dried if necessary. God is there, as these women proved to me this week.

Lucky for me, I’m always thirsty. Something tells me I’ll be back soon.

To SuperMom and SuperCoffeeShopEmployee, this blog post goes out to you. You are both inspirations. Thank you…

Beginning of the End(o)

This week my endocrinologist is transitioning to a different medical office which is, realistically, too far away for me to travel to for future appointments.  This endo not only is a kind, non-judgmental doctor, but in my head she is dubbed as the “Basal Insulin Wizard.”  She has a knack for knowing which little adjustments need to be made to prevent or to fix huge problems.  She also deals with an inundation of emails in her inbox, mostly from me.  I pride myself on being an engaged patient, but I also understand that doctors do not have much time in the day to get everything done for every patient.

A few months ago I asked her, “Do your other patients email you like this?”

“Not really…” she replied.

And then we both had to take a moment to compose ourselves through a mutual fit of giggling.  Without saying much, we both totally got it.

I am intense in my emails, but I am also fighting for my health.  I appreciate a doctor who recognizes that and works with me.  Current Endo has done that, and I will miss the comfortable relationship we have built over the past few years.  Her new patients are blessed to have her on their team.

So, what am I going to do now?

I’ll tell you what I should have done: started searching for a new endo a few months ago when I was first told of Current Endo’s impending departure.  She gave me a few recommendations for a new endo at that time, and my nurse proclaimed, “If I were a type one diabetic, I would definitely get treated by _____!”  Naturally, I should have then booked an appointment with Endo _____.

But I didn’t.  Perhaps it was a bit of diabetes burn out, and I must now own that.  Perhaps it was a bit of denial that Current Endo was leaving.  Perhaps it was the fact that from a practical sense, I am tired of commuting many hours roundtrip for my diabetes care, albeit I feel strongly about the top-notch care I receive in Boston.

All I can do now is make a plan.  I will pick up the phone and schedule a new endo appointment this week.  Diabetes doesn’t take a vacation, and it certainly doesn’t care that my endo is switching offices.  I will rely heavily on my nurse during this transition period while I wait to meet my new endo.  This situation makes me so thankful for a nurse who is willing to put in the extra effort to help me to stay well.  She will rise to the occasion, and now I must do so, too.

New Endo will not replace the relationship- and possibly not the same skills- as Current Endo represents for me.  And that is okay.  People are inherently different in their attributes, and I am optimistic that whatever my relationship may become with the New Endo, it will be its own unique entity with positive results.  I must be thankful for the calm guidance of Current Endo, and I will remember her for that.

Warming up to New Endo may take some time.  I am a patient highly involved in my own care, and I’ve also made many major changes in my courses of treatment this year (Dexcom CGM, returning to multiple daily injections versus insulin pumping, and taking much larger insulin doses).  This is a lot of information for all of us to process, and sometimes the road may not be free of bumps.

For now, we’re just going to ride with it.

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.

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.

Better

“Is your diabetic relative’s diabetes as ‘bad’ as yours?”

It was a fair enough question to ask considering the whole #nofilter hash tag often dictates my social media interactions.  The good, the bad, and the ugly are relayed to my followers, and I make no apologies for that.  This is life with autoimmune disease from my perspective, and if I’m going to share that story, I’m going to keep it real.

The question still kind of hurt, though.  I truly didn’t know my diabetes was considered “bad.”  Sure, my A1C is less-than-stellar.  I was overly-vocal about my insulin pump frustrations, albeit I was fighting for my quality of life.  I look back and see the desperation in my words- those spoken and those written– but I never thought that I was going to lay down and let the diabetes wave roll over me.  I was, and I still am, going to fight this.

A good friend asked the question about 6 weeks ago, slowly articulating the words, immediately wishing she could pull them back in before I could snap.  I said something along the lines of, “I mean, we’ve always more or less had similar results in our diabetes management.  But it’s type one diabetes.  There are ‘good’ and ‘bad’ days even if you’re the ‘best diabetic’ out there, and the ‘best diabetic’ doesn’t exist in real life.”

Then we returned to our beverages and talking about our jobs, and until now I haven’t thought much about that conversation.

The truth of the matter is, 6 weeks and a complete 180 degree turn in diabetes management from insulin pumping to multiple daily injections later, I do indeed feel better.  I’m almost afraid to say it because some kind of a diabetic hex might come out of the woodwork and knock me to the ground again.

My transition back to insulin injections is a bit less bumpy now.  My quality of life has started to see sunlight again.  Little things like eating a ranch chicken sandwich for lunch and sending a picture to my doctor (#yay!), bolusing insulin and knowing that it will do its thing to keep me alive when I eat that sandwich, bowling with friends and watching the exercise work its magic on my CGM graph, and having so much fun that for a few hours the CGM graph doesn’t really matter- these things that a few months ago seemed so far out of reach- are now suddenly part of enjoying life.  It feels so good that I am scared of losing it again.

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There is an element of “survivor’s guilt” in diabetes for me at times.  I know that I deserve to be healthy and to enjoy my twenties.  I know that feeling better can be fleeting if diabetes has its say in the matter.  But I also know that feeling better is something I so passionately want and have fought for, so I shouldn’t feel guilty or afraid of the betterment, right?  And even if it does eventually fade away, I will do what every diabetic does: lift my head up and find a different way to fight diabetes until I feel better again.

Moral of the blog post: Do what you have to do to feel better.  If that means writing somewhat corny, sentimental blog posts far too often, tweeting in rapid fire to get suggestions on diabetes management, or completely changing your course of treatment- so be it.  If an insulin pump works best for your needs and your health, utilize that technology if you can.  If you want to take a pump vacation, book your flight.  Using whatever floats your diabetes boat, just try your best to keep on floating.  We deserve to feel better.  And take it from someone who has been in the diabetes trenches: we can feel better.

“Control”

I’m not the first one- and I certainly won’t be the last one- to say that in the context of any chronic disease, the term  “control” needs to be replaced by “giving it your all.”  Our choice of words affects how we emotionally-process the inevitable rises and falls of everyday life with a health condition.  We cannot simply throw a lasso around a chronic disease and call it a day, so let’s make a concerted effort as patients, health care professionals, and most importantly, human beings, to honor the effort that it takes to live with chronic disease through our choice of words.

 

diabetes coaster

When I Grow Up, I Want to be a… Patient!

On my hour-long drives to reach my diabetes clinic, I have been reflecting a bit more on one of my leading roles in life: playing the part of the patient.  What does this mean?  In high school, it simply meant showing up at the doctor’s office a few times a year, rolling my eyes as the medical staff gave advice, and grumbling to Mom on the car rides home about how unfair it was that I spent my Christmas break getting blood drawn while my friends were back home goofing off at the local shopping mall. (Someone give me an Academy Award, right?).

If you ask a classroom full of kindergarteners what they want to be when they grow up, you’ll hear: “Firefighter!”  “Policewoman!”  “Doctor!”  “Mom!”  “Dad!”  “Astronaut!” and other ambitious goals called out.  You probably won’t hear “Patient” mentioned.

Being a Patient is not an occupation one normally chooses; rather, we are chosen.  And we rise to the occasion.  (Yes, Grammar Police, Patient deserves a capital “P” because it is a 24/7/365 job and it takes incredible strength to play this part).

When I was almost three years old and my biggest concern was building snowmen outside, diabetes chose me.  While my parents handled the majority of my care in childhood, I was simply along for the ride.  Now as an adult tasked with keeping myself alive despite a rebellious pancreas each day, I do have a choice: to sit back and get dragged by my hair when the diabetes roller coaster comes barreling towards me, or to take a deep breath and give it my all as a Patient.  It just sort of happens that this fight becomes a part of your heart and soul.

Whether used in the context of diabetes, cancer, arthritis, heart disease, or simply a head cold, the term “patient” can carry a negative connotation in some regards. Patient? You must be sick, then? You might be lower on the totem pole of power than the doctor, nurse, or other health care providers treating you at the office? You are not as “in control” as you would like to be? Perhaps that control is in someone else’s hands at your medical appointments?

Let’s look on the positive side for a minute, though. (See ya, Negative Nancy!) Being a Patient is empowering. Look no farther than the diabetic online community (DOC) if you need any concrete evidence. We are more than the “patient as an occupation” title. We are pillars of strength for one another while balancing our other jobs in life. Playing the role of the Patient is part of us, and this purpose in life is something to embrace. Even if one day that elusive cure finally gets figured out by a brainiac doctor, I believe that our hearts will not change; we will continue to be Patients, whether for our own health situations or for those of others who need our assistance, no matter the medical conditions.

Fighting for my health has become such a part of my life that somewhere along the journey I fell in love with advocating for myself as the patient, with giving it my all and expecting to get the same effort back from my health care team. In recent years I have taken on a more active role as the Patient: printing out my own continuous glucose monitor (CGM) charts prior to my appointments and eating lunch with one hand while clutching my cell phone to my ear with the other hand- briefing my insulin pump representative on what I believe to have identified as a product defect.  You get the picture.  I’m involved in my health care, to the point where some days I wear myself out obsessing about a disease that can indeed be tamed, but never completely tied down.

As I drive away from my endocrinology appointments, I often wonder, How do they do it? How do my doctors and nurses maintain composure while they comfort us in the face of human suffering each day? But there is also more to that story. There is the Patient who is on the receiving-end of the suffering, too. Perhaps doctors and nurses go home and wonder, How do THEY do it? How do our Patients fight that battle each and every day? The simple answer is that we all do it. We put on our game faces and we march on, even on the bad days. We do this for ourselves and for each other- for the respective roles in life that we all play, whether Doctor, Nurse, Patient, Caregiver.

Being the Patient is hard work.  It requires blood, sweat, tears, urine labs, lack of sleep, hunger, thirst, and more tears.  It also requires humor and perspective if one is to keep on, keepin’ on. Honesty is the best policy, but it is also a vulnerable one.  “This is where it hurts” gets caught in my throat many days. Sometimes it is easier to hike up my shirt to show my doctor a bruised insulin pump site than it is to tell her about the other types of pain- about why too much or too little insulin keeps me in a mental purgatory of sorts.  When she touches at that particular pain, I might not stand as still and as stoic as I do for the needles.

While it hurts to fully-disclose our insecure thoughts, letting the wall down for a moment is part of being fully-invested as a patient. Doctors and nurses cannot thoroughly help us unless we allow them to do so. Engagement is a two-way street. It starts with vocalizing what’s on your mind so that you and your doctor can make a strategic plan. It may not always be, “This is what hurts.” It may be, “This is what works. How do we make it even better?”

Recently, my internal mantra when I go to see my doctor is try to be honest with your feelings. Not in the sense that I ever maliciously lied to doctors before, but more in the sense that perhaps I was not yet ready to be open and to expose all of my struggles previously. Maybe I was so hung up on tweaking my overnight basal insulin rates that I was disregarding that my breakfast boluses were in need of immediate assistance? Even if I have to begin with small, “baby Tylenol” doses of readiness, starting somewhere counts for a lot more than never starting in the first place.

 

“So, Doctor. My name is Ally. I am your Patient. And this is where it hurts…”

November: 166,650.

WDD 166,650

Diabetes Awareness Month is finally here!  I’ve stocked up on blue apparel and drafted, re-drafted, deleted, expanded, and re-visited my Facebook status updates, tweets, and so on for World Diabetes Day on November 14.  Being new to the diabetes blogosphere/social media arena, I feel the importance of November, and specifically November 14, more so than I may have in the past.  This is our day and our month. I’m clearly biased here, but I do not believe that diabetes gets its fair share of attention in society and in the media. Take a gander at my diabetes rant if you want my heated feelings on the matter.

I am truly happy for other organizations and causes that garner lots of fanfare during their designated months and days. Seeing the State House lit up in pink for breast cancer awareness month in October as a simple gesture of solidarity for the cause always puts a smile on my face.  My siblings’ delight in dumping ice water all over me for the ALS Ice Bucket Challenge is a fond memory for our family, and it is also a reminder of those very brave individuals who battle an insidious disease every day.

As human beings, we all suffer. Lots of us have health conditions; others, financial troubles; some, relationship issues; many, a mix of a multitude of things.  Connecting as human beings to support one another in our moments of pain and in our moments of triumph against such pain is all part of the human connection.  It is time to make that connection happen for diabetes, and the diabetic online community is certainly capable of moving mountains to do this.

There are various creative diabetes awareness efforts going on right now. I am all for anything that supports diabetes in a positive way, and I truly enjoy participating in various efforts when time permits me to do so.  However, we are also a bit fragmented as a group- not because we want to be, but because the options are too vast and our passions for advocacy too wide and multifaceted.  This is not necessarily a bad thing.  It speaks volumes about us as an intuitive, determined community.  We are always salivating over new and improved ideas for advocacy.

Rather than making things more complicated and diluting the already-expansive efforts to raise awareness, I’m going to put a simplified twist on an old diabetes advocacy message. We have all seen those posters outlining how many injections, pump site changes, finger pricks, etc. that a diabetic has endured over his or her lifetime.  Those posters always knock the wind out of me- no matter how old the person holding up the sign may be.  There is a universal truth to these visual aids: One shot is one too many. If we cure diabetes, there will never be another “first shot” of insulin for so many out there whose islet cells may one day rebel.  Sadly, as we all know, the shots are sometimes the “easiest” part when it comes to diabetes.  Again, #1ShotIs1TooMany.

We can live in a world without diabetes.  It is a matter of hard work, advocacy, financing, and research.  As the doc, we already know the ropes when it comes to informing others about our daily lives with diabetes.  But those who do not live it firsthand- who do not wake up at 3:14 am to change failed pump sites, who do not feel the burn of injecting into scar tissue, who do not wipe their child’s tears during a bad low blood sugar- have perhaps not been exposed to the reality of diabetes.

My tactic is simple: “Shock and awe” is good, occasionally. From a marketing perspective, tease your social media followers a bit.  Engage them by throwing out the line and seeing if they will bite.  I plan on posting my picture with the blue diabetes awareness circle etched in using the World Diabetes Day app.  In Paint or a similar program, I will then write in blue the number of needle pokes I have endured over 23 years as a type 1 diabetic.

As an anxious person, there have been times in my life where I would perform blood glucose tests upwards of 25 times per day, so my number of pokes is quite large, and it is most likely an underestimate. To figure out my number, I scribbled crazy mathematical break-downs to include “hundreds of shots in this timeframe, then switching to the pump during this year, then testing more or less, etc.”  The final number- 166,650– is my very best educated guesstimate.  What are your numbers? We are all so much more than the daily pokes and prods, but they have also permanently marked us as strong individuals. Let’s celebrate this concept with others, and let’s vow to find a cure so that the next newly-diagnosed person is not sentenced to years of replicating our needle tallies.

When people chomp at the worm on the end of the hook, I will clue them in as to what diabetes is all about. I will explain how it is not caused by cupcakes, how much it pains me to see the worry on my friends’ faces on the bad days, and the other ins and outs of taming a sadistic autoimmune beast every day.  Then I will tell them about the good stuff: the #doc, #dsma, the doctors and nurses who have refused to give up, the fact that it is not too late to work towards a cure.

When it comes to advocacy this month, do what works for you; support the message that resonates with your own diabetes struggle. If you hear a diabetes joke at the local ice cream shop, politely inform the misguided comedian that his material is outdated based on modern science.  Foster a conversation about diabetes with someone who may be misinterpreting what it means.  Wear blue.  And wear your heart on your sleeve while doing so.

#BigBlueTest

Big Blue Test

The last month or so has been a balancing act of sorts made more difficult by the fact that my balancing skills ended decades ago after a few too many tumbles-gone-wrong in kindergarten gymnastics class.  Work was stacked up on my desk, and many days I found myself slouched in my chair at lunch, reading feverishly before grad class scheduled for that evening and picking at a salad and a half-eaten salami sandwich.  I’d break away for 5 minutes to get a very light, no sugar coffee, but that was the extent of things.  Exercise?  I don’t have time for that! echoed around the tired spaces of my head.

I kept hearing of the Big Blue Test and shrugging it off as something that I’d like to do one day when life wasn’t a three-ring circus trying to fit four rings of obligations into a tiny amount of time.  When Laddie over at Test Guess and Go suggested that I give the Big Blue Test a try, I tucked her words into the back pocket of my mental toolkit for a few minutes, procrastinating yet again when it came to exercising.

I Google-searched Big Blue Test, promising myself to throw in the towel if signing up was even remotely challenging.  In hindsight, it was thankfully quite easy to register.  Big Blue Test is free; it encourages you to get off your bum and move around; and it fosters a good conversation about diabetes and exercising.  It’s a win-win-win-win-win-situation, and you can also encourage others to join in on the fun.  You can download the phone app, answer a few questions (whether diabetic or non-diabetic) each time you work out, and $1.00 towards diabetes efforts is granted by the Diabetes Hands Foundation for each exercise log that you make.

I have found that this app holds me more accountable for leaving my desk to stretch my legs for 15 minutes at work.  The ten second practice of entering the data into the app makes the process fun and rewarding; watching blood sugars drop from even 220 to 205 in 15 minutes is still a little victory for diabetics versus the diabetes monster.  Take that, diabetes!

I may have felt like the world would collapse without me typing up a storm at my computer for 15 minutes prior to the Big Blue Test, but, no surprise here, the world moved along just fine and I was able to enjoy the nice fall weather when taking my weekly walks.  Friends have joined me and we have some great diabetes discussions on our walks after I explain the meaning behind the Big Blue Test.  Krissy over at Krissy’s Dance and Fitness Studio in Rhode Island is helping out our cause by logging her workouts and asking her clients to do the same.  Coworkers have risen to the occasion to keep me company on my strolls through the city.

“So, do you have to take shots?” one walker asked.

“I used to take a lot of shots, but now I have an insulin pump,” I explained, lifting my shirt to show him the “pager” part of the pump.

(Don’t worry, I spared him the dramatic war stories of my insulin pump experiences in recent months for now. Baby steps…)

In all seriousness, though, moments like that help our mission to spread awareness of diabetes. They get people thinking outside of the misguided media portrayal of the disease.  They inspire others to stay healthy by working out with us and giving to a great cause in the process.  There is all good and no bad by participating in the Big Blue Test, as far as I’m concerned.

Lastly, those walks make these moments quite salvageable:

Nurse, while flipping through my blood glucose logs from the past week: “So, cheese and crackers for dinner almost every night…? And ice cream sometimes?  I mean, you did pretty well with your blood sugars, but still…??”

She wasn’t being judgmental, rather, she was rightfully concerned that a fully-nutritious meal definitely wasn’t happening on school nights.

Me: “Yeah, it’s called the ‘grad school special.’ Plus, I ‘worked out’ this week…”