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.

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“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.

 

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.

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.

Hemingway for the Win!

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“Write hard and clear about what hurts.”  -Ernest Hemingway

 

The rookie to diabetes blogging this year, I soon discovered a community that rises up and carries its pain together like garden ants that have stumbled upon a cracker at a picnic- only we’re not as gross, we don’t have antennae, and we would surely bolus for the cracker carbs.

In the act of lifting up this thing together- this disease and all of its pokes and prods, interrupted sleep, hunger, thirst, laughter, and tears- we speak and write from the souls of those who have stared down what hurts, and who will stare it down again tomorrow.

That’s what 2014 was for me: being awestruck by the passion, wit, humor, creativity, warmth, and truthfulness of the diabetic online community as it writes hard and clear about what hurts.

You make it hurt less.

May the New Year be a healthy and happy one for the #DOC.

Pros and Cons, Do’s and Don’ts, X’s and O’s

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I could write a 200-page manifesto about the ups and downs of 2014 while insulin pumping and then transitioning to shots, but for the sake of not straining our eyes by reading a mile-long exhaustive blog post, here are some main points worthy of highlighting:

Pros of Shots:

  • I know with certainty that insulin is getting into me.  A reliable insulin delivery mechanism is something that I will never take for granted again.  There is something to be said for a good, old-fashioned jab with a syringe.  Plus, ketones have packed up and moved out for now.
  • The mental relief that this offers is difficult to articulate.  We are slowly but surely building back trust: a trust in insulin that it will do its job, a trust in eating a nutritious meal and knowing that insulin in my body will cover that food, a trust that I will not wake up in the middle of the night in a ketonic state, and- frankly and in violation of the “double negatives rule”- a trust that I will not not wake up one day due to ketones.
  • Trusting in the doctors’ knowledge:  While taking over twenty units of long-acting insulin such as Lantus after a decade of pumping might not be a big deal to some diabetics, for me it was a huge mental mountain to wrap my head around.  Multiple doctors chimed in throughout this process, thankfully.  One in particular yielded emails at all crazy hours of the weekend.  And the other reassured me over the phone that I would be okay, her voice calm and confident.  On the first day of injecting, I said a quick prayer and reminded myself that these doctors went through graduate and medical school and have been doing this for many years; I had to believe in their expertise.  So far, they have proven that they know their stuff!
  • Taking long showers without rushing to get out and reconnect to life-sustaining medical equipment.
  • Only one insertion (Dexcom) about every two weeks.
  • Wearing only one site (Dexcom).
  • Crossing a “Never Have I Ever” trump card off my list- at least if playing with other diabetics.  (I never liked that game, anyway).  “Never have I ever given myself an insulin injection in the stomach…”  Oh wait, I just did it three times today without flinching.
  • Finding the humor in the situation.  For example, shooting up at a rest area recently while a horrified mother spotted me and promptly peeled out of the parking lot, the wheels of her minivan screeching, after she unfairly assumed that I was a heroin junkie.  Far from it…
  • I don’t need a behemoth-sized-suitcase filled with back-up pump supplies when I travel.
  • Trying new things:  Even three months ago, I never would have consented to trying a different way.  I have the #doc and some very patient, compassionate doctors to thank for renewing my strength and for holding me up on the bad days.
  • Honesty.  This process has made me more upfront with myself and my doctors.  For years, I skirted around the issues, felt trapped in one method of diabetes treatment, and perhaps did not accept how multifaceted my insulin pumping problems had become.  No one likes to feel desperate, but I can see in my old blog posts, emails to pump reps, tears cried to my doctor, and so on that what I was doing on the pump was not working as optimally as it is intended to; hence, we needed to at least try something else.  A few weeks later, here we are…

Cons of Shots:

  • I’d be lying if I said I didn’t miss the pump (very strong emphasis on the “good pump site” days).  The stability in my blood sugar was better on the pump, but perhaps some of the severity of the recent “shots rollercoaster” is the fact that it’s only a few weeks into the trial and we have a lot of insulin dosing details left to address.
  • The pump is much more convenient.  Out of habit, I still reach down to my side to take a correction bolus with my invisible pump friend, only to find him missing in action.  I am in the process of waiting out an insulin pen prescription, and I hope that this makes things a bit easier in the day-to-day aspects of shots.  Currently, I prefill some syringes with typical Humalog doses or I manually fill the injections, making it a somewhat timely and tedious process.
  • Shots require more thinking.  I have to really focus when I draw up the amounts.  I quadruple-check that I have drawn up twenty-three units of Lantus, rather than Humalog.  (My doctor recommended using nail polish on the insulin boxes and bottles to help differentiate between them.  I know that there are colored lids, ties, etc., that you can also purchase.  The bottom line is that you want something that will catch your eye and make you focus on taking the correct type of insulin).
  • Where, oh, where, have my temp basals gone?  Plus one for the pump in that regard.
  • Once the insulin is in you, it’s in you for the day.  Currently, I take one Lantus dose daily, but we may transition to twice a day for some fine-tuning.  I am too high during the daytime, but at night I crash harder than a college kid at her first keg party.
  • Bruises.  Lots of them.  My hand-eye coordination has always been a bit defunct (i.e. my kindergarten teacher sent a note home telling Mom to have me practice cutting and coloring in-between the lines over the summer).  Perhaps this deficit is why I simply suck at shots.  It’s the opposite of “you can give it out but you can’t take it.”  Actually, I am pretty darn good at taking shots without any tears, but when it comes to giving them, the “stab repeatedly” method doesn’t work so well.
  • Lantus burns.  It’s not excruciating, but it’s there.
  • Socially, it’s either inject in public, or scurry off to the bathroom for every injection.  Because I find that I really have to concentrate when taking Lantus to make sure I’m drawing up the right dose, of the right medication, at the right time, I often take that shot in the bathroom at work so that I can have some privacy to focus.  I do not have much shame about taking injections in public, but it is more the “always having to have the diabetes conversation” element that I sometimes would rather avoid.  However, I have done many injections in my abdomen at work and in the local coffee shops, and no one has noticed.  On the plus side (I think?), my friends are eager to puncture my skin with a needle whenever they can have the chance; so far, I trust my mediocre injection skills over theirs.

Do’s of Shots:

  • Consult your doctor(s).  Consult the diabetic online community.  Weigh your options.  Take action if you are ready to try something new.
  • Write down all your pump information, such as basal rates and carb ratios, so that you have it handy if needed in the future.
  • Tell someone what you are doing.  Transitioning from the pump to shots after many years of pumping is scary and it is an educated-guessing-game under the guidance of medical professionals, as most diabetes-related things are.  During this time, there is a slightly-elevated risk that something out of the ordinary may happen, such as a severe low blood sugar due to an inadvertent insulin dosing mishap.  I emailed a few friends at work one day when I was not feeling well, on the off chance that an emergency did occur; I told them the name of my diabetes clinic and some basic information about my transition back to shots, on the very rare chance that I may not be able to articulate these facts myself to an emergency responder if a bad situation occurred.
  • This is another reason to have proper medical identification.  You can read more about this under disclaimers and disclosures, but MedicAlert has served me well for over twenty years.  I feel comfort in knowing that my medical and contact information is stored in their database, and that if I were ever unconscious an emergency responder would know that I was type one diabetic simply by reading the back of a MedicAlert medical identification bracelet that I wear at all times.
  • Restock on supplies: glucose tabs for the car, juice at the office, etc.
  • Understand that you may require more insulin in your boluses than you currently do on the pump.  My correction factors and insulin to carb ratios have changed significantly as we iron out the Lantus details.

Don’ts of Shots:

  • I do not regret trying shots.  My doctors and I were ready to do this in this moment.  In hindsight, however, I picked a rather difficult first week to test out multiple daily injections again.  Guys: You’ve been warned.  The next few sentences discuss female stuff.  #sorryimnotsorry 
  • A few days prior to the beginning of my cycle, my hormones seem to have an epic party where they are up all night chugging Red Bull and taking vodka shots within my body.  My blood glucose refuses to budge from its perch high atop the elevated blood sugar peak, despite increased insulin doses which are sometimes quadruple my normal amounts.
  • Dealing with this frustration on top of re-learning shots, as well as having planned a purposely-conservative Lantus dosage with my endocrinologist for the first few days just to be safe, created a high blood glucose dilemma for us.  I was stuck in the 300s and 350s for days on end, and was more or less feeling miserable.  Once the hormone block party subsided, things evened out a bit and I began to feel much better.  So, for the ladies, I would recommend planning around the week of your cycle if you are interested in transitioning back to shots anytime soon.
  • Don’t switch back to shots solely because you do not want to be attached to a medical device at all times.  To be honest, I have not felt an overwhelming sense of “freedom” being without the pump; in fact, I miss it for its good aspects quite a lot.  It was cool for like, a day, to have one less site to worry about while showering, but all in all, this should not make or break your insulin management decision.
  • Don’t throw in the towel quickly.  I’ll admit, I was ready to do so based on the first few days of non-stop highs.  I verbally committed while on the phone with my doctor to try for a week, and then I tweeted it out to make sure I held myself to that goal.  On the first week of the trial, the stubborn Italian part of me was not going to give up until Saturday, which would mark the full seven days of shots.  On Thursday, I emailed another doctor and asked the question that I wasn’t answering for myself: “So, I should try this shots thing for more than a week?”  She encouraged me to continue with the shots.
  • I was looking for her affirmation and for someone else to make the tough call, and I am happy now that she gave me the tough answer.  It was a difficult first week, but by the second week it was infinitely better.  Now on the third week, we still have things to tweak and my blood sugars are far from stellar, but I do feel better and there is insulin getting into my body.
  • The back to the basics, simple things about insulin are now appreciated more than ever.  I take a shot and I watch insulin do its thing.  In that regard, I am truly blessed to have access to this life-sustaining medication and to doctors who can tell me how best to use it.

X’s and O’s:

Consider this a big virtual hug to each of you for being my sounding board during a trying time in my diabetes journey.  Knowing that someone out there was reading this and perhaps going through a similar trial, receiving innovative suggestions to insulin management, perusing your blogs and tweets, and overall feeling the strong sense of community is what made the hardest part – taking the first step, or, in this case, the first shot – totally worth it.

My long-term plan is to continue this shots trial for another month or so and then perhaps switch back to the pump with reduced pump basal rates and some background injected Lantus basal as a precaution for faulty-pump-site days.

I feel blessed to have made so many friends in the diabetic online community and to have a health care team that has steadfastly worked to make me feel better.  One day many months ago, when my head spun from ketones-induced nausea after another failed pump site, I thought to myself, Maybe I should start a blog?  There must be someone out there who “gets it,” too?  Today, having been encouraged to fight for my health through the inspiration of the #doc, I lift my very light, no sugar coffee cup to you.

Thank you…

XOXO,

Ally

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…”

Move along, Negative Nancy!

Truth be told, I haven’t posted as much because I’ve been a little too Negative Nancy and not enough Very Light, No Sugar for my liking.  Consider this an apology of sorts.  This disease, in my adulthood, has changed me.  I miss the carefree kid in high school who was a dorky, yet extroverted, fun-loving person.  Nowadays, I don’t know what happened to that girl.  I’m still Ally, but on the rough days, I’m Angry Ally.

“Anger is a secondary emotion,” my friend said last week, when we chatted about the typical emotional twenty-something-year-old female stuff.

I have always known that, but the way she said it just stuck with me.  She’s right.  There’s more depth to my anger.  I’m hungry, for starters.  On the bad pump days when my blood sugar hovers in the 250s and 300s, I avoid carbs as if they were the Grim Reaper.  Sometimes it takes the entire day to recover after a pump problem, and I have just adapted to the growling in my stomach and the hunger pangs lodged in my ribcage.

“You look skinny to me- skinnier than when I last saw you. It’s all of this ketone stuff with the pump, huh?” my nurse asked gently as she tried to identify good insertion sites for the pump.

“No.  I’m actually gaining weight from the grad school diet,” I defensively replied, convinced that she was wrong.

That night I stepped on the scale and was surprised to see the 5-pound weight loss.  While it is an easy coping mechanism for all of us to laugh it off and say, “Well, maybe ketones bring one positive to the table,” the reality of that statement is that it is not a joke. Losing weight due to ketones is never a good thing. It is your body burning fat for fuel. It is another painful pump site because you’re out of cushioning. It is how diabetic eating disorders can begin, and it is harmful to the body no matter the circumstances leading up to it.

 

Full disclaimer here: I wholeheartedly intend to eradicate ketones from existence whenever possible, and I would rather gain some pounds than suffer one more day with ketones. But I am mindful of how easily this could escalate into a larger problem. I believe that this is an issue that needs to be discussed more often in the diabetes community, so here is my limited knowledge on the topic and my best effort to get a more open conversation going. If you believe that you may have an issue related to this topic, please know that you are strong and that you owe it to yourself to feel better by getting help.

Beep, beep, beep. Snooze. Ten more minutes. No, eleven. No, thirty-five. Yawn. Working fulltime, grad school at night, and driving to Boston regularly while figuring out the diabetes dilemmas are exhausting in and of themselves. Then, as we all know, diabetes loves to come out to play from dusk to dawn; it’s like a Great White Shark or something. In other words, it is a large nuisance with a ferocious bite. We’ve all been there: Head on the pillow, deep breath, fading into sleep, and then… EEEEEE EEEEEE EEEEEE from the Dexcom on the nightstand. Dexcom is like the loyal dog which never strays from its owner, and I am so thankful to have access to this lifesaving product. (It’s as good a time as any to remind us about #MedicareCoverCGM, right?) But it is just another example of the many ways diabetes disrupts our rest.

Being tired and hungry, for me at least, means that my patience threshold is running on vapors by 10:00 am most mornings, no matter how many very light, no sugar coffees are consumed. Little problems seem like big ones when all you want is pizza for lunch but you know that salad with a few miniscule pieces of chicken is your untimely fate for the day.

Or that one dramatic coworker is going on and on about how much his head cold has negatively impacted his life, and you can barely contain yourself from throwing vocabulary daggers his way- something along the lines of, “I HAVE POKED MYSELF WITH 50 NEEDLES. IN. THE. PAST. THREE. DAYS!!!!!” But you let it slide because you don’t have the energy to fight another battle. But then you feel guilty because you missed a chance to advocate and enlighten the ignorant, damnit! And then you feel like your focus is only about you, when you know full-well that many other people suffer, too. And then you start to live-tweet your emotions, and you worry that you are annoying the heck out of the people in your virtual support team, whether a valid concern or not. And then you feel guilty again. And then your CGM buzzes and you’re still 278 after the second pump change…

I admire the people in the DOC who are open about their emotional struggles with this disease. It takes true guts to be vulnerable to that degree. So, yes, I have a front row seat in the fan club for, well, all of you. It is difficult to come to grips with one’s own emotions at times, but in the long run it provides a healthier mental and physical outcome, if history and science are any indication.

Although being Negative Nancy is not fun, maybe I should also give myself some slack here? Diabetes is a daunting, never-ending job, and those outsiders who say “Laughter is the best medicine” probably haven’t tried to laugh when they have moderate-to-large ketones. It’s just not happening, people. But I can promise to attempt to tap into that whole thing called “perspective” that diabetes gives us a bit more often. We all know that little things aren’t the end of the world because we have already lived through the end of the pancreatic islet cell world. Badasses.

Thanks for putting up with my grumpy tweets. Sometimes it just helps to be heard.