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…”

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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.

“Thank A Friend Day.” Just Because.

Not that I carry oodles and oodles of internet power here, but if you are reading Very Light, No Sugar right now, I invite you to participate with me this week in thanking a friend who has supported you in your diabetes journey over the years.  These people make life with diabetes a bit easier for us through their patience and generosity of spirit.  I have many supportive friends and family members, but out of everyone, Ashley has always shown a keen interest in diabetes and in helping me to advocate for our cause.

She has a secret fan club of doctors and nurses at my diabetes clinic because I have admitted that I bolus more insulin around Ashley.  I am simply more comfortable because she has seen it all- the highs, the lows, the bad moods, and the goofy ones.  She knows what to do if something goes wrong.  And most importantly, she understands a lot about diabetes in a world where not many others fully grasp what it means to deal with this disease every day.  It is difficult to articulate what it entails to have a best friend like Ashley on your team while managing diabetes.  Let’s just say that it’s worth a whole lot; we don’t want my mascara to run everywhere now!  Ashley’s selfless nature has earned her the “Thank A Friend Day” award in my book.  Thank you, Ash!

This is us having our own party in a hotel in Rhode Island after losing power for days during a massive snowstorm in 2013.  I know, I know- we are reallyyy cool people…

Hotel