Hope in November

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

This is my Letter of Hope:

Hi!

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

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

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

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

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

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

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

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

Sending love, and extra coffee!

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Localized Empathy

Boston traffic sucks.

Especially in the summertime.

To save myself some unnecessary frustration, I did something that I do not normally do: booked a few local medical appointments here in Rhode Island.

Don’t get me wrong: In my graduate studies I met many nurses and healthcare folks who work in our small state and do a darn good job making patients well.  But, having begun my care in Boston at a young age, I historically stuck with the endearingly-nicknamed “Mecca of Healthcare” for my treatment.

An hour commute is a small price to pay for the best healthcare on earth.  I grew up in the Joslin waiting room, watching families fly in from all over the world to seek help for their kids.  I accompanied my #MedX bestie, Danielle Edges, and her brave daughter, Alex, when they traveled to Boston Children’s Hospital from Phoenix, AZ, earlier this year.  Trust me: Boston has it going on, and I am always cognizant of how blessed I am to live relatively close to these topnotch facilities.

The problem, though, is that my trips have not been an hour commute for as long as I can remember lately.  Between traffic coming from and going to Boston, as well as time with the provider, I am usually gone for 6 to 8 hours per appointment.  The bags underneath my eyes were growing larger by the day, and my attitude was strained.  I needed a break.

So, I made a pact with myself: For reasons of self-care, I would book some “non-essential” appointments back home in Lil Rhody.  While every medical appointment is certainly important, the urgency is not necessarily there for this local stuff, versus the “essential” diabetes tune-ups that I receive in Boston.

One hot afternoon in July, I gulped down my coffee and headed inside a RI dermatologist’s office.  I have experienced itchy-then-painful blisters on my hands since childhood, and no doctor has ever been able to crack the code.  If the best providers in Boston specializing in autoimmune disorders don’t know, how will anyone else? I naively wondered.  But, with the commute being a mere 15 minutes, it was worth a shot.

I arrived early to fill out new patient paperwork as instructed.  Parking had been easy- no expensive, overfilled parking garages.  The receptionist and intake nurse were both friendly.  And finally, it was time to see the doctor.  She was kind and concise.

“Do you have a blister right now?”

“Yes.  It’s healing,” I replied, extending my hand for further inspection.

“Oh, I know exactly what this is.  It’s dyshidrotic eczema- common in diabetics.  I’m actually shocked that you went through decades of your life with no diagnosis for this; how awful!  I’ll prescribe you some hydrocortisone creams which should help,” RI Doctor advised.

+1 for the local expert!  

I am a little miffed that Boston dropped the ball on this for so long, considering I looked like a burn victim who couldn’t hold a pencil in third grade due to the severity of the blisters.  However, I am SO grateful to finally have an answer and effective treatment options!

Then it was time for the mole check.  Melanoma does not discriminate between right arm or left arm, right butt cheek or left butt cheek.  Almost every inch of the body is observed to ensure safety.  Smart, yet still kind of awkward…

“Just so you know, I’m wearing a…” I began.

“A thong?” RI Doctor replied.

We’ve seen it all, honey, the observing nurse thought.

“Actually, it’s a continuous glucose monitor for my type 1 diabetes.  It’s on my…”

*Ten seconds later*

“Oh!  Good thing you warned me!”  RI Doctor exclaimed, having located the sensor where the sun doesn’t often shine.

As odd as it was to have a conversation while naked in a room among new acquaintances, the professionalism and thoroughness of the doctor made the experience more bearable.  I felt at ease knowing that the eczema- which has for years induced a stress response in my body, and, therefore, my BGs- would finally be tamed, and that the funky mole on my ribs was nothing dangerous.

“When were you diagnosed with type 1?” RI Doctor asked.

“Just before my third birthday.”

“And your parents caught it early?”

“Early enough that I survived.  But I was in DKA.”

And then I thought again about the little boy whose name I still do not know, who passed away from complications of T1D diagnosed too late, just a few days before my arrival in the same ER.

“Wow.  That must have been so hard,” RI Doctor wondered aloud.

“Yeah…”

“That must have been so hard.  It is so hard,” she pushed.

“It is…” I admitted.

 

And there it was: the truth, exposed.  Diabetes is hard.  But we’re still fighting.

Sometimes localized empathy makes all the difference.

#weneedacure

 

Housekeeping

002Sure T Insulin at Connector Site002

Before I publish a lengthy manifesto on the pros and cons of insulin pumping versus injections in regards to my recent switch over to shots, there are a few long overdue housekeeping details that I would like to highlight for those interested.

1.)  Meeting of the Diabetes Minds

Around Halloween, I had a big appointment with an insulin pump representative and my nurse.  My doctor also sat in during her lunch break.  I know that it was around Halloween because I brought a bag full of insulin pump supplies as well as Halloween cupcakes coated in frosting (see above) as sustenance for those who were kindhearted enough to meet with me on their free time.  So, it was a meeting of the multifaceted diabetes minds, fueled by large amounts of sugar for those with properly-functioning pancreases.

We went through every scenario, including a live insulin pump site change.  They all nodded their heads in agreement when I showed them how Humalog bubbled up quickly in the reservoir.  We were all baffled as to why the Sure T infusion sets continued to pool insulin at the connector site.  And so on.  Basically, we knew there were problems, and we had to try to tackle them each individually.

2.)  Sure T infusion sets

Regarding the Sure T, I have said it before and I will continue to say it: I like Medtronic.  Their pump rep nurses were as gentle as possible when we did the “human pincushion” trial and error game of inserting into different sites during appointments over the past two years.  Those days were not easy for any of us, on a mental and physical level, but their confident reassurance that it was going to be okay is something that I will always carry with me.  Medtronic’s customer service is timely, polite, and helpful.  One manager in particular has logged dozens of hours on the phone with me while we documented and troubleshooted what we believe to be a rare Sure T product defect.  Medtronic has sent me various lot numbers of Sure Ts to try, and I have sent them back my problematic sets for analyses, the results of which are still to be determined.

In a nutshell, we have tried repeatedly to make the Sure T work for me, but maybe the Sure T doesn’t like people with very light, no sugar coffee orders.  Sure T might perform better for a different diabetic coffee enthusiast on a different day.  You tell me.

The recent product warning sent out by Medtronic is believed to be unrelated to my issue.  See image above; note that insulin droplets pool at the connector site and do not get into my body.  The proof is in the sugar-free pudding: after many site changes, subsequent ketone spikes, stubborn high blood sugars, and droplets of insulin falling out at the site, we have decided to hold off on using the Sure T until new lots are manufactured in the future.  Although I like the steel needle aspect of the Sure T, as bent cannulas cannot occur, if/when I transition back to the insulin pump after doing multiple daily injections for awhile, I will most likely give the Medtronic Quick Sets another try.

Whenever I switched a Sure T site out, I always ate low-carb for a few hours afterwards in case the insulin was not getting into me.  My fear is that someone who is unaware of this risk might consume a big pasta dinner and have an infusion set failure unbeknownst to that person, leading to a very dangerous situation very quickly.  I disclose this information so that you are at least aware of this potential problem if you also use Sure Ts.

Note: If you experience any insulin pump problems, please contact your respective pump company so that they can document the issue and investigate safely.

3.)  Bubbles in insulin pump reservoirs

I detailed this extensively in Broken Record, but to summarize briefly: These were more than champagne bubbles, they blocked proper insulin delivery, and they caused blood sugar to stagnate at high levels until the problem was identified and the reservoir changed out.

A Facebook user recommended that I pre-fill a reservoir a day before an expected site change, let it sit undisturbed to allow big bubbles to settle, and then prime those bubbles through the tubing on the day of the site change.  For some reason, letting the reservoir sit for a day helped immensely.  I also found that Novolog produced bigger bubbles which were easier to eradicate than Humalog’s millions of feisty bubbles which had a knack for procreating over time.  Get a room, Humalog love birds!

Please note that this trick is not recommended by pump companies, as insulin has been shown to lose efficacy over time in the plastic reservoirs.  However, given the frequency and degree of problems I encountered with pump site changes, I found that pre-filling the reservoir was a risk I was willing to assume, and I was always cognizant and on the look-out for problems related to this risk.  So far, the benefits have outweighed these risks.

I hope that this update is helpful to anyone who was curious about the possible solutions identified for my insulin pumping problems.  Thank you again to all who offered encouragement and advice along the way.  More to come soon with a post chronicling the transition back to insulin shots.  Yeehaw!

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…”

If you can’t beat ’em, join ’em.

Random middle of the night thoughts, to the tune of Flo Rida’s “Low”:

Shorty got those apple juice dreams,
Snacks are not a cureee,
The whole fridge was eaten by herrr.
Glucose hit the floor,
Next thing you know,
Dexcom flashed low, low, low, low, low, low, low, low…