doc

24. P.S. I Forgive You

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You have been a part of me for 24 years– which is 8,760 days- you selfish, conniving, jerk.

You have pierced my skin over 160,000 times.

On occasion, you have damaged my kidneys and my psyche, my relationships and my view of the world.

They were freak events- both my diagnosis and the insulin pump product defects that plagued me in my twenty-third year of dealing with your crap- but they happened to me, a living, breathing human being who did nothing to ever deserve that amount of suffering.

None of us did.

Today I am not mad at you, though.  I have spent enough time asking “Why?” to know that you don’t care why.  You just do as you do, whatever your flavor of the week is.  Sometimes the stars align and I get my insulin doses right for a day.  Other times, I go to bed frustrated with myself that I didn’t do better, although I know rationally that most of this is not that simple.

I want you to know, however, that there are things that you have not taken from me in 24 years of being an unwelcome guest dwelling in my body.  Through your efforts at taking, you have actually given me things: perspective, friends, academic opportunities, a passion for helping others, the therapies of writing and talking.  There is some reason for all of this, and many times I have known that God- and God-sent people- were the ones who got me through.

Why did I survive a disorienting and quickly-declining 46 mg/dL blood sugar value in my twenty-third year as a type one diabetic?  Frankly, without Dexcom CGM, I wouldn’t have survived, so that’s why.

Why do I read Facebook posts about children with diabetes, fighting back tears as their Moms and Dads document their struggles?  Because I know that these kids will grow up to be kinder, smarter, and more considerate for having gone through it.  And if we have to go through it, we might as well turn out as the type of people everyone would want to have as friends.  We might as well turn the bad into as much good as we can.

Why- as I sat in a waiting room in Boston, the sickest I had ever been with persistently high blood sugar that would not budge no matter what we did, scared and alone- did a doctor sit next to me quietly?  Why did she urge me to receive her treatment after I had run from it months earlier?  Why was she so confident that we could do this?

Why was she right?

We are doing this, and we’re going to continue to do this- to fight back, to live well.    

Why am I blessed when there are thousands of people all over the globe who may not have proper access to insulin and medical professionals?  I don’t know why, but I am cognizant of this idea today, especially.

Now, in my almost twenty-seventh year of existence, I have reached marker number twenty-four with type one diabetes.  It has not been easy, but it has been… something.  Some people never have this chance.  Some people are not diagnosed in time.  Some people die waiting for life-sustaining medication.

“Some people” are people who have feelings and families, and who could have bright futures, too.  Spare a Rose, Save a Child / Life for a Child get it right; those of us who are fortunate enough to have access to insulin can pay it forward with a few clicks of a mouse and a few dollars donated.

At least for today, diabetes, I want you to know that I forgive you.  I haven’t had it as hard as some.  In fact, I can count my blessings because of the perspective that you have given me.  There will be many more times that I will scream my lungs out in frustration with your stupid games.  But if I don’t forgive you right now, I will live however many more diaversaries there may be with a sense of embitterment at the life that I could have had without you in it.

Instead, today I recognize that living despite having you along for the ride is a gift in and of itself.  Please know that I am going to make the most of that life.  Thanks for reminding me to do so.

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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

Housekeeping

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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…”

Thank you, Veterans and Service Members!

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I work with Veterans and Service Members and I am blessed to call many of them my dear friends.  They hold a very special place in my heart.  For those of you reading this who have served or are currently serving, thank you for your service and I hope that you enjoyed a nice, relaxing Veterans Day with family and friends.

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.

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…”

Keep Calm and Novolog On.

I owe you a detailed description of this week’s meeting with the insulin pump manager and my health care team, but that may have to wait until the weekend.  (If running on grad school vapors was a thing, it would definitely be “my thing.”  Real life beckons at the moment).

In the meantime, for those of you who reached out to offer help and to commiserate upon reading Broken Record, first of all I want to sincerely thank you again.  Your words of encouragement, sharing of the blog post, and overall viewership of that piece really helped to keep me afloat and to work to fix these problems.  And you also taught me that if I do not fix the pump problems, that is okay, too.  Life will go on, and I will adjust accordingly.  Many of you have done so already; thank you for paving the way.  I felt your virtual hugs for many days, and that support is something that I will carry in my heart for a long, long time.

Until I can write a lengthier post, I do want to provide updates, especially for those of you who are going through what I am/was with the insulin pump recently.  The following are just a few positive things to consider if you are/were in my shoes with the pump:

1.) Try switching insulin types in the pump.

Novolog has made an enormous difference for me.  I am not sure why my body/pump decided not to get along with Humalog recently, but it was a very nasty divorce process.  There were lots of tears and the neighbors definitely give us weird looks when we walk by now.

Sometimes just testing the waters with something new can give your body and mind the break that they need to re-group. I have witnessed a very positive difference in my blood sugar numbers since the insulin swap-out.  And mentally, even if the insulin type switch is solely placebo effect, I will take any positive change at this point.

2.) Bubbles

Novolog has some bubbles, too, but not to the same extent as what I witnessed with the millions of tiny, feisty, stubborn Humalog bubbles. Novolog’s bubbles are bigger and fewer, allowing for the insulin in the reservoir to continue to do its job and to squeak by the bubbles.  This is just my experience at this point in time, but so far, so good.  More to come in a future blog post…

3.) Ask and you shall receive.

I asked for the doc’s help regarding my issues, and I was blown away by their feedback. I also semi-harassed Medtronic and my health care team to troubleshoot with me, and, to their credit, they heard me out.  They set up meetings quickly, they yielded multiple phone calls, they read lengthy emails, and they all agreed that something had to be done.  In the past I spent my hours and days wallowing in the idea that “Life might just have to be like this on the pump.”  Then I saw many of you living well with diabetes and realized that I was horribly mistaken.  You were living with diabetes, and you were doing so gracefully and successfully given the rebellious nature of a major organ.  I, on the other hand, was stuck in the mud with my wheels spinning, living without direction in my diabetic journey.

Once I admitted this, acknowledged that what was going on was not okay, and asked for assistance, the burden did not feel so heavy and so lonely. As of today, I am in the “icing my back” stage, rehabbing from carrying the cumbersome load of previous insulin pump issues.  But I am standing a little taller, my head is held a little higher, and my heart is definitely bursting for having you all to bear witness to the struggle and to cheer from the sidelines along the road to getting better.

I will forever be humbled by all of the hands in the health care pot that reached in, without hesitation, to help in my time of suffering.

Thank you…