insulin pump

Gym, Tan, … Insulin Pump?

The return to insulin pumping continues to be mostly smooth sailing. As I’ve shared in other outlets, I am running ‘exercise mode’ on the t:slim a majority of the time during this transition phase. Simply stated, exercise mode creates a larger blood sugar buffer zone, in theory to minimize hypoglycemia risk while working out.

Emotionally, this option is helpful when taking the initial leap of faith with these fancy pumps in that there is room granted for fine-tuning. My doctors and I also decided to err on the side of exercise mode due to physical safety reasons. In layman’s terms, ‘early worsening’ is a phenomenon in which rapid decrease in Hemoglobin A1c can induce too much stress on the blood vessels, aggravating or causing complications of diabetes. Because the pump was most likely going to stabilize my blood glucose range more so than injections had been, we expected an A1c drop. Utilizing exercise mode constantly, for now, mitigates some of this effect by gradually reducing average blood sugar levels while (hopefully) preventing damage to the body.

‘Early worsening’ is one of the cruelest aspects of diabetes. Society yells at us our entire lives to, “Just stay in control of your diabetes!” – as if our health was not affected by a gazillion different variables each day. When folks finally start feeling physically better in an acute stage of lowering blood sugars, the risk of long-term damage can arise, possibly unbeknownst to the individual with diabetes if not made aware of this counterintuitive concept.

Talk to your own healthcare providers before changing your diabetes management. This is simply an idea that has worked for me thus far, and I believe the topic should be on our collective radar more often. As time goes on, I will likely tweak my style again to a different mode of pumping with a tighter blood glucose range. For now, though, I am still hopeful for the ideal mode one day in our futures: cured! (Accessibly, affordably, and equitably, of course!)

Implementation and Design, Add Wine

*Content warning: This blog discusses and contains images of insulin pump, continuous glucose monitor (CGM), and blood sugar values, which can potentially be upsetting in relation to personal diabetes challenges. Please be advised of this before reading further.

I recently made the leap of faith to Tandem’s t:slim insulin pump with Control IQ software, and my mind is totally blown by all this tiny machine does akin to a normally-functioning pancreas each hour. Many others have chronicled their positive Tandem experiences, and at a later time I hope to join them with further blog posts. But the more pressing theme begging me to be written is one of design. Taking Stanford Medicine X training to heart, I’ve employed a discerning eye in the pros and cons of this pump from a user experience and design perspective.

Assumedly, the brilliant computer and biomechanical engineers at Tandem had their reasons for how they manufactured and coded this insulin pump. I’m not here to argue against their science, as this pump has already been life-changing in my own n=1 study within a few short weeks. I do not know if they consulted with any focus groups of people with diabetes in their creative processes, and I cannot falsely purport to represent everyone else’s opinions here. So with those disclaimers, for what it’s worth, here are my implementation and design 2 cents:

The Big Picture Design Pros:

If People magazine ranked the sexiest medical products on earth, this pump would be up there, just saying.

Having Dexcom tied right into the pump is not only helpful from an algorithmic, insulin-dosing standpoint. Simplified, it is one less clunky thing to carry. I still sometimes reach for my old Dexcom receiver out of habit, only to realize that now one small device clipped to my belt or slipped into my jeans pocket is simultaneously running the insulin show and serving as my Dexcom screen. (See also the diabetes online community (DOC) for enhanced pump clip suggestions!).

The algorithms…

provide far more input than any human being can possibly do each day. I plan to blog about the emotional aspects of this pump in the future, but to briefly convey it here- this concept has given me a level of peace after three decades’ worth of managing my own diabetes. People with diabetes are handed blunt instruments and routinely yelled at by society and medicine to essentially, “Just dose insulin and achieve ‘perfect’ control (which doesn’t exist, by the way), and no matter what happens, it’s all your fault!”. Watching this pump adjust my basal rate 32 times and microbolus twice, just in an overnight timeframe, to keep my blood glucose at a stable, safe line really hammered home how innovative this technology is, how much I wish everyone worldwide had easy, affordable access, and most glaringly, that what we have asked people to do for decades was never remotely possible. We tried our best, but we just plain can’t kickstart a faulty pancreas 32 times overnight, every night, forever.

Infusion sets

While I wish there had been more opportunities to test drive infusion set samples prior to the official pump start, I finally rationalized that kinked cannulas were one additional worry I did not need when returning to pumping after a long hiatus. Tandem’s TruSteel sets have been a breath of fresh air in terms of trusting that insulin is being delivered fully and properly, and the pain of having a needle set under the skin for a few days is negligible thus far when compared to the searing pain of needle-into-muscle from the past / competitor sets.

Built-in safety checks and balances

I feel comfortable that this pump will not accidentally bolus insulin in my sleep or if jostled in a crowd due to the many safety mechanisms included. The prompts explaining the basic steps involved with a cartridge and site change are helpful, too, as extra reminders of when to detach from the pump and what should happen next.

What I Would Change:

Again, see the disclaimers above. I am not saying Tandem did not have reasons for their current designs. But from a user point of view, I hope they will consider consulting with patient advocates and trying new ideas in future models.

Place the most important data in larger text on the screen!

My eyes are still functioning fairly well for my age, yet I am often frustrated by the pump’s tiny displays of numbers, which really matter in the diabetes experience. In my opinion, the Big Three are current Dexcom reading, insulin on board (IOB), and the amount of insulin being dosed via a bolus when applicable. To add a fourth option, current basal rate number would be helpful to have displayed upfront on the home screen, too.

Particularly when a bolus is occurring, the text at the bottom of the screen is far too small. I’d recommend Tandem take away approximately 1/3 of the Dexcom graph space on the home screen (the pink sticky note space in the example photo below), and use this bonus area to incorporate larger font for the data more frequently relevant to people with diabetes. For example, while it’s cool to see my blood sugar graph from the past 3 hours, I’d rather swap in some extra clicks to get to that particular graph than constantly have to jump to other screens to see my current basal rate or time of last bolus. Sacrifice that Dexcom graph space to personalize what the user wants to access easily in future models.

I’d additionally recommend inserting a “Favorites” option at the bottom of the home screen, similar to saving tabs in a web browser, in which the user can input screens they turn to often. For example, my personal preference is to go back in the History display and analyze boluses from the past few hours, which may inform how heavy a bolus I take now. Other users may find helpful meaning in Dexcom chart data from the past 12 hours, and wish to access that tab faster. If users could implement their own Frequently Utilized sort of list for themselves, this simplifies the diabetes management process even more so than this pump already does. At the end of the day, when people with diabetes are still piloting this plane, all of the little clicks and taps we make add up over time. How might we respect further design autonomy in future models?

Training / Communication

I can only speak for myself, and I want to be clear that this is not a gripe against the knowledgeable, compassionate Tandem representatives I spoke to many times over the phone, nor to my individual Tandem specialist trainer who calmly assisted in making this process doable and has been kind in yielding questions and checking in as needed. They are working within a larger, broken healthcare system and trying their best with what they have.

Yet I must express, the pump start up process was haphazardly piecemealed together and poorly communicated, particularly when obtaining initial supplies and making appointments. If not for the navigational persistence garnered by my professional and educational background in healthcare, I’d probably still be at Square One without a pump. I made dozens of calls between Tandem, suppliers, and the Endo clinic, babysitting, “Okay. XYZ is done. What’s the next step?” And many times no one seemed to really know. This bureaucratic disorganization delayed the actual pump start date for weeks.

Many of us have thirty or ninety days’ worth of supplies worked out with insurers and suppliers. We are being asked upfront to spend hundreds of dollars on large orders of infusion sets which may not end up being best for our individual case, for example. Or then the Endo clinic prescribed many boxes of infusion sets but not enough cartridges. The general oversight has been lacking. If not for kindhearted members of the DOC and friends already using Control IQ, I would have been even more lost as I sorted out initial tips and tricks for an ideal pumping experience.

Endo clinics and major diabetes industry names and so on do not have to like me or consult directly with me, per se. But that said, the wisdom of the lived experience is so valuable. (If you believe in real patient advocacy, reimburse such expertise accordingly, by the way). I would be happy to be hired as part of a focus group on formulating a more comprehensive, linear implementation training guide to help clinics, pump companies, and diabetes patients, alike, in safely and successfully getting situated on a new pump. (If your company is interested, feel free to leave contact information in the comments on this page and I will email you back). And again, if not me, please consult with other patient advocates. I am sharing oodles of feedback here because I want people with diabetes to have the best quality of life and health that we can, but a good company will not just take such ideas and run away; this work involves deep, meaningful engagement between all parties.

Cartridge fills / site changes

No matter how many years I’ve been away from pumping, I still grimace on site change days- not so much in terms of acute pain from the needles involved, rather due to time, inconvenience, and complexity. I’m not the first to note that Tandem’s process is tedious; my user guide is Post-It-Note-tabbed to pertinent instructive chapters, which I read at every site change. I’m using “site change” interchangeably with “cartridge change” here, but the latter part is actually the burdensome aspect.

While Tandem’s “inject air into the insulin vial, remove air from cartridge” routine does seem to make a difference in terms of maintaining insulin efficacy within the pump, the cumbersome tools and learning curve to get there could use improvement. The miniscule white cartridge hole where one must insert a ginormous needle to spray hundreds of units of insulin is daunting when first using this pump. What if I accidentally stab my own thumb?!, I can’t help but think each time. Assumedly there are biomedical designs here to keep the insulin clean and secure via the small cartridge hole, but this is an area to seek change. Additionally, many official training videos skip over the actual filling the cartridge with the needle part, but this aspect is so important if we are to avoid air populating the cartridge inadvertently.

Supply Adequacy

The inherently poor design of our American “healthcare system,” by nature, is responsible for this critique. Third party suppliers, diabetes companies, and even healthcare providers’ prescriptions nowadays mainly opt to allot the exact amount of diabetes supplies, with no wiggle room for the inevitable rainy day mishaps. When in doubt, call customer service, they proclaim! Prompting those of us in the trenches to wonder, “Have you ever waited on hold listening to the seventeenth string symphony orchestra practice squad on speakerphone while working fulltime to pay these bills?” Yeah, we didn’t think so.

Companies would save time, and I’d even argue, some money when all comes out in the wash, if they provided even a few spare infusion sets or Dexcom sensors over the course of one year, rather than perpetuating negative experiences when life happens and we need more. Surviving with not one extra centimeter by which to breathe is fundamentally unjust to the customers with health conditions padding these companies’ pockets. Put your customer service energy elsewhere, do the right thing, and eliminate this problem by conceding at least once per order that something may go wrong, but you’re going to own that as a dependable company and provide a back-up option.

Emotional Support

We hear about the transition for Service Members coming home after combat tours and experiencing a tough readjustment to the civilian world. Their guard has been on high alert for months, and now we expect them to just jump back into mowing the lawn, holding down an office job, or socializing at a party, as if the traumas they endured and witnessed never happened?

Although this pump has rocked my world already, there has been an emotional element which I am still similarly processing. On shots, I got accustomed to trying so hard each day and not really witnessing the fruits of that labor very often. The long-term outlook was so grim that I couldn’t even visit there in my mind. Time would eventually just stop, probably.

So I found myself sobbing when a provider recently asked me to go there, to try to imagine a different, better course with the help of this pump. I need more time to heal fully, to reacquaint myself to the light of a calmer world. Such a good thing still hurts because of the tender scar tissue.

Healthcare clinics should at least have this concept on their radar, particularly when training patients who have never pumped before or are returning from sabbatical. These fancy new pumps are jaw-droppingly good at what they do, and that isn’t a bad thing. But the shock and awe mean something, too, and we should strive to optimally support people with diabetes in these next chapters.

Disclosures and disclaimers:

I own Dexcom stock, although this truthfully has no effect on my ultimate aim of improving quality of life for all people with diabetes. No matter what, my feedback will always be candid.

I wrote this blog on my own volition, and although I hope the diabetes industry will listen, these views and ideas are solely my own.

Use diabetes medical devices at your own risk and based on guidance from your medical providers.

This blog is not exhaustive and surely there is more food for thought to come.

Full Circle

When I created this blog (almost 8 years ago!!!), I was looking for social and technical support. Rather, I was desperate for help. My insulin pump and its related infusion sets were fundamentally failing me at every turn, not delivering the life-sustaining hormone of insulin properly and leaving me stranded in the desert without water (i.e., with high ketones). I was terrified to make the leap from the pump to multiple daily injections (MDI), but eventually, it was the only real choice. I needed my quality of life back, and that meant sacrificing the fine-tuning capabilities of an insulin pump, namely, basal insulin rates, for the assurance of watching the insulin actually (and successfully) enter my body via the old-fashioned syringe method. Injections may not be fancy or perfect, but they certainly eliminate the bent cannula worry inherent to pumping.

Alas, flash forward to now, and I’m strongly considering making the opposite switch in diabetes management- something I never thought I would say again. I’ve moved mountains to change my own relationship to anxiety and become able to forge forward, regardless of fear, knowing that I am capable of handling difficult situations. (This is all due to hard-fought access to resources- learning powerful new skills, which I know many others sadly do not have access to. I will never stop fighting for each of us).

I’m able to embrace the uncertainties an insulin pump introduces, again. Cannula problems are sure to occur occasionally, but I’m hopeful this will truly be rare, rather than weekly as I experienced in the past. Notably, I am switching to a totally different brand of pump than what I previously used to gain a fresh start. Yes, I’m purposefully being vague about the pump brands here, for now.

Friends from all walks of life (and A1cs) have raved about the infusion set improvements in current pumps on the market, and how their daily interactions with diabetes feel more doable. Conceding “control” to diabetes technology- a huge fear in the past- is now a welcome change to me. After 31 years of type 1 diabetes, I’m open to giving this tech a shot (See what I did there?) and allowing it to alleviate some of the individual’s constant burden of T1D management. I know it will not be pretty every single day, and that there will be an enormous learning and readjustment curve with this new tech. But I also know that I want more in life. There are too many days where diabetes has me feeling physically crummy, especially after interrupting my sleep all night. This translates to having very little patience for the everyday hurdles in life- diabetes aside- and consequently being stuck on an emotional rollercoaster.

The financing of a new pump, alone, is daunting. I know how to navigate, and thankfully I can afford this although the cost makes me wince. Yet I’m aware that so many elements of this process are far out of reach for many people with diabetes, locally and globally. My privilege is never far from my mind. Now is the right time to take this bet on myself and my own health, and I acknowledge I am blessed to be able to do so. (Don’t even get me started on commuting for all of the healthcare appointments leading up to this while juggling work, etc. It’s all overwhelmingly exhausting before it even begins. But again, I feel fortunate for this acute mess, simultaneously.)

Perhaps the next time I post here I will officially be back in insulin-pumping, robot mode. It’s been a very long journey, but I’m ready – and dare I say, excited- to embrace this change.

PAID ONLINE RESEARCH STUDY

Yes, you heard me correctly.  This is an opportunity to give back to the diabetes community through participating in research,  while also receiving compensation to do so if selected.

I am working with Matchstick LLC (my disclosure) to help spread the word and find participants for their study detailed in Matchstick’s words quoted below:

“[Matchstick’s] goal is to understand what patients and caregivers want and need to create solutions that eliminate barriers to treatment and ensure clients are developing the right devices. To us, the people who use these devices always come first.

Matchstick is running an online research study that can be completed on your computer or through an app. The study goal is to understand the current practices of insulin pump users. If you have diabetes, are insulin dependent, and use either Sure – T or Silhouette with a pump you may qualify for this research study.

This online study is currently open and closes end-of-day Thursday, July 5th.[*] The study is set to be completed over the course of 2 separate days of your choosing during the open period. It should take approximately 45 minutes to complete the activities for each day, for 90 minutes of participation in total.

If you qualify and complete the study you will receive compensation for your time.”

*Date updated.

Also noteworthy:

  • You must be US-based to participate.
  • Encrypted platforms are used, and participant information will be de-identified.
  • The research is being conducted for a device company client of Matchstick LLC.  The research will not be published.

If interested in participating and/or sharing the link, the insulin infusion study screener can be found here.

Or, you can manually copy and paste the link from this address:

https://docs.google.com/forms/d/e/1FAIpQLSez5jzqrl6N-UXb0TuB9wex7JJnwrcLvwvy_pVlx-S6l4Y2ag/viewform

I encourage you to please share this link within your networks, particularly Twitter and insulin pump-related Facebook groups.  Thanks so much for your participation and assistance!

-Ally

2.

My 2-year-return-to-insulin-shots-anniversary came and went a few weeks ago.  The anticlimactic day was all the validation I needed to know that this was the right choice for me.  I no longer count down the days, weeks, or months on shots; they are my new normal until I switch things up again or diabetes is cured.

People probably wonder why I still harp on my defective insulin pump saga, and the truth of the matter is that one can talk as much or as little about trauma as one sees fit.  Medical trauma is particularly cruel; our already-limited “control” further fades away as our cells cry out for insulin.  I continue to harp on this because the wounds are still fresh, however many years after the triage.  Yet the bandages of an engaged healthcare team have eased the pain, and I finally feel better.

Two years ago I feared that I would die of ketoacidosis while sleeping on my couch.  I worried that the graduate school experience I had always dreamed of might slip between my fingertips.  Or worse, that the mental desperation would become too much- that in my attempts to be heard my voice would eventually fade away.

Multiple daily injections (MDI) are not always pretty, but they are a guarantee that insulin is getting into the body.  MDI is literally and figuratively another shot at life.  (More to follow, but not everyone has this guarantee currently; they deserve a chance, too.)

Two years later and I have successfully completed my Master’s degree.

I flew to California twice to participate in Stanford Medicine X.

I didn’t die on my couch.

And I was too busy living to remember that it was my 2-year Shotoversary.

Insulin makes it happen.

graduation-tulips

 

“I never meant to make you cry, but tonight / I’m cleanin’ out my closet.” -Eminem

My apartment could easily get selected for a TLC special entitled Hoarders: The Diabetes Edition. I have mountains of old supplies stocked up just in case the apocalypse ever occurs and I for some reason need a 6-year-old infusion set for an insulin pump that I no longer utilize…  (Note: Proper medical guidance instructs never to use expired supplies.  I am in no way recommending that you do so.)

I have trouble discarding diabetes supplies because they represent my lifeline, even if they are expired.  The thought of running out of supplies freaks me out.  Temporary relief arrives when my mail order pharmacy prescriptions knock at my front door, providing life in predetermined 3-month packages per my insurance provider.  But what if I drop and shatter a vial of insulin accidentally?  I may need my fridge stockpile to get me through until my next order.  Most of us are privileged enough to obtain medication through various means, however much of a longwinded telephone loop-de-loop headache that process may render.  If we lived somewhere else or during some other time, we may not have been able to count these blessings.  My bedroom’s diabetes supply closet is a constant reminder of this privilege.

There are certain items that I can’t bring myself to throw out, but probably should.  I returned to multiple daily injections in December after going through the hardest time of my life- a period in which the only type of infusion set that would work with my body type just so happened to have a product defect in multiple lot numbers.  I spent a majority of my time on the couch chasing ketones and brainstorming with insulin pump company representatives and my medical providers as to how we could correct this problem.  I fought going back on shots tooth and nail, bitter that an infusion set component measuring only a few centimeters long could have such dire effects on my health when it was not functioning properly.

“My quality of life will be ruined on shots!” I exclaimed.

“Can you honestly tell me that you have much quality of life right now?  You’re on the couch with ketones every day fighting for your life,” my wise doctor replied.

And so I finally caved and returned to a Lantus and Humalog regimen.  It was rocky at first, but I am now enjoying my time (mostly) ketone-free.  The blood sugar management still has its ups and downs, an inherent trait of type one diabetes.  There are days when I miss the insulin pump’s fine-tuning aspects wholeheartedly.  I still glance down at my waist to check the time on my pump from time to time, only to discover that what was once such a major part of my life is not there any longer.

When I first transitioned off of the pump, my resentment was palpable. Screw you, pump! I’m moving on! This was a mental game in which I tried to convince myself that this was the right move.  A majority of modern day diabetics use pumps, and I felt crazy that this was not a viable option for me.  Yet time and time again, my infusion set changes proved that this was not working for me personally.

Subsequently, I grieved the pump’s loss under a mask of anger and sarcasm.  During some particularly emotional days, I still think it’s Halloween mask time.

Yet after this struggle, there remains a part of me that cannot bear to throw out the pump supplies.  They have defects, so I cannot donate them to charity for fear of putting someone else through ketone hell.  Instead, they crowd my coat closet by the front door, my bedroom closet from floor to ceiling, the space under my bed, and other spots below stacks of grad school books. I might need these supplies again one day, right? They are a lifeline to another time, another method of managing this jerk of a disease.

Perhaps I will try again.  Not yet.  But perhaps.  The pain is still too raw and we still have too much work to do on the shots before a new decision can be made.

I would be lying if I said that I am not still processing my frustration and disappointment in the entire faulty infusion set situation.  Heck, I’ve certainly blogged about it enough.  But I am more cognizant of the concept of forgiveness and enjoying the present moment now.  I saw firsthand how quickly health can change, what it feels like to watch yourself dwindle away into nothingness.  If it was not for determined doctors and nurses who believed me and did not give up, I may not still be here.  But I am here, so I need to make the most of this life.

Just in case I ever need the insulin pump collecting dust on a shelf, its infusion set and reservoir packages will decorate my room for now.  Whenever I move to a larger residence, I will box them up and put them in a storage closet, packed away neatly with the other memories of my life.  Out of sight, out of mind.

Honestly, though, whether insulin pump enthusiasts or shots supporters, we do not need bigger apartments with huge walk-in closets.

What we really need is a cure.

pump boxes

I Can Because Someone Believed That I Could.

I was running late one day during junior year of high school and our Spanish teacher, Ms. K., questioned me in front of the class.

“Why were you late again, Ally?”

“Umm… we got out of Math late today.”

“Fair enough.  And who is your Math teacher?”

“Mrs. H.”

“Okay, I’ll chat with Mrs. H. later on today.”

Umm, what?!!  Well, there goes my great excuse!  Mrs. H. knows that we were not late today! 

As my classmates filed out into the hall at the conclusion of class, Ms. K. held me back, deciding to give me one more opportunity to come clean.

“Ally, why were you late?  For real.”

“I didn’t want to say it in front of the class, but I was having issues with my blood sugar,” I replied, staring at the floor.

“I’m so sorry.  I wasn’t thinking of that earlier.  Anytime you have to leave the classroom and do whatever you need to do- please just take care of yourself, okay?” Ms. K. responded, suddenly concerned.

“Okay.  I’m sorry again.”

When I tell that story to my coworkers, I usually tell it as a joke.  In my head I know full well that it is a rationalization: Hardy har har, see, diabetes comes in handy sometimes!

The truth of the matter is, being so far removed from that incident in high school, I’m not entirely sure what actually transpired when I look back now. My best guess is that diabetes became a convenient excuse when I saw that I was going to be disciplined; there was not a major diabetes emergency going on that made me late for class. In that case, I owe Ms. K. a coffee/beer with my apology the next time I see her.

At the same time, did diabetes sometimes make me late because I had to make an extra stop at my locker to check my blood sugar, or go to the bathroom when my blood sugar was too high, or scarf down a granola bar when I was low? Absolutely. The mature thing would have been to discuss this with my teachers beforehand so that they knew that I was trying my best. Alas, I was a dorky high school kid just trying to fit in.

You are in the driver’s seat of your life; diabetes is just the pesky younger sibling trying to hang out with the cool kids. Do not let diabetes be the excuse that gets you out of detention. If you mess up, take responsibility. But also recognize that diabetes does like to throw some wrenches into the mix of life, and you should be upfront with those who may need to understand. Tell your teacher or your boss if you are not feeling 110% one day and need to take a breather outside. I wish that I had fostered that discussion in hindsight.

In grad school I have been blessed with professors who have taken a keen interest in my academic development. I am open with them about diabetes because I am more comfortable in my own skin now compared to high school. On the particularly rough days with my insulin pump problems in the fall, my instructors showed me selfless compassion. They respected that no matter how sick I was, I was going to get my work done on time and do it well. (Something about stubborn Italian pride, right?) Yet on many occasions, they held me back after class- not to scold me for being late, but to make sure that I was okay. Every ounce of hard work that I put into my degree is a reflection of the confidence that my instructors hold in their students’ abilities.

I can.  You can.  We all can.

I can because academic instructors believed that I could- diabetes and all.  In the process, I started to believe, too.

gpa

Sticks and Stones and Words

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

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

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

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

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

*****

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

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

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

 

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

Because everyone loves a blood sugar value of 400…

 

“It IS your fault!”

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

 

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

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

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

 

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

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

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

 

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

Who said it’s degenerative? Not me.

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

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

 

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

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

What? I didn’t swear, did I?

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

 

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

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

 

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

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

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

*****

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

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

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

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

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

 

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.

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