insulin

Spare.

Spare.

Dictionary.com defines the verb as “to give or lend, as from a supply, especially without inconvenience or loss.”

At that rate, why wouldn’t we spare roses this February, and perhaps all year long?

The premise is simple: click here, donate $5- the cost of a rose you may normally give to a loved one on Valentine’s Day (or, set up additional monthly donations if you can!), and save a child by providing life-sustaining insulin through your donation.

If you are reading this blog post from a cell phone or a computer screen, chances are you have $5.00 to spare.  If you do not, that is okay, too; instead, please help to spread the word about #sparearose.

What is $5.00 worth?

-one medium coffee and one donut from your local coffee shop

-half of a movie ticket  (What use is that?!)

-crappy red wine and a headache you don’t need, anyway

-an overpriced bottle of water at a sporting event

 

*****-And oh, yeah, A LIFE!!!!!!!!

 

Close your eyes and think of a time when you did not receive a viable amount of insulin for a few hours.  We have all been there: a kinked insulin pump cannula, diabetic ketoacidosis (DKA) during diagnosis or severe illness, or whatever the case may have been.  We have felt the heartburn and nausea of high ketones, the unquenchable thirst, and the longing for comfort that takes too long to get there.

For most of us, those days represent acute instances of distress.  Scary, yes.  Life-threatening, sometimes.  But if we are reading this blog post today, we somehow escaped diabetes’ wrath and are feeling better thanks to the insulin taking up all of the shelf space in our refrigerators.

Without insulin, kids in developing countries know that type of suffering intimately.  Those of us who are more fortunate cannot lay our heads on our pillows at night and be okay with that.  We understand diabetic ketoacidosis.  We have a moral obligation to curtail DKA as best we can before it senselessly takes any more lives.

If my words come off too harsh here- well, it is a risk I am willing to take.  If our moral obligation leaves us momentarily uncomfortable in our realization of its truth, so be it.  These kids are more than uncomfortable as they await insulin that they should have to begin with.  We owe it to them to do the right thing.

If you can, please spare a rose this February.  Through the simple act of sparing, we can dry so many tears.

Thank you

spare a rose 2015

 

 

 

Milestones.

This week will be my final class before graduating with my Master’s degree at the end of December.  The saying about a weight being lifted is true.  As I handed in my final paper last week and my classmates hoorayed, happy to see one of their own crossing the finish line, I instantly felt relief.

Unless you live under a #doc Twitter rock, you know that I was on an emotional rollercoaster last week.  I second-guessed whether I would get my final paper done in time.  Mostly, though, that doubt was due to the anxiety of moving forward in life, of leaving behind the structure, love, and discipline that grad school has blessed me with over the past two years.

As much as I have complained about homework on the weekends, truth be told, I will miss the academic environment very much.  There is a definable purpose there, a working towards something greater than oneself, a joy of learning amongst peers and professors who are just as passionate about healthcare and making the world a better place.

Grad school becomes a part of one’s identity, and I am scared out of my mind to not cling to that role soon.  My go-to introduction spiel at cocktail parties has been, “I’m Ally.  I work fulltime at _____ and I go to grad school at night at _____ and have I mentioned how freakin’ busy I am all the darn time?!!”  As fulfilling as these different components of my life are, it is now time to put what I have learned to good use and to explore new opportunities- after taking a much-needed vacation.

My identity as a graduate student may be shifting, but I do not necessarily have to be lost.  Perhaps I have already been found, and that is what is so scary- those moments of truth where you reconcile who you are, with who you have been, with who you want to be.

Complicating such notions is the fact that today marks my one year shot-o-versary, or the anniversary of returning to a multiple daily injections regimen after a decade of insulin pumping.  I have beaten a dead horse over this, but in case you are new to Very Light, No Sugar: Insulin pumps are great.  Sadly, I experienced product defects with mine and watched my health slowly slip away as a result.  The pros of using injections for me, personally, outweighed the cons, so here I am.  Do what works for you.

My current apathy about the shots milestone surprises me.  In many ways I expected to be just as proud about the shots as I am about my impending Master’s.  But I’m just… not.  Shots are my new normal.  Some day that may change (diabetes cure, please!), but for now, this is what I am working with.

And to be honest, I think that apathy is a good thing.  It means that I have made peace with some of the previous bitterness, that I have chosen to chalk up the pump company’s ignoring of my email pleas as being due to an overloaded pump rep.’s inbox, even though I know in my heart that was never the case.

I now experience the freedom of insulin getting into my body every time I inject, and those #JerkFaces also known as ketones do not hang around much anymore.  I have proven to myself that I am stronger than I ever believed, and that it is good that we have many options in our diabetes management tool boxes.

Every day, I have access to life-sustaining medication, something I will never take for granted again.  Others are not as fortunate, and I am attuned to their suffering because my faulty insulin pump taught me what it feels like to lack insulin.  It is a brutal, desperate torment.  Only insulin can fix it.  And while I feel blessed to have escaped my insulin-delivery mishaps, I will always remember and pledge to help those who do not have access to insulin.

I recall emailing my doctors a week into our shots trial and implying, “Hey, I tried.  Time to call it quits and return to the pump?”  And I remember my dismay at their gentle urging to stick it out one more week, one more month.

Today- one more year- I am happy that I listened.  The difficult days are still here.  But the good days are back, too.  Any day not spent battling ketones on the couch is a day that I must be thankful for, and I am.  I just need to work on expressing that more often.

So here it goes:

I am thankful to have enjoyed the opportunity of receiving a graduate-level education.  During the days of my insulin pump saga, when the ketones were syrupy-thick in my blood and the couch was my home, grad school was the bright light that I could focus on.  I read and read and read and repeatedly told myself that one day I would feel better and have my degree.

Today, I am happy to be here to see that internal mantra come to fruition.  Thank you to everyone who has rooted for me along the way.  My gratitude is best expressed by leaving you with the prayer said on my long drive to Boston before difficult medical appointments:

“In every circumstance and in all things

I have learned the secret of being well fed

and of going hungry,

of living in abundance and of being in need.

I can do all things in Him who strengthens me.

Still, it was kind of you to share in my distress.”

-Phillipians 4:12-14

 

Favorites and Forgiving Diabetes

My favorite post is one that mostly flew under the radar:  24. P.S. I forgive you.

This post describes how I chose to forgive diabetes for the bad and to reflect on the good I have received during my 24th “diaversary.”  While it was not my most popular post of all time, it openly represents my emotions on a day that is always bittersweet.

Stephen’s short yet powerful comment on this blog post meant a lot to me, as did another I received via Facebook from the mother of a diabetic child who thanked me for writing the things that her son could not yet articulate at a young age.  Those little moments make blogging so worth it.  We can use our words to connect with and encourage others who face similar obstacles each day.  #DOC in a nutshell!

Diabetes Campfire Stories

“Back in my day, we used pork-sourced insulin when I was diagnosed!” I may one day proclaim to my future grandchildren.

At this point in time, there will be a cure for diabetes and they will laugh off my fireside tales of the struggles of the past, oblivious to the hardships that generations before them have faced. Honestly, that’s how it should be if we aim to improve the world during our brief time here.

So many changes have occurred in diabetes treatments since my diagnosis just before my third birthday in the early 1990s. And I have not endured half of what rockstars like Supreme Court Justice Sonia Sotomayor have lived through regarding diabetes management processes! Change does not have to be a comparison battle, rather it should grant a clear perspective of just how blessed we are today despite a conniving autoimmune condition.

Almost one year ago I began using the Dexcom CGM (continuous glucose monitor) in the hopes of alleviating anxiety surrounding my diabetes. From the first day, I was absolutely floored by this product. Sure, it is technology and it is not the same as a properly-functioning pancreas. I have to carefully prep my insertion sites to avoid blistering rashes. And I am still waiting on my winning lottery ticket so that I can make my first purchase: a fulltime nurse who will check my blood sugar at night and will perform Dexcom insertions on me so that I do not have to do the one-handed pretzel move to get a sensor in my lower back.

Despite these minor issues, Dexcom is, in my humble opinion, the best quality product on the diabetes market. Due to many diabetes hurdles this year, I cannot boast of an A1C that drastically improved while on Dexcom, but I can say that my mental anguish regarding diabetes has lessened substantially thanks to Dexcom’s accurate readings. That, my friends, is half the battle. I still fear overnight lows, but I am much more confident that I will wake up thanks to Dexcom rattling and alarming from an empty coffee mug on my nightstand. I owe my life to Dexcom, as do many others. In the past, we all had to make do with what we had, and plenty of us survived prior to CGMs. But Dexcom is an added safeguard that makes life less complicated. It is the sort of change that is easy to embrace.

The Dexcom Facebook group was my true introduction to the diabetic online community. For the most part, this group is wonderfully supportive and non-judgmental- a place where we can all feel at home. We are able to share our scary moments and our triumphs with an audience who “gets it.” As I ventured off into the blogosphere, I fostered genuine friendships with others in the community, but I will always have Dexcom to thank for being the springboard to finding some of my largest supporters in fighting diabetes.

In grade school my mother used to drive to the auditorium to check my blood sugar every day at lunch. These were the infamous NPH and R days, and lunchtime was primetime for lows. My mother recalls seeing me file into the cafeteria with the rest of my class looking white as a ghost; she does not know how I had enough energy to even walk on some occasions when my blood sugar hovered in the 30s and 40s. There was no Dexcom back then to alert my teacher to the rapid decline.

On the playground in fourth grade, Michelle spoke the unfiltered truth. “I’m sorry that I didn’t invite you to my sleepover for my birthday. You could come if you weren’t diabetic, but my Mom doesn’t know how to take care of your diabetes so you can’t sleep over.”

In fairness to Michelle’s Mom, after twenty-four years of diabetes, I’m still trying to crack its code. I give her credit for recognizing that this disease is much more serious than an herbal cure remedy. Perhaps she could have coached her child on her delivery of the bad news a little more, but we can’t always have it all.

When I see the parents of children using Dexcom CGM post in the Facebook group about little Joey or Susie attending the first big sleepover of the school year, it never fails to bring tears to my eyes. Those kids put up with enough pokes and prods, fingersticks and pump site rotations, Dexcom insertions and limited cake consumption that they warrant having some fun with their friends every once in a while. They deserve to stay up all night eating popcorn and watching movies, forgetting that diabetes exists while Mom and Dad rest comfortably at home watching the steady line of the Nightscout Project’s Pebble watch display or the Dexcom Share apps.

Enjoy that good type of change. Remember the freedom that this product affords us, even on the days where the calibrations seem a bit off. After all, we are dealing with type one diabetes; diabetes’ “calibrations” to everyday life are rarely on the mark. Innovative products like Dexcom CGM allow us to live life in the moment, to have an additional security blanket onboard, to do things that diabetics in the past may not have been able to do.

To the parents of the kids going to the sleepovers where Dexcom gets the invite, too: Your kids will thank you for allowing them to just be kids one day when they are old enough to realize the sacrifices that you made for them. One day we will all sit with our respective families around the campfire and talk about that first sleepover as a diabetic, the first time fast-acting insulin was introduced, and so on, until we can finally talk about the first big meal after the cure.

Keep up the good work.

Thumbs Up for the New Endo

Transitioning from one endocrinologist to another can be emotional and stressful.  We’ve been over this.

As many people expressed similar anxieties about perhaps having to switch doctors at some point in time when I first blogged about this topic, I wanted to provide a quick update on that front:

Today I met my new endocrinologist, as my former endo relocated far away.  New Endo was kind and understanding.  There were no lectures, which automatically earns her many (sugar-free) brownie points in my book.  We set realistic goals which will help improve quality of life a bit.  (Think along the lines of decreasing basal rates to avoid treating multiple lows in the early morning hours with old Christmas candy stash goodies.  And of course, I renewed my vows to put on my brave face and try to take more insulin each day.)

A lot of this stuff seems so obvious now that I’m writing it down.  But it helps to just speak it out loud to a knowledgeable endo’s ears and to have her input in making adjustments which can have big impacts on my health.

We’re going to get where we want to be in terms of my diabetes management eventually.  It has been a year of SO many big changes, but I am learning that change can be good, especially if you have the right people in your corner helping you to keep on, keepin’ on.

Insulin Angels in Hotel Mini Fridges

Please note: I was asked as a member of the diabetic online community to provide feedback on Insulin Angel and I am happy to do so.  I did not receive compensation in any form for writing this blog post.

Let’s be honest, no one designed hotel mini fridges with the intention of storing insulin at safe temperatures.  I was always under the impression that the original hotel mini fridge engineer wanted just enough tilt when opening the door to rustle a few alcoholic beverages and drive up your bill.

When most people open a hotel mini fridge, their objective is to quench their thirst.  My main concern, however, is just how cold the beverages in the fridge may be- because if the beverages are borderline frozen, well, so is my insulin.  You’ve all heard enough of my griping about ketones to last you a lifetime, so I’ll spare you the story this time around.

Bottom line: We all know that we need insulin to survive.  Insulin that is too hot or too cold compromises the efficacy of the medication, and, therefore, endangers our health.  Forgetting that insulin in the fridge when going out for the day is not highly recommended, either.

Mike Hoskins of Diabetes Mine provided a detailed take on Insulin Angel, a product which will alert users to unsafe insulin temperatures and inadvertent moments of forgetting to carry insulin by utilizing that handy dandy thing called modern day technology.

While I have not personally used the Insulin Angel product yet, I feel comfortable stating why I think this concept has potential:

1. Insulin Angel’s marketing strategy catches my attention because they are reaching out directly to those who their product will help: the diabetic community.  Through crowdfunding, diabetics will drive this idea.  Insulin Angel understands their consumers because they understand life with diabetes.

2. Have I mentioned how I just want a nice cold iced tea from the hotel mini fridge without thinking twice about insulin temperature yet?!

3. Fun activities like going to the beach in the summer should stay carefree.  Let Insulin Angel do the worrying about insulin temperatures for you; you can correct any potential insulin temperature problem early on, rather than suffer the consequences later.

4. This product offers possibilities in a world that is not always diabetes-friendly. 

As an example, diabetes is often considered a medically-disabling condition of military service.  Although we have heard of people with diabetes who are able to remain in service in some capacity, one big reason why the military and diabetes don’t jive well is because of the need for insulin refrigeration; this proves technically-burdensome on deployments.

While I in no way, shape, or form am implying that Insulin Angel’s product will be helpful to allow diabetics to join or stay in the military (nor do I want to start a debate here), the main takeaway in raising the example is this: Previous/current limits on diabetics- whether self-imposed or societally-imposed- may one day be lessened due to this product.

Insulin Angel has the potential to give us another useful tool in our diabetes toolkits.  It eliminates one of the many “I wonder if I’m high because of ______?” factors in that we can cross “unreasonable insulin storage temperatures/forgetting my insulin at home” off that list.

Think of it what you will.  In the meantime, I’m ordering my #SaveHotelMiniFridges bumper sticker.

Weird.

Today was weird.

It started off with getting called to the front of a 200-person meeting to participate in Dance Dance Revolution.  My coworker won the dance-off, but now the whole office knows who the real #LeftShark from Katy Perry’s SuperBowl halftime show was.  (That would be yours truly).

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Later I discovered a 300+ blood glucose reading at lunch and a blood test confirmed some ketones.  Yikes, considering we had another meeting on the way.  No more Dance Dance Revolution for this girl, though!  I felt like this lizard that I encountered on a recent trip to Florida, as in Leave me the heck alone, intruders! [in this case, ketones].

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I bolused quite a bit and played the “wait it out and let the insulin do its job” game, otherwise known as “patience is a virtue, but it’s really freakin’ difficult when you don’t feel well!”

Trusting in insulin after all of my insulin pump drama in the past has been a challenge for me.  I’m still getting accustomed to the idea that when I bolus, insulin generally does something.  Before, it was not always the case.  Today, it did its thing, although I’m still running too high.

Tomorrow we shall try again.  Bring it on.

Beginning of the End(o)

This week my endocrinologist is transitioning to a different medical office which is, realistically, too far away for me to travel to for future appointments.  This endo not only is a kind, non-judgmental doctor, but in my head she is dubbed as the “Basal Insulin Wizard.”  She has a knack for knowing which little adjustments need to be made to prevent or to fix huge problems.  She also deals with an inundation of emails in her inbox, mostly from me.  I pride myself on being an engaged patient, but I also understand that doctors do not have much time in the day to get everything done for every patient.

A few months ago I asked her, “Do your other patients email you like this?”

“Not really…” she replied.

And then we both had to take a moment to compose ourselves through a mutual fit of giggling.  Without saying much, we both totally got it.

I am intense in my emails, but I am also fighting for my health.  I appreciate a doctor who recognizes that and works with me.  Current Endo has done that, and I will miss the comfortable relationship we have built over the past few years.  Her new patients are blessed to have her on their team.

So, what am I going to do now?

I’ll tell you what I should have done: started searching for a new endo a few months ago when I was first told of Current Endo’s impending departure.  She gave me a few recommendations for a new endo at that time, and my nurse proclaimed, “If I were a type one diabetic, I would definitely get treated by _____!”  Naturally, I should have then booked an appointment with Endo _____.

But I didn’t.  Perhaps it was a bit of diabetes burn out, and I must now own that.  Perhaps it was a bit of denial that Current Endo was leaving.  Perhaps it was the fact that from a practical sense, I am tired of commuting many hours roundtrip for my diabetes care, albeit I feel strongly about the top-notch care I receive in Boston.

All I can do now is make a plan.  I will pick up the phone and schedule a new endo appointment this week.  Diabetes doesn’t take a vacation, and it certainly doesn’t care that my endo is switching offices.  I will rely heavily on my nurse during this transition period while I wait to meet my new endo.  This situation makes me so thankful for a nurse who is willing to put in the extra effort to help me to stay well.  She will rise to the occasion, and now I must do so, too.

New Endo will not replace the relationship- and possibly not the same skills- as Current Endo represents for me.  And that is okay.  People are inherently different in their attributes, and I am optimistic that whatever my relationship may become with the New Endo, it will be its own unique entity with positive results.  I must be thankful for the calm guidance of Current Endo, and I will remember her for that.

Warming up to New Endo may take some time.  I am a patient highly involved in my own care, and I’ve also made many major changes in my courses of treatment this year (Dexcom CGM, returning to multiple daily injections versus insulin pumping, and taking much larger insulin doses).  This is a lot of information for all of us to process, and sometimes the road may not be free of bumps.

For now, we’re just going to ride with it.

Needles: #ItMakesSenseIfYouHaveDiabetes

In the early 1990s when I was in elementary school, I took part in a study through the Joslin Diabetes Center which examined whether or not patients “liked” new, shorter needles on their insulin syringes.  We had to fill out a chart with smiley faces for “minimal pain,” sad faces for “painfulness,” etc.  It’s probably why I remember this: the artistic part was fun.

A creature of habit, I emphatically voiced my displeasure with the new, short needles.  Big sad face for you on the chart, “new thing meant to help me!”

My parents, perplexed that I would elect to use the “behemoth needle model,” decided that it would be in my best interest if they switched out the needles unbeknownst to me.  I believed that I was still using a large needle, when in reality it was a short needle.  Not one to complain much about insulin injections to begin with, I did not notice the difference or care to vocalize it if it was there.

(Sorry to Joslin if we messed up your study!  I believe the switching out of needles was probably done after our part of the study concluded).  Also, #sorryimnotsorry to my parents for still being a little miffed about this.  I’m all about patient autonomy, albeit my parents were simply trying to lessen my diabetes burden at that time.

So, why am I reflecting on this during Snowmaggedon 2015?  Perhaps I have too much free time on my hands today.  But I’m also just plain kind of sore from injections right now.  The skin on my stomach bounces the needle off in protest after ten years of insulin pump sites.  Can I really blame it?  My upper left butt cheek looks like a game of pin-the-tail-on-the-donkey gone wrong, although the right side knows how to handle the infamous “Lantus Burn” like a champion.

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Needles are the easiest part of diabetes in many regards, but somewhere along the line I have noticed in social media groups that there is this pressing need for some to announce that diabetes never hurts.  Well, for some of us, it does.  And trust me, as a kid I was the first to judge the “insulin shot cry babies.”  Mine was a face of stoicism from a young age.  But as an adult making an effort to accept my emotions more freely, I can admit that sometimes the needle hits a sore spot and a few swear words are mumbled.

What can one do about this- this reality that needles keep you alive whether or not they cause pain?  Running with our theme of doing what works for you, exercise your freedom here.  If you like the bigger needles, use them, and then draw a big smiley face on your chart for good measure!  We have options here, and plenty of them at that rate.

#ItMakesSenseIfYouHaveDiabetes: Perhaps short needles work on some sites using a particular type of insulin, but larger needles work better in different areas with different insulins?  BD Nanos (4 mm) are the tool-of-choice for Lantus injections in my backside, while the BD Short (8 mm) needles work better for Humalog injections in less-padded areas.  Humalog does not pool at the injection site as often with the larger (confusingly named “Short”) needles.  Yet the Shorts with Humalog have the pin-the-tail-on-the-donkey effect on my left side- go figure.  Maybe I will employ Nanos for those sites?  Again, #ItMakesSenseIfYouHaveDiabetes.

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This is my personal configuration that works well for me, so I’m going to stick with it.  When I need to make alterations, I will do so under my own good intentions.  And, in some weird sort of psychological spin on things, I acknowledge that I am a fan of the same method as I was two decades ago: using a combination of long and short needles to get the job done while maintaining my sense of independence in living with type one diabetes.  Ultimately, it is about how you feel as the individual; however wacky your methods may seem, do what works for you.

***Update: Erin Gilmer over at healthasahumanright.wordpress.com brought up a good point with me via Twitter.  Not everyone has these numerous treatment options due to various obstacles to proper health care: limited insurance coverage, out-of-pocket expenses, socioeconomic status, and so on.  While I am a firm believer in fighting hard for the health care that you want, I must concede that there are certainly limitations to this idea.

I meant to disclose previously that I paid for the 8 mm needles out of pocket.  My insurance had already covered a regular syringe prescription when I first switched back to shots.  Then my doctor and I chose to go with pens out of convenience, so obtaining the Nano pen tips took a lot of jumping through hoops until insurance was kind enough to override my refill a few weeks early.  When it came time to try the Short 8 mm needles after the Nanos weren’t working on my stomach, I purchased a box on my own out of fear of insurance tightening their pocketbook with me.  If I remember correctly, the box of 100 pen tips cost about $45 out of pocket.

I will blog about the health care coverage loop-de-loop at a later time, but wanted to acknowledge Erin’s point here, as I believe this is an important one, too.  Patients can fight for their health, but the health care system needs to give back some of that same effort in order to help us to get well.