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

 

Tequila Shots?!

Okay, Lantus shots.  Almost as much fun, right?

Many thanks to Jeremy of 70-130.com for his insightful piece on various insulin pump and insulin injections perspectives.  I found it therapeutic to reflect on my journey from shots to pumps and back to shots again.  You can read Jeremy’s blog profiling some #doc viewpoints here.

 

 

 

 

Coloring Book

Bruising happens.

Black-and-blues are inevitable with multiple daily injections (MDI) considering the sheer number of times we must poke ourselves each year.  None of this is natural for the body to endure, but it is necessary.

As I flinched while a nurse removed bandages from my back at a recent medical appointment, she paused and asked if she was hurting me.  “It’s okay,” I mumbled, more concerned that my tough exterior was noticeably crumbling down than I was about any physical pain.  After the initial diabetes diagnosis shock at approximately age 3, I bottled up my emotions in order to survive.  We might need a stronger corkscrew to open the floodgates at this point…

The visible reminders of insulin injection bruises on my abdomen are an aspect of MDI that I grapple with emotionally.  I am forced to admit that diabetes is right there looking back at me in the mirror, and that sometimes it does hurt me whether I want to concede that point or not.

Admittedly, this is a morbidly weird artistic endeavor.  But I decided to have a little fun by altering a photo of Mega Bruiseasaurus, which has camped out on my stomach just in time for bikini season.  The bruise’s purple hues became a sea turtle’s shell, and my jeans morphed into the water in the background.  Inquisitive face, green limbs, and a pointy tail sprouted up through the hard shell, determined to show off the good stuff that diabetes sometimes clouds from our views.  Bruiseasaurus is no longer the greatest creature in the jungle.  Sally the Sea Turtle has marked her territory, too.  She is the life of the party, after all.

sea turtle bruise pic

 

Healthcare loop-de-loop

This blog post serves as a simplified example of the complex headache that is the “healthcare loop-de-loop.”  Ironically, I pledged to write about this topic last year as an offshoot of a blog about diabetes needles.  Today, I again blog about diabetes needles, and how many hoops we must jump through to obtain minimal elements of surviving diabetes.

Many have it more difficult than me, their basic health needs unmet.  Frankly, I have somewhat decent healthcare coverage through my employer, and I have also studied healthcare at the graduate level and understand its nuances.  My point being: Despite all of this, healthcare remains an untamed beast, from the lower administrative levels all the way up.  If I have it “good” and experience this, what about all of those slipping through the cracks merely due to circumstance?

The healthcare loop-de-loop reemerged last week when I went to refill an insulin pen tip prescription, which was promptly denied by my insurer.  (I use two different types of insulin pen tips- the 4 mm BD tips for Lantus and the 8 mm tips for Humalog.  My doctor and I found that the smaller Humalog volume was not being absorbed by my body with the 4 mm tips, so we begrudgingly opted for the larger 8 mm’s.  Your diabetes may vary.)

Allow me to further explain, via Twitter rant:

pen tips twitter1

pen tips twitter2

^ Because of the confusion about the needle length sizes and what had previously been refilled/what needed to be refilled currently, insurance flagged the new prescription as something to deny.  In reality, it was simply a new prescription for a different needle length, granted by my doctor to alleviate some pain from multiple daily injections.

pen tips twitter3

^ I cannot make lengthy phone calls at my job because my job duties would be compromised.  And I need to work for reasons of insurance and paying healthcare bills.  Many of us are in the same boat here.

^^ “This probably should’ve been a blog.”  …Yup, now it is.

pen tips twitter4

^ As maddening as this phone call marathon was, Spare a Rose puts it all in perspective.  Although our healthcare situation is far from ideal in the United States, we are blessed to have what coverage we do have.

 

At first I felt dramatic for live-tweeting my everyday diabetes grievances.  Later, I was pleasantly surprised by how many people validated my feelings, unfortunately having experienced similar irritations of their own.

The resounding theme was: This isn’t right.  Whatsoever.  Amen.

Healthcare is a complicated, multidimensional goliath.  I just so happen to love learning about it.  But when healthcare bites back at me, it is a reminder that I am still a little coffee cup in a big sea of healthcare coffee beans.  Socioeconomic status, insurance coverage, and corporate power are just a few of those beans playing in the healthcare game.  The stakes are high: Quality of health, and, therefore, quality of life, are on the table.

I recognize that my tiny roar may not jostle healthcare mountains.  Currently, there is too much bureaucracy and red tape to allow many of my suggestions to move forward.  But in order to do my part rather than sit back and complain behind the shield of my laptop screen, I must recommend some changes.  If they are heard outside of the confines of my own mind, then it is worth expressing them.

I will start small, with the insulin pen tip example:

“Hi, my name is Ally.  I have been type one diabetic for 25 years.  One day I am confident that there will be a diabetes cure.  We always keep that faith alive.

However, that cure is realistically still far away.  In the meantime, I will require insulin every day in order to survive.  This insulin should be affordable and accessible.  Anything less is morally reprehensible.  The same logic goes for any other life-sustaining medication for any other serious illness.  We can and we must do better.

If a type 1 diabetic is not using an insulin pump, he or she requires insulin syringes or insulin pens (glorified insulin syringes for ease of user experience).  Insulin will be delivered into the body through a needle at the end of the syringe or insulin pen.

Because I require insulin to live, and because I use injections rather than an insulin pump to manage my blood sugar, my skin must be pierced by needles every day until I am cured.  Insurance could make this more bearable by not causing obviously-necessary prescription refills to be a royal pain in the @$$.

The Endo clinic could edit their coding system, so that pen tips can be ordered by millimeters, rather than gauge.  No one likes to say, “Can I refill this 0.99784567325 X 54321 infinity pen tip needle, please?”  Just say 4 mm in your system.  Thumbs up emoji.

Kindhearted pharmacist who empathized with my worries over the insurance-endocrinology clinic ping pong battle deserves a coffee on my dime.  So does insurance representative who patiently worked through the mix-up in order to get my supplies.

Understandably, BD does not want to market their insulin pen tips as “8 mm LARGE, will leave giant bruises; 5 mm semi-large, still may bruise; or 4 mm, smaller but you’re still jabbing yourself with a needle!!”.  However, calling the pen tips “Short (8 mm), Mini (5 mm), and Nano (4 mm)” all indicate “small” in the minds of patients, providers, insurers, and pharmacists.  You can see the root of the miscommunication.

Below is a color-coded chart, created by yours truly, for future reference.  Feel free to disseminate to all parties involved here.  It will lessen monthly Advil bills.

BLUE = 8 mm   “Long needle.  Only intended for use by badasses.”  Lamely called “Short” in real life.


PURPLE = 5 mm  “Medium-length needle.  Sassy.”  Lamely called “Mini” in real life.

GREEN = 4 mm  “Small.  Dainty needle for dainty pain.”  Lamely called “Nano” in real life.

ALLY = happy that you listened

Happy Ally

Thanks for hearing me out.  Until the next prescription refill…

XOXO,

Ally”

 

 

 

 

 

 

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.

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.

003

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.

005

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.