Hey, that’s mine. And I’m taking it back!

I must confess that I haven’t been in a “very light” mood this week.  It’s a combination of PMS, a pesky chest cold, and the manner in which they catapult my blood glucose to the stratosphere, stuck no matter how many tears I dry or units I bolus.  It’s diabetes at its most vindictive: Ha! Your bazooka-bolus will drop you a whopping TEN mg/dL!  This in turn causes me to feel badly about my irrational BG “failures,” as well as my subsequent grumpiness.  I tried to take a Twitter hiatus as the Catholic grammar school mantra, “If you don’t have anything nice to say, don’t say it,” rang in my ears.  I woke up the next day to a few private messages from well-wishers (thank you- you know who you are), and I realized that instead of hibernating on Twitter perhaps I should open myself up to that support.  After all, it’s the signature of the online communities that I have grown to love.

#BellLetsTalk tweets and blog posts inspired me during my figuratively “extra dark coffee, loaded with sugar” musings.  It is humbling to see that so many people worldwide shared their deeply personal stories during this Canadian mental health effort, and by doing so they inspired others to seek support and to perhaps share their own stories, too.  #BellLetsTalk celebrates these strong, courageous souls.  I could feel the societal stigma lifting as I perused their words, felt their pain as a fellow human being, and admired their strength.

When Sophie- the talented blogger of Writing Possibility whose honesty and eloquence in writing make her one of my favorites in the #doc- invited me to participate in the Take Back What’s Yours campaign, I knew that this was an opportunity to empower myself during a week where diabetes was making me feel especially vulnerable.  Take Back What’s Yours is an effort launched by Chloe’s Concept encouraging readers to take back something good that may have been lost along the way during life’s tribulations, such as a hobby that brought joy or a sense of hope.  If you feel so inclined, please join us in taking back what’s yours.  Let’s celebrate ourselves in the spirit of #BellLetsTalk and #TakeBackWhatsYours.

Here’s what’s mine, and I’m taking it back:

Note: You’ll get the gist of it as you read each paragraph, but in certain circumstances I am “taking back” in the sense of regaining my footing with something I have struggled with.  I am taking it back in that I am conceding that it happened, but I will not allow it to occur anymore if possible.  In other circumstances, I am “taking back” positive things that I have lost sight of recently.  While the hashtag’s meaning may have been slightly altered for purposes of this blog post, I think the theme of #TakeBackWhatsYours is still alive and well here.  This is the best way that I can express the hashtag in terms of my individual trials in life.

1.)  From a point-forward basis, I am taking back the nights that I went to bed hungry as an employed, educated American woman.  I have been blessed enough by my current circumstances in life to be able to put food on the table; now it’s time to enjoy it again.  I do not fit the stereotype of a starving child in a third world country far away from here, but I have been far too familiar with hunger due to the aftermath of faulty insulin pump sites and the fears running rampant in my own mind.  Food is not the enemy.  Insulin is not the bad guy.  And I am fully capable of doing this, no matter how scary it seems.  I will not go to bed hungry any longer.  This means I must make some concessions: bolus larger amounts of insulin before bed; eat when my blood sugar is higher than I would prefer for it to be going into a meal; learn that it is okay to see some slightly-skewed blood sugars during this time of growing; share my story in case someone out there is hungry for the same reasons.

2.)  I am taking back the “set in stone,” predefined amounts of insulin that have so dictated my dosing for many years.  Each day with diabetes is different, and insulin needs to reflect this.  I will be more flexible.  I will email my doctor about the mini-successes.  I will celebrate them.  And I will pledge to keep trying.  If the dose misfires, well, I have enough experience to know how to handle it by now.

3.)  I am taking back feeling guilty about my feelings.  From day one of creating this blog, I promised to be authentic, and I believe that I have been.  Sometimes the #nofilter thing makes me feel like I’m wearing my emotions on my sleeve too much, but I wouldn’t be me if my sleeves weren’t a little dirty.  I am taking back being too hard on myself for a tweet that I perceived as overly-cranky or for fear of annoying others.  We all annoy someone at some point at some time.  If we are in the wrong, we can apologize and move forward.  But if we walk the line of keeping too much to ourselves, we aren’t allowing others in as much as we should be.

4.)  I am taking back my former joys and living in the moment.  I will recognize that I am more than diabetes and health care advocacy.  While these are enormous passions of mine, I also need to take some time for myself to try new things and to chill out with my own thoughts.  Always being on the go and jumping head first into the next project are qualities that have helped me to succeed, but reading a book for pleasure or grabbing a beer after work with friends on a Wednesday night are also ways in which I can obtain happiness.  There doesn’t always have to be a goal: an A1C target, a certain GPA, a defined objective measurement of success.  Instead, there can be some down time to relax, to connect with the people around you, and to be present in life.  It is fine to be hardwired to “busy and productive mode,” but setting aside a few hours a week for other enjoyments is crucial to long-term health and happiness.

5.)  I am taking back my ability to allow others in to help.  As a diabetes-induced defense mechanism, I have handled things on my own for a while now.  When friends try to help, I’m initially willing to talk their ears off about diabetes, but by the end of it, I’m usually saying things I don’t mean to say out of frustration.  The more open I become, the more vulnerable I feel, and the more I can’t seem to come to grips with it.  For the sake of my relationships, this nonsense has to stop.  As much as I want to act tough and invincible, the reality is that there will be times where diabetes has a strong hold over me.  Why not accept the support others are so generously trying to give me, even after I have pushed them away?  These are clearly goodhearted people, and I should be counting my blessings instead of running from them.

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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.

Better

“Is your diabetic relative’s diabetes as ‘bad’ as yours?”

It was a fair enough question to ask considering the whole #nofilter hash tag often dictates my social media interactions.  The good, the bad, and the ugly are relayed to my followers, and I make no apologies for that.  This is life with autoimmune disease from my perspective, and if I’m going to share that story, I’m going to keep it real.

The question still kind of hurt, though.  I truly didn’t know my diabetes was considered “bad.”  Sure, my A1C is less-than-stellar.  I was overly-vocal about my insulin pump frustrations, albeit I was fighting for my quality of life.  I look back and see the desperation in my words- those spoken and those written– but I never thought that I was going to lay down and let the diabetes wave roll over me.  I was, and I still am, going to fight this.

A good friend asked the question about 6 weeks ago, slowly articulating the words, immediately wishing she could pull them back in before I could snap.  I said something along the lines of, “I mean, we’ve always more or less had similar results in our diabetes management.  But it’s type one diabetes.  There are ‘good’ and ‘bad’ days even if you’re the ‘best diabetic’ out there, and the ‘best diabetic’ doesn’t exist in real life.”

Then we returned to our beverages and talking about our jobs, and until now I haven’t thought much about that conversation.

The truth of the matter is, 6 weeks and a complete 180 degree turn in diabetes management from insulin pumping to multiple daily injections later, I do indeed feel better.  I’m almost afraid to say it because some kind of a diabetic hex might come out of the woodwork and knock me to the ground again.

My transition back to insulin injections is a bit less bumpy now.  My quality of life has started to see sunlight again.  Little things like eating a ranch chicken sandwich for lunch and sending a picture to my doctor (#yay!), bolusing insulin and knowing that it will do its thing to keep me alive when I eat that sandwich, bowling with friends and watching the exercise work its magic on my CGM graph, and having so much fun that for a few hours the CGM graph doesn’t really matter- these things that a few months ago seemed so far out of reach- are now suddenly part of enjoying life.  It feels so good that I am scared of losing it again.

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There is an element of “survivor’s guilt” in diabetes for me at times.  I know that I deserve to be healthy and to enjoy my twenties.  I know that feeling better can be fleeting if diabetes has its say in the matter.  But I also know that feeling better is something I so passionately want and have fought for, so I shouldn’t feel guilty or afraid of the betterment, right?  And even if it does eventually fade away, I will do what every diabetic does: lift my head up and find a different way to fight diabetes until I feel better again.

Moral of the blog post: Do what you have to do to feel better.  If that means writing somewhat corny, sentimental blog posts far too often, tweeting in rapid fire to get suggestions on diabetes management, or completely changing your course of treatment- so be it.  If an insulin pump works best for your needs and your health, utilize that technology if you can.  If you want to take a pump vacation, book your flight.  Using whatever floats your diabetes boat, just try your best to keep on floating.  We deserve to feel better.  And take it from someone who has been in the diabetes trenches: we can feel better.

24. P.S. I Forgive You

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

You have pierced my skin over 160,000 times.

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

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

None of us did.

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

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

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

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

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

Why was she right?

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

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

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

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

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

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