diabetes social media advocacy

“Shots, Shots, Shots, Shots! Everyyyybodyyy!!”

(Thank me later for getting that LMFAO classic stuck in your head.)

May 6 will mark six months since my return to multiple daily injections (MDI), or, as I like to say, “shots.”  Let’s call it like it is, people.  It’s sticking a needle in your arm, butt, back, stomach, leg many times per day to deliver life-sustaining medication.  It is not a cure, but it gives us life each day.

At a recent doctor’s appointment I proclaimed, “This rollercoaster isn’t working.  I need to return to the pump!”

To which my doctor countered, “And you told me the same thing about the pump before you went back on shots, Ally!”

I responded with a stunned face that only a googley-eyed emoticon can convey.  My doctor was right.  Diabetes is not as simple as insulin pump versus shots versus Afrezza versus whatever floats your boat.

If I have learned anything in the past six months, it is just how different everyone’s diabetes is and just how different our treatment methods may be- whether out of personal choice or simply out of necessity.  I’ll give another plug for Spare a Rose here: Most of us in the #doc are blessed to have any access to insulin, never mind the added bonus of having some flexibility in treatment options.

With that said, I know I seem like a broken record about the insulin pump.  I want to set things straight here once and for all, while providing an update about my shots journey for those who may be interested.

Insulin pumps, when functioning optimally, are amazing devices.  Going on the pump in high school opened up a whole new world to me.  My parents breathed a sigh of relief that I could enjoy being a dorky kid with a bit more freedom back then.  There are things that I miss immensely about insulin pumping: fine-tuning insulin doses, temporary basals, basal adjustments in one minute flat, carb-count/correction factor/insulin on board “wizards,” stability in blood sugar values on the good days.

If the pump works for you without many issues, all the more power to you. I want you to use whatever makes you feel healthy and happy- the same goals that I want for myself. In my rare case, going on shots had to serve that immediate interest in order to save my health. Do what works for you.

You can achieve a healthy lifestyle on shots, but it is more of a clunky, awkward sort of dance.  Once that Lantus is injected, it’s there for the day.  On Friday, my pancreas decided to rev up a notch (sarcasm), and for some odd reason I could not get my blood sugar to rise all day despite having taken the same dose of Lantus that I take every single day and hardly bolusing Humalog.  I force-fed myself almost all of the leftover Easter candy to no avail.  Good Lord did I miss the temp basal feature of the pump then! I longed for the personalized touches of modern technology that brick and mortar insulin injections simply do not afford.

I would ultimately like to ease into an “untethered” regimen of background Lantus in case of pump failures coupled with insulin pump usage again. However, this is quite complex, and we are not quite there with the shots yet. More details need to be worked out in terms of my basal and bolus plans. We are not settled into our comfort zone at this time, but we will get there.  For now, we are enjoying the fact that insulin is getting into my body without technological glitches causing ketones each day, a freedom that I will never take for granted again.

Many topnotch brainiac doctors have looked into my pump issues. We know that the product did not work for me personally. But we also know that a pump-centric solution has not yet been provided. Right now, we do not need to add another factor to the equation. We’ll give shots a shot (see what I did there?) for another few months, at least.

I find myself daydreaming about a cure so often now: the party on the tropical island with the entire #doc; the sugary drinks consumed without having to stop and bolus- whether that be via insulin pump or shots; the happy kind of tears.

As a child when that elusive diabetes cure was “ten years away” (cue inside diabetic joke laughter), my father used to tell us about the enormous cure party we would have. There would be a table in the middle of the front yard with a sledgehammer on it. We would smash my blood glucose meter, syringes, and other diabetes supplies into tiny pieces to signify victory over a vindictive disease.

The sentiment was well-intentioned, although today I must admit that I laugh a bit at that particular daydream. If I were cured tomorrow, all of those diabetes supplies would immediately be donated to people who needed them in the interim. The supplies have nobler uses than being crushed by a sledgehammer.

We should be thankful for the supplies that we have keeping us alive right now. If an insulin pump does its job for you, perfect. If Afrezza is your drug of choice, inhale away. If shots suit you better, go for it. However you choose to do so, just fight the good fight until there is a cure.

Please keep those cure daydreams alive by continuing to advocate so well. #weneedacure

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Try.

Try.

Dictionary.com says

“to attempt to do or accomplish”

“to put to a severe test”

“subject to strain, as of endurance, patience, affliction”

“to attempt to open (a door, window, etc.) in order to find out whether it is locked: Try all the doors before leaving.”

Fear.

Dictionary.com says

“the feeling or condition of being afraid.”

I fear spiders.

I fear insulin- too much and too little and not finding that happy medium dose.

I fear carbohydrates- too many or too few.

My biggest fear, though, is misconception.

If something “bad” ever happens diabetes-wise, others might think that I didn’t try.

This is why,

despite the fears,

brush the spider off the car windshield.

Say a prayer and take the insulin.

Eat the carbohydrates.

Treat the lows and the highs.

Until there’s a cure, we must

“Try all the doors before leaving.”

Try. 

Short and Sweet

If you have wanted to get more involved with the diabetic online community (#doc) but are not quite sure how to do so, today is a good day to dive right in.  We don’t bite!

Use the hash tag #IWishPeopleKnewThatDiabetes (brought to us by Kelly @diabetesalish) to document what you want others to understand about diabetes.  Advocacy starts with the first tweet, Facebook post, blog writing session, and so forth.  And advocacy can happen anytime, not just today. We’d love to have you onboard!

If Beauty & The Beast participated in #SpareARose…

If you want the emotional side of why I think #SpareARose is such an important advocacy endeavor, please see here.

One more emotional plea for good measure: Ketones suck.  They shouldn’t exist; no one should have to endure that level of discomfort and danger.  Thinking of little kids across the globe suffering ketoacidosis while waiting for life-sustaining insulin that may not get there in time- well, it just gets to me.  It’s not fair.  Even if we can’t remedy their suffering overnight, it is our moral obligation to do what we can here and now to help them.

On the lighter side of things, I’ve been thinking a bit about Disney.  What if Beauty & The Beast had spared a rose?  They would have cut to the chase with living happily-ever-after a lot quicker, and they would have also spared us that annoyingly-catchy Gaston pub crawl song.  (Sorry it’s stuck in your head now).

Since we can’t rewrite a Disney film, let’s spare the rose for them now.  Let’s chase these ketones away from people who do not have the blessings of accessible insulin that many of us have each day.  We know how hard diabetes can be, even with various sophisticated tools of the trade available to many of us.  Imagine not even having the bare minimum in treating diabetes.  In 5 seconds with a few clicks of a mouse and $5 donated, we can give those less fortunate than us a chance at their own happily-ever-after’s.

Please spare what you can: the cost of your morning cup of coffee, a movie ticket, your favorite type of ice cream.  However you choose to find ways to give, please #SpareARose this February.

Thank you

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.

Wordless Wednesdays.

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Alright, if you haven’t noticed by now, I always need to add a “few” words, but this is my attempt at copying the “Wordless Wednesdays” posts that I’ve seen on some other blogs out there: 

Gearing up for Diabetes Awareness Month in November.  I have a feeling the DOC is going to make some noise next month, and rightfully so…

Happy One Month Anniversary!

Wow- it’s really been one month since Very Light, No Sugar got dropped off by the stork and fell into the internet world?! First of all, I want to say THANK YOU to everyone who reads my blog. While I am probably not a blogging superstar by any means, I am happy to report that SOMEONE OUT THERE READS THIS! That, in and of itself, has helped me immensely to not feel so alone with diabetes.

The same concern from the very first day of kindergarten- “Will anyone like me?”– translates over into adult life, too. So, to those who do like me, thank you. It is a pleasure to get to know you through our shared connection of diabetes, and through the general connection of our roles as human beings supporting one another. It has been quite therapeutic to have someone to talk to here, to hone my writing skills that my talented English teacher, Ms. O’Neill, spent countless hours instilling in me during high school, and to connect with all of you. I have thoroughly enjoyed reading your blogs, your tweets, your Facebook posts, and the like.

On the bad days, you are the motivation to keep on truckin’. On the good days, I am happy that we all celebrate our moments of victory together. I have learned so much from you- more than any medical book could have ever taught me. You helped to troubleshoot my pump issues, analyzed proper sick day protocol, and so much more. Your wealth of knowledge of one of the most complicated diseases out there never ceases to astound me. You know diabetes because you live diabetes. You cannot put a price tag, or even a graduate degree, on such intimate understanding of a chronic illness. I wish that we did not have to comprehend exactly what the other person means when it comes to diabetes, that we did not have our own diabetes vocabulary, that this would be cured overnight for us, and that none of us had to suffer difficult times. But if we have to go through it, I am so happy to be doing so with some of the best people around.

My one regret is that I did not start this process sooner. I suppose I had to build up the confidence to give it a go, and I am so happy that I did. It helps that those in the diabetic online community (#doc) were so welcoming in letting me be a part of their diabetes social media advocacy (#dsma) efforts by expressing what being diabetic means to me. I promise to pay it forward to other “newbies” in the future whenever possible. I want to specifically express gratitude to Craig @HumnPincushion and Jere @integraljere for rooting for me in the very beginning. Sometimes all it takes is knowing that you have a little support out there, and it gives you room to grow. You both exemplified this for me, and I have learned a lot from your kindness.

Cheers to you all, and keep doing what you do in terms of our ongoing diabetes discussion. It means something to someone out there, especially on the sick days.

Thank you for coming into my heart. You’re officially stuck there, just saying.

 

Love,

Ally

#FreeDiabetics

I love this movement because it is short and sweet (pun intended).

Check them out at:   https://www.facebook.com/freediabeticsmovement   and   @freediabetics_

We live in a world very much capable of finding a cure for diabetes, but it will take lots of prayers, research, financing, and determination.  Until then, diabetics are imprisoned in a state of constant vigilance regarding high and low blood sugars.  There is no parole when it comes to type one diabetes.  #weneedacure

FreeDiabetics3

Side Note: Very Light, No Sugar suggests looking at Faustman Lab at Massachusetts General Hospital and donating whatever you can- even the $2.00 that you would normally spend on your morning coffee- to help us to one day rid the world of diabetes.

http://www.faustmanlab.org/

Don’t Cry?

As type one diabetics- many of us diagnosed as children- we learned from a young age to be tough.  Grown adults cried like sissies getting their flu shots at the health clinic while we stood still with stoic faces.  One of my strongest memories is of my first endocrinologist’s office. I had just turned three years old and was getting accustomed to insulin injections and finger pricks. This particular office in the Worcester, MA, area performed A1C tests by drawing blood from their subjects’ arms with syringes and then sending the samples off to the lab. Pretty caveman-like if you ask me…

Well, I was three years old and a few nurses were pinning me down to stab me with a long needle. Naturally, I cried. We went back to that office a few more times. I can still visualize the indoor playground they once had in their waiting room, until someone became fearful of liability and it was removed. My mother tried to comfort me, telling me to be strong. “Try not to cry,” she said. What else could she really say? I was going to get shots for the rest of my life, so the sooner I learned not to fight this concept, the better for all of us.

At the next appointment, I bit my bottom lip and braced myself for the impact of the syringe in my tiny arm. I didn’t cry my usual amount, but I whimpered a bit.

“I didn’t cry!” I proclaimed as we walked through the parking lot afterwards.

“You didn’t…?” Mom asked.

She was not trying to come off as cold, but was rather incredulous at how my young mind had just rationalized away all of the tears flooding the examination room a few minutes earlier.

I had the three-year-old version of an “Ah ha” moment, in which I realized that okay, I had cried. But I wasn’t going to cry anymore. I resigned myself to this fact, and at the next appointment I did not cry. I had accepted my fate in some small way; shots were here to stay.

Shortly thereafter my parents took me to the renowned Joslin Diabetes Center in Boston, a decision partially prompted by the fact that their A1C tests were performed with simple finger pricks as opposed to modern-day torture tactics. Over two decades later, I am still a Joslin girl. And I still fight back my tears sometimes, but I am slowly learning that it can be healthy to let them out once in a while, too. There is certain strength in vulnerability, in showing that you hurt emotionally and/or physically but that you are going to get through that pain.

I cannot speak for every type one diabetic out there, but I would venture to guess that some of you have difficulties letting your guard down at times, too. How can we complain about a head cold when we have endured thousands and thousands of injections over the years? I can’t believe my boyfriend is upset that he lost his football game! Seriously?!!  But the reality is that these are human emotions and normal trials and tribulations of life, even if these situations are not a life or death fight as diabetes sometimes can be. It is more natural to express what you are feeling than to avert your eyes to the ground while feverishly blinking back tears. Trust me, I have been there, done that, and many times at that rate.

I see today that my mentality of always being strong was a survival tactic yet a detriment all at once. Some days I have a quick temper because it is easier to be angry than to acknowledge being scared or defeated.  I am my own worst enemy when it comes to epic PMS-y Facebook rants, but this is an excuse.  Sure, we were dealt very frustrating hands by being diagnosed with diabetes.  The general public misunderstands the constant battles we endure.  We rarely get a break from the burdens of this disease.

But at the same time, if I cut the BS and allow myself to say, “Okay, your blood sugar is high and you’re afraid of the long-term damage this could do to your body, and you’re tired from being up all night responding to Dexcom alarms, and you’re stressed with ‘normal people’ factors like work and grad school,” then yeah, I am a human being. It is okay to cry.  It is okay to be fearful.  It is okay to feel, to admit that sometimes pump site and CGM changes hurt like hell even though you told yourself that the pain was the least of your problems years ago.

And I said that yesterday, too. To which my doctor replied, “But it’s not the least of your problems if you’re shooting a pump site into muscle because you have no ‘real estate’ left that is free of scar tissue.”  Fair enough, and directly to the point.  She is right.  Acknowledge that it is a big deal, Ally.

Sometimes crying makes one braver than not crying.  At least crying invokes honest, real emotion from which we can grow.  I’m ready to ditch the war paint if it means connecting with others on a more meaningful, understanding level.

“My doctor is showing up, so I probably should be, too.”

A friend- let’s call her Kayla- made this comment in a grad class we are taking together this month in regards to her former interactions with a doctor.  As a teenager, Kayla was understandably a bit defiant in terms of complying with her physician’s advice.  Weren’t we all?  But one day she had an epiphany: What was the point of attending the appointments if she was not willing to be open, honest, and determined in the process of seeking care?  “My doctor is showing up, so I probably should be, too,” Kayla realized.  She changed her outlook and told the doctor her concerns while soaking up his recommendations, taking baby steps until she was comfortable to set more progressive goals along the road to getting better.

The class laughed and we all nodded our heads in agreement.  We can go to the doctor multiple times a month to get bandages placed on our respective health maladies, but this is only temporary relief for pain and suffering that is long-term in nature if it involves chronic illness.  We must not simply “show up” with our physical presences, but also with our attitudes.

I have a doctor’s appointment tomorrow and I hope to carry Kayla’s mantra with me.  I want to “show up” with my “game face” on, ready to tackle the issues.  My doctor is strong for me every time I seek her help, so I must, in turn, be brave when making the adjustments she suggests.

Thank you to everyone who offered words of support during my rough day yesterday.  Unfortunately, those days happen more often than I would like for various uncontrollable reasons.  Chronic illness is like trying to stop a leaky faucet by clogging it with a piece of Swiss cheese.  When you fix one spot, another issue can always arise.  My pump site is working well today, but my allergies might cause my liver to release sugar and my blood glucose levels to increase, for example.  Alas, it is a new day and I am thankful that the diabetic online community understands what I mean.

Enjoy the rest of your weekends.  Here’s to a week of good health for everyone.