Friday, May 8, 2020

My Continuing Mental Health Water Voyage

As we mark Mental Health Month in May, I thought it'd be a good time to revisit some of my past writings on this topic as it pertains to diabetes and mental health.

For me, the struggles were most pronounced in 2011-2013. Here is what I wrote on it at the time:

I was like a ship in the darkened night-time waters trying to find my way to shore. The light house wasn't easy to find, but I knew it was there. The choppy waters of depression and diabetes and life stresses were all crashing against me, slowing down my journey and pushing me even further off course.

But a fellow Person With Diabetes (PWD) who happened to be a therapist helped me conquer those waters. I actually dubbed her "Mind Ninja" because of her nimble "ninja skills" to get into into my psyche. Mind Ninja became my navigational guide, allowing me to talk openly about how I really felt and the fears I had, while encouraging me to interact with people and confront my feelings. She prompted me to retrain my brain to replace negative thinking with positive thoughts, and move forward one day at a time. She emphasized that I should not view sharing my story or taking meds as weaknesses, but necessary steps forward.

With her help, I was able to find that beacon to help me reach the calm mental "shoreline" where I needed to be.

For the most part since then, I've been safely anchored to shore, with moments of storm weather where medication has helped keep me afloat in particular choppy waters.

Over the years, it feels as though I've been on the same voyage with varying degrees of water-roughness. I may have swapped ships a couple times, especially navigating a move between states, but generally I am still afloat and navigating this water journey.

Even now, when it feels we're treading water during a pandemic and public health crisis. Every day can feel overwhelming and at times more recently, I have been feeling like I'm on the verge of going underwater. Finding balance is a key, and it's so important to step away from the world's weight and my own mental mess to focus on some good — in whatever healthy ways I can find them.

The toughest part, in the beginning, was seeking help. I'd kept telling myself: "No, I'm not depressed. I just need to deal. This isn't anything I can't manage on my own. If I can't, then I must be weak and ill-equipped to simply handle my own life!"

But through hearing the stories of several others in the DOC, I was able to see that it wasn't a weakness to share these personal struggles... these emotional and mental hurdles that I wasn't able to deal with on my own. These people opened my eyes.

And I hope that other PWDs who need it most can find that strength and courage now, to reach out if they are feeling down in the depths.

There's nothing wrong with that, nothing to be ashamed of.

Since starting to work in the professional diabetes writing space almost a decade ago, I've also had to pay special attention to gradually weaning myself off of being connected online all the time. Personal and professional diabetes advocacy take up most of my time, and I realize that I do need to draw a line between my personal and professional lives in order to avoid being overwhelmed.

Really, we can't do it ourselves all the time and often we need some friends to help shoulder a burden -- or a good therapist who really "gets" what you're going through. The first step is knowing that it's OK to not have to carry our burdens all by ourselves...

Thursday, March 19, 2020

Welcome to the End of the World?

Well, did anyone think this is what 2020 would look like?

Global pandemic and worldwide public health emergency, everything shutting down and a potential economic collapse on the horizon.

Holy fuck.
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A "Pandemic (in Quarantine) Playlist on my Spotify is now a thing, and my own remote worklife now in its 8th year has taken on an eeerie new spin. As are my watchlists full of dystopian and post-apocalyptic TVs and movies for streaming in these strange times.

All of my work travel and conferences for the spring have been nixed, and we're all watching closely to see what the impact may be for summer events.

What about my "underlying health condition" that is type 1 diabetes?

So far, so good. No signs of anything astray. As I've shared over on DiabetesMine, I have been using the Tandem t:slim X2 device since mid-October 2019. That followed three-and-a-half years of Multiple Daily Dosing with pens and Afrezza inhaled insulin insulin. I started off with Basal-IQ and then in mid-January transitioned to the spectacular Control-IQ feature. This is only a trial run for product review purposes, and I'm still determining whether I will be able to buy and access this technology for my own use going forward... but given the state of affairs, I've been given the OK to keep using this loaner CIQ for the time being.

We'll see where we go from here.

Of course, with the pandemic fears everywhere you turn, I'm a bit nervous and anxious. Any spike in blood sugars are getting more attention and I'm not as quick to shrug them off. Our house is stocked full of hand soap (WASH YOUR HANDS!) and hand sanitizer and we're taking all the recommended precautions... as well as staying home as much as possible.

There was a common cold in the house a few weeks ago, but that was closely monitored at every stage and it's since passed without escalating to anything of concern.

Still, as everything evolves by the hour and day, it all raises the anxiety level.

Every sneeze and throat tickle raises my worry-level. But it's important to remember that sometimes, a sneeze is just a sneeze. Sometimes Michigan cold weather leads to throat fussiness. I am checking my temperature daily just in case. No signs of anything outside the norm, as that's concerned.

Doing our best to not panic and stay calm, and we're certainly not on the page as some seem to be with hoarding and stockpiling everything. Still, we did replenish our food and necessary items ahead of time just in case.

And as to meds and supplies?

Yes, I am being cautious and prepared on that, too. Making sure my insulin and supplies are all filled for at least the next few months, and have also managed to get backup insulin syringes on hand in case anything goes very sideways for the future.

In the supply container that slides underneath the bed, I was also amazed to find a couple boxes of older syringes filled about 5 years ago just before our move from Indiana back to Michigan... do syringes actually expire? I thought about tossing them as medical waste, but hesitated and flashed to scenes of The Walking Dead in my mind. So I opted to set them aside and keep, in the event of an apocalypse or something.

This whole ordeal has also motivated me to actually change my lancet for fingersticks after each use, which is a HOLY WHOA kind of moment in itself. That huge backup of never-used lancets is looking quite interesting these days. As are alcohol swipes, not only for actually wiping my fingers before each fingerstick but also for general sanitary use to stop spreading germs.

Amazing times, indeed.

I'm trying to keep everything balanced for the sake of mental health, but this is all pretty intense.

OK, this is stream of consciousness post is coming to an end... back to CNN and my Pandemic Playlist.

Be safe, calm and healthy, Friends.

Wednesday, August 7, 2019

My First-Ever Laser Eye Treatment for Retinopathy

My first-ever experience with retinopathy laser treatment was a breeze.

No pain, no big deal.

That's why my eye specialist had told me going into the procedure, but I didn't take his word for it. I should've listened and trusted him.

Instead, my anxiety fueled by a decades-long dread of diabetes eye complications -- a Fear of Complications -- clouded my emotions and prevented any sense of rational thought. All I could get my head around was that my retinopathy had finally moved to a point where something needed to be done, more than just the usual run-of-the-mill BG management that I'd been prescribed as a treatment since it first showed itself way back in 2007.

This fear's only natural. Because we're human. And we get scared when scary things get thrown at us.

When this Funky Left Eye Retinopathy was sprung on me earlier in the year, it was a quite a bit to process. I got pretty emotional about it.

My eye doc tried to reassure me, as did others who've been through this type of diabetes-related experience with retinopathy and lasers. "Calm down and take it easy," they pretty much advised. "It'll be alright."

And yet, I wasn't able to. And going into the procedure at the end of July, my nerves were all over the place. I barely slept the night before. The drive into the eye clinic was even more nerve-wracking.

Overall, the actual procedure wasn't scary or painful. In fact, it was less of an issue that normal diabetes eye exams where you have to stare into ridiculously bright lights and keep your eyes open while enduring the resulting tears.

I've created an Instagram-friendly picture post for those who love visuals (see what I did there, and then just there!)... :)

But to recap:
  • Left eye only. Retinopathy was worse in this eye, whereas it's still in the "No Action Needed" for the right eye.
  • The whole procedure from start to finish was only ~45 minutes, with half that time devoted to sitting in a waiting room as my dilation and numbing drops did their job.
  • Yep, only dilation and numbing drops!
  • An X marked the spot over my left eye.
  • The laser machine wasn't scary, it was no different than any other machine that I've had to rest my chin on and look into the light at a little dot while the doctor examines the insides of my eyes.
  • 30 bright flashes overall, that were -- as my eye doc had explained -- about the same as seeing rapid camera flashes back-to-back. This part took ~20 minutes total.


And that was it! These were on the outside part of my retina, so it wasn't as painful or drawn out as it might have been had we been focusing on the more central area.



Afterward, it was easy-peezy where my left eye just felt dilated. There was no vision impact, and in the hours afterward we went out for dinner and drinks without any issue (aside from some grimaces when the outside or general brightness hit me at the wrong angle. Over the next few days, my left eye was a bit itchy. But aside from that and an small handful of times where there was a moment of discomfort from glaring at the bright laptop screen, there was no issue.

Also, and here's a big holy moly of awesome-sauce: My insurance paid for 95% of the total $1500 cost for this! Which meant my co-pay and co-insurance amount was quite small. That rocks, all by itself.

It was also pretty cool that my blood sugars didn't go too high overall. In the hour or so beforehand, they did spike a bit due to the stress and nervousness going into the appointment and as everything got started. But they only rose to the low 200s, before leveling off and settling back down into the mid-100s within a couple hours of that. If we hadn't gone out immediately afterward for apps and drinks, I probably wouldn't have needed to dose any insulin to correct.



That's another win, right there!

Honestly, my biggest gripes were the panic and nervousness I felt going in and the fact that afterward I didn't get a cool pirate-patch to go over my left eye. I'm firmly married to the idea that eye patches should be provided, for the simple sake of being cool. Any pirate-talk you add on from there is optional and of your own choice.

Moral of the story: I'm relieved that it went as well as it did.



We have another appointment at the 10-day mark to assess and determine if anything more's needed in the near-term. That could include anything from Zero Further Treatment Needed if this did the job 100%, another laser treatment like this again, or possibly an actual eye injection (shudder) if that's deemed necessary. But really, that's all TBD. The next real gauge on how this all went will be in three months. On Halloween, as it turns out!

So now my plan is to just keep on doing as it relates to my own diabetes management -- working with my endo to do better, while fine-tuning my own discipline on CGM use and everything else and navigating my own personal D-burnout.

And then once we get to Halloween, I am totally planning to sport an eye-patch and dressing up as a pirate that evening as the trick-or-treaters come a lootin. AAARRRR!


HALLOWEEN 'PIRATE' UPDATE:

Visiting my eye doc on Halloween for the post-laser retinopathy assessment was... fun.

As noted, I'd planned my entire Halloween costume around this particular visit: The Dread Diabetes Pirate, you might have called me. I was able to wear my costume a couple times before this, for fun times with the niece and nephew, so this wasn't the first time I was all pirated-up.



Of course, being Oct. 31, the eye doc's office staff were sporting their own costumes and so it was fun to show off my eye patch and pirate-costume to some of those who were in the festive spirit.

Eye Doc was pleased with the progress, though my retinal swelling wasn't 100% gone. That's not necessarily anything to worry about, he pointed out, because it might just be slower healing. So, we have another assessment set for late January/early February to check again.

At that time, if any swelling remains, we'll discuss what comes next: another round of "bright camera flashes" lasers, a different kind of laser treatment, or possibly an eye injection (!). We shall see (pun 100% intended there!).

And so, ONWARD, me maties!!!



Friday, June 28, 2019

Funky (Left) Eye Syndrome Progresses (Retinopathy, Take Action!)

I haven't written much here at all for various personal and professional reasons, but over the years I also haven't shared much about my eye health as it relates to diabetes. The main reason: I haven't had much to share on that point of view (eye pun, totally intended!).

This is a topic that I have visited a handful of times over the years, and amazingly each time it seems a theme is that I've gone too long in between eye health visits. And that things have gone one of two ways: Either they've changed or they haven't.

Well, they have.

But before delving into that, let's recap my history with Dr. Eye Health (who when I first saw him in February 2016 was referred to as Dr. Eye Roll thanks to his attitude). At the time, he claimed my "eyes were perfect!" and there was no sign of any diabetes damage.

Um, yeah....

My first-ever mention of "retinopathy" came in 2007 in my mid-20s, but it wasn't at the point of needing any treatment other than just improving my D-management. (yes, I was and have been a damn diabetes medical textbook guide). Heck, my visits with Dr. Funky Eye in Indiana were an adventure. And we even learned that I had some funky eye syndrome that messed up my left eye's optical nerve and is apparently seen largely in T1D kids of moms with T1D... (winner winner chicken dinner, here!)

So once we moved back to Michigan and I heard this first claim from Dr. Eye Roll, it didn't instill confidence. But eventually, we moved past that, his name evolved to Dr. Eye Health, and all was OK between us.

The last time I saw him was March 2018 when it was time to update my glasses Rx, and all was still good to go, nothing had changed.

But now more than a year later in June 2019: My retinopathy has progressed. And apparently, it's targeted my left eye more than the right.



Yep, my left eye has progressed to the point of needing treatment. While my right eye has pretty much stayed the course and remained unchanged since my last appointment.

I'll need lasers.

And that thought in itself scares the FUCK out of me. It doesn't even matter that my eye doc has told me this is nothing to be scared about. That this laster treatment is the effective of looking into a bunch of very bright camera flashes, 50 times over. That there isn't even a "recovery time," because it won't hurt and will be nothing too concerning. Basically, it'll seem like my eyes are dilated and light-sensitive for part of the day and then all will be peachy-keen, jelly bean.

Uh.. suuuure.

I'm not sure I believe that. The advice seems hollow, unhelpful to make me go along with it and not panic. And I'm still scared AF. Still crying out in public over the thought of all this.

Here's what I posted on Facebook, in the hours after this news came my way:

EMOTIONAL TOLL OF D-COMPLICATIONS: So much self-blame goes into any doctor's mention of diabetes complications. No matter the reality of what is happening or needed treatments, there is primal emotional response that is nearly impossible to get over. Because you've been dreading and thinking about it since you were diagnosed with T1D as a kid. No matter the reassurances from friends who've gone through this, or doctors who are telling you what it will actually be like, there's a sense that this is exactly what you've been fearing since age 5 or when you were old enough to really process the idea of diabetes complications. Sure, the initial retinopathy dx'd a decade ago was tough but it's been pretty steady and unchanged since then, until this current left eye progression requiring lasers. No matter how not-horrible modern laser treatment may be in 2019, it's still scary and feels like the worst thing possible. But logic and rational thought is helpful, as is incredible support from the DOC + family and friends. Here's to moving forward in this 35th year with T1D.
Indeed.

So much mental baggage attached to this.

It all taps into that primal fear that has been a part of my brain since age 5. This has been part-and-parcel to my life for as long as I remember. That as a result of diabetes, I'll go blind. Or lose a limb.

I've always been expecting this. And despite my slacking in the context of diabetes care at different times in my life, and knowing that this shouldn't be a surprise because I've done it to myself, this is still something I've not been prepared for.

Clearly, I can get my head around this. I can realize that it's not my fault, even if I end up blaming myself for years of neglect and lack of diabetes attention that helped make me more at risk for something like this happening. I can place blame on diabetes itself. Of course.

A whole bunch of emotions to deal with as we move forward here.

Next steps: An IV dye test at the end of June, to take pictures of the retina and determine just how bad and where exactly the damage is at within my eye.

From there, a late July and eye laser procedure and possibly another in early August (which almost means I'm skipping out on a diabetes conference I had planned to attend). Oh well. This is not the painful scary lasers that hurt and burn and all that, but supposedly an easy-peasy procedure that won't really register after part of the day goes by. After that, we'll assess what's needed going forward -- possibly more mini lasers, or possibly an eye injection with a retinopathy medication, and so on.

Whatever it is, clearly my D-management must become a higher priority than it has been. I will be wearing my CGM more regularly, figure out if insulin pens/Afrezza is still the best option, and deal with my diabetes burnout in effective ways ASAP. All works in progress, as of right now.

And puns aside, I see where I'm at and what I need to do in moving forward.

Retinopathy and emotional D-complication baggage, be damned.


UPDATE: Here's a more recent post on how that 1st retinopathy laser experience played out.


Thursday, March 14, 2019

The Joy of Writing and Insatiable Learning

You never know what an early airport arrival can mean for your soul.

This happened to me earlier today, opening my eyes to a feeling that's been brewing for awhile now and blossoming into a soul-soothing and spirit-lifting revelation ripe with life perspective. Not to mention, inspiration by Bill Gates, Leonardo da Vinci, Dr. Frederick Banting, random airport strangers and paintings of famous past and present Chicagoans sketched onto glass panes at a hotel bar.

Whoa, dude -- deep thoughts! As you can see, the words are flowing and my brain is in full gym mode, mid-workout on the weights...

My experience began at the airport gate where I arrived an hour before my flight boarding. With a hot cup of coffee I turned to my writing tasks overflowing on my To Do list. Instead of eyeing my smartphone or opening up the MacBook to write, I opted for pen and paper. Sure, I did post on Facebook first because that's what you do in 2019, right? But that's as far as it went. Maybe it was the wide-open window view of the runways. Or maybe I was inspired by how a day earlier, both Facebook and Instagram had crashed and put masses of social media folk into a tizzy.

Whatever the motivation, here was a chance to exercise my under--utilized handwriting skills. In an actual journal.

I scribbled some notes about work and had some fun exploring different ways to write what I needed to on deadline, and then found myself drifting into other thought and jotting down observations about people arriving at the airport gate. This is a whole post in itself about those individuals, but that's for another time...

This airport experience was entertaining and relaxing, but it was only a taste of what would come once I boarded the plane and prepared for the hour-flight ahead. That's where the true inspiration, optimism, hope, and joy of writing transitioned from a creep into a full-waterfall. A smirk into unbridled laughter, if you will.

As we taxied on the runway, I found myself engulfed in a magazine article that focused on the big theme of optimism and hope. It included a whole series of vignettes by prominent folk, and one of those was legendary innovator Bill Gates who shared his belief that “innovation is an art form” that leads to optimism and hope. To get his point across, Gates wrote about his decades-long fascination with Leonardo di Vinci, describing him as a historical figure with an “insatiable learner” who was always hungry to know more. He looked at everything around him in the world, learning as much as possible and then both exploring those ideas in his head and jotting down notes in letters and sketchbooks.

A particular tidbit that Gates mentioned was a letter that Da Vinci wrote to a king in Milan, listing his many talents that included being a designer and engineer of bridges, tunnels, carriages… and at the end, that he also happened to be able to paint.

In reading this, it grabbed hold of my heart and mind and made me sit back and reflect on this as a deep thought, one that I’ve seen before throughout history. Think of Dr. Frederick Banting, who is most well-known for his idea and co-discovery of insulin – aside from that, he was a military man, a researcher on top secret government projects, and a painter himself.

History has always fascinated me, and that’s probably a big push for my falling in love with journalism way back when I was in middle school. Aside from the writing, of course. History teaches us lessons that aren’t just confined to pages of a book or posted online, they tell stories that matter and can translate into lessons in our lives now. To me, looking to history shows us what has come before us and can teach us how we might navigate the future.

It's what goes through my brain right now, as I sit here at a Chicago hotel drinking coffee, writing like there's no tomorrow as the painted faces of 22 Chicagoans watch me from above the bar.



Some are obscure and some more recognizable. Studying them, I recognize roughly 8 of 22, mostly the singers and actors and writers of those featured.  And that starts leading me into another mental rabbit hole, wondering about their lives and what else these individuals may be about beyond what history largely credits them for. This sparks conversation with those around me, and in the end it all goes back to the point:

Insatiable learning.

I want that.

When it’s all said and done, sure many may know me as a writer. Or as a guy who talks a lot about diabetes and wears his T1D on his sleeve. But I want more than that. I want to be remembered for more than just those things that I’m very proud of. A student of life, as it were.

I want to look to the future and find hope, that the world can be better but that I can always work the muscle in my head to think of possibilities and be optimistic.

In some way, I'm thinking about it like a car.

While the point may be to get you from Point A to B, it's more than that too. Driving a car from one place to another also allows you to observe what’s in between those two spots, to explore and see the world around you. There’s an optimism and hope built into that drive, knowing that you can see the world around you and having optimism and hope that you will, in fact, get to where you’re headed.

Focus on that optimism of the drive instead of grumbling about other drivers, road conditions, gas prices, inclement weather, or sunshine reflecting in the rear-view mirror. Know that you get to explore and be a part of the world, on that particular drive on that specific route.

Otherwise, what’s the point? You might as well just leave the car parked in the garage.

So is life. And that insatiable hunger to learn, to explore.

That is what I want in my life. And in particular, in my writing. I want to write not because I have to but because I want to. So that my words can explore, challenge, inspire, ignite.

Even to explore the art of handwriting, which seems like it's becoming a lost art these days of everything-online. Writing on paper feels good. It exercises the mind. Shares as much about you as the words, from how you write to what you cross out and change, to the margins you scribble in to expand on various aspects. Words are art in themselves, as is the process of writing by hand.

And it’s through writing that I have found a place of comfort since childhood, and I aim to find that familiar place again. When you spend most of your time writing on deadlines and because it’s necessary, you can lose the joy of writing and what it meant on a base level. That’s where I’ve been hovering for some time now, seemingly treading water with my words. Rather than diving underwater to explore, splashing around, swimming out into uncharted waters to just see what’s there. There may be new words or phrases, or life experiences to write about.

Again, it comes back to that insatiable learning, that curiosity and interest to expand my horizons. To meet new people or have fresh conversations with old-friends.

Here’s to that exploration of writing and tapping into that insatiable hunger for learning. I may not be Gates, da Vinci or any of those famous Chicago folk, but we all can learn from them and act with intention to just experience and share.

This brings to mind Hamilton the Musical where we're asked (to sing): "Who tells your story?"

Here's to raising my hand to that, with pen in hand wherever that takes me.