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!


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.

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.

Wednesday, March 6, 2019

A Conversation With My Dog About Doctors

The dog and I had a deep conversation recently.

OK, fine. I'll be honest: It was mostly me ranting, with her just watching and listening. Every so often, she'd wag her tail, raise her ears or tilt her head inquisitively. Mostly, the dog was there to listen and offer moral support.

You see, I had a doctor's office visit recently. We've been back for nearly four years now and have had the same Michigan-based HMO policy during that time. It's great insurance coverage and I am very thankful for it, but it's a bit frustrating as to the headaches I must endure as a part of the process.

For instance, the endocrinologist that I've seen for 3+ years now is one of the best. And while he's cool with unofficially being a point-person for my healthcare since 99.9% of it relates to my T1D, it's not official and my insurance requires a Primary Care Physician. That means in order to see my endo or any other doctor who's basically a "specialist," I must have a referral. And they only last a year.

So annually, I must go through the task of going in to see a new PCP to basically recap my general health picture to get these referrals. And per usual, I decline to do anything more like blood-work, lab tests or medication changes because that's all handled by my endo's office. I prefer that everything go through his office, since his name or clinicians are the ones signing my Rx's.

Of course, these Primary Care Physicians aren't pleased with my brushing them off.

I also happen to go to a family clinic about a mile from my home/remote work office, out of convenience; and this particular place is in the same hospital-affiliated network that my endo is. Unfortunately for me in several ways, it's a "teaching facility" which means I typically see 2nd or 3rd year residents who are just going through the motions; I've never once seen the actual doctor whose considered faculty, and I refuse to wait several months for an appointment that I don't take too seriously to start with.

As such, the last time I was at this office to see anyone in person was in late 2017. Last year, I lucked out that the referral specialist agreed to just renew my referrals for my endo and other docs, so I was able to skip seeing a doctor there.

Not so much in 2019, and the in-person appointment was required before anything else. So I sucked it up and made the appointment.

Since I've now just turned 40, I also figured it was time to check off some non-diabetes related health tasks that materialize as you age. Among them, a physical.

After seeing a very nice nurse who went through the check-in health measurements and online chart checks, I was left alone to wait for the never-seen-before doctor. I waited an hour, and in doing so was already missing out on an important work call that had started just before my appointment time.

The doctor finally entered and ignored my extended hand as he studied a paper chart, and this put me in an even-more grumbly mood.

"Wow, you haven't here since 2017? And you have diabetes!"

My response: "Correct. I see an endocrinologist at least a few times a year and work with him directly on my diabetes and most other things. But my referral is expiring soon and my insurance requires that I see a primary care physician, something he isn't able to do officially. So that's why I am hear. To get my referrals."

After dealing with this young doctor's disbelief that I even needed a referral, which is straight up fact for me since 2015 when beginning on this Michigan insurance plan, he moved on.

He started asking about my medications, without looking at the online screen where they had been entered by the nurse an hour earlier. I reminded him of that. While also handing him a written sheet listing the med names and doses. And noting that I didn't need any Rx fills, because my endo handles that all.

[[ The dog, meanwhile in real time, is just looking at me. I can't tell if she even cares about my story, but at least she's listening. ]]

"What's Tresiba?" he asked, and I explained.

"What's Afrezza?" he asked, and I explained.

"You also take Novolog... why are you on so many insulins?" he asked, and I politely brushed him off by reminding him that it's something my endo and I have determined is best.

He then mentioned my endo and wanting to see those records, to which I suggested he give my endo's office a call. Or simply look at the screen since both facilities are in the same hospital network system... and last I knew, the records were being shared. He did that and found the records, from my last visit in November.

[[ At this point in my story-telling the dog hopped up onto the couch and gave a look of concern, before putting her head down and sighing... clearly, we were on the same page here ]]

And this is where it elevated to the next level.

He saw my higher A1C. He noted how my labwork was overdue, for many things including thyroid and kidney function tests. And he connected that all back to what he'd already observed about my lack of primary care doc visits, a higher blood pressure reading despite my current endo-prescribed ACE inhibitor... and generally, my lack of enthusiasm for talking to him in particular.

"I'll be right back," he said, and left the room.

Oh, boy. Now I'd done it. He was only gone a few minutes, during which time I put my socks and shoes back on. He re-entered and didn't sit.

Clearly, the tension had risen.

"You need to change medications," he declared.

Um, no. Even if that's the case, I'm not comfortable with that here. It's a conversation for my endo and I to have, once I can get the referral.

The 2nd-year resident explained the role of a primary care physician to me, noting how important that job is and that he can help explain things to me that other "specialists" may not.

"Listen, I appreciate your job and understand that I'm being difficult here. But I don't need you to explain that to me. While some may, I don't want that from you. It's not why I am here."

He glared at me, dumb-founded.

"You're basically asking us to be a referral mill, something that I'm not comfortable with..."

Then I guess I will be taking my business elsewhere, I stated. Paraphrasing what I told him next: I'm essentially checking off a box here, for insurance purposes. I'll get to managing my health with the appropriate people who know my history and I trust to work with me in that decision-making. Sorry, bud, that's not you. Chances are, I'm never going to see or hear from you again after this visit -- just as it's been every single time I have come here since mid-2015.

What happens if you go to see another doctor and that person tells you to change something, and you need help understanding it?" he asked.

"Then I'll ask that doctor and work it out with him or her. And then let my endo know."

I was actually a bit insulted that this particular young doctor didn't think other doctors, especially those who've been practicing MUCH LONGER than he has, would not be able to make simple recommendations or explain care. That I would need him or this office in particular to explain it to me.

[[ The dog was again perked up, sensing my rising blood pressure,  and inched closer to me and put her head on my leg. That was nice. ]]

After two hours in the office, I was finally able to leave after the young doctor all but threw up his hands and gave me the paper referrals needed to get into my "specialist" physicians. I checked out and left.

Granted, I know that I am being difficult here. That really, I need to put more care into my own health and diabetes management and that -- in the context of this primary care office -- that I should respect their role more. I'm basically gaming to work the system to get what I want.

Still, I didn't feel listened to at this office or by this doctor. And that maddens me. It's also a similar experience I had the last time I was there, and why I hadn't returned in so long.

Maybe now that I'm 40, I can do better on my healthcare. And take it more seriously than I have, to improve my D-management as well as my A1Cs and general health.

I just don't think a primary care physician is what I need for that, and it'll add more headache and stress and push me toward not wanting to take care of myself. I'd like my insurance company to know this, too.

Again, I know it's complaining just to complain here. And that in the end, I've got great insurance coverage that just requires me to jump through hoops. Necessary hoops.

[[ It's a damn shame my dog can't be my primary care physician... she already does more for me than any PCP has in the past three years. Maybe I can teach her to write referrals.... ]]

Oh well. We can dream, right??