Monday, March 24, 2014

Fearing The Worst

I was beyond nervous.

Freaking out, scared in a way that I hadn't been in a long time.

The fear of possible diabetes complications, the kind you've been dreading all of your life, will do that to you.

In our office visit last week, he made a comment about not understanding an apparent blip in my blood work that he noticed. Maybe a sign of a potential complication, or something else going wrong. And then as I left his office and headed for more comprehensive follow-up labs, I noticed on the paperwork a medical term that I'd not seen before.

Being curious, I did the worst thing you could probably do in that situation -- looked it up on Google. And my brain exploded from there. My thought: Kidney failure. OMG... IT'S HAPPENING!!!!

 

And then all the horror stories ran through my mind, of worst case scenarios...

 

Luckily, a weekend email from my endo put most of my fear and frantic over-reacting to rest.

Aside from some protein in the urine, something I've had going back several years, nothing else appeared to be amiss with my complete urinalysis and blood work. What I was afraid of may have been a fluke in my bloodwork from earlier in the week, or a symptom of a lingering common cold... whatever the exact cause, it was gone for the time being.

In the words of my endo:

"All else appears fine."


 

And the fact that he emailed me over the weekend, responding to my somewhat-frantic email a day earlier, that's even more priceless and reason to smile.

Combined with the fact that an entire community of people offered support and well-wishes.... there's a lot to feel good about even in the face of not-so-good news. All I know to say to my wife, family, the Diabetes Online Community and endo is:

Thank You. 




When it comes to diabetes complications, we can sometimes resort to unreasonable fits of panic. Especially when those feelings have been boiling for a while beneath the surface. We don't like talking about these feelings all the time, because they can be consuming and no matter how irrational it may be, you blame yourself even if there was nothing you could've done about it.

With my endo's calm reassurance, it seems I'm not heading down that road right now.

Some uneasiness still remains, because I'm not 100% golden. There's still a handful of issues to focus on as I improve my diabetes management and get back to a place that's confortable. One that health pros like to deem "compliant" and "controlled." We aren't there yet, but I'm doing my best.

And while there is still some worry about what's ahead, I at least am reassured for now that the worst hasn't yet arrived. It may never.

But even if that time comes, I see there's hope on the horizon no matter how dark it may seem when you're standing in the storm.

Thursday, March 20, 2014

This Isn't Shawshank

This one sucks. Sorry about that, but there's no way around it.

That's how diabetes works sometimes.

For me, it feels as if there's dark clouds overhead and tornadoes and thunder moving in, and there's just no way to avoid the storms -- not even by hiding inside those storm shelters of in-range blood sugars and community inspiration.

I'm caught up in the suckage of suspense, waiting for an answer that might help tell me what the fuck's going on, but dreading that answer as much as I'm anticipating it. So right now, I just need to get this out of my system with a little keyboard-fingertip tapping...

An endo visit where all seemed OK, except for the expected "keep on pluggin" message that was obvious before I even walked into the clinic that morning.

Nothing else out of the ordinary, except an off-hand comment about potential complications and an unfamiliar medical term written on the lab-work order.

Curiosity leads to the evil Dr. Google. A stupid move, but the only way to feel like I'm actually "doing something" when there's nothing else to do at the moment but wait. And even before the blood's sucked out of the fussy vein on top of my hand, it's already clear in my head that something's amiss. Self-defeating behavior, at it's best... or worse.

Panic, fear, dread. Self-blame, regret. Sobbing by myself in my car, before even leaving the hospital lab parking lot.

Everything erupts, flooding my brain. Thirty years of pent up emotion bubbles to the surface, boiling over and spilling everywhere. An emotional earthquake, fueling itself off its own tremors.

More regret, about what could have been. There was never any guarantee that this would happen, or that everything would be OK. But even now as these prison walls close in, there's no guarantee of what's ahead. Yet, the prison walls keep closing in.

I've become institutionalized to these prison walls of diabetes, and this world I've known since age 5 is now becoming unfamiliar, more scary, a maximum-security prison with solitary confinement instead of the county jail holding tank it seemed to feel like lately.

And my only reflex is to blame myself, to fear for the future in the present moment like never before, and just sob until my mind goes numb. And the conversation plays out in my head, a version of what a talented script-writer and actor once communicated so brilliantly to the masses:


But instead of Red to the prison committee guy, it's me talking to my endo about how I wish I could fire-up my flux-capacitor and travel back to when I was a teenager.
"Michael William Hoskins, your files say you've served 30 years of a life sentence. Do you feel you're compliant now?"
Compliant? Well, now let me see. You know, I don't have any idea what that means.
"Well, it means that you're ready to rejoin the ranks of controlled diabetes..."
I know what you think it means, Doc. To me, it's just a made up word. A politician's word, so endos like yourself can wear a white coat and tie, and have a job. What do you really want to know? Am I sorry for what I did?
"Well, are you?"
There's not a day goes by I don't feel regret. Not because I'm here with possible complications, or because you think I should. I look back on the way I was then: a young, stupid kid who committed that terrible crime (of diabetes apathy). Of not testing my blood sugar. Letting my A1Cs get into the teens. I want to talk to him. I want to try to talk some sense to him, tell him the way things are. But I can't. That kid's long gone, and this old man is all that's left. I gotta live with that. Compliant?! It's just a bullshit word. So you go on and stamp your form, Doc, and stop wasting my time. Because to tell you the truth, I don't give a shit."
Except I do give a shit, I am scared and it does matter. And it feels like there's nothing I can do about it, because I've been behind these glucose-saturated bars for 30 years and it's too late to take back those years.

Compliant? Hell, no. I haven't been, far too often during the past three decades. It's my fault, even if it isn't, and no matter what I do now it doesn't take back the past. Whether I'm "compliant" now or not, the possibility of scary complications makes it feel like these prison walls are closing in tight. And even with good behavior, there's no way out without taking a shiv to the gut.

This isn't Shawshank, and there is no redemption.

At least not now, until those lab results come in and the endo's office calls me back...

Monday, March 10, 2014

Diaversaries and 174 Years of Diabetes at the Beta Cell Bash

Today marks my 30th year of living with type 1 diabetes.

If you remember, I actually don't know the exact month or day of when I was diagnosed. But we know it happened just after my 5th birthday on Feb. 1, 1984 and a couple months before the family vacation to DisneyLand in California that spring. Not to mention that it was still cold in southeast Michigan. So, March is typically what we've gone with... and about four years ago when I received a new insulin pump on March 10, that became my self-designated diaversary from then on.

With the marking of my third decade, I opted to officially commemorate my diaversary with a few D-peeps here in the Indy area at the annual Beta Cell Bash this past weekend.

Remember that? A yearly gathering is a fundraising event for the local JDRF Indiana Cure Chasers bicycling team, which I first wrote about in 2011 when introducing you to Bash Founder Michael K. Schwab who's a fellow type 1 here in Indy? Mike started the Beta Cell Bash a decade ago, but it only lasted a couple years before taking a breather. And it returned in 2012.

So this was the third consecutive Bash since then, even more special because of the whole diaversary element.

As it turns out, I'm not the only one of the Indy area D-peeps recognizing a diabetes anniversary this month -- there were actually three others, too! Mike's also marking his 41th year with type 1 this month, while two other type 1s are hitting their 20th and 19th years this month.

In total, there were seven of us at the Beta Cell Bash with a total of 174 years of type 1 experience between us. under our belts! Mike wore his "Dia-Badass" shirt while serving as MC, and at one point he announced that all Type 1s in the house should head up to the stage...

Here's a photo that was taken, with five of us PWDs standing there on stage:

IMG_0752

Pictured above:
  • Neal Hoffman, dx'd 20 years ago this month
  • Amy VanDeWielle, dx'd 26 years ago
  • Daniel Bartholomew dx'd 20 years ago on March 15
  • ME, diagnosed 30 years ago
  • Mr. Mike Schwab, diagnosed 41 years ago in March 1973.
That photo includes 136 years of type 1 on stage, and we know there was at least two other type 1s at the Beta Cell Bash who weren't up there with us that added another 8 and 30 years to the total tally -- so really, there was 174 years overall!

Yes, there was beer and a few of us exchanged some "diaversary rounds" while sharing some good laughs and enjoying the Beta Cell Bash, which had a Johnny Cash theme this year. Though it was tough to talk much, we shared some tidbits about life with diabetes over the years, insulin pumping and support we've seen, along with talk about the importance of the Adult D-Community.

I know 30 years feels like a long time to me, but it's all relative -- really, it's a drop in the bucket compared to others who are at their 40th, 50th, 75th or even 80th years of living with type 1. While I still do worry about how long I can last before complications start weaving their way into my life and impacting my daily life, I'm also more optimistic than I am pessimistic these days because of all the inspiration that's out there.

Yes, I have started seeing complications -- retinopathy and neuropathy mainly, and fortunately they haven't progressed to the point where I've needed to do anything really different than just "keeping my blood sugars under control." Uh huh, right. Those are scary, and I do worry about what other damage diabetes has done to my body during these past three decades -- especially as a result of my rebellious teenage years, when my A1Cs hit the mid-teens.

Looking back, I'd have to guess that probably a good decade of my D-Life -- A THIRD OVERALL - was probably in the regrettfully scary vicinity of completely batshit out-of-whack. Blame the "Why Bother?" attitude that hit in the middle of the three decades. But fortunately, through a variety of factors that include growing up, facing my own mortality, the support of my wife and family and Diabetes Community, things started changing about a decade ago.

I've struggled, but have also succeeded and made the most of diabetes. And where I once felt diabetes was a curse and a burden (all the time), I more often see it as a blessing that has helped me improve my life in many ways. Not every day, obviously. There are times I hate diabetes in the moment, where I cringe at how rebellious I used to be and how bleak the future feels when surrounded by Highs and Lows, complications and so on.

But we can't live our lives in regret and dwelling on the past, and we can't be paralyzed by the fear of what may never come to pass. So I've been able to move on most of the time and look forward. There's a lot to be thankful for and continue to hope for, and I'm eager to see where the next years -- however many there may be -- take all of us.

Monday, March 3, 2014

Ten Years A Hoosier (An Ode to Linda's Place & the Corner Booth)

I've now been living in the Indianapolis area for a decade.

Hard to believe so much time has passed... (since the actual 10-year anniversary on Jan. 9, 2014)

Three journalism jobs, two houses in the same city, and many different diabetes advocacy legs through those years.

Looking through some old papers recently, I came across a handwritten letter from a close friend written just before I left Michigan for Indiana. I remember how it was written at our last visit there before my move, and it was written to those who'd follow us, sitting in that corner booth we'd learned to love. To the countless hours just enjoying coffee and conversation, learning and finding ourselves.

Given the anniversary, I thought it was worth sharing now.

Finding the Bottom to a Bottomless Pot
To: Michael "Indiana Jones" Hoskins

A cheese little greeting for those of us who take to seating
In the famous Corner Booth.
Thanking God these walls cannot talk
For the endless hours we've sat here
To dream and scheme,
And over-analyze and gawk.
Heaven only knows when the first time really was
That we claimed our original cast
And heaven only knows, this time today
Surely won't be our last.

So here we are finding the bottom
To a bottomless coffee pot.
We sure did talk, we talked a lot.
May whomever falls here next
Be smart enough to document in text
May they be as blessed as we both were
To fall in live with politico news,
And friendhip so fine.
May they remember, that we will be back
And then and always, this little corner booth will be
Yours and mine.

From: Kari "Nonetheless Navarra" Woycik, 12/16/03.

We did journey back a few times through the years, as well as to another location outside of the hometown of St. Clair Shores that shares the same name but just doesn't have the same atmosphere (or memories).

Photo Credit: Ava East of the Lakeview Husky
And so, with all this in mind, I was shocked and saddened last fall to learn that Linda's Place, the home of
our beloved Corner Booth, had been hit with a fire and was closing down -- at least temporarily. To date, several months later, it's yet to re-open.

Recently, I came across a post in the high school newspaper where I once served as editor-in-chief nearly 20 years ago. Honestly, it was an emotional read: http://www.thelakeviewhusky.com/2014/02/25/lindas-place-keeps-its-place-in-our-hearts/

Here's the first two grafs from the Lakeview Husky story, that I found myself nodding to when reading:

Linda’s Place, located on the northeast corner of Nine Mile and Harper, is known as the ritualistic hangout place by many of St. Clair Shores’ youth, catering especially to both Lakeview and Southlake students all through the day and night. It had the vibe of a truck-stop diner mixed with your little ol’ Grandma’s curio-enriched kitchen. People either love it or hate it, but regardless of one’s own opinion, it had a good 17-year-long run up until 2013, closing it’s doors temporarily. It has been stated that it will reopen in May of 2014 if all things go accordingly in regards to a property dispute.

To some, Linda’s was just a mark on the map, but to others, it was a second home; thus, its closing was met with great dismay. From habitual visitors to irregular customers, it was the place to be on a warm summer night or in the cool autumn twilight in the Shores, and believe me when I say that the size of the place was just a fraction compared to the memories made there.

Here's to hoping Linda's can reclaim its glory and re-open there for future generations. But even if that's not destined to happen, here's to the memories so many have had at Linda's Place through the years.


Wednesday, February 26, 2014

Coffee and Diabetes Conversation in Indy


A small group of us in the Indy area got together recently for an Adult Diabetes Meetup.

About 8 of us came out, including my good friend Cherise Shockley who also lives nearby in the Indy area. We had some great conversation, ranging from the crazy winter weather, jobs, our dogs, health insurance adventures, insulin pumps v. injections, the wonders of CGMs and of course some other random points during the course of two hours.

Of course, the big question we analyzed: "What is a Hoosier?"

This is a question that apparently has no rock-solid answer, and in the decade I've been living in Indy there's been no consensus. I remember a local museum exhibit years ago exploring that, without anything be settled.

As always, no matter what we were talking about, it was good conversation. And there was plenty of coffee to go around!

Here's a photo of the group, which sadly doesn't include Cherise as she had to scoot before this was taken. It also doesn't show the awesome husband of one of our friends, who agreed to snap the photo of us.


Oh, and this candid shot that Jeff snapped while we were chatting it up...


 
It's actually pretty amazing that it's now been almost 4 years that these local D-meetups have been happening.

What started out with a push by the JDRF Indiana chapter to extend its outreach to more of the adult D-community, quickly branched off on its own and left all organizational ties at the door. We know have an email list of about 65 local D-peeps, plus a private Facebook group with about 35 people.

These are all very informal without any agenda or designated topic (although we did try that once a year or so ago, without much success.) There's been coffee shops during the week and weekend, brunches, dinners and after-dinner drinks, to bowling alleys where we had the largest turnout of about two dozen people.

Anyhow, this past meetup was a great time and I can't wait for the next one... which happens to fall on March 8, just two days before my 30th diaversary!

Yes, it's time again for the annual Beta Cell Bash that should bring a good number of us in the D-Community together. Remember this one, founded 10 years ago by local Indy PWD Michael Schwab? Well, as it turns out, this year is actually Mike's 40th diaversary and so we're hoping to have a sort of "dual-diaversary" celebration in conjunction with the event. Fourteen bands will play covers by Johnny Cash at Radio Radio beginning at 8 PM. Simultaneously a silent auction of artwork by 25+ local and nationally known artists will take place across the street at the New Day Meadery.

As it has been in past years, this one should be a blast!