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...

Friday, March 14, 2014

Thirty Years Strong with Type 1 Diabetes: A Diaversary Tribute

My broken pancreas is now 30 years old.

Yep, this past week brought the official start of my third decade with type 1 diabetes, a diagnosis that came back in 1984 when I was five years old. To be honest, the specific date and month of diagnosis has been lost to time, but we know it was in March or April that year. And after a new insulin pump arrived on my doorstep a few years ago on March 10, I declared that date as my official diaversary day.

No, I don't exactly "celebrate" the day. Rather, it's just recognition that another year has passed, and I've been able to continue living as well as I can with type 1 -- the notion that at least for one more year, diabetes hasn't bested me. Or as my friend and fellow type 1 Kim Vlasnik likes to say: Diabetes Won't Stop Me.

Looking back, I'd have to guess that probably a good decade of my life with diabetes -- A FULL THIRD OF THAT TIME -- was probably spent in the regretfully scary vicinity of "completely batshit out-of-whack." Blame the "Why Bother?" attitude that hit in the middle of my 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...

And now, here I stand as a diabetes advocate (best I can), D-writer, and generally pretty happy person with a darn good life. Now THAT is something to celebrate!

This past weekend, I opted to mark my big 30-year diaversary with seven D-peeps here in the Indy area at the annual Beta Cell Bash -- and together we have 174 years of type 1 experience under our belts! The Bash is an annual fundraising event for the JDRF Indiana Cure Chasers bicycling team, and it's been a blast attending since it got restarted (after a few year's break) in 2012.

At one point, Michael (who was sporting his "Diabadass" T-shirt while serving as MC) announced that all type 1s in the house who were celebrating diaversaries should head up to the stage... and five us made our way up there.



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, 30 years ago; and Michael K. Schwab, 41 years ago this month. That photo includes 136 years of type 1 on stage, and we know there were at least two other PWDs present who added another 8 and 30 years to the total tally -- to hit that 174-year overall total!

It was a fun time, but one that also brought some reflection on my part, about how much I appreciate advances in D-Management and technology over the years, but just as important, how meaningful peer support has been in my life -- especially for the better part of the past decade with the Diabetes Online Community. It's been invaluable and life-changing, both personally and professionally, and my DOC family has been an incredible addition to the support from actual family, my "real-life" friends, and my "Type Awesome" girlfriend-turned-wife, and of course those who've been on my D-Care team of health pros.

Thanking My Original HCPs

First off, I thought I'd take a moment to thank three individuals who were there in the very beginning: my very first endocrinologists and educator. For blogging purposes, we'll just refer to them as Dr. Friendly, Nurse Kathy, and the unforgettable Dr. Strict.

Dr. Friendly: You were my first endo, who diagnosed me with type 1 way back in 1984. Since I was so young, I don't have many actual memories of my diagnosis like so many do. Except that it was quickly recognized thanks to my mom's longtime experience with type 1, and so after we saw the initial signs of extreme thirst and urination we headed right to the doctor. My mom tells me I only hit the 200s, so there wasn't any near-DKA experience like so many go through.

We came to see you at Children's Hospital of Michigan in Detroit. Although the details are fuzzy, my mom and I both remember generally that you were very nice and really cared. Unlike other docs through the years, you were very good at dealing with kids and didn't try to treat them like little adults, meaning you didn't have expectations that I'd follow rules and routines like older patients might.

A few months ago, I found you on Facebook and it's been great to connect some online! It's almost like coming full circle. But now, I want to thank you publicly for being one of the people who helped me get to this point three decades later.

(Side note: I'm not the only DOC'er to come full circle in finding some of the original cast members of D-Care Teams of the past - both Kim V and Kelly Kunik have shared their stories of re-connecting, too!)


Nurse Kathy: You were the face of my Diabetes Care Team, the person that I always looked forward to seeing and working with when I came into the office. I understood that you were "overseeing" all aspects of my day-to-day D-management, and our family could reach out to you at any time. You wrote a touching letter for me about four years ago when I was applying (belatedly) for my 25-year recognition certificates from Lilly and Joslin, and I think that quoting that letter here would be the best way to illustrate how much impact you've had in my D-Life:

I have known Michael Hoskins since March of 1984, when he was diagnosed with insulin-dependent (type 1) diabetes at the age of 5. I recall specifically that Michael was 5 when diagnosed, as that was the same age his mother had told me she herself was diagnosed with diabetes. I continued to work with both Michael and his parents through our outpatient clinic, until I left my position at Children's Hospital when Michael was 17 years old.

It is with great pleasure that I write this letter, and I smile even now when I recall the image of 5-year-old Michael for two reasons:

1. Michael had a stuffed animal, "Froggy" that he held and dragged around with him (as seen to the right, in a pre-dx'd pic with my mom's parents).

2. He always lit up with a smile when 'Nurse Kathy' came to see him.

Mr. and Mrs. Hoskins were in regular contact with me through the years I worked at Children's Hospital, and I recall providing helpful hints to his mother when he was getting ready to start school and continued with regular contact on the phone as well as at clinic visits as Mike grew and developed. I remember that both of his parents highly respected our advice in regard to handling Mike's teenage years, and I was always proud that the love and limit-setting they provided helped him (and them) make it through his growing up period without any obvious physical or emotional scars.*

Since 1996, I've continued to maintain contact with Michael and his family as a friend and at times a consultant. I have seen Michael grow from a brave little boy who did not complain about taking insulin injections or having to follow a diet, to a mildly rebellious teenager and now to a responsible young man who is married, working with the newspaper in Indianapolis and taking charge of his diabetes control.

*See? A health professional attests that I have no scars -- all good!

Nurse Kathy, thank you so much for all you've done for me through the years. You now have your own private health education and consulting practice and it looks like you're doing great. The advice and diabetes care you gave me when growing up helped empower me, and that's been invaluable. Now, as you know, I've moved on from general and legal news reporting to diabetes journalism here at the 'Mine, and in connecting with many more CDEs through the years, I can now appreciate even more how much you did for me early on. Also, so you know: Froggy still sleeps with me each night, as he's still my special "Frog Before Diabetes." There aren't many memories or items that have stuck with me from those very early days, but an image of your face always did -- and still does now -- bring a smile to mine. All I can say now, once again, is Thank You!


Dr. Strict: You teamed up with Dr. Friendly a few years into my diagnosis, and we were together through the time I was about 18. While I remember you knowing your diabetes management of the 80s and 90s, we didn't see eye-to-eye on how to communicate. You were very tough and liked to use scare tactics to convince me why D-Management was so important. What you didn't realize was that your attitude and judgement made me rebel even more. I heard those horror stories all the time, and didn't need your reminders at every visit! Of course, my double-digit A1Cs were bad news... but the support and two-way discussion I needed wasn't your strong suit. Now of course I regret not taking my diabetes more seriously back then, as you were just trying to make me understand. One memory stands out among the rest: You looking into my eyes after seeing my 15% A1C, and telling me that I was killing myself and would be dead by 21 if that continued. Yes, that was harsh but it was a truth -- and it set me straight for a time. So that particular scare tactic worked briefly, but it didn't inspire long-term change. That didn't happen until many years later when I found hope, a purpose in my life, and peer-support that truly gave me the empowerment and motivation needed.

And that's what I have to say to this trio.

To give proper credit to these first three and to others I've worked with over the years, I bought some Blue Cupcake cards to send to my past and present D-Care and Support Teams. These cards are the brainchild of D-peep Allison Nimlos, a former team member here at the 'Mine, and are definitely worth checking out; they even have "Happy Diaversary" cards! But they don't yet offer endo or CDE-specific Thank You's, so I got creative and used the "Thank You for Supporting My Ride" (with diabetes) versions. :)

Just Keep Living
I know 30 years seems like a long time, 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 mark of living with type 1. While I still do worry about how long I can last before complications enter my life, I'm also more optimistic than pessimistic these days because of all the inspiration coming my way (#DOC).

Lord knows that I have struggled, but I've also succeeded and made the most of diabetes. And where I once felt diabetes was a curse and a burden (all the time), I now more often see it as a blessing that has helped me improve my life in many ways. Not every day, obviously. There are times when I just hate on diabetes, and times when I cringe thinking back on how rebellious I used to be and how bleak the future can feel when roller-coastering between highs and lows, dreading 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 keep on strivin' to look forward with hope. 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.

 - - - - - - - - - - - - - - - - - - - - - 
This post was originally published by Mike Hoskins on DiabetesMien in March 2014.

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.