Thursday, March 31, 2011

My DWife's Unplanned Encounter

You never know when an unplanned D-Meetup may happen.

Today, my D-Wife writes about a random encounter she just had with a Type 1. This all came about thanks to some of the "war wounds" my loving spouse endured thanks to one of my scary night-time Lows earlier this year. This wasn't an example of Aliens, Apple Cider & Honey, as has happened before, but some other weird nonsensical hypo scenario that appears to only happen in our crazy world... Not fun, but it is what it is.

Anyhow, she's blogged about this latest encounter over at her online spot dubbed Laughter & Tears.

While I often ramble about how these other Type 1s actually do exist out there in real life, she's had much less exposure to them and often thinks I may be imagining these people.

Well, here's to bolstering my case! We Persons With Diabetes appear in the strangest places, as others have written about before. Always interesting when our paths cross... and you never know - we may soon have another recruit for the ever-expanding Diabetes Online Community!

So, go ahead and visit, and drop a comment her way!

Wednesday, March 30, 2011

Baby Steps and Fixing Flats

Exercise hasn't been a favorite activity of mine in many years, despite my Living with Type 1 diabetes.

Not since my secondary school days when sports - soccer, basketball, baseball, swimming - were a routine part of my schedule. College turned me into an exercise slacker, with only an occasional round of golf or even softball in the warmer months of the year. Walking and biking were occasional time-passers once we moved to Indiana in 2004, but even that's diminished in recent years and I've haven't been exercising much at all.

Even taking the dog for a daily walk has dropped down on my priority list, and brief walks during the work-day in downtown Indianapolis have moved the way of the dinosaurs.

Lately, this lack of exercise has been on my mind for a few reasons.

1.) My pants are getting tight.. No, they've been too tight for awhile. Now, it's gotten to the point where I've had to up my pant sizes and even secure a new pair of suit pants to compensate. This isn't exactly a trend that makes one feel better about themself.
2.) The dog wants to walk more. Tossing the tennis ball around the yard just doesn't cut it and she's eager to get more collar-and-leash time now that the warmer months are nearly upon us.

3.) Every time I see my Endo, she asks the standard question: What do you do for exercise? I'm really tired of trying to stretch the truth and attempt to convince myself that exercise is actually a part of my world. It's not.
4.) Friends in the Diabetes Online Community have been writing about the idea of exercise more recently and how they've found it energizing, relaxing, and overall good for their diabetes management and mental health. (For example: Scott, er Turkish Steve, has become the Guru of Exercise thanks to Ginger's lifestyle coaching, and his daily tweets and Facebook updates about hitting the b-ball court inspire me to do better.) A recent #sweatbetes session in D.C. where I wasn't participating made this personal desire to get back into the exercise scene seem even more pressing. Not to mention the fact that meeting Olympic gold medal swimmer and Type 1 diabetic Gary Hall Jr. made me realize that, despite my four years of competitive swimming once upon a time in high school, I wouldn't be able to make a lap if I tried to jump into a pool now.

So, after mulling my own world of exercise (or lack thereof), I've decided it's time to forge a new Exercise Path. This also coincides perfectly with the March DSMA Blog Carnival that has been all about exercise. Even though it's in the final hours, I've managed to tag on before it ended.

Winnie models the running shoes & fun D-Hat
I'll soon be sporting as I start out on
the first part of my Exercise Path Ahead!

You have to start somewhere, and so it's time for me to take those first Baby Steps and get a moving!

First, we're going to start walking every day. We have an active and always-excited black lab, who LOVES being O-U-T-S-I-D-E and going on W-A-L-K-S. So, we're going to take advantage of that built-in exercise resource and start with walks around the block. Then, we'll expand to a few blocks lumped together. Then the many streets on this side of our subdivision, before ultimately going for the full loop that encompasses the entire community of hundreds of houses.

Not only is this good for the health generally and diabetes management, but it will also help me feel more in-shape once the local JDRF Walk to Cure Diabetes and Step Out: Walk to Stop Diabetes come around in the fall. My running shoes are ready to hit the pavement!

That's the first step, but there is more to this whole Exercise Path Ahead...

Secondly, I'm going to start biking. This comes on the heels of many recent discussions about bicycling within the diabetes community, from the local Indiana Cure Chasers to those with Team Type 1 who ride across America. There's inspiration from those who bike the many JDRF Rides to Cure Diabetes scattered across the country, such as the crew on the western side of my homestate of Michigan. Or even the recent meeting in Washington D.C. of a diabetic dad who with his two adult children are devoted participants in the Death Valley Ride to Cure Diabetes. All of that has motivated me to get back into bicycling, maybe not at the same level as the above-mentioned but at least the low-key style around my community.

Yes, those are cobwebs on
my deflated front tire...

We own bikes, but have rarely used them through the years. Evident by the fact that my bike currently has two flat tires... You may even notice some cobwebs lining the tires, thanks to the frequency that we actually ride our bikes. But that's going to change.

My first biking task involves getting those tires inflated this weekend and make sure the bike is all in order. Then, I'll start my biking adventures on the same small loop around the neighborhood - a night or two during the week, then the weekend, then ultimately wherever the mood and bike paths take me! Again, maybe this isn't Death Valley - but it's my start to getting my flat feet and tires back into regular action.

Doing this will also serve as motivation and preparation for my first-ever American Diabetes Association Tour de Cure, scheduled for June here at the Indianapolis Motor Speedway. I've pledged to participate, in the spirit of making exercise a part of my life again.

So, there it is: The Exercise Path Ahead. Even though it's way overdue, I say it's better now than never. And I'm excited to say that I've already gotten started and am doing my best to not slack.

Baby Steps is the way to start, as we know from the wisdom of Dr. Leo Marvin in What About Bob? Set small reasonable goals one step at a time. One little step at a time and anything is possible.

Let it begin!

Tuesday, March 29, 2011

Bye Bye CGM

Larry The Loaner CGM and I have finally parted ways.

We've had a love-hate relationship for nearly three months, but our time together has come to a close.

You may remember that in early January I started a trial run with the Minimed 523 Paradigm Revel, a loaner from my local pump rep who offered to help out in making a decision about whether I truly wanted to purchase this most up-to-date Continuous Glucose Monitor (CGM). I've got a 722 Paradigm pump, but it only sports the real-time CGM without any predictive alerts or what the x23 styles offer. So I brought on this 523 (which has a smaller reservoir than the 7-series but is same in all other respects). Affectionately, I named this loaner CGM/pump Larry The Loaner.

We rode the glucoaster and recognized the Highs and Lows for a decent amount of time, with a few sensor breaks every once in a while to mix things up. We had our fun. And quite the opposite of fun. Overall, it wa an educational and eye-opening run together.

But after getting three "Motor Error" alerts in the past month, several mentioned that the alarm is essentially a sign the pump is dying. Luckily, I made it through the Washington D.C. trip unscathed, even though I did endure another one of those alarms there. So, that's helped motivate me to put Larry aside. Then there's the fact that I'm out of the little 180-unit reservoirs that this pump required... Smaller versions of the 300-unit reservoirs that my insurance company has so generously paid for and I have a full supply of. Without these smaller versions, it's time to go back to my own pump that holds more insulin.

So now, I've put aside Larry The Loaner and gone back to my trusted Bacon Gibbs (honoring not only the wonder that is Bacon, but the NCIS character we know and love as Leroy Jethro Gibbs.)

Just the other night, I uploaded the Carelink data one last time and took out the battery before putting Larry aside - until he can be returned to the local rep here in Indy.

I've written about my Minimed CGM feelings before on why I'm not leaning toward buying my own MM CGM, and honestly nothing has changed to make me rethink that view.

Philosophically, I've pondered the line between whether a CGM is beneficial or not. You have an influx of information that allows you to constantly monitor your health and always be in tune with what you're body is doing as far as diabetes (at least, as much as is possible with all of the existing "accuracy issues" of these devices). You can react quickly and be in more "tight control." But that all comes with a price, one that has the potential to likely flood you with just too much information. To the point of burn out.

You couple in the inaccuracies and flakiness of current CGMs, and that brings me to my final verdict: The MM CGM isn't for me right now, simply because I've experienced it lacking in the two most important aspects - accuracy and consistency. Having the CGM and pump merged into one device is appealing, but that's not the most important factor. When I can't trust the device, it defeats the purpose of having it. Not to mention the sensor needle is huge and intimidating, and the ever-slow FDA approval process on the next generation has no end in sight.

So there it is. I may at some point reconsider. Maybe when the next MM sensor comes out. Or maybe if Dexcom allows me to trial-test the Dex again, for more than a single sensor life. We'll see.

But I don't see it as a necessary expense at this point in my life, when I'm more than able to test 10 times a day and get the same desired results. The CGM makes me more in tune with what my BGs are doing, but only because I'm constantly checking and wanting to make sure I am doing my best to get to No Hitter range. That's a mind game, and one that I'm more than able to achieve without a CGM (assuming I can be disciplined enough to test, carb count accurately, and do what's necessary).

So, we go on our way as a pumper but not a CGMer. At least for the time being. And I'm cool with that.

Monday, March 28, 2011

The Longest Time Ever

What's the longest you've ever kept an infusion set attached?

I'd be willing to bet it's not as long as this current set that's been attached to my stomach since that time way long ago. I'd put money on this.

(Crouching down, hiding behind the laptop screen, looking around from right to left and over shoulder. Peers in your direction, suspiciously...)

No, I'm not gonna give it away. Not gonna to divulge a real number, indicating my sight change slacking. I need to be careful. A network of doctors, profit-hungry device makers who want to sell more sets, and secret FDA agents Those That Can't Be Named are everywhere, and they have their eyes on all of us. Really, they do. I'm serious. No, I didn't get paranoid until they started plotting against me. The conspiracy is playing out, with help from insurance companies Third Parties who help grease the profit wheels by restricting coverage amounts on these infusion sets.

Ahem (composing myself and clearing my throat...)

To protect ourselves from Those Who Can't Be Named, let's just say it's been a million gazillion super ma-billiony days. Yep, THAT long.

Ok, I think this might be a good time to point out: I'm NOT a doctor, nor am I anyone who should be remotely listened to or taken seriously when it comes to applying my own wayward crazy D-habits to your own life. No, please... Leave that to medical professionals and the oh-so-wise FDA. Please.

But desite all of that guidance on what I should do, I haven't... And you know what??? My infusion set in this longtime sight STILL WORKS!!!!

No redness. No itching or irritation. No goofy off-the-wall Highs that can only be explained by site outdateness or non-functionality. Nope, it's been all good.

Now, those smarter-than- I talk about infection possibilities. How my skin in that area might be damaged to not absorb adequately or scar tissue forming to the point where it'll transform into an Infusion Site Dead Zone. Believe me, I know the dangers of what could be. I am just lazy. That's the only excuse, and by no means is it a justification for not following the 2 or 3 day change schedule. Some have financial reasons for going longer than recommended, but I've got a stock of them in my room waiting to jump into action should their predecessor go bad. Nothing except pure set change apathy is keeping me from swapping sites.

It may be time to once again start using the fun and creative temporary tattoo system created by Roche Diagnostics (Accu-Check) last year, for what they dubbed National Infusion Site Awareness Week.

Here's what I wrote last year about this "fun little idea to help pumpers not use the same sites too often"...

The idea is to put them at the infusion site, in order to remind yourself to not insert the next set anywhere on the tattoo before it wears off in about 10 days (site healing time)."

With these multi-colored and styled temp tattoos, I found my site changes were more regular and it really worked helped keep me accountable on site changes. I've got more than enough of those tattoos left over, so I'm going to take advantage of those are start using them again to get back on the Site Change Bandwagon.

Still, I am a little concerned about the econs this set's been connected. I've kept sets in for much shorter times than this and had them fail miserably. The only one that has ever actually gotten infected came to be that way in like 2 days, and it was on the leg (hence, my reason for not liking leg sites all too much). But this one appears to be different. Part of me wants to see how long it really could last if I just let alone, but the rest of me (a majority, you ask??) doesn't want to tempt fate.

The fact that I'm blogging about this probably means a jinx is in the works, and it'll probably come lose or fail immediately as soon as I hit the "Publish" button. Or maybe Those That Can't Be Named will hunt me down, forcibly remove the long-attached set, then confiscate all of my extra sets in retaliation. We'll see. But no matter what happens, I swear they won't shut me down. These sites do live longer than the recommended timelines, and I wil continue telling people like it is, as long as it takes, no matter what they....

(static fuzzy loud noises replacing the regular blog text appearing on screen)
Attention, Blog Readers! Please know: The site is now removed. Please pay no attention to the false claims of Long Infusion Set Life. The U.S. Food and Drug Administration recommends changing these infusion sets every two or three days, according to approved guidelines and manufacturer standards. Please consult your medical professional for further questions. Thank you.

Friday, March 25, 2011

In The Words of My Endo

My day began with a clouded grey sky, chilling wind, and a mixture of flurries and freezing rain.

A day earlier, we hit a sunny 70 degrees in Indianapolis.

The fickle March weather perfectly describes how my Endo visit went on Thursday. One day back in December, the weather was great and my Christmas Endo visit revealed an A1C of 7.5 - down a whole percentage point from the start of that year.

But this recent visit, winter arrived and my diabetes management had gone chilly cold. To the point where my A1c jumped just as predicted, to a 7.9%.

Disappointing, but not at all surprising. A review of my Minimed Carelink blood sugar data the night before my visit affirmed what I'd already knew: that I have been slacking pretty hardcore lately in my D-Management. Only in range about 44% of the time and going High and Low. usually higher in the morning and evening with nearly picture-perfect BGs from 11a-7p.
Labwork from the day before proved conclusively that my thyroid level is low, affirming my suspicion that this is a key culprit in how I've been feeling lately - basically a tired and less social version of myself that is less passionate and productive than normal.

We had some discussion about relative medical and health topics, talked about my recent Funky Eye Exam where retinopathy came up, then we changed some basals and tried to examine why exactly I feel burnt out so often. One theory was that my recent three month trial run on a Loaner CGM gave me a lot of data and helped keep me attentive, but it also zapped my energy level with BG overload.

We talked about depression and burn out, I talked up the Diabetes Online Community and how it helps, and we agreed that it might help to talk to someone else. Like, for example: ANOTHER PWD, who happens to work in that very same office - a veteran Type 1 who works there as a diabetes educator. Though her CDE duties may involve basics, there's the simple D-Meetup and just regular talking and support that is possible. Maybe that will help me sort through this burn out, along with the thyroid improvement and more sleep and overall stress relief. So, I'm excited about!

In retrospect, there was a lot about this Endo visit that didn't go well. Not surprising, as I haven't been feeling all honkey dorey lately. This isn't the worst that I've seen, but it has felt like the kind of serious burn out that I haven't felt in a while. I've been angry with myself and those around me, and have felt selfish and focused on my own needs and wants. As a result, I've slacked on my overall care and that hasn't helped anyone.

I blamed myself, but my Endo's words came back and reassured me that there's a light at the end ahead:

"I'm not blaming or judging," she said. "We just need to figure out how to help make you as healthy as possible. We can do it."

That comment was assuring to me, transforming what felt like a mood of disappointment and blame into one of hope and progress for what's ahead. A guiding light that's so important, because it's the kind of support we need from our medical professionals as we navigate this lifelong ride.

Thursday, March 24, 2011

Find the Vein Game

Labwork is a necessary evil for those of us in the Diabetes Community.

While we all love to banter about our own vampire-like skills in blood tests, set or sensor insertions, and syringe stabs, our semi-regular visits to those other Vampires in lab settings are a whole different breed. I've shared the perpsective before of one Vampire Girl who's Better Than Edward Cullen, but as a followup I now offer my latest lab adventure where we got to play that game known as Find the Vein.

My fun came on Wednesday. Even though I've been meaning to take some time to get over to the lab to get that done, I procrastinated and didn't get around to it until a chance arose this week - the day before my nearing Endo appointment.

In the 4 years or so that I've been with this current Endo, my lab work sites have moved around a number of times - first in the adjacent hospital itself, then in a lab down the hall from her office, across the street at the same hospital once her office moved into a new building, on the first floor of her new building, now up one floor. They've all been pretty routine visits without much hassle, though the wait time has fluctuated based on location and time of day.

Being in my 27th year now of Living With Diabetes, I have noticed that during the past five or so that it's been more difficult to not only draw my blood but also to find my veins. I've heard others say they have always had that issue, but historically this was never a problem for me. I was the boy who grew into the guy with "good veins."

Or so it was. That's changed in recent years.

This new visit was the first time I'd gotten labwork done since the hospital implemented a new medical file system where all of the patient files are connected on the same system, no matter the location - "One Patient, One File" is what it's called. That certainly made the registration process easier than I recall it being. No insurance info was needed on her end, as it was all in the system - which should also prove to be interesting once it's all processed, as for the first time I've got insurance coverage that apparently fully covers all my regular lab work and diagnostic tests... We'll see whether that turns out to be accurate or not, but it didn't surface at that point in the lab.

After all the registration, we got going with the "pee in a cup" practice. As I'd been fasting for about 12 hours without food or coffee (and was a little cranky thanks to a nauseating High that morning...), we were then ready for Vampire Lady to suck a vial or two of red goodness from my body.

That's where the adventure truly began.

She couldn't find a vein. My left arm didn't look good to her after some poking and prodding, so we tried the right side. It was even worse, she told me. Back to the left side, she stabbed my arm and apologized - even though I hardly felt it and didn't grimace. No blood appeared. She moved the needle around, and found nothing. Pulling it out, no blood emerged.

"Did I miss," she asked rhetorically.

"No. My veins just don't like vampires," I replied with a smile.

"Well, they can't hide forever, can they? I'm pretty sure I can get one eventually..."

She tried my right arm, and had the same result.

"You have deep veins. Has anyone ever told you that?"

Nope, that was new. Can't say I'd heard that before. We went over the fact that I hadn't drank any coffee earlier or that I'd cut off my water supply - but were No responses.

Without any success, she started eying my hands. I pointed out that I didn't recall the last time I'd had a hand blood draw, but observed how my veins have become more reluctant through the years. That was a common thing for her, and she mentioned that she was only allowed to do three needle sticks unless a patient specifically consented that more were allowed. I gave her permission to do whatever was needed, but said we weren't going at my feet no matter what.

Turning to a butterfly needle, she set her sights on the top side of my left hand just below where my wedding ring rests. Apparently, it tried to run and hide. So she moved the needle to chase after it... "A-HA!" she proclaimed.

I took that as a good sign, released my fist, and within seconds saw the vial fill up with redness.

"See, it tried to run from the Vampire but couldn't escape," I said. We shared a laugh, then it was time to say goodbye.

In Vampire Lady's defense, she seemed to be qualified and not a Mindless Blood-Sucking Zombie like those I've encountered before. She appeared to know what she was doing, but was just foiled by my fussy veins. So I don't blame her at all, and she had a sense of humor about it where I've seen others get frustrated.

After leaving, I shared some of the fun on twitter and several fellow Diabetes Online Community members shared their own frustrations about playing the "Find The Vein" Game. One clever soul quipped, "That game is so draining." I couldn't help but laugh at that one as I left the building.

Actually, I'd be returning to that building the next morning to visit with my Endo - and I am not ancipating a Happy Time. I'm dreading the appointment and don't anticipate a good A1c result based on how I've been lately (the 7.5% result I got from Santa Endo Claus just before Christmas will likely be higher...), and hopefully the blood work will reveal all else is OK. (Though, I also suspect my thyroid results will be off, but that's a whole other story for different post). We'll see. At least the blood work will be processed quickly and be able to make it to my Endo's office one floor down - that's awesome!

Prize for playing
Find the Vein!

Leaving the lab and now able to deviate from my no-coffee drinking that morning, I decided to reward myself with a large (venti-sized) Starbucks coffee drink. Of course, I really didn't need to keep the bandage and gauze on my hand after a few minutes - but since I didn't have my camera handy during the labwork, I opted to keep it on just so I could score a photo of my needle-stabbed hand holding a well-deserved caffeinated beverage. Evidence, you know, to earn some dia-nerd points from the DOC.

So there it is - my latest round of Find the Vein, a game we all know and love to not love. Or make fun of. At least there's rewards at the end, and blog-worthy topics to write about! Have you played this game before, and what have your experiences with these Vampires been like? I'd love to hear your stories.

Wednesday, March 23, 2011

Traveling to D.C... and Back Again.

These posts are all scattered and swimming around aimlessly in my head, so you’re getting a glimpse of them in no logical order – just as they surface in my brain and translate into words on the screen. As you likely know, this is part of the continuing coverage of JDRF Government Day 2011 from several within the Diabetes Online Community.

Traveling with diabetes is always an adventure, one you never know quite what to expect until you’re there being all Johnny On The Spot at the airport or particular mode of transportation.

So was the case with my recent trip to Washington D.C., where I got to engage in some sweet diabetes advocacy on Capitol Hill.

This was my first plane ride since last summer, since the TSA imposed its pain in the ass new security protocols. I’d made sure that all of my medical supplies – syringes sealed in the bag, clearly labeled insulin bottle in box, pump and blood testing supplies – were all in one easy to find case that could be displayed and searched. A letter from my Endo dated that same month explained that I needed to tote all of these supplies with me in a carry-on, and I was ready to flash that at anyone raising an eyebrow about my carry-ons.

Nervous but feeling prepared, I arrived way early and was ready to go. The line was packed leading to the terminal security checkpoint, and some small chat with those waiting in line was pleasant enough.

Getting up to the conveyor belt, I undid my shoes and belt and took off the coat and put the laptop in its own bin. Then, I motioned for one of the blue-shirt TSA officials to alert them to my medical supplies and desire to not pass through any electronic-device-killing-metal-detector-or-body-scanner. Blue Shirt TSA Official 1 pointed to the side, and watched as my meter case with supplies was rummaged through and ultimately passed through the scanner. Then, a second Blue Shirt TSA official pointed me in the opposite direction. I didn’t know where I belonged, and felt myself wanting to step in both directions.

So, I did what anyone might do in that situation: I crossed my arms and stood there like a little child who wasn’t getting his way.

“Sir, you need to step through there for the scan,” a male TSA official instructed.

Obviously, he wasn’t aware of what his two other Blue Shirt TSA folks had already told me.

“I’m waiting for a pat-down, because I’ve already told two of your colleagues that I have an insulin pump and do not want your scanner to make my medical device malfunction. Tell me where to go.”

TSA official 3: “You can go through just fine, it doesn’t matter.”

“That’s not what I’ve been told by the company who sold me this device for thousands of dollars. If it breaks, I’ll be looking for you specifically to buy me a new one.”

He glared at me, and I really regretted opening my mouth and challenging his authority. I felt like the airport security was going to Taser or tackle me at any moment and lock me up for being a threat.. but luckily that didn't happen. TSA Lady 1 emerged out of nowhere and with a smile directed me to the place that she'd originally pointed me to before the other Blue Shirts got all confused.

I was happy to see her, but honestly it was like the Left Hand not talking to the Right Hand. I see why people get frustrated with the process.

Already, a line was forming behind me and I felt pressure to just dart through and run toward my gate with my arms waving above my head. But I thought twice, and TSA Lady 1 helped me move through to the glass-walled pat down box without incident.

A new TSA Official, this one a man wearing a White Shirt, appeared and took the lead. He told me to raise my hands, which I did. My license and boarding pass were still in my shirt pocket, and this apparently set off alarms and caused a fuss. I was scolded by TSA White Shirt for that, though I caught a smirk on his face as he said that.

But he was pretty familiar with the insulin pump. I had to hold it in my hand above my head as my hands were raised, and at that point I was very thankful for wearing long infusion set tubing that day. He asked where my site was, and I pointed and he gently felt around the spot on my abdomen. But he wasn’t as familiar with the whole CGM component, so asked questions about what it did and where it was located. He asked that I roll my sleeve up so he could inspect the arm-sensor, which I happily did while explaining the transmitter and CGM graphs for him.

He seemed impressed.

“Well, that’s cool! Certainly better than all those finger pricks,” he said about the CGM. I smiled, deciding it wasn’t worth going into the whole “CGMs don’t replace BG tests because of accuracy issues” point.

Other than that, the pat-down was no hassle at all and I got to educate a little while going through it all.

Of course, the security spectacle raised the awareness of some of my fellow airline travelers that day, too.

As I made my way back to the pick-up-your-crap from the bins area, a curious woman approached me with excitement in her eyes.

“Does that happen to you every time you fly with your insulin pump?” she asked.

“Not always just like that, but this is the first time I’ve flown since the TSA put all the new security in place. “It wasn’t as bad as I thought it might be.”

“I saw you had an insulin pump, and I’ve been thinking about one of those myself,” she proclaimed.

Oh really!!! Ah, the connecting power of diabetes!

This woman was traveling with her husband to Florida, and we struck up a conversation immediately as he put his shoes back on nearby.She’d been diabetic for four years, and had just gone onto insulin at some point late last year. Her numbers have been “all over the place” she said, and she’s been talking with her doctor about going on a pump for better control. We talked about the features and the CGM component, and I told her what I thought about it. Then, I gave her my contact information to keep in touch if she wanted to.

After all of this, my next stop was the Starbucks – which was logically placed on the opposite end of the terminal from where my gate was located. So, I trucked my baggage along and secured a Grand Latte, then settled down into a seat and read some Tweets to pass the time before boarding.

The flight brought even another D-Connection, as it turned out the woman sitting next to me has a nephew in his 50s who’s been diabetic for a decade or so. She was traveling beyond D.C. to a Christian conference, and she was very interested when I started telling her about where I was heading for the JDRF Government Day. But she knew absolutely nothing about diabetes, including that there were two types – so it was a nice little time to help educate her a little. We talked about faith, family, jobs, life, and diabetes – and even showed off my CGM graph with a 162 test. A great way to pass the 90 minute flight into the nation’s capital.

The way back from D.C. wasn’t anything to write home about. With a later evening flight, I arrived way earlier that I needed and was able to pass pretty uneventfully through security. One guy looked at me and smiled as I held up my insulin pump, saying that “the pump is all clear.” I’m sure, being as they are all professional high-level security experts, the TSA guys quickly assessed my risk level and determined that neither I nor my insulin pump was a concern.

Airports aside, the D.C. Travel Adventures were just as eventful.

Journeying to multiple Congressional buildings on Capitol Hill, it was a crap shoot for when my pump might trigger the alarm and when it wouldn’t. From memory, I think I made it through without issue while going into the House buildings, but the Senate side was trickier to navigate. They were all pretty aware of what an insulin pump was, maybe because they see it so often or maybe there was some mass alert that a whole bunch of Diabetes Advocates would be hitting the Hill those days. Who knows. But as someone who regularly passes through all levels of courthouse security, this was no concern for me.

Then there was the transportation itself in D.C., which made me nervous and was its own part of the JDRF Government Day presentation with slides and maps and specific instructions. I'm sure that I'd get lost at some point, going Low and wandering aimlessly through the streets of D.C and stumbling into some secret government meeting I wasn't supposed to know about.

But all would be OK, I decided, since I'd be with other fellow D-Advocates. (insert head-shaking laugh here).

Being one of only two advocates from Indiana attending all the meetings, I found myself traveling solo a couple times. The Metro had already tried to eat my daily passes without letting me pass normally, and at one point among a group of others that I contemplated hopping the gate and escaping to keep up with my fellow Advocates. But that wasn't needed and I was finally able to pass.

But on my afternoon Metro trip back from Capitol Hill one day, I found myself solo in catching the ride back and learned a valuable lesson: The Metro does, in fact, go in more than one direction. Walking up to where I needed to wait, I overheard someone mention college basketball and the matchup between Oakland and Texas…. “Oakland – what is that, like the one in California?” this man asked his friend. Being a proud graduate of Oakland University in Rochester, Michigan who knew well my alma mater was set to duel Texas later that week, I jumped into the conversation without thinking and educated the D.C. Metro-Riders on which Oakland they needed to be concerned about.

Unfortunately, while talking basketball, I managed to forget to pay attention to which of the Blue Line Metro Trains I was actually boarding when it pulled up and ended up en route the wrong way. Discovering this a few stops into the ride, I rode on and Tweeted about my confusion before turning myself around and getting back in the right direction. Sadly, I was late in arriving to the Cupcake Challenge Dinner event, but at least I was able to make it there in one piece to enjoy some cupcakes and good company!

Overall while in D.C. , there was little time to sight see but I managed to at least get a few photos in front of the Capitol Building and Supreme Court and even the Library of Congress – the latter which I walked through briefly after my legislative meetings were wrapped up! Did a blood test out front and it was 70, so I sat on the library steps and ate a cookie from the hotel snack shop. Then, it was time to get back and prep for the journey home to Indy…

For Disclosure Purposes, I should probably also mention that these Tales of My Travel Adventures shouldn't be interpreted to say anything about the fact that they were generously paid for by the JDRF. As was my lodging and some meal expenses during this four-day event. I'd be willing to bet that didn't influence the security protocols or experiences I had while traveling... Though, I am thankful that I managed to not raise any serious red flags in airports, Metro stations, or Capitol Hill landmarks.

Monday, March 21, 2011

Doing Our Part

Our Diabetes Online Community is a powerful voice, and we're at a time when we all need to do our part in raising our voice to help keep diabetes research moving forward.

This is our chance to make sure that what we've achieved in recent years doesn't get sucked into a black hole of bureaucratic inactivty - a.k.a. the FDA.

The ever-slow government agency that reviews medical devices and treatment possibilities is in need of attention, specifically because it's got on its radar important research such as the Artificial Pancreas Project that is a "closed loop system" us diabetics have long dreamed of (short of a cure). At this point, the project has been successfully within hospital settings but it now needs to move into the clinical trials outside of the hospitals - to where the "real people" are able to use them in every day life. This will help research the safety and efficacy of this treatment option, which not only would be a step forward in treating diabetes but also could set the stage for cure advancements.

But the FDA doesn't have any guidance for how that happens in outpatient settings, and that's what is needed now. The longer it takes the FDA to approve these guidelines, the longer people have to wait for this Artificial Pancreas to become available.

Hoping to help speed that guideline-setting process along, the JDRF has worked with experts in the field to create a draft document that would set expectations and provide a pathway for research and development. The FDA needs to review that and maybe tweak it some, then get it out for public comment so that everyone can voice their opinions on it.

But there's a danger that this draft guideline document could fall into that FDA blackhole, getting swept aside and essentially putting the brakes on the years artificial pancreas project research already underway.

That's where Congress comes in. The FDA doesn't like being pressured by unhappy lawmakers, and so having them sign on to a letter urging review might make the FDA folk more willing to do what's needed. Many eyes are watching this, according to those at the top JDRF Advocacy levels.

Another imporant aspect is the federal funding for diabetes that's funnelled through the National Institutes of Health - specifically the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) that uses the money for critical research in genetics, environmental triggers, immune therapies, diabetic retinopathy, and the artificial pancreas.

With 109 new members of Congress and those veteran lawmakers facing tougher budget-tightening pressure these days, our Diabetes Community advocacy is so incredibly important. It's important to use our collective voices to not only tell our stories, but urge these elected leaders not to cut funding or let research fall by the waste-side at a time they're making critical fiscal decisions.

Both the ADA and JDRF made their way to Capitol Hill this month, with hundreds of advocates setting up meetings with Congressional members and office staff to tell our own D-stories and why this research and funding is so incredibly important.

I participated for the first time in JDRF Government Day, and had an incredible time being a part of that. More than 500 meetings were held during a two-day stretch, and I had the chance to meet with staff members for the 11 elected leaders representing Indiana - including quick-meetings with two who were in their offices. Most were receptive and interested in hearing the personal stories of living with diabetes and why this research and funding is so important to us. I urged them to keep in mind that we're not asking for money, just that we want the FDA to not let this continuing research get lost in that black hole so that it stalls and doesn't move forward.

I talked about how Lows mean I might not wake up in the morning, how research has gotten us to a point where retinopathy can be reversed, and what the lines on my CGM really mean. Even did a few blood tests while sitting there talking, and that certainly caught their attention!

For the more fiscally-conservative members, I added a fun little line that came to mind: "I'm lucky enough to have a job to pay for some of this, but my pancreas is still unemployed... and that unemployment line is growing."

Others who advocated have shared their stories, saying some agreed and others were at least excited to hear some of our personal D-Life stories.

That advocacy continues now nationwide, at the local level. The national JDRF Grass Roots Advocacy office wants to set up local meetings with new Congress members to help spread word about all of this. They're committed to meeting with at least 60% of these newly-elected members by June 30, 2011. So far, they've met with 20%.

We can help.

Both the ADA and JDRF are great ways to help out, but you can just do this on your own as a constituent who happens to Live With Diabetes or as someone touched by this chronic condition.

• Sign up to be an advocate with the JDRF or with the ADA. You can also text the word "ACTION" to 56333 to get on board with the JDRF advocacy efforts.
• For the JDRF, you can do what I've done in the past and sign up to participate in the Promise to Remember Me Campaign, which launches in August and will connect with you with other area advocates connecting with Congress members at the local level. You may recall that I took part in this during 2010 and had a great time connecting with lawmakers representing Indiana.
Contact your Congress members, telling your story and why this is important to you. Say “Thank you” if they've been around and voted to extend the Special Diabetes Program in late 2010, and urge all members to sign the letter to the FDA. You can also ask them to take part in the informational group known as the Diabetes Caucus, on either the House or Senate side.

Together, we can all make a difference. Stand up. Use your voice. Please. It's important, and we each have the power to make this happen.

Wednesday, March 16, 2011

Not Forgotten Anymore

This post was written on a notepad while sitting in the Washington D.C. airport, waiting for a late-night flight home from an incredible JDRF Government Day 2011 experience. My laptop wouldn't connect online and my Blackberry had one battery bar left. And that doesn't even take into acount that my feet are worn from Capitol Hill advocating, my mind is beyond exhausted and I can't even think straight to formulate a coherent thought. But I want to at least get some initial thoughts out while they're still fresh in my head. So many feelings and tidbits are swimming around in the overflowing sink inside my head, and I want to take some time to reflect and write about them in the weeks ahead. Not to mention get some real, continuous sleep... In the meantime, it needs to be said: Thank you, JDRF, for making me a part of this and more importantly for what you are doing for the entire D-Community.
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As an adult living with Type 1 diabetes, I am not forgotten.

Not anymore.

Without a doubt, that's the clearest message and feeling I’ve taken away from the incredible experience that is JDRF Government Day 2011. During the past four days, I've laughed and cried and been silent and vocal. Absorbing so much information and so many emotions that it hurts.

Opinions can differ on how and why some may have felt "forgotten" and passions can ignite over the idea, but the past is past. Regardless of how or when things came to be this way for myself as a member of the Adult Type 1 population things have changed and they are continuing to change as far as what the JDRF is and does. Even if the message may still center on kids and the name includes the word “Juvenile” at its beginning, I know that adults are a part of the focus and this organization is being inclusive in the mission for all of us.

That is, at the national level. And some scattered chapters throughout the country.

But many still don’t embrace this with the same fervor that I witnessed in Washington D.C. during the past four days, and what has been represented by the newest CEO of the organization – Mr. Jeffrey Brewer, a Diabetic Dad whose then 7-year old son was diagnosed in 2002. The DOC contingent sat in the same room with him and asked questions, and saw him answer truthfully, candidly, without anyone reviewing his words before they were spoken. This man “gets it.” He's down to earth and realistic, smart, and so incredibly full of passion.

So much so, that one incredible nugget came from an awards dinner on the first night of the event: The JDRF will be unveiling a new tagline. For as long as I remember, I recall the tagline being exactly or resembling something as it is now – Dedicated to Finding a Cure… It's simple and straightforward, but doesn't reflect the complexities that everyone now sees existing. There's more to it than just being a champion for some vague notion of a "cure," and the JDRF is now making that more of its message as we move forward. Nothing has been abandoned, just expanded. The tagline is going to expand and be more inclusive, to show that there’s more to treating and curing diabetes and the JDRF mission than just funneling money and marketing children.

Sitting through scientific sessions where incredibly complex information was boiled down into layman terms and PowerPoint presentations made me see that we are moving toward this. In ways that have never before been possible. It feels real to me, and by recognizing that I can contribute to this overall discussion about cure research the JDRF is doing something I don’t see as happening before.

I'm excited about the JDRF and research and everything going on. Yes, I see hope. Now, the challenge is bringing everyone together and engaging the Diabetes Community to focus our energies and perspectives in ways that can help us move toward that goal. We’re all in this together.

We can all advocate, share our stories, and help connect each other as part of a bigger picture - living successfully while we do what's necessary to stop this diabetes once and for all.

Disclosure: What's said is from the own internal craziness of my own mind and heart. The JDRF didn't ask me to write anything about this trip, and it has no influence on what I write here. The fact that they paid for travel, hotel, meals, and some expenses has no bearing on my blog (except for part of my gratitude of offering me that chance to be involved).

Friday, March 11, 2011

DC Squared

What do you get when you put part of the Diabetes Community in the District of Columbia?

No, the answer is not as simple as a chicken crossing the road, why lancets are blunt, or why Sprinkles the Unicorn lept over the sprinkled cupcake. No.

Specifically, the answer is most notably: the upcoming scene in Washington D.C. where hundreds of members of the Diabetes Community will gather, along with a handful of DOC advocates, to advocate for the cause and meet with members of Congress about diabetes issues and funding.

You might say it's DC to the Second Power, DC Squared. :)

There may or may not be sightings of Sprinkles the Unicorn, and it's rumored that some BluntLancet members and groupie Lanceters might be jammed in front of the Pentagon and with Abe Lincoln grooving nearby. I am not entirely convinced that D.C. is ready for this, or the universe for that matter...

But kidding aside. The next 4 days are bigger than that fun. It's about the entire Diabetes Community and beyond, and YOU are a part of that. Let me explain why.

This is the JDRF's annual Government Day, where about 150 advocates from all across the country gather in D.C. to network and advocate. This runs Saturday through Tuesday, and is a mix of advocacy training, research update, networking, and celebration of the organization's entire Advocacy Program. Then on Monday and Tuesday, we all descend upon Capitol Hill where we'll meet in Congressional offices with lawmakers and staffers. To tell our stories. To let them know what their votes and politics mean to our lives, and what we hope they will do in representing us. This is particularly important now, as Congress fiercely debates budget priorities and how much can be cut. Our voices can be important to letting these elected leaders know that diabetes funding isn't a place to cut, but to continue supporting.

This also follows this past week when the American Diabetes Association did it's own version of this called Call To Congress, and hundreds of advocates descended upon D.C. to do much of the same advocacy. Both overlap on Saturday, so some of us are all meeting up before they leave and we get moving on the JDRF agenda!

But even more broadly than the Congressional component, there's what the JDRF is doing to include more of the Adult Type 1s and broader Diabetes Online Community in these efforts and more generally. The JDRF has graciously invited a handful of us from the DOC to share our perspectives on what we can all do to work together. They are interested in hearing our ideas and feedback, and what it means to have our perceptions as Adults with Diabetes a part of the discussion.

I haven't been a part of something like this before, but am uber-excited about it. Not only do I get to see some very cool people who I consider good friends, but also a part of something so much bigger. Plus, it's in DC - which is cool, because I love the city and haven't been but on an 8th grade class trip and then a newspaper conference in my college years. On the Diabetes Front, this is incredibly awesome because the JDRF is pushing a renewed focus on including more of the Adult Diabetes Community into what it does.

In the past, I have written about my own frustrations with the JDRF over the years because it feels as though it stopped caring about me once I turned 18. It's a common theme echoed by many Adult Type 1s - that we are "forgotten" because we're no longer the kids that the parents founded the organization have largely been focused on. It just seemed they weren't "personally invested in us" and didn't seem interested in our perspectives, just wanted us to fund-raise or bring in more people to donate to a walk.

But that's changed in recent years, both nationally and with what I've seen here in Indiana with more outreach to the adult diabetic community. So this is another step in the right direction to continue that investment and discussion, as far as I'm concerned. I'm very excited that finally I feel as though the JDRF is reaching out to make Adult Type 1s feel as though we are important in all of this, and that the organization wants to be Personally Invested in what we want, too. That we are a part of this community and have a powerful voice, together.

There are nine of us DOCers attending: Allison Blass, Scott Johnson, Kelly Kunik,  Kelly Rawlings, Cherise Shockley, Kerri Morrone Sparling, Scott Strange, and Kim Vlasnick (plus ME!). We're having the round table discussion at 2:15 p.m. EST on Sunday. You can tune in and watch it live and participate in a few ways:
  • Submit questions via Twitter to the JDRF Advocacy staff (@JDRFAdvocacy), and follow along with those who are attending the event by watching the hashtag #JDRFGovDay.
  • Stop on by the JDRF Advocacy's Facebook page to check out updates and photos, and use that to submit questions or be a part of the discussion.
  • Watch the live webcast of our round table discussion, courtesy of the JDRF Advocacy USTREAM Channel 
This is where YOU come in, because you're just as much a part of this as anyone there. So, please: What's important to you? What do you want mentioned about what our community needs or wants as far as diabetes advocacy, or even just from the JDRF in general? What else can the JDRF do in order to engage and help the entire Diabetes Community? Please let me know in the comments section below, and make sure to check out the rest of the blogosphere as others share their thoughts on all of this. 

Disclosure: JDRF is covering the costs of my flight, hotel, and a few meals during the course of this event. I'm attending not only as a member of the DOC, but also on behalf of my JDRF chapter here in Indiana where I'm on the local Grassroots Advocacy committee. So myself and the committee chair are both attending, and we're ready to head to all 11 of our elected leaders' offices as well as be a part of the rest of this JDRF discussion. I'd received an invite from my local committee chair late last year and was already planning to attend when this DOC-component surfaced, and so that's likely how I got attached to it. However, none of this means the JDRF is influencing anything I write here now or down the road. They haven't asked that I blog about anything, and they have no control over what appears here. 

So, there is it. Let the DC rock in DC, and we'll see if the universe can keep up..

Thursday, March 10, 2011

Chuck Norris and My Diabetes

This month marks my diaversary, or my diabetes-diagnosis anniversary.

Or so I've decided for myself. This is a self-designated diaversary because the actual date in 1984 when I was diagnosed has been lost in time. We didn't catalog the exact date and any diagnosis records from Children's Hospital of Michigan in Detroit have long since been destroyed. However, we know it came on the heels of my birthday following my maternal grandfather's death in late January that year.

Back in 2010, I made an executive decision that March 10 was going to be the actual dia-versary for me based on my receipt of a replacement Paradigm 722 pump swapped for the one pervious one that got a case of "mass battery suckage" and needed to be put down. So, with the arrival of my new pump - dubbed Bacon Gibbs - it seemed like a perfect anniversary gift to mark the diaversary from then on.

But what I didn't realize when self-designating this as my "diabetes day" and what makes this even cooler is the fact that March 10 isn't only my diaversary... it doubles as THE BIRTHDAY OF CHUCK NORRIS! You know, the guy the galaxy knows as Walker, Texas Ranger!!!

How awesome is this. Seriously. I must credit a good DOC chum Martin for pointing out this historical date to me, and to the others who chimed in with wise cracks such as "Was it Chuck who roundhouse-kicked your pancreas into the diabetes world." So true. I'm floored by this, and think it's cooler than... well, I don't know. Cooler than anything I can think of right now.

You see, Chuck Norris is somewhat of a force not only in Texas Ranger Land, but also in diabetes land... kind of like the mythical unicorns, in a sense. Mentioned periodically, strategically, like in clever posts such as this one by Kerri over at Six Until Me. Just good stuff, all around. We do enjoy our humor, us diabetics.

Anyhow... Moving on to the point. Looking back, the year when diabetes entered my life had Ronald Reagan leading our nation, and welcomed movie classics like Terminator, Ghostbusters, Karate Kid, Temple of Doom, and Sixteen Candles. Of course, it was also a month when the NFL's Baltimore Colts packed up trucks and moved to Indianapolis in the middle of the night.

My Diagnosis Tale: An overnight visit to the paternal grandparents' home wasn't uncommon, as I was the first grandson and had many spoils as a result of their love. But the unfolding of events that day were anything but common, at least up to that point in my life. Awake often during the night. Excessive thirst. Frequent bathroom trips. Moodiness (for a 5-year-old). My grandparents explained these symptoms to my parents, who instantly knew there was a problem - as my mom has been a Type 1 since she's been 5.

Urine tests, which were mostly all that was available at the time, showed results that were very high. A quick visit to the pediatrician's office had that doc pointing to diabetes, but him wanting to send me for blood tests and admission at Children's. My mom recalls standing in the hallway crying, and having a staff member at this doctor's office saying to her, "Don’t worry, it’s not that bad.” Her response: “You obviously don’t know what is involved in this or what it is, or you wouldn’t have the nerve to say that to me.”

Once at Children's, tests confirmed the suspicions and I stayed there for three days, since I'd been diagnosed early in the "honeymoon" phase and since my parents already knew most of what they were instructing - diet, injections, other management aspects.

Once out of the hospital, memories aren't many as I was so young. There's one I do remember, and I've cataloged in my mind as: "My first injection." This may not be the case, but it's good enough for me as that's how I recall it. At this time, I was sitting on the couch in my grandparents' house and refused to let it come near me. There was an orange. Their Brittanies (family dog) were present. I didn't want the shot. But, ultimately, the reality prevailed and I ended up with my pants down and the needle going into the behind. The first of many injections, which would last for almost two decades until the time when an insulin pump came into my life back in 2001.

So here we are. Many years later. Hope there are many more to come. However many more I've got on tap, I promise to rock them Chuck Norris style and roundhouse kick them like a champ.

Wednesday, March 9, 2011

Not Quite Nolan Ryan

Baseball season is nearly upon us, so I find it timely to write a baseball-themed post - with a diabetes twist, of course.

Lately, it feels as if I’ve been swinging away and too often striking out. When I manage to make contact with the proverbial pitch coming my way, I'm either swinging too early or late. Even if it's in my strike zone, my performance at the plate isn't getting the desired results - leading to a Low-ball or blundered Bunt to an infielder for a quick out, or High Fly to someone for an easy catch.

I'm not trying to be a clutch Designated Hitter slamming it out of the ballpark or anything. I just want a little consistency in the results I'm generating for myself and the entire team. In a way, I've been pushing for some versatility as a D-Player: not only striving to score a home run or grandslam A1C, but also being able to play the rest of the field skillfully with RBI blood sugars based on exercise and stellar carb counting.

The nearing three-month Endo Appointment in mid-March is getting very close, and I'm just afraid my averages aren't where they should be and that might make her want to trade me in for a better ranked player.

Trying to avoid that higher A1C shame that exists only in our own mind, I've been trying my best. With the help of an on-loan Minimed 523 CGM, who I’ve dubbed Larry The Loaner, I've been most recently going for a No-Hitter.

As described by Kerri in her most recent Diabetes Terms of Endearment edition, a No-Hitter is: "A time period in which a diabetic does not hit their high or low threshold on their CGM. For a Dexcom user, they must be without any alarms during the entire day, and the day must be at least 24 hours. A diabetic who prevents their blood sugars from reaching a threshold is said to have "bolused a no-hitter." Sadly, I’ve struck out on this lately and haven’t gotten a base hit. Or so it seems.

While missing a planned No-Hitter can be frustrating in itself, what's even more annoying is when I KNOW I've bolused a No-Hitter  – but the CGM tries to tell me otherwise. It’s like revising the scorecard, even though I know that I ran across home base and have evidence (blood meter logs) to prove it.

For example: One recent day during a 24-hour period, I achieved what I self-describe as nearly "perfect" BGs. My CGM line was in range (70-200) all day, except for one reading mid-day that told me I'd hit 216 mg/dL. But a meter confirmation showed that wasn't the case, my actual reading was somewhere closer to 168. All the rest throughout the day where I'd confirmed were below the 150 vicinity. So, do I let that one CGM reading spoil my "No Hitter" for the day, despite knowing it was a false result?

I believe this was a successful No Hitter, and that's how I'm going with it.

The same happened the following day, when a 207 on Larry The Loaner CGM was countered by a 182 on the OneTouchUltraLink. A second No Hitter, in my book.

What do you think? Do they count as No Hitters?

If they're considered valid No Hitters, that's two in the course of a week and the only two I'd bolused recently. Not sure if that's a record or not, and really have no way of knowing as most old-school logbook data has been destroyed and I'm just too lazy to research my Carelink database online at the moment.

In Major League Baseball, former pitcher Nolan Ryan holds the record with seven No-Hitters during his 27-year career between 66 and 93. Topping the great Sandy Koufax, who had four between 62-65.

During my own 27-year D-Career so far, I’ve certainly had some No-Hitters before and been able to have an occasional perfect game here and there. I may not be a Nolan Ryan, but I've dug my cleats into the dirt and am trying to play the best game of D-Ball that I can.

So it is, Life With Diabetes. Just as in baseball. And so, with baseball season basically upon us before the official Opening Day on March 31, I’m hoping that my Spring Training will pay off and that I will score those No-Hitters that I’ve been pushing for. And that, come mid-March, Coach Endo sees how hard I've been working and thinks I'm worthy for some post-season action!

(We'll also enter here a plug for the Detroit Tiger, who I hope will rock this season and make it to October!).

Batter up.

Monday, March 7, 2011

Funky Eye Syndrome

Nearly two years.

That is how long it's been since my last visit to Dr. Funky Eye, the trusted optical consultant who works at the Indiana Eye Clinic a couple miles from my home.

It was in August 2009, just about the time I've always visited my eye doctor through the years (start of school time, even though I've been out of school for a decade). Anyhow, I had planned a visit about the same time in 2010 but insurance changes took Dr. Funky Eye out of my network - so that he couldn't do my advanced eye exam, only my regular vision testing. We decided to find a new person, but that took longer than planned and eventually our vision insurance was elevated to a higher level so that Dr. Funky Eye was back in the network.

This was late last year, and I just hadn't gotten around to making a new appointment. One was scheduled for early February, but the Indy Icepocalypse shut everything down for a couple days and so my appointment was rescheduled. For now. It was time to get my Eye Funk on.

Insurance coverage all checked out, at least that's what I was led to believe, and the appointment was underway. I'm not a fan of doctor's office paperwork, but didn't object because of the 19-month lapse in visit and basically filled out all my medical information as I'd done in the past. Just on new forms.

Those traditional vision test routines began and I noticed that the Eye Pressure Tester had big blue circle lights shining in my eyes - they reminded me of the World Diabetes Day logo. More vision tests ensued, and I was made to feel stupid by not being able to read the lowest line - you know, the letters in a row that all seem to resemble a 2 or Z, a 5 or S, or maybe a C or G. Then the guessing game of what lens looks better, 1 or 2? I'm always guessing, because I'm as blind as a bat and they all look the same to me. Red Shirt Eye Assistant asked me what my last blood sugar was this morning, and seemed surprised that I'd done one just before my appointment began at 2 p.m. She seemed concerned that I responded with a 76 mg/dL, but took my word that was all OK. I also sensed some judgement when telling her my last A1c in December was 7.5, even though that was much lower than the last time I'd been there to visit. But, she wrote both down and left the room.

The wait began for the dialation drops to cloud my vision, so I sat alone in the room with the big vision machines hanging from the ceiling and chart on the wall detailing the basics of diabetic retinopathy. Fortunately, the DOC Twitter-verse kept me company and helped pass the time.

Dr. Funky Eye arrived in the room, we exchanged pleasantries about how long it'd been and that I hadn't noticed any changes vision-wise. He shined "brighter than the sun" lights into my eye, and we went through the process that I told him felt like "Eyeball Gymnastics." That brought a laugh, and he finished up.

"Well, your retinas look good..." Dr. Funky Eye said.

I smiled, as the breath I'd been holding for forever was finally released.

"... so far," he quipped.

My relief went away, and the anxiety returned.

A few more matches of Eyeball Gymnastics gave him some insight behind said eyeballs, and he sat back and scribbled some notes in my file. Even though it was mere seconds, the anticipation was killing me. Finally, Dr. Funky Eye spoke.

"There's some retinopathy building up in both eyes." He flipped through my chart to notes about the August 2009 visit. "A little more than the last time."

My heart caved in, and I felt the tears building up behind closed doors, ready to spring.

For the record, this isn't the first mention of retinopathy I've had. Dr. Funky Eye mentioned it for the first time a few years ago (2007, I believe) and it was the earliest, most minimal signs. I got my BGs under better control and did better with D-Management and a later visit found the retinopathy had basically reversed itself, and all appeared good in the eye world once again. My last visit in 2009 showed it had returned slightly, and despite my better control, this is the follow-up to that.

Dr. Funky Eye interjected, "But it's still mild. And just like before, the best thing you can do is just make sure your blood sugars stay as good as possible. Your A1C is a little high, so we need to work on that."

There was no use in arguing, defending how I've been trying to lower my BG averages and push for a lower A1c. That my A1c had dropped from the 8s to the 7s since the last time I'd seen him, or that I'm trial-testing a CGM to help get a better handle on trends. He didn't need to know all of that, because he was correct in making the point: My A1c is still too high. So that needs to be addressed.

One thing that's pertinent is that the glucoastering with Lows and Highs could be playing games with my retinas and optical nerves and stressing them out, and so working on leveling out my BGs is a priority. This was a thought in my mind at the moment as he was talking, one I didn't share because it's really more of a discussion point for my upcoming Endo visit.

I just nodded in understanding of what he was saying.

Dr Funky Eye continued, adding something about some protein was still building up. Nothing big there, just a note about not wearing my contacts as much. Maybe some eye drops. And then there was the Vision Pressure Test (that resembles WDD logos).

"Your eye pressure is a little higher than it should be, and that means you're above the Glaucoma Risk level," he said. "We don't know what that means or if there's glaucoma, but we'll have to do some more tests and see."

Basically, the channels that drain the fluid from inside my eyes are blocked or not draining properly, and more of that said fluid builds up and raises the pressure. This can damage the nerves and eye vessels, already tapped thanks to the retinopathy. This could be caused in part by diabetes, or have nothing at all to do with it, Dr. Funky Eye said. The tests a month or so out will determine where we are, and whether some special eye drops or anything else might be needed - or whether even more improved BGs might whip the inner eye workings into better control.

"Oh. Great," I said. "So what's the bad news?"
Dr. Funky Eye wrote an Rx for eye glasses and contact lenses changes, and we talked about a new visit in about four weeks. So, that's where we stand. With 27 years of Living With Diabetes, this is where we are at. I can see all the wonderful things in life, and the wonder and awesomeness of that can't be appreciated enough.

So, at this point, there's a whole bunch to be positive about. Sure, there's some negative that goes with it all, but you can't live your life being confined or paralyzed by the negative. A good friend and fellow D-Blogger who experienced a "one in a million" thing (totally unconnected to diabetes) has taught me what strength and positive attitude is all about, so I try to take some guidance fom that.

So I move on. Living at the moment with Funky Eye Syndrome.

And, for better or worse, I'm able to see the wonderous insurance paperwork on this Funky Eye visit that I'm sure will bless my mailbox before long... On second though, maybe it'd be better to be blind. Geez.

Friday, March 4, 2011

The King of Diabetes Rock N' Roll

Those of us in the Diabetes Online Community are music lovers, and we're loyal followers of the magical musical phenomenon known as BluntLancet. (#BluntLancet, for those Lanceters on Twitter). We've come to know the story Behind The Music and even learned of some hidden lost albums of those years long past and rumored new releases on tap.

But a recent episode of Lows in my own D-Life revealed the makings of a truly epic Blunt Lancet secret, a golden nugget that can only be described as a secret that the world would marvel at. It may very well be destiny or will of the Diabetes Gods who made this revelation happen with the help of a Low Blood Sugar.

It started with the classic symptoms: shaky limbs, falling body temperature, blurry vision, sweating and shivering. Getting lost on the way to the vending machine, and trying to be all "professional" in the workplace, I went back to my desk and started munching on glucose tabs as some musical vibes entered the mind:

(Cue background music of Elvis Presley's All Shook Up..)

“My hands are shaky and my knees are weak.
I can't seem to stand on my own two feet.
What do you think when you have such luck?
I’m in a Low... (tongue click)
I’m All Shook Up."

Eating some vending machine snacks while sitting at my desk, my toe kept tapping to the beat that was still playing in my head.

"I'm a little mixed up, but I'm feelin' fine..."

Actually, not quite yet.

“My tongue gets tied when I try to speak
My insides shake like a leaf on a tree.
There's only one cure for this body of mine
And that's a snack of the sugary kind.”

Gradually, I could feel my BGs rising - and that kicked me into the next tune, Burning Love:

"Lord Almighty,
I feel my BGs rising
Higher higher
Burning through to my soul
Carbs carbs carbs you're gonna set me on fire.
My CGM's flaming
Doesn't know which way to go.

Oooo ooo ooo
I'm still a rising
Way above, one hundred and nine."

Within a couple hours, my Minimed CGM began displaying clear evidence that a High BG was stepping on my Blue Suede Shoes. It proclaimed "High Predicted" on several occasions, even though my One Touch UltraLink disagreed. The 200s and Above really weren't higher than the mid-100s or so, though the Up Arrows indicated an upward rise.

Hmmm.... (cue Suspicious Minds):

"We're caught in a trap
But I can't walk out.
Because I love you too much, CGM.
Why can't you see
What you're doing to me
When I don't believe a word you say?
We can't go on together
With suspicious minds
And we can't build our dreams
On suspicious minds."

Yes, Larry the Loaner CGM - you're Always On My Mind. But please, Don't Be Cruel. Just Love Me Tender. But no. We're navigating the narrowing roads In the Ghetto, and frankly, sir, You Aint Nothin But a Hound Dog. If you don't behave, I'll have to Return To Sender your CGMing.

I thought to myself, "Boy, these would be good tunes for Blunt Lancet..."

Suddenly, it all clicked into place. These hits sounded very similiar to what the world eventually came to know in the 90s as Blunt Lancet, but what if they'd been around long before that. What if... there was truly a relationship between these BGs and musical lyrics jiving through my mind?

Immediately, I went into intrepid reporter mode. Determined to find evidence, I turned to Google. Quickly, the answers began pouring in.

As some have claimed, Elvis may have been a member of our Diabetes Community. Possibly a Type 2. Medical evidence doesn't counter or confirm this, so there is one potential clue. Not to be confused with Elvis, The Diabetic Cat. No, the real rocker. Sure, we know of B.B. King and Stevie Wonder and Bret Michaels and our own Ninjabetic, but to have the King of Rock N' Roll within our ranks... Wow. Then, there was evidence that he is in fact still alive - 880,000 hits on Google to "Elvis is alive." Clearly, it's not that unheard of like those ridiculous claims about UFO sitings, Area 51, aliens building the pyramids, and cinnamon curing chronic conditions. The online reports appear to show that The King IS alive, and that he may have even evolved into a rockn' D-Blogger through the years! One site claims he actually lived 16 more years and that diabetes took him out in 1993, while others "report" that he's still alive.

Based on that research, the question becomes: what if he didn't really die in 1977 as everyone believes, but instead faked his own death and instead went underground to become The King of Diabetes Rock N' Roll? He transformed the hits he'd had in his own legendary musical career into early albums such as Always on my D-Mind, Suspicious CGMs, Blue BGs in Hawaii, Viva La Diabetes? Pot Luck Meals We CAN Eat, and Jailhouse D-Police.
One quick sighting of The D-King
over at The Diabetic's Corner Booth.

Tunes that would never be released publicly, but stored for more than a decade until discovered and used to usher in the next generation of D-Music?

Was Elvis the true inspiration and "creator" of BluntLancet, doing so in the days long before even Logbook and those early names were a glimmer in the DOC's eye?

We may never really know. Maybe he really did go underground, living in the labrynths that snake below Graceland like tangled pump tubing under our clothes. There, he not only created the flip sides to his albums but also managed his own diabetes as was possible in those days, before one day hearing on the radio waves a demo of a new band called Logbook that could carry on his musical genious. Could it be, that the King of Rock N' Roll may have also been the King of D-Rock N' Roll?

Without that clear answer, maybe I'll never know whether those tunes were a simple Low-induced mirage of my own mind. An imaginary back story to the BluntLancet back story. Maybe, just maybe, it was destiny for those lyrics to be stumming the guitar in my mind. So that the true evolution story of #BluntLancet could be told.