Monday, February 28, 2011

Living A 'Normal' Life...

Being the last day of the month, it's time to finally join the circus.

Or rather, the carnival. The Diabetes Blog Carnival. Also known as the #DSMA Blog Carnival.

For those outside the ever-expanding online community of diabetics, you may find it relevant to know that #dsma means Diabetes Social Media Advocacy. That's a weekly Twitter chat where dozens come together online to discuss diabetes issues and topics, and the point of this carnival exercise is to have a bunch of D-bloggers focus on a specific question and personalize our own response to that. Blogs will all be compiled at month's end to highlight what's been written.

So, the February topic has been:
"The most awesome thing I have done in spite of diabetes is . . . ."

There have been so many posts, from the start of the month to just recently. Many have had great responses. Some have resonated completely with me, others in part, some not so much. But all have been wonderful to read, without a doubt. Reflecting on that sentence myself, my mind has gone to many places. But in the end, my response reads as this:

"The most awesome thing I have done in spite of diabetes is live a 'normal' life, where I've reached those dreams that I didn't think would be possible specifically because of diabetes."

There was a lot of hopelessness in my life when I was younger. Not much confidence that I'd get very far, simply because of diabetes and the way I'd been so out of control for so long. I just didn't think it would be possible to ever reach my dreams - two of those dreams being a professional journalist and the other being married to an incredible woman who simply makes life worth living.

I didn't have dreams of world travel or mountain climbing or "doing the impossible," but rather just wanted to be like all of those other non-diabetics who were able to live a normal life. Simple enough, but it seemed at one point that both of those dreams and others were not reachable to me as a result of my health.

But I've reached those dreams. And I am living on, striving to accomplish and achieve more and reach for those stars that are still out there.

For the most part, I have a "normal" life that I'm proud of and wouldn't ever want to sacrifice.

All in spite of diabetes. Thank you very much.

Friday, February 25, 2011

"No, Your Honor, It's An Insulin Pump"

As a reporter at a legal newspaper, I find myself regularly passing through courthouse security and sitting in courtrooms.

A recent assignment took me to a local courtroom notorious for having a "no tolerance" policy on cell phones and related pieces of technology, to avoid any potential courtroom disruptions. The judge and bailiff are well-known for the policies and discipline imposed on folks who disobey.

So you can only imagine my delight recently when my insulin pump appeared on their disruption radar and the court focused some of its attention on me.

In the hours before entering court that day, I'd been flirting with Lows all morning. Blood meter checks showed my CGM paranoia was totally off base and was at least 40 mg/dL off the mark - meaning there was nothing to be worried about. But being in a constant on the run mode that day made it a little more uncertain, and meant the constant pump alerts weren't helpful and were rather annoying. Court just added to it.

This wasn't federal court, where the security guards have gotten to know me by face and don't hassle me much anymore about the pump at my side. No, this was a county, state-level court I don't make it to very often. Blank stares on the faces of the security officers at the entrance didn't seem to comprehend what an insulin pump was, and they weren't overly impressed with my explanation that the device attached to me was a "medical device that cannot be removed." A wand revealed no danger, so they cautiously let me pass (though I could feel the glares as I moved on through).

At the courtroom door, the bailiff instructed all who entered that the judge wasn't fond of cell phones even being out in someone's hand, let alone being used: "If (the judge) sees you playing with a cell phone, it will be confiscated and you could be fined and held in contempt of court." I'd heard this many times before and waited patiently to enter the courtroom, not suspecting it'd be an issue. My cell phone is always silenced in court, as is my insulin pump.

But that day, once sitting in my seat and the judge had entered, Larry The Loaner CGM got fussy. He decided to start alerting me that a Low Was Predicted. I silenced him, and minutes later he alerted me that I had in fact hit 70. Another snooze before another alert that I'd gone down more. After the fifth one, I started getting annoyed and wondering if I was, actually, as Low as Larry was saying.

I drew my pump from the holster at my waist and examined it for a moment, looking at the CGM graph that had hovered somewhere around 70 all morning. But now, two arrows were pointed straight down and the number on the screen was 58. Hmmm.

I felt fine, without any blurry vision or other signs of Low present. But it might be time to check. Didn't want my courtroom or people-watching ability to be sacrificied because of a Low.

Producing my blood meter from my coat pocket, I set my little black case on my leg and did a blood test. There was no one immediately to my right and the person a few seats down didn't seem to notice or care what I was up to.

The bailiff standing to my left was a different story, and he had apparently become very interested in what I was doing. As I fondled my pump and pushed some buttons, I saw him put on an "Oh, no you DIDN'T just whip out a pager!" facial expression. As I pulled out my meter case, he moved toward me.

"You need to give that pager or phone to me," he instructed, pointing to my pump now resting back on my belt.

Me: "It's not a pager or cell phone. This is an insulin pump."

Bailiff: "Well, whatever it is, you are not supposed to be using that during court. It's against the rules. If you want to use it, you'll have to leave the courtroom or I'll confiscate it."

Me: "Fine. If you want to call the paramedics when I fall over unconscious, I'll give you my medical device now. I'm sure the judge will love it when you and him are both sued because you don't understand what an insulin pump is."

He stared at me. I could feel his uncertainty about what to do - leave me alone, toss me out of court, or slap some handcuffs on me for arguing with him. Though the moment didn't last more than a few seconds, I imagined him cuffing me and hauling me up to the bench before the judge for a whole other conversation.

Source.
Judge: "Son, you were instructed not to be using any phones or pagers while in my courtroom."

Me: "With respect, Your Honor, this is not a cell phone or pager. This is an insulin pump. It's a medical device."

Pointing to my pump: "That right there? It's so small, just like a pager. Are you sure?"

"Your Honor, it's an insulin pump. Trust me. I wear it all the time to help monitor my health. Kind of like a pacemaker. It is not going to disrupt anyone in court."

I imagined him eying me suspiciously, obviously taking a cue from the security guards at the front of the court entrance.

Judge: "I see. Well, just stop fidgeting with it. You are making my bailiff uncomfortable."

"Yes, Your Honor. I understand."

Of course, this conversation didn't really happen and I doubt it ever would. I've personally observed that most judges and most courtroom staff are great, caring people.

My issue this time was with the bailff, who was hovering above me back at my seat and finally spoke, drawing me out of my daydream of standing before the bench.

Him: "Well, then, do what you need to. Just don't disrupt court."

Me: "I won't. Thank you for your concern."

You know... I make every effort to respect the rules of court. They are important. But this was just ridiculous. A case where this moron being all concerned about my quiet, discreet, and non-disruptive pump viewing was MORE OF A DISRUPTION than what I was doing. Sometimes, people use their phones and are disruptive. Sometimes, phones and pagers aren't silenced. Yes, that's disruptive. But this wasn't. I was being quiet and no one cared, except for the hawk-eyed baliff who took an issue with someone not watching the judge's every word. That annoys me, and frankly it's a waste of court resources for this to be happening.

For the record, my blood test was not 58 as the CGM arrows indicated - my meter said 75. Assuming the trend was correct, I found my sleeve of glucose tabs in my coat pocket and ate a couple to offer a little boost. All was fine.

But with the CGM acting up, I'm thankful that whatever "ruckus" it was causing didn't result in my getting cuffed or having to actually stand before the judge because of my pump. If that were to happen, I wonder if the Diabetes Online Community would help pay my bail if I ended up in jail for "Disruptive Courtroom Insulin Pump Button Pushing?" Hmmm.

Well, at least we didn't have to find out - for now...

Tuesday, February 22, 2011

Me, Not D

Recently, Briley over at It's About Independence, It's About Life sent me an email saying she had a story to tell and wanted to see if she could share it over here. Always welcoming guest-posts and opinions from fellow D-Bloggers, I agreed in a heartbeat and looked forward to sharing her thoughts with the rest of the Diabetes Online Community.

Sending her post, Briley noted: “I'm very honored to be writing here today. This is my first guest post anywhere and I couldn't be happier that it's here. I started reading Michael's blog when he wrote about D camps, and I'm a big fan of camps, especially D camps. He welcomed me into the DOC with open arms, and really made me feel like I belonged.”

Then, she shared her story. 

I want to talk about the difference between being a diabetic and being a person; more specifically on Valentine's Day. I had finished the most amazing meal I've ever cooked, and The Boy was telling me how his gift for me seemed insignificant. I told him I didn't think that it would be. It was this giant cardboard box sitting there next to me being all intimidating during dinner. I took the tape off, and opened the box and I see bubble wrap and green. Like juice boxes. Sixteen of them, in fact. I've certainly had crazy lows with him. From nights where I needed five juice boxes in two hours, to multiple juice boxes to get rid of a number in the thirties. I started laughing because giving me something that is going to help me is sincere.

He kept telling me it was insignificant, but I said he was wrong. Insignificant wasn't the right word, But they certainly didn't make me feel good or special. And isn't that what Valentine's Day is all about? I just kept going with the night, and kind of ignored what my present was. But the next day I couldn't stop thinking about it. It made me feel like a burden. I don't want to feel like a burden, I just want to feel like a girl. I am happy that he supports me, and that he realizes this is something I need. I know that it's a caring gesture and that is how I've come to look at it.

But there is so much more to me than diabetes. On regular days, I want diabetes to be on the back burner. On special days, I want it to be invisible. Diabetes can make me feel like a burden all by itself, I don't need a present that emphasizes that feeling. 

Reflecting on Briley’s situation, I know exactly what she means. I'm pretty sure we all do. I’ve been there, in various situations during my 27 years with diabetes. We try so hard to not be defined by our diabetes, to make it so diabetes isn’t the focus, but we are. Me. You. The person. Maybe our skills, our talents, our abilities, or even the situation itself and not about the diabetes. But sometimes, it’s just interfered and become the focus against our wishes – and that makes us feel out of control, even like a burden if someone else is brought into it.

In my own life, I tried for so very long to make it so my diabetes was invisible and not the focus. This is something I grew up dealing with on my own, so there was no need to bring others into my D-Life or make it “a big deal.” This was long before the shared-experience of the DOC, before it became “the cool thing” to talk about. In those days, talking about it made it bad, and so the logical extension was whenever diabetes came up, it must be somehow tied to a negative.

This carried on mostly up until meeting the woman I’d eventually marry, and in those early years together she helped me see it was “normal” and not something to be ashamed of. We supported each other, with or without diabetes being a focus, and really for the first time I began feeling positive about myself and my health. That my diabetes didn’t matter or spoil a truly splendid and wonderful thing.

But even then, diabetes wasn’t something I openly and outwardly let the world in on all the time. Those guarded, shielded, “me” times were still needed.

A few summers ago, a good friend and I were out on the golf course. We were at a local course and it was just the two of us. But being a sunny weekend morning, we were paired up with two others who were out there on their own. The four of us ventured out on the course together. That day, I was out there to play golf and enjoy the times with a good friend. At one point, as one of the guys was teeing off and were standing behind him waiting, one of the strangers glanced at my waist and saw my insulin pump. “Oh, is that an insulin pump?”

My world was deflated. I’d tried so hard that day to not make my health a focus, to make sure my sugars were fine and that I wasn’t going to be hindered by a Low blood sugar or anything else while out there enjoying the day. Then, this curveball comes out of nowhere.

Again, this was before the days when my active involvement in the DOC spurred “D-nerdiness” that might now lead me to sprint across the golf course in pursuit of someone interested in talking about diabetes, particularly if that person is a fellow Person With Diabetes. No, that summer day, I just didn’t want diabetes interfering with my life.

“Yes, it is,” I said without emotion, not making eye contact and then turning away from the inquisitive mind.

Totally brushed him off, and ignored it.

A simple enough question had, as it seemed at that moment, invaded my world and brought my mood down.

Nothing more was said about it, though it later became an inside joke between my friend and I about how to actively avoid engaging in conversation and sidestepping whatever issue might be the topic of conversation.

This comes to mind because really, no matter how good the golf course guy’s intentions were, I didn’t want that moment to be about my diabetes. I wanted to be about my golf (for better or worse), about that day and just us guys out on the links. Me, not diabetes. So many other experiences in my life have given me that same feeling – that the focus is anything but my diabetes. It’s been a success at times and sometimes it hasn’t.

No matter how much we talk about diabetes as advocates and bloggers and "empowered patients," sometimes we just don't want to talk about diabetes.

Sometimes, we “just don’t care” and we don't want to wear it on our sleeves or jump over church pews or dinner tables to meet someone else who has an insulin pump. This brings to mind a post Kerri wrote recently, and helps me think twice about how I approach other PWDs out in public - regardless of how excited and cool I am about seeing a fellow D.

No matter how much diabetes is a part of us and how much ownership we've taken, sometimes we want the focus to be anything but diabetes. We want to be "normal." If even for a moment.

Friday, February 18, 2011

Not a Sugar Cat

Yes, that's pump tubing on my head... Don't ask.
Our Shadow Cat is almost nine years old.

She came into our lives about seven years ago, in the summer of 2004 that was our first year living in Indiana after moving here from southeast Michigan. A copy editor friend at the paper I worked for at the time found her on the side of the road one night, scared after an apparent near-miss by a passing car. Her front paws were scraped, but she was OK. An email went out at work about anyone wanting to adopt a cat, and despite not being "cat people" or ever owning a pet before, we opted to bring her home. She was already being called "Shadow" because of her gray coat and "sneakiness in following you around like your shadow," so the name stuck. We found a vet and learned the estimate was she was about 2 at the time.

We moved from that apartment to our first house about a month after our wedding in September 2005, and after some initial investigation she loved the space where she could chase her tail in many different rooms and run up and down the stairs in the middle of the night while hunting the invisible mouse in the walls.

Those first couple years were fun. My parents called her the "grand-cat," while we refer her to as "Kitten Mitten" and "Kitty" and "Beaner. We've all been very happy. In mid-2007, the county Humane Society chapter offered us a chance to bring a black lab into our lives - that was Riley, about 2 at the time. We adopted her and brought her home, and Shadow quickly disappeared under the bed in hiding. We didn't see her for two weeks, though we found signs that she was coming out periodically for food and water and litter box use. Gradually, she began emerging more frequently and got used to the idea that the big clumsy dog wasn't going away.

Riley and Shadow became sisters, roommates, and eventually friends (or so we tell ourselves). They occassionally taunt each other. Shadow stretches out on the floor and paws at Riley's curious-sniffing nose encroaching on her space. They have good times.

After our four-day visit to see family in Michigan over the latest Christmas holiday, we returned to find Shadow had started drinking out of Riley's water dish in that dog's cage upstairs. This wasn't normal. No matter what we tried, we couldn't get her to stop - but we thought she had just claimed it for herself in her usual "I rule this house" persona.

Recently, we'd started noticing Shadow seemed to be losing weight. She'd occasionally pee outside her box, but we didn't think much about it. More recently, we noticed she was searching for and deliberating peeing in places around the house. It got worse over the past week. Maybe it was a virus, we thought.

I stayed up with her one night and watched her, going back and forth between water dishes and peeing twice in the living room. Sitting down watching her about 1 a.m., I thought aloud: "She's so thirsty. And peeing so much. And has lost weight... Oh crap."

Suddenly, it all clicked into place. What if... Shadow is diabetic?????

My mind raced. As did my heart.

I began wondering if there was a future of blood tests and insulin injections in store for my cat. Some guilt set in, like what if I'd caused this - not giving her the right food, or let her contract some type of bug triggering this, or the water was tainted, or...

The image of Shadow from a year or so ago with the pump tubing "hat or halo" on her head came to mind, and I smiled and also frowned in thinking maybe I'd contributed to her condition somehow.

Snapping out of it, a call to the vet's office revealed that they opened at 7 a.m.

Turning to the online world, I made an interesting discovery:  a whole sub-community exists within the Diabetes Online Community that I know - seperate from the Children With Diabetes, Parents of CWD, Adult Type 1s, Type 2s, and even those caregivers known as Type 3s.

There is a Feline Diabetes Community, complete with message boards and forums and blogs and Twitter handles and online information sources. Such as Your Diabetic CatFelineDiabetes and the SugarCats Network. I found some D-Cat blogs, from both the kitty and human perspectives. The night-time minutes ticked by as I absorbed everything I was reading, merging it with what I knew from my quarter century of experience with Type 1.

Shadow appeared from the stairs and moved to a spread of newspapers and a paper bag we'd put out, just in case. She squatted and peed. That's when I wondered if I could use a ketone stick to test her pee. I ran upstairs and sprinted from room to room searching for that elusive bottle of ketone strips I knew was somewhere in the house - checked the bathroom counters, the medicine cabinets, every drawer, my night-stand and travel cases, and everywhere I could think. But no ketone strips.

By then, the moment had passed and I gave up. There were apparently no strips in the house, and I made a mental note to do something about that in case I needed them at some point. (I plead the 5th on how long it's been since I've tested for urine ketones...)

I wondered about how to test Shadow's blood glucose, imagining a lancet prick to her paw or the tip of the ear. Couldn't bring myself to do it.

About this time, I heard it: the muffled sound of an alarm clock blared from somewhere upstairs. I realized then that I'd stayed up all night cat-watching and worrying and it was now the morning hour, nearing 6 a.m. Suzi appeared and I briefly recapped the nights activities and concerns, and we agreed to phone the vet first thing in the morning and try to get her in for tests ASAP. We both got dressed for work and went on our ways, expecting a busy day at our respective jobs but keeping the cat on our minds all day.

I made an appointment for the following morning at the vet's office, but as we've been increasingly displeased with our current vet, we opted to quickly find another that was nearby and highly-recommended. (Good, too, because the prior vet was named "Sugar Grove" and that just didn't sit well with me...)

Shadow had a few accidents during the next day and still drank massive water, and we both took her the next morning. She was as pleased as always (not) to get stuffed into her travel carrier and meowed all the way the way there.

The new vet is very nice, and after a physical examination and hearing us talk about her symptoms and behavior, she said that everything indicated there were three possible scenarios: Diabetes, Hyperthyroidism, or Kidney Infection/Disease. She took Shadow back for a urine test and some blood work. A few minutes passed and she returned with the results: saying that glucose levels weren't high and so initial data hinted that neither diabetes or hypothyroidism were to blame. But the bloodwork coming in the next day would tell us more.

Meowing in displesaure at being "captured" in her box.
We bought two weeks worth of liquid antiobotic and left the office, with Shadow once again voicing her displeasure all the way home. Our vet obtained and reviewed Shadow's labwork and phoned us the next day with the results: As suspected, it was pretty clear that she's in the early stage of kidney disease.

Our hearts caved in.

I know mine did, but admittedly in a strange way, I almost felt a depressing sense of relief: that at least Shadow isn't a Sugar Cat... I got more depressed wondering if I was wrong to feel relieved she wasn't diabetic, despite the kidney disease diagnosis.

The Diabetes Online Community and others cheered me up, and made me realize the obvious: that this is not a fatal prognosis by any means. It could be a virus that just needs to be eradicated. We have liquid antiobotics to give her twice a day for a couple weeks, and have special low-protein diet food to give her to help. We check in with the vet in about a month to see if this slows the progression down or makes it go away. So, we'll see.

In the meantime, our Shadow Cat is home and receiving all of our love and attention - Riley continues sniffing and loving her, like a good sister should.

She may not be a Sugar Cat, but she's our Shadow Cat. For better or worse, now and always.

Thursday, February 17, 2011

Keeping The Faith For a Cure

Lately, I've been asking myself a key question: "What has the JDRF done for me?"

Like really, truly through all the years as I heard that a cure is "right around the corner," while continuosly raising money for that cure, yet not seeing it around every corner I turned in my life? What have I gotten from the organization so devoted to researching that so-called cure and what do I think of that mission?

Reflecting on this question seriously in recent weeks, some irony has come to mind because of the answer:

In a weird Twighlight Zone sort of way, the JDRF has given me hope.

Maybe not the kind of hope that comes from knowing each dollar I raise for a walk will specifically fund a cure at some specific point in the future. Rather, the hope that a lot of people are looking for a cure with all the passion in their hearts.

I'm not a scientist, so I don't know what might be the best road. But I know there's the JDRF doing what it can,  just as many other scientists and researchers and organizations are also trying hard to find one.

That gives me hope. Even if I'm jaded and, after 26 years, don't believe I'll see one in my lifetime. Just as my mom, diagnosed as a kid 53 years ago, doesn't believe she'll see one while she's alive.

Maybe it's just faith.

There's some intangible hope in the fact that cure research is ongoing and that someday that passion will lead to a cure, by someone. The JDRF has supplied me with that hope, even during the times I didn't see anything from them and felt more like a marketing tool or exploited face or another donation mark on the charity's register.

I'm not the parent of a CWD, so I can't possibly imagine what it's like to look into the face of your child and try to tell them a cure will come - when you doubt the truth of that statement. Or their faces when they cry for a cure and you can't take diabetes away or say when a cure might be found.

But I was that kid. My memory is that my parents always basically told me: "The JDRF is trying, but they just don't know when. Other scientists are trying, but they don't know either. We may or may not get a cure, but regardless we'll do our best to make sure you can have a healthy and successful life."

Recently, I asked my mom about how she looked at the then-JDF in those years following my diagnosis and how that impacted their "cure" and "hope" philosophies when raising me to Live with Diabetes.

She said, "I’m certainly a product of many medical professionals following the 'cure in five years' theory. Because of hearing this for virtually my whole life that I remembered, we never hyped the cure to you in any way. In fact, I quickly shut down any medical professional you came in contact with that might start talking about 'The Cure.' We did believe in the philosophy that was held by (your initial Children's Diabetes Care Team) of working within the known technologies to try and get the best results possible. My mother, from when the JDF was a new organization, believed in it more than the ADA - mainly because they contributed more of every dollar to the cause as opposed to paying workers and spending the money on offices and things. So, she volunteered her time in making phone calls and doing office work for them. This was the same principal that your father and I believed in and why we chose to volunteer our time to them once you were diagnosed."

So that's how I've grown up, and what I think now. It's about the here-and-now as a main focus, without losing that hope of a cure someday - both play into each other.

I'm sure there are many research ideas and various funding issues to delve into, but I'm not qualified to know about that. When it comes to what the JDRF has done for me: they're trying the best they can. I think as a layperson, and as someone who they are doing this all for, that provides me comfort. Regardless of whether I understand all the decision-making and annual report confusion or not... I'll leave the rest to people much smarter than me.

As Bon Jovi has sung, I'm just trying to "Keep The Faith."

Tuesday, February 15, 2011

Pinstriping for Diabetes Camp

Ever thought about having your blood meter or insulin pump pimped out with pinstripes or some other creative artwork like vintage blue flames or flashy cool wavy lines?

Or maybe you've pondered how an artistic painting genius might illustrate what you’re feeling about a dreaded D-complication, like the Dead Eye version known as retinopathy?

Until recently, I can’t say my mind had ever pondered either of those above-mentioned concepts.

But now, thanks to the Diabetes Youth Foundation of Indiana, those two curiosities have been explored and addressed through an awesome fundraising event aimed at helping to send kids to Diabetes Camp. A group of talented artists brought those questions to life with a little paint and artistic wonder, part of the Pinstriper Panel Jam & Auction this past weekend that raised a total $8,815 to help send kids to the Camp Until a Cure in Noblesville, Indiana.

This all came to be at the World of Wheels class car show in Indianapolis, where these pinstripers created, showcased, and sold off their artistic work and donated every dime earned during the three-day show.

Pinstripes putting pizzazz in every BG Test!
Offering some time and energy, Suzi and I volunteered for a shift on Sunday morning but ended up staying the entire day to help out where needed. We're very glad we did, being able to not only experience the event and meet some great people but also see the final big check made out with the total amount presented to Jenna on stage with the pin stripers standing with her! Very cool.

At one point, after doing a blood test, my mind flashed to scenes throughout the day of the artists decorating everything from coat jackets, motorcycle helmets, key chains, and iphones and ipods. I looked at my One Touch Ultra Link and started swirling possibilities around in my mind…. Approaching one of the artists named Vincent, he offered to deck it out and went to work. I told him to surprise me with whatever his creativeness could muster up, and Suzi snapped some photos as performed his magic to create what is now my pimped out meter! This diabetic is now as slick as a T-Bird, with a One Touch meter that's gone all Greased Lightening with cool blue hot rod stripes. My meter is ready to cruise the groove of #bgnirvana and avoid those sharp glucoastering Dead Man's Curves that may lie ahead. (OK - Endeth the Digression of classic music and movie references.)

We opted to not have the insulin pump on my waist decked out with pinstripes, as Larry the Loaner 523 Revel is only a temporary cohort in crime and not to be replaced with my non-CGM friendly version we know as Sir Bacon Gibbs 723.

By pinstriper Bob Keeney "Bikini"
But while I didn’t any other diabetes-related items decorated, my mind managed to find a D-connection in one of the pieces created that morning and auctioned off that afternoon – it was a Dead Eye, seen to the left. The artist had a particular theme on a few pieces with this same style of eye, and no one could figure out its significance. Wondering aloud about the Dead Eye originas, I pontificated that this could be some reference to retinopathy…. Some snickered and Suzi shook her head at me, but the idea was stuck for good. (This probably wasn’t the case, but it sounded good and has now become my mental image for this dreaded D-Complication.) Others shook their heads at me, but I went on my merry way thinking what I thought. In the end, the Dead Eye masterpiece raised almost $100 for the DYFI.

Pinstripers were: Bob "Bikini" Keeney, Furious George, Jeff Whitaker, Mike Ralston, Rich Mickelson, Lit'l Bill, Lloyd Johnson, Brian (Dice), Mark Harmon, Shane Syx, Seth "Wink" Killea, Victor Figueroa, Jerry Carr, and Bob Vandergraff.

Countless other items were made and sold, and it was great being a part of it for the first time. There's another pinstriping charity event in October, one that may bring more opportunity for even more outside involvement and some interest for the Diabetes Online Community as World Diabetes Day draws near... So stay tuned!

Disclosure: This was my introductory event as the newest DYFI board member, something that became official earlier this month. I join a dedicated group of individuals working to make D-Life a little more manageable for children with diabetes and their families, via camp and related programs. I’ve only been involved in the organization for about a year, after reaching out in late 2009 as I'd gotten more fully invested in the Diabetes Online Community and was trying to take that energy offline into my local Diabetes Community. I’ve written about D-Camp before, but this year the departing director who’d introduced me to the DYFI asked if I’d be interested in stepping it up a notch. Really, it was a no-brainer and I gladly accepted the invitation.

So with that, I'm excited to be a "grown up D-Camper" now being all official-like in my D-Camp board participation. One thing that's on tap to help spread the word about the DYFI and Camp Until A Cure, which is the only one of its kind here in the state of Indiana. While two other D-Camps do great things in other parts of the state, the difference here is that this is the only one in Central Indiana and it’s specifically built and designed for diabetes and special needs, not as a side-project at a bigger camp that holds other programs and only occasionally delves into the diabetes world. Social media is a part of all this, and so that’s where I come in to help spread the word online. With a new Type 1 executive director just starting at the end of January, the DYFI (on Twitter as @dyfofindiana) continues moving forward with some exciting endeavors and I’m excited to be a part of that. In her mid-20s, Jenna Holt (a Type 1 diagnosed at 17) is already on the ball and has hit the ground running. This recent Pinstriping fundraiser was her debut event, and my personal observations are that she helped make it a glowing success and raised more than what had ever been brought in before!

Jenna says, "I couldn't have asked for a better turn-out with our pinstripers. They were amazing with hearts of gold. I think overall, the event went great and that we have room to set/ exceed goals for next year."

Others have written about D-Camp before, such as Kerri and Kelly and most recently Haley from Naturally Sweet who said this, “Diabetes camp is one of the best experiences that a child with diabetes can have. Camp is a place to learn self-confidence, independence, to be with other kids with diabetes, and simply to have a great time.” A Place to be 'normal.'

That is what the DYFI is all about and it's great to be a part of that. Pinstriped blood meters, concepts of Adult D-Camp, and everything else that may be down the road.

Monday, February 14, 2011

Happy Heart Day

UPDATED:

Came home from work on Valentine's Day to a special Heart Day Gift:

#BluntLancet shirt, along with candlit Valentine champagne glasses & chocolate hearts!

This was the second #BluntLancet shirt, a result of the first one being the wrong size. CafePress was cool about it and offered to send a correctly-sized one, but also allowed us to keep the original! So, now we have two!

Below, you'll find my original Heart Day post as it was before this mail delivery update...


Total Carb Count = 80g

Yes, seriously. I'm not lying...

You may disagree, but for me, this milk chocolatey goodness is totally bolus-worthy!!!

Enjoy whatever treats you may enjoy or whoever your Valentine is for 2011.

Have a Happy Heart Day!

Thursday, February 10, 2011

Diabetic-Friendly Boxer Shorts

Do real diabetic men wear boxers or briefs?

Admit it: You really want to know.

Personally, I wear boxers most of the time.

It's a comfort choice. But sometimes, it comes down to where my insulin pump is attached to my body.

I often rely on the same real estate and go with my upper body - abdomen, arms, stomach - for pump sites. Way too often, I leave these sets in longer than what is FDA-recommended (Disclaimer: I'm no doctor or medical role model here...) When sites are tough to find and it's time for a new spot, I resort to leg sites.

Usually, I fall back to these areas when the above-mentioned locations are over-used and beat up. But I often feel restricted in my daily activities, like every move I make might rip a set out or dislodge a cannula. The dog isn't allowed to sit on my lap during these leg site periods, and I usually am more cautious about bending over or stretching that particular leg in a way that might spell site trouble.

My underwear choice also weighs into my decision-making each day when a leg site is in use. Briefs may leave a set more exposed to a pant leg and lead to irritation, so I go with boxers if there's any choice in the matter (laundry day sometimes presents a true challenge to this).

The looser, non-tight boxer shorts are my choice. These are what I describe as "Diabetic-Friendly Boxer Shorts." I can pull them up and access my leg more easily, either to disconnect the set or just get a quick glimpse of it to make sure all is OK.

Sometimes, it doesn't make a difference. My most recent leg site was proof of this: Had a D-Friendly pair of Boxer Shorts, but only got about 30 hours of the set attached to my site before I looked down and noticed it was bloody red. Nothing I'd done to cause it, just the way it is. So, I switched sites and went back to the trusty abdomen.

All while feeling nice and comfy in my D-Friendly Boxer Shorts.

So that's that. My response to the question of "Boxers or Briefs?"

Simply, it depends on the pump site spot and whether the laundry has been done!

Wednesday, February 9, 2011

"I Just Don't Care"

Living With Diabetes is tough.

Constant blood sugar checks. Invading thoughts about what the numbers mean and whether that'll impact your day or task, and how so. Balancing snow shoveling or dog-walking with BG levels and what type of quick-acting sugar you might need to haul with you. Frustrations with insulin pumps, from low battery or refill alerts to wondering about whether the little speck of red near a cannula is hindering the insulin flow and causing your mood swings. Beeping Continuous Glucose Monitors. Math equations every time you consider putting food into your mouth.

To put it mildly, those daily routines can be overwhelming at times. We can drive ourselves nuts.

Diabetes doesn't give us a break, but sometimes we need a mental vacation - if even for a few hours every once in a while.

My slacking came on Tuesday, after a long day at work that only forecast what was expected to be an even longer deadline-heavy latter part of the week. Frustration with the D-Routine boiled over and pushed to the point where I just stopped caring at that point. I needed a night off.

A dinner-time blood test was 122 mg/dL. But that wasn't going to last long.

I was hungry and tired and stressed, and needed to just sit back and relax and not care. So, I ate a bagel-and-egg sandwich, munched on some oyster crackers, and enjoyed a cup of hot cocoa. Without bolusing.

Sure, I thought about it. But... "I just don't care."

Searching the cupboard later that night, I found a delightful surprise I hadn't planned for:

COOKIES.

While they weren't the girl scout variety, they were my favorite style: Keebler Fudgeshoppe Coconut Dreams. Mmmm.

I became The Cookie Monster, gobbling up each and every one that was in that package. Nine cookies. Every two translated to 17g. Some milk to go along with them.

But I didn't do the D-Math, because...

"I just don't care."

Tweeting about this, the desire for cookies festered in the Diabetes Online Community and several indicated that they'd also been craving some of these. Ah, my slacking is contagious, I thought!

Only once, did I think twice about my carnivous cookie-eating and Tweeted about this.

"Scarfing down those massive cookies w/o regard for accurate bolusing might not have been the wisest move in playbook. (sigh)."


But, that regret didn't last. I was convinced this was a needed break in D-Devotion.
A few hours later as bedtime rolled around, a blood test revealed: 342 mg/dL.

I smiled, and didn't regret my earlier eating decision at all. The cookies were awesome, and just what I needed. So, I corrected and went to bed.

Slept like a baby. (my wife may disagree, but my rest was peaceful - and I thank the cookies!!!)

Now, I did wake up to a 300 (indicating the cookies took me even higher during the night), but still that didn't convince me I'd made a regrettable decision. My sugars came back into the 200s and finally 100s by early afternoon.

This was a needed mental break, and I'm perfectly fine with just letting go every once in a while.

You don't own me, diabetes. Yes, I CAN eat that and I'm going to. Go screw yourself, while I eat some cookies.

Monday, February 7, 2011

Letter to Larry

You may recall that in early January I began 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 a Continuous Glucose Monitor (CGM). Affectionately, I named this loaner pump and CGM combo Larry The Loaner.

A month in, this is a letter to the device that has given me a chance to look beyond fingersticks for a short time.

 - - - - - - - - - - - - - - - - - - - - - - -
Dear Larry The Loaner:

This is tough to write.

Frankly, because it's not going to be what you were hoping for when we set out on this adventure a little more than a month ago.

Unlike my two-week ride with Lex The Dex and my short Flight of the Navigator more than a year ago, our time together has enabled me to trial-test a handful of sensors rather than just a one-time test. This has been a beneficial look at how you'd really be if we were to partner up in the long-run.

Instead of a one-night stand, we've had a chance to date before deciding whether marriage is the best way to spend our diabetes-focused futures. But I've decided it's not, and there's no engagement ring in our future.

The newness has worn off, and I've been able to see what it's like to connect multiple sensors on different body sites. Five, to be exact. Each has offered less than a week before the sensor bites the dust: 6 days, 3 days, 5 days, 5 days, and 7 days.

Comparitively, this is far less time than the 15 days obtained from that single Lex The Dex sensor. Since Navigator isn't really an option anymore thanks to the Abbott unreliability, it's not useful to compare them.

You generally take a day or so off at the start of a cycle to get used to my body fluids. Then, on the final day, you've demonstrated no coherent train of thought before ultimately proclaiming "CAL Error" and "Lost Sensor" in defeat. From there, attempts to revive you with that same sensor are futile.

Even on those "real-time" days, I'm sad to say you haven't offered me much consistency. If we're dancing between that good range of 80-200 mg/dL, things have generally been OK. But you aren't consistent or reliable, and so results have ranged anywhere from perfectly on par with my meter to more than a 100 points off.

Net effect?

Five days average out each sensor.
MINUS one day on each end.
=  Three days of accurate results.
DIVIDE that in half, since I'm in range about 50% of the time.
-->
1.5 days of real, true, accurate results
(Not factoring in that 20+/- margin of error issue...)

When looking at Lex The Dex, you figured on 15 days, with one day cut off on each end equaling 13 days. Cut that in half, you're looking at about 6 days.

Six compared to 1.5... That's the comparison. And Larry, you just can't compete.

The benefit of having your CGM capability merged into the pump and allowing for one device to haul around is nice. But in the big picture, it doesn't weigh heavily on my decision-making.

I've had one major Low in the past month and you missed it. didn't catch it. At the time I was dropping in the middle of the night, and that's when you decided to get all confused and scream CAL ERROR at me. Therefore, missing the very point of alerting me to the impending low you're supposed to serve.

That's not to say you haven't been helpful. I'd be remiss if I didn't admit that.

You have helped me spot some trends, impacts of certain foods and how boluses play out over time. And mentally, you get me to pay more attention to what I'm eating and how I am dosing and trying to stay "in range" more often in order to keep the graph lines straight and within the boundaries.

But in weighing the Pros and Cons, you are on the losing end, Larry. You just aren't worth the cost and insurance hassles of purchasing a Minimed CGM for the long haul. We just aren't meant to be. I trust you'll find someone else down the road who'll be more of a match for what you offer. That's just not me.

Sorry, Larry. I'm glad you are a loaner and gave me some valuable insight, but it's just not worth more than that - at least in this early CGM generation that we're in. Maybe, when technology gets a little better and leads to more increased accuracy, we can sing a different tune together. Just not now.

Friday, February 4, 2011

A Little #BluntLancet

A package arrived.

WOO HOO!! How very exciting!!!!

Opening it, this is what was inside.
We won't get into the shirt size discrepency issue...

And this.

Meter & Test Strips not included.

So, now I'm a groupie of the music phenomenon known as BluntLancet (#BluntLancet). And being a fan means I also support the Diabetes Hands Foundation.


Oh, my Riley Dog is also a fan who's ready for the Rythm & Bruise Tour!

Rock On, Riley!!!!

Conquering Evil Twins

At some point, is it possible to look in the mirror and see a snake oil salesman or Halle Berry staring back? You know, someone doing more harm to the diabetes community than good? That thought horries me. But it's how I feel at the moment, and regrettably it's something I have brought on myself. My evil twin came out to play, and I'm feeling the consequences of that.

Much has been written and discussed recently about a diatribe article with JDRF CEO Jeffrey Brewer, focusing on the organization’s focus and direction. Discussion on that article began online and some passionate parents of Children With Diabetes voiced their thoughts and views on the article and overall topic. Some expressed frustration with the direction while others didn’t. The Adult Type 1 community joined into the discussion, and unfortunately the conversation soon dwindled into a name-calling slug-fest onine between some CWD Parents and the Adult Type 1 community.

Here's the thing. I disagreed with some of the parents, and saw that they were attacking another Adult Type 1 about the focus of the JDRF while voicing opinions that it's all about their kids. But instead of simply responding with my views, I posted a comment that was written in the heat of the moment and had sarcasm, anger, and frustration dripping from it like insulin at the end of pump tubing. While I didn’t create the issue or tension that was evident in earlier posts, I fueled the fire and helped lead this discussion into what it became.

I regret this with every ounce of my being, and I apologize for that.

This community and everyone in it has saved my life and fed my soul, and the last thing I want is to see it drawn apart. What concerns me most is that some in this chat have described the Adult Type 1 online community as not being professional, holding the parents in disdain and enjoying the negativity and inflamatory drama.

That is absolutely incorrect. While I only speak for myself as one guy who's been diabetic for a long time, we do NOT have disdain for the parents of CWD. Rather, we have only respect and admiration. I’ve written on this theme repeatedly, as have many many many others.

It crushes me that our community can go after each other like this. I've been reduced to tears more than once about how I somehow was a part of a debate that ended with any parent of a Child With Diabetes thinking any Adult Type 1 thought they are pathetic. That breaks my heart, and I've considered tossing in the blogging towel because of my brief but monumental lack of civility.

But I've thought twice about that, realizing that while I may feel like I'm on the level of a Halle Berry cure-preaching snake oil salesman, this is all in my mind and it's time to move on. Together. So, I'm owning my mistakes and moving on. Hope you're willing to join me.

To me, this highlights the dangers of how we interact in this still-new, ever-expanding Internet world. Just because we can spout off with a few clicks of a keyboard, doesn’t mean we should. We must ALWAYS be mindful of what we are saying and how it’s being said, to do our best to not spark a forest fire where a few flames already exist. Just because we can, doesn’t mean we should. Civility is key. Negativity achieves nothing, but destroys everything.

Allison over at Lemonade Life wrote a very balanced and reasoned post on this recently, and others have written similiar posts that emphasize our return to civility and working together against the common enemy of diabetes. Completely agree here, and I'm looking forward to that discussion continuing in that manner - on the JDRF or other issues facing our entire Diabetes Community. We're all in this together.

Reflecting on how this all came to be, I found some interesting thoughts in a recent Mitch Albom column on Jan. 30 from the Detroit Free Press. He was discussing the recent issue about how some NFL players turned to Twitter to voice their frustration after Jay Cutler's injury that took him out of an important game. Here's what Mitch wrote:

"Who knew there were so many closet Shakespeares in there? All they needed, apparently, was a writing tool that fit in their pockets. They've got it now -- iPhones, BlackBerrys, Droids -- and here is where theTwitter/Facebook universe is taking us: All thoughts must be expressed. Filters are for weaklings. Say it loud, say it proud! And never have to look a man in the eye."

He continues, "How cowardly for these athletes to take apart one of their own from the comfort of their living rooms. Apparently people like (those athletes) feel just because they once held a football, everything they say about the game or its players must be accurate."

This transcends into the Diabetes Community, and the embarrasing display of interaction we've had with some our own. The wise Jeff Hitchcock recently noted that people often turn into their evil twins when communicating online.

I'm sorry that I allowed my evil twin to take over, and hope others are too and own up to it. We are all in this together, sharing stories and giving support while we ride this rollercoaster brought to us by diabetes. I want to refocus and start on the same page, so that even if we disagree on aspects we can still work together and combat those true battles that face our community - media inaccuracy, public misconception and unawareness, snake oil salesman and celebrity phonies who think eating less spaghetti and praying to the Bible will cure diabetes. We can debate reasonably and respectfully how we navigate the road before us and how we could find our ways to a cure. And we can help those friends who need us through whatever means is necessary.
Source: Steve O's Embargo blog.

Once, before the thumb became mightier than the sword, we were focused on that broad goal as one community. Let's get there again.

I'm going to unplug for a bit to find my Inner Chi. Maybe go listen to some #BluntLancet. Eat some bacon. Focus on those glittering unicorns and puppies. I'll be doing my own thing behind the scenes, just not as visibly in the blogosphere for now. Not sure how long, though. Then, count on my being back with the evil twin locked away in the virtual closet.

In the meantime, hope there's steady blood sugars on your end and I'll "see when I see you," or whatever the parliance is for that in this online universe.

Thursday, February 3, 2011

Trash


Pump Set Change + CGM Sensor Switch = Lots of Waste.

Every few days.

Glad I have curbside trash pickup every week!

Wednesday, February 2, 2011

Guest-posting on Groundhog Day

As it's Groundhog Day, you can find me visiting fellow D-Blogger Sarah Jane over at Sarahndipity. We had the chance to meet for the first time at the Roche Summit this past summer, and I was honored to have a post over there. So please, stop by and say hello!

This comes as we're bracing for what is being dubbed the Indiana ICEPOCALYPSE, or the national winter storm impacting a third of the country and hitting the Hoosier state particularly hard as far as ice and cold. Little snow in Central Indiana, like in Chicago or my hometown Southeast Michigan where they're tapped to get more than a foot of snow. But state government's been shuttered, federal offices and courts are closed, mail service postponed, schools and business closed, National Guard responding and shelters opened.

There's an inch of ice covering the tree in my front yard, and the grass is crispy icecycles that make the dog hesitant to go outside to do her business. As I write this later Tuesday afternoon, a freezing rain drizzle is coating my windows with a coat of ice on contact. Widespread power outages for a day or more are in the forecast as the winds pick up and ice-covered power lines are put in danger. Since we're a newer subdivision with power lines underground, our main worry is the fun fact that the electric boxes where these lines feed are strategically located at the two most accident-prone intersections nearby. The icy slick country streets should really help that along nicely... :(

At least this ICEPOCALYPSE came on my birthday Tuesday and gave me the chance to work from home. So that was nice.

We'll see what happens, but in the meantime I direct you over to Sarah Jane's spot where I'll spout off a little more about Groundhog Day. Who knows what the little furry Phil will see this year, but hopefully it's an end - sooner rather than later - of this crazy icy winter weather!

Oh, by the way: Please update your Blog Rolls as I've added my own domain name -> www.thediabeticscornerbooth.com. Simple, straightforward, easier to remember. And it's MINE. The old blogspot address will still bring you here and everything else is the same, just figured it was about time to join the bandwagon!