JDRF Kick-off speech.

It was an emotional afternoon on Tuesday. As I stated in my previous post, my father invited me to speak at the luncheon for his hospital's JDRF kick off luncheon.

As my dad said it best: "I didn't think it would be such an emotional day."

The JDRF representative who was there introduced herself and "the cause," and then played a video of a montage of interviews with local Las Vegas diabetics, none of whom were over the age of 11.

It was very difficult for me to watch these young children faced with the same disease that I have. I could relate to them on a level that I never thought a video could make me realize. Add to that the excellent production quality, wonderful editing, and slow piano music in the background, and it was The Perfect Storm of emotion for me.

I'm not much of a outwardly emotional person, but by the end of the video, my eyes were already pretty glazed up.

Next up was my father who spoke of the shock involved when their son was diagnosed, and how it has effected the entire family.

Hearing my dad talk was just piling on the tears.

By the time I got up to the podium following my dad's speech, I had tears streaming down my face. I was a mess.

It made it hard for me to read the words I had prepared, let alone even get out the few words I had to say. I won't count this is one of my most successful speeches, but I absolutely will count it as my most heartfelt presentation ever.

The speech:

What does it mean to be diabetic?

My father, whom many of you may of may not know is Michael Mericle, graciously asked me if I would speak to a group of his colleagues about what it means to be a diabetic. It’s an interesting question, and not one I’ve put a particular amount of thought into in my life. I’ve never thought much about what makes a diabetic unique when compared to someone with a normal functioning pancreas. The differences are subtle, and I hope I can share some of my experience with you.

Diabetes mellitus derives it’s name from the Ancient Greek term meaning literally “to pass through urine.” Diabetes mellitus is characterized by the loss of insulin producing beta cells of the islets of Langerhans.in the pancreas.

I’m talking to doctors and medical professionals though, and you already learned this in your Anatomy and Physiology classes.

So what does it really mean to be diabetic?

I’ve been a diabetic now for just over 13 years, or 4800 days.

That means I’ve tested my blood glucose using test strips somewhere in the neighborhood of 24,500 times.

I’ve given myself almost 15000 injections of insulin.

I’ve never been hospitalized.

I still have all functioning limbs.

I don’t wear glasses.

I have all my original organs.

I have full feeling in my fingers and toes.

I can run a mile in under 6 minutes.

I can bench press my body weight and I can squat over 300 lbs

These might all sound like trivial accomplishments, for a 31 year old, but they are milestones when you are a diabetic.

So, what does it mean to be a diabetic?

Being diabetic means going to bed with a blood glucose reading of 115 and waking up with it being 240 and not having a clue what happened over the course of the night.

Being diabetic means taking 4 units of insulin to lower the 240 blood sugar and testing 2 hours later to see that it’s now 215.

Being diabetic means taking 4 more units and testing 2 hours later and having a reading of 65, and realizing it’s going to be a long day.

Being diabetic means carrying peanut butter crackers and juice boxes with you all the time, and having to explain to your 3 year old daughter that those are “for daddy” – they aren’t snacks.

Being diabetic means waking up to a blood glucose of 115 and not going low overnight means today is going to be a good day!

Being diabetic means waking up at 3 am confused and disoriented and getting upset when you get to the fridge because you can’t find the orange juice you so desperately need to treat a hypo - because it’s hiding behind the Pepsi your friends brought over because they think diet soda tastes bad.

Being diabetic means arguing with a drink vendor at an amusement park on a hot day because you’re too indignant to pay a dollar for a cup of ice, just to keep you insulin from getting hot.

Being diabetic means a bed time glucose reading of 70 means you’re going to be up for a little longer than you wanted to.

Being diabetic means having some of the worst blood sugar days when you’re paying the most attention to your diet and your insulin…, and having some of the best when you could care less that you’re a diabetic.

Being diabetic means drinking straight vodka, not margaritas or mai tais.

Being diabetic means learning the hard way that foods containing sorbitol should be consumed judiciously.

Being diabetic means saying “SCREW IT – I’M HAVING THE MILKSHAKE” – knowing that it’s going to ruin the rest of the day.

Being diabetic means always holding out hope for a cure, but never really expecting it to happen.

Being diabetic means being aware of your body, the highs and the lows. Discerning when you’re “real people sick” and when you’re “diabetic sick.”

Being diabetic means you appreciate life differently, sometimes cautiously, but it means NEVER letting your disease control your life and never letting your guard down.

My sister has a writeup and pictures over hyah

Continuous Glucose Monitoring System - a first review

Well, it's been a week since I got Pumpified. It's time for me to sit down and share my thoughts. But first, an interesting item.

My father is the Director of Rehabilitation for a local hospital. Last week he received an e-mail from some of the other members of his hospital stating that their facility was to become a corporate sponsor for the JDRF walk, beginning next year. Since the annual JDRF walk is coming up here in Las Vegas, that means there is to be a group of people visiting their hospital as a show of gratitude for the involvement.

It was asked if there would be any of the directors who would be interested in meeting with these people during a luncheon and speaking session. My father, who along with much of my family, is a significant donor to the JDRF said he would love to speak, and - in fact - has a son who is diabetic and just that day is receiving his first insulin pump.

Low and behold, now I get roped into this and get to meet the people who are helping out one of my favorite (and most personal) causes. My father asked that I give a speech in front of a small-ish group of Executive Board and JDRF members.... yes, a speech. Me, who has a propensity to drop the f-bomb a little too frequently has been asked to be a representative of a community that I only loosely feel a part of.

I've already started drafting my speech, but it doesn't look like I'll have Mac's Keynote (their Powerpoint alternative) to hide behind, so I'll have to convert it to be audio-friendly. And not include any f-bombs.

So... back to the reason for posting. My first pump - and CGMS.

The weeks leading up to my pump were filled with a lot of anxiety, excitement and READING - oh my the reading. A very sincere HT to the many bloggers who have already shared, and continue to share their experiences with the pump.

First and foremost - the pump. Getting over the anxiety of the first canula insertion was ok - I have been around needles before, so that wasn't a big deal. What I wasn't used to was the hyper-sensitivity that I would have about the tube that is now connected to me 24/7. It's like I all of a sudden grew a fragile appendage which only existed to be bumped, yanked on, or worse - yanked out. I'm doubly paranoid about it because it is also my life line.

I wasn't prepared for this heightened awareness. I'm sure it will fade as I get more and more used to wearing my pancreas like a real man (on my pants).

My blood sugars have been remarkably good. I may need to adjust my basal rate slightly to remove some of the "creeping" that I'm observing, but overall, the spikes that I readily saw with the CGMS (as written previously) have lessened dramatically. I won't say it's perfect, as I can still jack myself up very easily by mis-counting carbs, but overall, the "direct injection" system seems to be MUCH more effecient in its delivery.

The CGMS. I have mixed emotions about this. The sensors for the Minimed system are ... well.. I'm not going to Splenda-coat this - they're shitty. I'm sure there's a lot of technology and a lot of hard work that went into the design of the transmitter / sensor combination, but seriously - GET SOME FUCKING TAPE THAT STICKS.

I've had the CGMS strapped to me for a week now, each sensor is designed to last for one week. As of an hour ago, I'm on my 4th sensor.

I attribute much of the problems I'm experiencing to the overall "wonky design" of the sensor. It is affixed at a point with an abysmally small amount of medical tape (did I mention the tape sucks?) and then is left hanging. Imagine having something about the size and weight of three quarters affixed to your body with a small wire on one side, and a piece of tape about the same size.

This "floppy" design means the wire is constantly moving in your skin, causing irritation, leading to a desire to rip the dastardly thing out after about two days.

I've been taping down the sensor with a combination of tegaderm and medical tape, but it still likes to wiggle more that I desire it to.

All things considered, the data that the sensor gives me is fun to watch. There are periods where its accuracy is lacking, but for the most part, it is within 10-20 mg/dl of my BG readings.

In summary: pumping good, sensor hurty and not sticky - but gives good data.

I give the pump a B+, and the sensor a C-. There is a lot of low hanging fruit that Medtronic could address with the senors. Hopefully the next generation of them will have a better design.

True stories

My daughter thinks that all phone can take pictures. Today she grabbed my desk phone, pointed the back on the phone at me and said, "daddy, say cheese!"

The people on speed dial were really confused.

-------

For the past six months, I have an old trash can that I've been putting out with the garbage every week. The sanitation employees still haven't taken it. They must think I'm a dickhead for putting out an empty trash all the time.

This must be avoided at all costs

The classy fans of the classy school of Michigan have decided that creating a fine fermented beverage with the namesake of their favorite coach was a good idea. This is an excellent example of why critical business decisions should not be made whilst drinking heavily. Those decisions are best left to an eight-ball of cocaine and disco lights.

Click to make larger, then show to your friends for a good laugh

I can only imagine this being similar in flavor to Lake Erie wine, which tastes of concord grape jelly mixed with Barbasol. Also, not entirely dissimilar with being a Michigan fan, the day after partaking excessively - you want to kill yourself.

I certainly hope this isn't the beginning of a trend of Sports Heros meets Alcoholic Beverages. If someone made a bottle of "Woody Hayes Fume Blanc" I would gladly purchase a case of it, and break each and every bottle over the heads of those responsible for dreaming up this idea.

'Twas the Night Before Kickoff....

Press play and enjoy whilst reading



(HT: O.S. of edsbs.com for the gem of a song)

Football is upon us. Like a slow molasses drip, or sitting in church quietly, or reading anything by Dan Brown - time is at a stand still and does not seem to pass.

Real football starts tomorrow.

If 2008 is anything like 2007, I fully expect to be able to drink gallons mescaline during the course of the season and still have it all make sense. Last season was bizarro football. It was opposite day. It was Bea Arthur posing for Playboy. The rule of the day was that there are no rules. As the Silver Surfer said whatever that forgettable movie (Mediocre Four?) was: "All that you know is at an end."

-An above average, but not spectacular Ohio State team makes it into the BCS Championship game.
-A two loss LSU team wins the SEC and the National Championship Game.
-No team was ranked #2 for more than 2 weeks.
-A 9-4 Florida team hoists the Heisman Trophy.
-Notre Dame loses to Navy en route to a 3 win season.
-Stanford beats USC
-The team that was voted #1 at the end of the season was he underdog for the National Championship game.
-Duke still sucks (hey, some things never change)
-Kansas is invited to, and wins a BCS game.
...and it all started with Appalachian State beating Michigan.

These are just the high profile examples of the season that was.

Tomorrow starts with the tempered dish of South Carolina vs NC State, or Baylor vs Wake Forrest, but it's real god damned football. And that means Ohio State is only a couple days away.

Here's to 2008, the Orange Bowl is 127 days away, but real god damned football starts tomorrow.

Update-a-palooza

Vacation time got the better of me. In the past month I've been on a week long trip to Ohio, a weekend trip to Reno, 10 days in Virginia Beach, and now another weekend trip to Reno. It's summer time, no one reads blogs anyway.

The trip to Virginia Beach was a great time. It was for my wife's family reunion, and it was really great catching up with people that we hadn't seen for quite some time. We took the kids to the beach or the pool daily, and Ms Corrine even ended up with some tan lines, despite the hourly slathering of sun screen.

I swear, the ocean made this. It was a sign.

After a week in VA Beach, Anne went home with the kids, and I went up to Fairfax to meet the people that I now work with. It was a short trip, but it was great to put some faces with names that I hear on the phone, or chat with on Sametime. The reigning comment was about my height. I think the GNR group is one of the shortest groups of people I've ever worked with. I felt embarrassingly tall while I was around them.

Now it's on to Reno for my Brother-in-Law's wedding. Which will be more family time and more good times.

That's my update and excuse for not writing in a nutshell. I'll write more later.

And for those of you who may be uninformed, "Connor is a baby."

EDIT: Bartomeo pics are now up - you can see them here

Continuous Glucose Monitoring System - a first review

I got fitted with a Continuous Glucose Monitoring System (CGMS) today. I've had it on for 6 hours. It's been working for 4 hours. It's already changing my life.

Before I get into that, let me rewind to 4 weeks ago. I am an avid reader about diabetic technologies, and have heard about the CGMS coming from several companies. Being a bit jaded, I decided that this was another technology that would come and go, and be a great idea that wouldn't last - as has happened to many good diabetic technologies.

I filed this technology in the "unicorn" bin - you know - the one that just will never exist no matter how bad you really want it to. I get sick of testing. I get sick of wondering if I have enough test strips. I get sick of sore fingers. I get sick of running out of test strips when I'm away from home. I get sick of just NOT KNOWING what my blood sugar is.

The last is the worst part. The neurotic feeling of "something feels off - is it my sugar or is it just because I'm human?" I test. Everything's fine. I feel a cold coming on. I test. The weather is dramatically different than yesterday. I test. I want to go to the gym. I test. I just got back from the gym. I test. I'm tired and want to go to bed. I test. I wake up in the morning. I test. I ate something that I don't normally eat. I test. I'm thinking about eating. I test. I ate 2 hours ago. I test

If you think this is repetitive, it's because it is. It's habitual. Testing is a part of everything. Physical activity, weather, eating, pre-eating, waking, going to sleep. Everything has a test associated with it. It's ritualistic. Nothing goes by without triggering an urge to test. I have to remind myself that I've tested in the past 2 hours, so everything should be fine.

It *should* be, but it isn't always. But testing more than every 2 hours is expensive, even with great insurance. So, I ration the tests. Unless I'm not feeling well and I can confirm it is blood sugar related, I have to hold my self back from testing. It makes me nuts - not knowing. Having blind spots. Not seeing trends well.

From the first time I heard about the CGMS, I thought it was amazing, inspiring, hopeful... it was the Barak Obama of technologies for a diabetic. It was what I wanted more than a pump. I know how insulin works in my body, so pumping was always only of marginal interest to me. If anything it removed the social stigma of pulling out needles at a meal with people that I've just met. The only compelling reason to get a pump was to make other people feel better. Not me.

But the CGMS... that is life altering. For those who are playing the home game and aren't familiar with the CGMS, it's a small sensor, about the size of three quarters stacked up, and it contains a small needle. This needle and sensor is "infused" into your skin and taped in place with medical tape. The sensor then transmits a signal every five minutes to a receiver which gives you an instantaneous readout of your blood sugar. There are only 2 times a day that require testing manually, and those are for calibration of the sensor. That's it.

I read about this and immediate wanted to read "user reviews." The initial reviews were compelling. The people who had them for trials didn't want to give them back. People who were issued the first releases of them couldn't wait to upgrade. People who had upgraded espoused the virtues of the latest revision.

That's it. I'm sold. This is a proven technology and it's exactly what I want (it's been out for over a year now). I need this.

I spoke to my doctor about this, and he referred me to a different doctor. I explained to him, that I wanted a pump with an integrated CGMS. He explained the benefits and problems with the pumping approach. Truth be told, I couldn't care less about the pump, I really want the CGMS. I need the CGMS. I have a neurotic need to know what my blood sugar is at all times, and must have the CGMS.

So, I've had the CGMS inserted into my abdomen now for 6 hours, and I've had to remind myself 8 times that I don't need to test right now. I just need to pull out the receiver and look.

I will have this CGMS for 1 week (it's a trial while my doc helps me figure out my carb to insulin ration - better carb counting, basically). I've had it for 6 hours, and can't imagine giving it back. If it weren't for the fact that I know I'll have one of my own in a month, I would never give this back. I'd steal it and move to Canada where I can get infusion sensors for free.

I've had this for 6 hours, and I'll never have to not know what my blood sugar is again.

This is life altering. This is a good day.