Sunday, February 28, 2010

What a load of...

This post is written in honor of this past weeks's Health Care Reform Summit where President Barack Obama and Congressional leaders came together to discuss differences and agreements. With my work deadlines, there wasn't a chance to watch Thursday but instead I spent much of Saturday watching it on You Tube, where it was divided into Part I and Part II. Aside from all the political tugs of war, there are a few elements that should be central to any plan impacting the Diabetes Community.

First, we need to better distinguish between the different Types of Diabetes. We have Type 2, which can surely have the umbrella phrase "Diabetes" (I am serious. And don't call me Shirley.")

But, we'll no longer have Type 1, a term that too often gets lost in the abyss of the worldwide epidemic of Type 2. Instead, those of us who've been insulin-dependent since childhood or have reached a stage where we now must take insulin to survive, will have something else:
"Catastrophic Ruthless Attack on the Pancreas." Also known as: CRAP.

We don't know why it happens, but suddenly we forced to live with this chronic condition that is uniquely a load that must be managed daily. Sadly, we must clean up or manage the mess with dollar bills that we never ever have enough of.

While clever and funny, the CRAP concept isn't mine. It first came up in a TuDiabetes Discussion a few years back. Bernard Farrell gets props for coming up with the term. But it seems to be quite appropriately utilized with all the crazy misconceptions about overall "diabetes" and that's even playing into the health care reform debate now.

There's been much debate in the Diabetes Community lately, and through the years, about renaming this chronic condition because of the generalization and misinformation out in the mainstream. The ADA likes to tout what it's doing about Type 2, but in many ways it helps feed the misconception. Its unfortunate, but the vast majority of people are very ignorant regarding diabetes and such statements are indicative of that ignorance. In March 2007, Medtronic Minimed hired Harris Interactive to do a survey that found 80% of the of the 2,436 American adults surveyed could not distinguish between Type 1 and Type 2. Even more troubling was the finding that nearly 67% of those who responded to the poll incorrectly believed there is already a cure for Type 1. Other key findings:

- 51% knew there were two types of diabetes
- 36% thought there was either a "type 3 or 4" diabetes
- 25% believed that proper diet could "cure" or "reverse" the disease
- 32% believed exercise could be a "cure"

So, this makes the case for CRAP. While it cause problems distinguishing between CRAP and #2, that's a problem we can leave to the ADA and those in Congress who dole out enough of their own CRAP on a regular basis. It fits right in, and clearly illustrates why our CRAP should be weaved into their CRAP,

That's the first point for reform.

Secondly, there's a lot of fuss about pre-existing conditions. Everything under the sun appears to be lumped into this category by insurers, such as backpain, acne, etc. So, I say we embrace it.

We create new ones that should be covered:
-Chronic Health Insurance Headaches, or CHIH.
-Health Coverage Emotional Distress, or HCED.

Full coverage. The logic is simple for insurance companies to understand: You create the problem, therefore you pay for it. Specific reasons on how the Insurance Industry creates these conditions can be clearly seen here, and here.

Of course, the way the system currently works, even though it SHOULD be covered, it likely won't. So, we take it a step further.
We throw CRAP at them to make them listen. We can hire some monkeys (Congress men and women??) to toss it their way, and make them see why our CRAP-PY conditions and subsequent CHIH and HCED are so smelly and undesirable. Our CRAP can clog the toilet of the health care industry, but together we should have a chance to work with insurance companies and lawmakers to plunge that big toilet.

So. That's that. Here's to Health Care Reform, as long as I am a part of the solution and it's not left up to the Federal Government or Insurance Industry to inadequately plug things up or create more clogs.

Wednesday, February 24, 2010

Victory is Mine!

My head is held up with pride today, and I'm smiling internally.

Thanks to the 15-month old, multi-state Insurance Company Victory that's finally come my way. Finally.

It all began in January 2010. At least, that's when the issue surfaced and came to my attention.

Upon receiving a bill dated Jan. 5, 2010 in the middle of the month, I learned about a billing dispute for an order of One Touch Ultra Test strips. They were ordered Dec. 29, 2008. Yes: 2008. I'd received that box of strips without any problem within a few days of that order, and more than a year later this was the first I'd learned about any problem. First issue.

The second and most significant concern came from the tab at the bottom, which pointed out that I owed $675 for my three-month supply of mail-supply strips.

At first, I laughed. Really, I did. The words "WTH" escaped my lips, along with a head shake, but I was at that point really more amused than anything. It's sad that I've dealt with these insurance company nuisances way too often, and they've almost become expected. Still, it always is interesting to see what new and creative ways they can screw up the most simple of items.

Investigating the bill, I see that "insurance pending" is $0.0. So, for some reason, my insurance company at the time denied in full the claim for these covered test strips. So, this supplier was simply billing me for the amount owed to them. Further analysis showed that the claim was first submitted 4/09/09 (more than 3 months after my order) and rejected. They tried again 6/9/09 and again the insurer rejected the claim. Apparently, no other action happened - if it did, it wasn't reflected on this statement.

At the time, I had insurance coverage through my wife's work that had been in effect from our marriage date of Sept. 2005 to April 14, 2009. Clearly, I was covered for something ordered in late 2008. After that insurance, I was immediately covered by my own work's policy for several months, until she was able to get onto another plan through a different employer and my coverage began there.

Now, my mind revolved around the two submitted and rejected dates in April and June 2009 - the first said it was submitted to Anthem, which was NOT the company I had at the time. Actually, my insurer then was Blue Cross Blue Shield of Michigan. While they fall under the same Wellpoint/Anthem/BCBS network, they all emphasize how seperate they are and how one is not related to the other as far as coverage goes. However, the supplier may have tried to submit this claim to the wrong company and it was denied. Then, two months later after my insurance coverage had changed, they tried again and were denied.

"Morons," I muttered.

Within a day or so, I phoned the supply company in Kentucky. Person A assists me. Explain the issue of receiving bill, not hearing anything before this since my order, and clearly pointing out that my insurance at the time has since changed twice. The woman on the phone explained that it had been submitted, and told me I'd have to contact my insurer Aetna about why coverage was denied. First, I didn't and have never had Aetna as she stated. Apparently, she looked at the screen and saw an "A" company and then entered that into the notes area while speaking with me. (WOW... And we wonder why...) Person A then declines to tell me what insurance information the Supplier had submitted, saying that it's "correct" and whatever policy information we have on file.

Um, no Lady. If you can't even realize there's a difference between Aetna and Anthem and screw that up, how can I possibly trust you to get anything right? Billing Error on your part, not mine.

 I tell her this is important, and likely a cause of the billing issue - since my policies had changed, and the Info on the statement was to the wrong insurer. After hearing that her supervisor probably wouldn't be too happy to hear she was coming between Her Company being paid, she became more helpful. Sure enough: the insurance information was wrong. They'd somehow managed to combine the letters and numbers of my two policies, the one in effect in 12/08 and the later one that began after 4/09.

Idiots.

Person A "corrected" this and said it would be "resubmitted" for review. I again emphasized that they needed to contact the correct insurer at the time of order, not my current one that's different. It wasn't clear whether Person A actually understood this.

This was also about the same time I needed to order more test strips, but I decided to not add to the mix and confuse them even more, so held off on that for another day until this was more fully resolved. That ended up leading to another issue, which isn't exactly relevant to this tale (but that's been resolved in the meantime, too).

Anyhow. More than a week went by and I hear nothing. So, I phoned back.

Person B has no clue who I am or what I'm talking about. I recap it briefly, and she almost exactly reiterates the phone discussion with Person A. It all begins again. She promises to get right on this. A week later, I phone again after hearing nothing and leave a message. Two more messages within the next week, and nothing in response.

At this point, it's Groundhog Day. My Blood is Now Boiling, elevating gradually from that Initial Headshake and Laugh to Simple Annoyance to this point.

Finally reaching Person B again, I learn that BCBSM denied my claim most recently on Jan. 12, saying I wasn't "eligible for benefits" at that time in late 2008. Assuring her that this isn't my mistake, but one between Them and the Insurance Company, they should clear up in order to get their due money. Person B explained that she was graciously assisting me instead of just leaving it to the Direct Billing Process while I work it out with my insurance company.

Even though it was initially their mistake in submitting the wrong insurance policy numbers.

Once again, I explained (again) that I was not covered by Anthem at the time, but by BCBSM, and even though they're owned by same parent company, we're talking two different entities. I had in my hand my Certificate of Continuous Coverage from BCBSM, stating specifically that my coverage extended from 9/05 to 4/09 - clearly the Dec. 08 date was covered. Faxed it to her. Person B was baffled upon seeing my documentation, not understanding how it's being denied when I was clearly covered. Person B tells me she'll have to talk with her supervisor, re-submit to an insurance company supervisor, and that it could take up to 30 days.

Fine. Whatever. This was Feb. 5

After reading recently about Kerri's insurance coverage headaches and others' comments, I decided to check in and see where this stood - the 30-timeline wasn't up, but I hadn't heard anything and was curious.

On Tuesday, I phone Kentucky and reach Person B. No clue who I am, but I recap the issues and she recalls it all. Checks, and says nothing. She decides to push further - I'm on hold for 10 minutes in the middle of my workday. Eventually, she returns and tells me that Anthem/BCBSM has approved the claim. Instead of the total $675, the insurance company is paying $314.15 and my co-pay will be $34.90. This is all thanks to a contracted provider discount system, so that's why it's so much less than the full price.

Person B tells me that she is pleased to have gotten this resolved, and still can't understand why BCBSM or any Insurers just reject claims initially. They put up a fight, and most of the time, it's without merit.

(Sigh. Hello, choir. I'm your preacher...)

While this is one small example of the routine headaches we PWD face in our Living With Diabetes Adventures, it should be fairly noted that: my co-pay comes out to about 11% of the discounted total, which is roughly 46% of the actual total cost for these strips. Overall, my former insurance plan allowed me to come out of this all by only paying about 5% of the total total. This is incredibly important. While Frustrating and Much Too Convoluted & Burdensome, it is beneficial and needed. This is why our Congress and leaders must carefully examine this whole process when considering reform.
So, that's settled. Finally. After all the headaches that shouldn't have been necessary, I win. I like winning. To quote Stewie Griffin: "Victory is mine!" 

Saturday, February 20, 2010

Politics of Diabetes

Two days, two meetings, two lawmakers... One message: We need continued federal funding for Type 1 diabetes research that can enhance our knowledge about this disease and pave the way to a cure.

That Diabetes Advocacy Work was in full swing this past week, and the message from both Sen. Evan Bayh and Rep. Dan Burton was the type of response you'd hope to get from anyone, no matter what their political beliefs may be.

Both 1-on-1s were a part of the JDRF Promise to Remember Me Campaign, in which I'm helping on to secure meetings or quick meetups with Congressional members. Goal: To thank them or pursuade them for their support on legislation renewing the Special Diabetes Program that is run through the NIDDK and helps fund both Type 1 research and also Type 2 treatment and education programs for Native American populations. A JDRF priority is to get a multi-year renewal before this program runs out at the end of 2010, resulting in no more of the $150 million per year funding that would be a 35% cut in federal support of diabetes. This would be a $200 million per year extension, for five years.

House Bill 3668 is pending, and the Senate is prepping to unveil one of its own soon.

Advocating for this legislation is the Promise To Remember Me Campaign, which has a goal of 400 meetings nationally and 298 by the end of February. While an official current count isn't posted online at this point, the number is somewhere right around 270 or so. You can check on any conducted, scheduled, or future meetings in your area here. The JDRF also needs more people to help volunteer just a little time to help setup these important meetings.

On message, these gatherings mean translating the daily task of blood test monitoring, CGMs, prescription need, health care costs, insulin development, cure research, and years of Living With Diabetes into what is a quick-punch message to the lawmaker taking the time. You have to not only secure a few moments on their "all busy legislative schedule" through an assistant, but if that happens you have to be concise and on point and somehow relay a "bottom line" about why they should support this, if they don't already. So is the Politics of Diabetes, where you must recognize the patients' perspectives are balanced or even trumped by the Big Pharma or Company Business interests, while balancing the financial picture with overall public policy implications. Why should they care, and what does it mean if they don't? Or if they can't get past the political bickering so prevalant in Washington D.C., where even the most moderate and central of lawmakers can't move out of the mud. Children, the face of Type 1, are easy to use to help send the message - but it takes all of us to make the message resonate for what it means to everyone.

On Friday, we gathered in downtown Indianapolis for a meeting with Democratic Sen. Bayh, who many may know recently announced he wouldn't be returning to the Senate once his term ends at the end of this year. Though he's out, Bayh's support in 2010 on this funding is important and he has a chance to be a part of this as a legislative priority. This meeting was initially set for December, but the pending health care reform bill in the Senate at the time forced him to postpone. We weren't sure if the resignation announcement would impact the meeting, and were pleased that it didn't interfere. He spared about 10-15 minutes in the early afternoon, running a few minutes late as he came right from the airport. While overall unfamiliar with diabetes based on questions he asked, the senator seemed to listen and express an interest in what was being said. Even kept a sense of humor. About 40 people attended, mostly children and their families but also some adults who've been living with Type 1 diabetes for as many as 45 years.

The Indiana State Chapter's JDRF Advocacy Leader Cindy Lorentson Cook thanked the senator for his time and spoke about the need for his support on the Special Diabetes Program, which several of his colleagues are supporting following similar meetings. She explained that House Resolution 3668 has been introduced and is pending on that side of Congress, while Sen. Byron L. Dorgan, D-North Dakota may be introducing a similar piece of legislation in the U.S. Senate once the week-long President's Day break comes to a close. She asked if we could count on his support, to which Sen Bayh responded: "How about a one-word answer: Yes." Applause ensued.

While not all present could personally tell their stories because of the senator's busy schedule, many individuals brought "leave behinds" in the form of letters, photos, or personal items telling the senator about their Life With Diabetes. A few families (such as the Brown family) told him about their challenges in Living With Diabetes. Sen. Evan Bayh asked several questions, such as whether diabetes is mostly a childhood disease and if it's linked to family connections. He also indicated he was aware that some prominent athletes are diabetic, such as Chicago Bears quarterback Jay Cutler. The senator also said that while he didn't have diabetes in his family, his mother died from breast cancer and the understands and appreciates the challenges of chronic conditions. Particularly those involving children. After the meeting, the senator posed for a group photo taken by JDRF - Indiana Outreach Director Liz Held.

A second more personal meetup came Saturday, with Rep. Dan Burton at one of his town hall meetings. Attending with me were father and son, John and Joey Lopshire (the latter is a Type 1 teen since Feb. 2006). We thanked him for his support on this in the past and offered our appreciation for his continued work as part of the Diabetes Congressional Caucus. He asked some personal questions about us as PWD, as well as general questions about causes of Type 1 and the relationship/differences between Type 1 and 2. We discussed the ongoing important research and clinical studies funded by these grants. He offered to personally call or write a letter to the NIH about this, and also noted that he's eager to encourage his Congressional colleagues to support the introduced H.R. 3668. We posed for some photos, stayed for his town hall meeting, and then also provided him with one of JDRF - Indiana's newly-printed adult toolkit brochures to brush up on Type 1 during his plane ride back to Washington D.C. later that afternoon.

Of course, the D did try to swoop in and prove that it was present - like a child perking up when hearing his or her name called. In preppring for the first meeting with Sen. Bayh, an Unexplained Low of 48 came up that morning. Impaired my ability to read a news release about a lawsuit. Stopped me from combing through a federal court document. Canned the coherent conversation carrying on between myself and a colleague. Glucose tabs and a yummy homemade breakfast treat brought in that morning took me up to safe levels, just in time to handle a few hot-topic items that came up at work prior to the Bayh meeting. A month earlier, I'd shaken the senator's hand at the federal courthouse up the street while covering his announcement of three judicial nominations, and experienced a Low that early afternoon as well. I've now started wondering if Sen. Bayh actually causes Low Blood Sugars, rather than the High Blood Pressure the rest of Congress creates for any American....

Overall, this was a productive couple days of lawmaker meetings. Yes, we need national reform in our health care system and many aspects must be addressed. But this is about the federal funding for treatment and research, among overall educational and outreach efforts for the Big Diabetes Community.

In my opinion, the Indiana lawmakers' support is critical because they represent a state where you have the likes of Eli Lilly, Roche Diagnostics U.S., Anthem/Wellpoint, various medical device-maker interests, and an emerging biotech industry. These businesses are powerful players in the Type 1 research world, and programs they start or participate have incredible impact on millions of us within the Diabetes Community worldwide. Sen. Bayh's voice in this, as well as the influence of Republican Sen. Dick Lugar, can play a powerful role in convincing other senators why this support is so critical. Every moment we have to bend their ear counts. Same goes for the Reps, who represent chunks of the state but are integral to making sure they know the JDRF and what the true impact of these federal funding initiatives truly mean for us. (Hint to all Lawmakers who may not have had JDRF meetings or are uncertain about supporting the SDP).

So, the Advocacy Work continues...

Wednesday, February 17, 2010

Diabetes Care in Prison

This post is spawned by Shannon's advocacy over at LADA-dee-da, who writes about the 26-year-old Type 1 diabetic Roddy Dean Pippin who's languishing in Texas prison without what appears to be adequate medical care. She outlines his situation in two posts, initially here and an update here, and those have been echoed in other spots online.

Apparently, he stole someone's cattle when he was 19. In Texas, that's a felony crime with a hefty penalty. He became a "cattle rustler." As a city boy from the Detroit suburbs now living in the Indianapolis suburbs, this is somewhat amusing and mind-boggling to me. However, it's serious and they take it very serious there. And the situation Roddy has found himself in is so incredibly serious. No parole, but staggered prison terms as allowed by state law - eight years executed time, staggered over four 2-year periods. One of the court rulings from a Texas appellate court, dismissing his appeal, can be found here. This complicates the situation, since Roddy since age 7 has had a brittle diabetes and experiences the Somogyi effect, which makes his blood sugars bounce incredibly and can range anywhere from 11 to 600+. Reports are that Roddy's prison care has been substantially subpar, apparently. He regularly experienced Hypos and even went into comas at times, and prison paramedics were summoned. This has taken a toll on this body, no doubt.

In a news release from a PR firm in Oklahoma, Roddy states: "I thought I was sentenced to be incarcerated, not killed."

Multiple reasons might exist for why this isn't happening: budget constraints, being able to keep on qualified nurses or medical professionals, balancing the inmates' issues that have merit with those that don't and may have attention-seeking/dubious motives, or the overall prison culture. Hard to know what, if any, might be factors. But regardless, adequate care must be given in those places to everyone, even those Imprisoned People With Diabetes who only represent roughly about 5% of the nation's overall prison population. As a daily newspaper reporter for a few years, I saw the general county jail population and know what's allowed and not allowed. I've been inside state prisons and reviewed conditions, rules, laws, and often receive inmate letters detailing their specific situations. There are certain things that must be done, and from my review of what Shannon writes, those things don't seem to be happening here. Even those who've broken laws and are serving their time have rights, and must be given adequate medical care that doesn't endanger their lives. That's a foundation of who we are in the U.S.A. and yes, even in that place with the hats and cattle called Texas.

To be clear, Roddy Pippin did commit a crime and he's being held responsible for that. No one disputes he should be held accountable and serve his time. But there's a basic argument here about the punishment fitting the crime. From what Shannon writes, he takes full responsibility for his actions and doesn't deny what he did was wrong. None of that diminishes the fact that it appears to be sub-par health care in prison.

Shannon writes that she's in contact with Roddy, communicating her efforts to raise awareness of his situation and how she's not going to let anyone forget about what's happening there in Texas. She has it exactly right: We must not allow this man's story to go untold - as a Diabetic Community and as a society. These types of situations are becoming more common nationally, and there are any number of lawsuits should one choose to browse federal court dockets. Police agencies throughout the country have also faced challenges for their treatment of PWD, who thanks to Lows that we know all too well appear to be drunk, belligerent, non-compliant. Individuals have led police on car chases in these states, and have as a result been tasered, beaten, shot, killed. It's tragic. Maddening. And we must spread the word about these situations so that they can be addressed, and any gaps in needed services or resources can be filled.

He has a TuDiabetes page, a Twitter account, a Website, and there are news stories all over the place online. Please check them out, and do what you can from your place in the world to tell this story.

This is an important task for the Diabetes Community. Just as important as our advocacy in educating and spreading awareness about the varieties of diabetes. Telling our stories to Big Pharma and Others who make and sell those life-saving supplies we use each day. Meeting and working with Congress to fund diabetes research for a cure, diabetes management tools, and overall health care reform that's so incredibly important. Now, it falls on us to help get Roddy's story out there to the mostly uninformed or misinformed general population and struggling general media, which must be spoon-fed journalism and manually forced to chew before they realize what's in their mouths. Through the Diabetes Online Community, I hope we can make a difference in this important role as we try to do in other avenues of D-Life.

Tuesday, February 16, 2010

The D-Olympic Games

This post is in honor of the 2010 Winter Olympics XXI in Vancouver, which run from Feb. 12-28.

Everyone who endures Living With Diabetes knows it can be just like navigating a never-ending sporting event. where you're essentially competing against your own body in order to get the best score. Just like any real-life athlete, playing the game means you must have endurance, patience, training, diligence, and discipline in order to even come close to achieving your goals. Every day means mastering the hills, ice rink, or just getting a little puck into the Net between 70 and 120.

In the regular Olympics, you have Cross Country Skiing. Jumping. Curling. Figure Skating. Hockey. Luge. Snowboarding. The incredible athletes compete for best scores and the highest possible medal. For the D-Olympics, us PWD have an equally challenging array of sporting events to navigate in order to try and get to that ultimate Golden A1C medal, every few months. Like any sport, we have our coaches - Endos, CDE, Dietician, PCP, Specialists for Eyes, Feet, Nerves, etc. We also have our Support Team and Fan Base - family, spouses, friends, co-workers.

We also have our own Torch Bearers, who keep the flames lit and are incredibly visible in promoting and advocating about diabetes: Mary Tyler Moore, Nichole Johnson, Nick Jonas, Kerri at Six Until Me, George at NinjaBetic, MannyH at TuDiabetes, KellyK at Diabetesaliciousness, Amy at DiabetesMine, Children With Diabetes, and The Diabetes OC through Allison and Gina's work. (just to name a few of the MANY).

Over at TuDiabetes, Danny has a post about the 1st annual D-Olympics that Nel from Canada lit the torch for initially. He describes an event called The OJ Slam & Insulin Cocktail biathlon. Each participant must start the race with a blood sugar less than 70 mg/dl. During the event, you must drink a 16 oz glass of Orange Juice, resting after that until blood sugar levels reach 175 mg/dl and then as quickly as possible giving yourself 1.5 units of insulin. Sounds easy right? This must all be preformed while blindfolded and in three feet of snow. Penalties will be assessed for any OJ that is spilled, not waiting until your blood sugar reaches 175 mg/dl and not using an alcohol swab when taking the Novolog shot of insulin.

AWEsome, Danny.

In quickly Googling "diabetes" and "olympics," I also stumbled across this outstanding 2009 blogpost by Brensdad at Diabetes 360 that can't go without mention here:

* 100m Set Change: Participants must sprint 50 meters, pick up a vial of insulin, and sprint back. The winner is the first person to change their infusion site and clear all the bubbles from running with the insulin.
* 200m Pump-Dangle Sprint: Participants must run 200 meters with their pump dangling between their legs, just like when your pump detaches itself from your pocket and makes a run for it.
* 400m Insurance Hurdles: Participants must sprint 400 meters while clearing a hurdle every 50 meters. Hurdles shall be made up of insurance agents, appeals paperwork, and DME exemptions.
* 100m Hypo-Treatment: Participants must bolus themselves down to 60 mg/dl, and then run 100 meters to a juice box. First person over 80 mg/dl wins!
* Syringe Darts: Participants must, using only a mirror, throw an insulin syringe into a small marked target 10 feet behind them. The target represents an area of skin not scarred by infusion sites.

He also makes a funny point, that D-Parents have their own unique set of D-Olympic Events to deal with: Test a 3-year old In Middle of Night. School-Nurse Roping. Testing in Pitch Dark. Make a Kid Drink a Juice. Hide the Chocolate.

Another great one.

I've participated in so many of those D-Olympic Events through my nearly 26 years of Living with the D. With the Hoosier Winters, just like in Vancouver, there's snow and that is a theme in the D-Olympics. Recently, I've endured the exciting Ice Melting and Extra Shovel Passes that can bring on Lows and Rebounding Highs.

Regardless of the event, many of the D-Olympic Events have a similar theme. We can plummet fast, just like the Luge. Speeds can be slow or fast, sometimes allowing us time to adjust and correct our course. Navigating twists and turns, and you need endurance, speed, and patience. In many ways, it's like trying to keep your balance amid so many obstacles trying to knock you down. For example, on Friday, an unexplained Low in the morning hours forced me to crash quickly and score a 34. It was like rushing down a steep ski slope and crashing into a tree. Luckily, I got back to my feet and what followed was the Sky High Jump to 334 (within three hours). Just one personal example of my days in the D-Olympics.

Enduring The Games can be challenging, but we strive for those best qualifying scores every day in order to reach those coveted A1C numbers. Sometimes, we get honors like the 25, 50, or 75 year awards from Lilly and Joslin. Or the various online patient-blogger awards that are becoming more common. But despite all the work, the Highs and Lows, and challenges in achieving that Tight Control that will take us to the D-Olympics, it's a part of life we can't get a break from. We're always training, always enduring, always playing The Games. This is a 365-day journey every year that can be both frustrating and rewarding, and essentially puts us at the same level as any of the best athletes in the world.

(It's important to recognize some of the Type 1s who are in fact real Olympic athletes, such as cross-country skier Kris Freeman in 2010 and Gold Medalist Gary Hall Jr. who participated in three Olympic games. These PWD deserve even more credit, in not allowing D to get in the way of their athletic achievements.)

Friday, February 12, 2010

Diabetes "Ninja" Community

This post is devoted to George (a.k.a NinjaBetic, SuperG, Mr. George Loves Bacon III). He is an inspiration, as is the rest of the Diabetes Online Community that motivated me to enter this virtual universe, to once again become a Diabetes Advocate, and tighten up management of my own overall health and diabetes. In a word, G and the D-OC motivate me to be Ninja-Like in tackling the Daily Diabetes Adventures that can go from Low to High and everywhere in between. That's the 21st Century world we live in, and we're better for it.

(Warning: Next section is link-heavy... But worth it!)

Now, in honor of this NinjaBetic-inspiration that's led me to speak often about being a ninja, Suzi created a cool bean-bag like Ninja for me at Christmas 2009 (The XmasNinja). Button eyes. Felt body. Teeny Tiny Beans and Stuffing. Not only does he look cool, but he generally fights off Diabetes Dangers with cool little a Lancet NinjaStar and Lancet and Pump Tubing Numchucks. Appropriately, he's named Lance after the wonderful Lancet Tools he uses to fight diabetes. He's AWEsome! Prepares, cooks, and enjoys BACON. Plays with the dog. Magically and stealthily appears in strategic places around the house - kitchen stove, on the dining table near those tempting ham rolls and deviled eggsnear the CGM and dangerous carb treats, on Xmas Tree branches, in laundry basket (No wait, that's the Shadow Cat).... He even posed as a Ninja Gangster from Detroit and sported an eye patch and became a D-Ninja Pirate in honor of Kelly. Realizing how cool this one is and that this was all because of G, we decided to clone Lance and make new versions. Three ensued. Early in the week, we shipped Clone 1 to California. He arrived with success, complete with photo, Ninja D-Weapons, and Bacon-Flavored Toothpicks. In response, George posted a cool Vlog on Friday recognizing this surprise gift from Indiana, and the overall Diabetes Community.

Here's the video, straight from NinjaBetic's B.A.D Blog:



Thanks for the shoutout, G. We appreciate that. But more significantly, we appreciate the influence you and Everyone Else in the D-OC has had in the past two years. Ths Community has been an incredibly life-changing positive influence in my life already, something that's difficult to actually put into words. Touching on this Community are posts from Kerri at Six Until Me and Kelly (K2) at Diabetesaliciousness, which go to the heart of this as does NinjaBetic's Vlog above. I'm sure there are more on this, and I apologize for not remembering them all and mentioning. But the point is that they all illustrate why I got into this whole online experience.

Starting out as a D-Blog lurker, I became more connected and motivated to start regularly blogging about my own D-Life Adventures. To tell stories and share my experiences, as a way not only to help myself vent and be accountable, but also to motivate, inspire, educate others and hear those people's stories that can do the same for me. Maybe, to make some kind of difference in this little Corner Booth of my world. That's happening and I look forward to the Continuation of Community, with virtual knuckle-bumping ("clinking" or "pump-bumping") and possible meet-ups as timing and travel allows.

So, with all that in mind, I offer a huge Thank You to NinjaBetic, and Everyone Else. This is in honor of YOU.

Wednesday, February 10, 2010

Our Cars Have Diabetes

Ok. Not really. But it sure seemed like it today.

You could have sworn that my wife's little blue Chevy Cavalier and my fire-engine red Ford Escape SUV were Living With Diabetes, complete with unexplained Lows and Battles with High Blood Sugars.

All thanks to the snow-enduced driving adventures in Central Indiana.

For the record: the snow wasn't bad in Indy. Not like D.C. or the East Coast where it trapped people inside (Hi LADAdeeda!) and effectively shut down the federal government. Plus, we're from Michigan so we know firsthand what kinda punch snowstorms can pack with lake effect and aggresively unsafe drivers tossed into the mix. What we had here was fierce wind, creating massive snowdrifts overnight that created the whole plot to this story.

See, Suzi drives the Cavalier. It's a good car, but low to the ground. As a result, the massive snowdrift combined with the middle-of-the-night snowplowing resulted in a pile of snow that was TOO HIGH for her car to manage. It got stuck. No matter how much the tires spun and engine revved, there was no moving. Much like we People With Diabetes feel when our sugars get Sky High - like we're stuck in the mud, er snow.

Enter Me. Confronting the icy-cold wind. Digging her car out. Manuevering it into the two-car garage. To get us both to work, we turned to the more weather-handy Escape on my half of the garage and easily ventured out over the drift and onto the hardly-plowed roads. (Note: she works at A, I work at C, and we live at B. So the normal 20-mile roundtrip commute for each of us was transformed into 60 miles.)

Smooth ride, for the most part. Just slower, overly cautious, and two hands on the wheel to navigate the hazardous interstate with several slideoffs and at least one overturned SUV. Slowly, the frustrations of that High melted away (unlike the snow) and eased into optimism that all would be right in the world again.

This was about 8 a.m. Of course, this meant I needed to be the one to later swing by and pick her up. No problem...

4:45 p.m. I leave downtown Indianapolis, en route to Franklin - a 20 minute drive or so. Hardly any more snow had fallen since last night, but the wind remains brutal and is blowing it around everywhere. As I journey southbound on Interstate 65, I begin to feel what can only be described as an uncomfortable feeling.

Shuddering. Shaking. Inability to follow a straight line. Sweating. Hazy Vision. Hunger, a result of an UnFull Fuel Tank. Fear that someone could get injured or damaged because of this current State of Health.

This was the Escape. Not me. (I tested earlier and I was 186 mg/dL after a later lunch.)

As I tried to pinpoint the problem of my vehicle, and reassured myself that I wasn't Low, my mind mulled the possible causes: Low Air in Tire? Unstable wind? Remnants of the High Snowdrift In Our Driveway. Hungry for fuel? Too much exercise thanks to the speed?

Hmmm. Sounds familiar...

Pulled over to inspect. Just like I do when having a Low, I turned to the appropriate tools a status check. Still plenty of fuel - half a tank. Not yet time for oil change. Tires were fine. No snow left over. Popped the hood, and saw air filter was fine. Got out the maintenance logbook to check whether it was time for anything specific, but saw all appeared to be in order. As far as I could tell, there was no clear cause for the shaking steering wheel, shuddering vehicle body, non-working windshield defroster that resulted in "sweating" and unclear driving vision.

Again, so familiar...

Arriving home after scooping up Suzi from work, we observed that the Continuously Taunting Wind had once again stolen all of the shoveling work I'd done earlier in the day and created an even Higher Snowdrift. Mother Nature is mocking me. The SUV made it through the drift, up the iced-over driveway, and into the garage. We then journeyed outside to battle the High Snow once again, with the thought of increasing the basal rate (er, rocksalt content) for the next day to get everything back to normal.

Recapping: there was a High. We tried to conquer it, but in doing so created a Low that led to a Bottoming Out. Need for an Emergency Ride To Safety Lifeline. An afternoon of Blowing Wind, which led to another Low with Shaking, Shuddering, Weaving, and Blurry Vision. Ultimately, Tested and Found No Explanation. Despite the day's efforts already, encountered and fought a New High with the plan to put a Temp Basal into effect. Logged it all, in order to share with the appropriate licensed professional to help fix whatever is causing the problem.

Of course, this all happens as the Rest of Life Goes On.

Reflecting and pondering, I can only conclude that Our Cars Have Diabetes. It's so logical. Makes perfect sense. Really.

Sometimes, just like us People With Diabetics, our CWD get stuck in the snow and unable to move because of a High. We go Low. Often feel as though we're going to swerve off the road because of the Fluctuating Winds of Diabetes or Snowstorm of Sugar Swings. But, we use our tools to test the health, keep up the maintenance, have that handy insurance should we need it, and work every day to making our drives as Smooth As Possible.

Tuesday, February 9, 2010

Diabetes-Focused Careers

IF I didn't love my job and career so much, I might consider moving into the public relations field from journalism.

(Gasp. Jaws dropping. Eyes bulging.)

We won't digress into the debate that is Journalism v. PR (i.e. The Force V. The Dark Side), but know that this transition (er, "selling out") something that comes to any reporter's mind at least a handful of times in their career. Moreso, when one works at a daily newspaper that nowadays is likely struggling in this current newspaper industry. But, I work for the remarkable Indiana Lawyer and Indianapolis Business Journal, which is doing stellar and gives me a place I'd be hard pressed to want to leave. Four years and running, and still love it dearly. (Read: My editor, co-workers, and company RULES!)

But, if that time ever did come, it would most likely only ever be for something Diabetes-Related. Aside from handicap or some other unforseen happening, that's likely the only reason. Which makes it more difficult lately, as I strive to beef up and do more D-Advocacy and find myself confronting more time-management challenges in juggling my regular work duties with those of the D-World, not to mention regular blogging, Twittering, and anything Outside of Diabetes that may be a part of life. Paying the bills is important (not to mention being able to afford the D-supplies), so that does help dictate a decision. And sleep can be sacrificed some these days.

Anyhow. Taking on more of an advocate role in recent months - from the JDRF Indiana to JDRF Advocacy and other ventures, including active participation in the Diabetes Online Community - I got to thinking about attending D-Conferences. The list isn't much, and most aren't in the Indianapolis or even this area.

Of course, this made me reflect on the historic Roche Diabetes Blogging Summit that happened in July 2009 here in Indianapolis. I'd missed it, and most recently that really bummed me out. So many of my fellow D-O-C chums, those who've been doing this so much longer and so incredibly better as I have, attended this event here in town last summer. Why did I miss out? I thought it was because I wasn't yet as active in the Twitter-verse and DOC, but as it turns out, there was another reason - that was our annual camping trip. See, every year in the last or near last week of July, we travel to northern Michigan with a group of friends from college and have a blast. It's our one annual week-long vacation, and as the years pass here in Indy, it's becoming one of the few times each year we see those good friends. Last year, it overlapped with the summit here and that's where my priorities are at.

Still, I do regret not being able to attend and also meet up with so many, like George, Kerri, Manny, Amy, AllisonKelly, CrystalLee Ann, Scott J and Scott S, Gina, RivaCristel MChris from Diabetic Rockstar... And so on. Seriously, I greatly respect and look up to them and really really missed out on a chance, one less than 20 miles from my home. That really sucks. Since it's so close and we write about them so much, I probably could have pretty easily snagged an invite to this gig. But, alas, it didn't happen. I hope there's a chance before long to get to an event like this again. And that more companies take the lead. (C'mon Lilly, you know you want to... Bueller, Bueller...)

Anyhow, in researching lately whether there'd be another of these Roche events where they'd fly people in on the company dime, I came across this PharmiWeb.com ad for a Diabetes Care Public Relations Manager at Roche. Mainly, it lists the primary duty as leading the strategic PR development and management of communications in Diabetes Care. It's appealing, I really have to admit. Found it interesting, and one that really made me think about my future and what I want to be doing with my life, especially as D-Advocacy takes a more significant role in what I'm doing. Of course, then with Roche there's the whole storyline that the D-Biz suffered in 2009 and they're turning away from the D-Device market (as reported in the IBJ), and having to spin and deal with that just isn't a pleasant thought for anyone. I wonder how it would be doing that for Lilly, or any other company?

How would it be to not only be on the other side of journalism, but also on the other side of just being a patient and dealing with the end-result of the system? That would be like the Twilight Zone, in a way.

Honestly, I'm not qualified for this position and don't have what it would take to be this type of PR Manager for a company like Roche, but it does make me think about lower-ladder spots that could be of interest - if I had any interest in leaving where I'm at, which I don't. (Hint, boss: If you get a glimpse at this, please read "I Love My Job And You RULE.")

Aside from Roche, there are other jobs out there that offer real-money career opportunities for those wanting to enter that world. For example, there's spots like this Editorial Production Manager for the American Diabetes Association. Or these career opps with the Juvenile Diabetes Research Foundation.

It makes you wonder what working in one of these roles might entail. I've thought about that before, reflecting upon those who work in some capacity at D-Life. Or even those who work as sales reps for pump companies or blood test meter makers... Must be interesting merging those two parts of life. Makes you think. As someone who's now at 31, at the 26-year mark of Living With the D, and is bringing in his half of the bacon from a reporter's salary, it makes you think about what the future holds.....

No. I've decided. Reporting is where I should be and continue to operate, and despite my advocacy, I'll do best by watching and keeping in touch with the PR Folks at these all-important companies and organizations that mean so much in the lives of diabetics. That's where Advocacy comes in, and separates itself from Employment.

Monday, February 8, 2010

Just Not Level

Even with the best tools for Diabetes Management we have these days, achieving balance and consistent control is an ever-elusive fact of life. We can try, and sometimes glimpse that goal we're working toward, but the balance is so often short-lived.

We try to level it off, but just can't find a way even with all the tools we have. Sadly, the Ups & Downs often begin when we need consistecy the most.

Recently, I've been struggling with unexplained Highs and Lows. The rollercoaster ride that takes me from the high-hundreds to mid-double digits.

We rack our brains for the causes of the unbalance: inaccurate carb counts, too little or too much insulin, resistence, influencial exercise, the way the wind is blowing, the odd or even number on the clock.... You get the point. Sometimes, it seems as if we've done everything right as much as humanly possible, yet something is off.

That's the most frustrating part. It can make the daily D-routine, which is overwhelming and consuming in itself, seem even more overwhelming and sometimes not worth effort. The stress we put ourselves through, just to find more stress at the end of the tunnel.

Yet, it is what it is. There's no break. We must always take advantage of the tools we have - pumps, needles, blood monitoring regularly and with a CGM if that's an option, carb counting, exercise routines, and all else. Often, it's like these tools are needed to tighten or loosen up a bolt just a bit. We can use a tape measure, and in the end, we just want to make sure the picture is hanging level on the wall. (If my diabetes symbolized the way fixtures hang in my house, though, everything would be off level. You'd have to walk around with your head cocked to the side.)

After 26 years, the trends and reasons can be easier to find at times yet completely random and out-of-the-blue at times. It makes you want to toss out the screwdriver and just take a hammer to crush Diabetes. It can be emotionally challenging, not to mention financially burdensome as you try to equip yourself to deal with the daily D-challenges.

Yet, we in the Diabetes Community plug on in this ever-adventurous ride.

Thursday, February 4, 2010

Not an Afterthought

We have Oprah's hour-long episode Thursday entitled "America's Silent Killer," which went to the "epidemic" of diabetes and everything that falls under that big umbrella. As expected, the show focused on Type 2. This shouldn't be a surprise. It's just disappointing that Oprah decided to not hit that point. That there's not only this widespread type, but one that isn't preventable, is a lifelong disease, and one where research is crucial in order to find a cure.

In this hour of television designed to Scare people, you've managed to expand to even more people ongoing misconceptions about Type 1 Diabetes, which is frequently treated as an afterthought because it's only affecting 10 percent of the population. (You know, only about 1.7-2.5 million people, many children).

Instead, your show focused only on the "preventable" and "reversible" type afflicting most of our population. But in doing that, there was a decision to use the incredibly sad story of Laureen, a Type 1 Diabetic facing amputations and kidney disease, as the Token Example of D-Complications and what could happen if you don't care for yourself. This was purely a scare tactic, and one that effectively helped blur the lines between the various types of diabetes. On one hand, you say there's a difference and list them without really getting into it. Yet then, you use her to try and reach the Type 2s. I find that incredibly irresponsible and disappointing.

However, with all the Faults and Failings and Criticisms about your show and how this Umbrella of Diabetes was portrayed, this episode directly touched on that lingering inner fear that I could someday face a similar fate no matter what I do. You hit this right on, a hammer to the nail that goes in completely on the first thrash. I cringed. Teared Up. Stressed. Started Questioning Everything in My Own D-Management. Her story hit me hard, because it's one that I and most Type 1s, struggle with emotionally every day. That we might someday face this fate.

For Laureen, the 44-year-old Type 1 who's had parts of her legs amputated and is on kidney dialysis, she had her first kidney transplant at age 34, and within seven years that one was also destroyed. Amputations of food and legs. Lesions. Ravaging her body. I found it difficult to watch this, regardless of how this woman came to be in this spot. No word on how long she's Lived with the D, when diagnosed, or what her A1C numbers have been historically. Her words: "Try to take care of yourself early. Because I didn't when I was young. This is what happens"

She said people don't take care of themselves because "they feel fine. It hasn't hit them."

Very true. Pain is the best motivator. I think about this in my own life, and how some foot pain has motivated me. I think about how I'm currently 31, not too far off from when Laureen's kidneys gave out.

(Side Rant: I said it above, but it very much bothers me that Laureen was held out as the "D-Complication" example, when in fact she was a Type 1 and the show was mostly focused on Type 2. Even later in the episode, Dr. Oz spoke of Laureen's amputation and that led directly to comments about "diabetics" eating and exercising better and stopping these crisises from happening. And that if they can reach 6 billion "pre-diabetics," then they can help prevent the Laureens of the world. It reinforced the blank look Oprah gave at one point, in trying to figure out the differences between Type 1 and 2 and just then moving on. I'm so very sorry to see that happen, and feel so incredibly bad about it, but this woman was exploited. This all blurs the line. Maybe not for those of us who know or should know, but for anyone watching and now thinking we can stop, prevent this. As a prominent talk show host and members of the medical community, they have the responsibility to offer more than just a disclaimer note that Types 1 and 2 are different - they have to make sure this message is clear, always. And WTF about the rest, like LADA and so on.... [sigh] Rant Ends Here.)

While I'm healthy now and in relatively good D-Control, that wasn't always the case. As a teenager, I've hit levels that no doctor or child or parent should EVER see. For a while, it hovered around 13. During the most rebellious times, it was upward of that. Once, my A1C was at 21.(Yes, you read that right.) That's when my pediatric endo looked me in the eyes, started at me without words, then said flat out that if I stayed there I'd be dead within five years. I wasn't yet 18.

It hit home. But that motivation didn't last forever, because 20-Somethings are "indestructable." College happened. Life happened. My numbers weren't great. They never went as high as that Scary Death Number again, but they weren't great. The pump helped. It lowered me to a 6.1. But, I have the beginning toe-tingling and periodic numbness in my feet. Eye Doc has found minimal retinopathy a couple times, but better tighter control has made it not visible anymore. I'm in relatively good condition now, and always striving to do better.

But what about my past? Have I crossed some invisible line, where my fate is now dictated because of poor decisions made during my Teens and 20s? Where is this supposed line??? Have I already doomed myself, destined myself to D-Complications and A Fate That No Person or Spouse should have to endure? If so, it's my fault completely. I regret that I didn't. Completely. Every Moment. Wonder how a Type 1 Diabetic's mental demons get going, well this is how. Thanks, Oprah and Dr. Oz.

Again, I understand this show focused on Type 2. It's the "worst" and is "silently" killing so many. And the message, even to Type 1s and others, is clear: You have ways to manage this effectively now. That's a good and powerful message, and one that should be made whenever possible. However, I believe that these Public Advocates have a responsibility to make clear what they're saying, even to those who may not catch an entire episode.

There must be a line that can't be crossed in putting out this message. Do it accurately. Responsibly. Like Kerri would. (Can't wait to read her comments about this show...). Don't cross the line of muddying up what the general public might think, just because you want to scare some of them into taking care of themselves. To me, all Oprah illustrated here was that Scare Tactics are at work addressing the very real issue of Growing Type 2 Diabetes. With this, Type 2s can now feel even more guilty for being at fault. Type 1s can feel slighted for not being more widely represented and lumped into the Big D-Pot, and those with LADA and other types can shrug because their disorders apparently don't exist. We should all be offended by even the smallest of mistakes and inaccuracies in the information - such as the definate genetic link Dr. Oz mentiond for Type 1s, how we're all born with it.

Maybe it was too much to expect Type 1 to play a larger part on this show. Maybe. That's disappointing, and maybe if there was some Diabetic Online Community Bureau we could make a strong case for a Second Part to this, one that focuses on A Cure and The Need For It. Many of us in the Diabetes Online Community try to advocate about all aspects of diabetes, and work incredibly hard to raise awareness about Type 1 diabetes Living and Research, and how there isn't a cure. That it isn't our fault. Now, it appears we'll have to work even more to achieve this.

Wednesday, February 3, 2010

The Search

Three O'Clock wake up.

Scratchy, dry, ragged thirst.

Aching, tingling, toes are lit up tonight.

Thanks to a High.

No CGM beeps. No. Just natural alarm.

The Search begins.

Stumbling at first, then dark veil is brushed away.

Poke in the finger, redness rushes out

Not to relieve the thirst, but to paint a test strip

It screams at me: 499. I scream inside.

No balance. No rhyme. Just random.

Correction comes for 14.

The Search goes on.

This time, for water. Oh, the potential.

To wash away this sand in my throat.

Smooth. Silky. Ice cubes swimming, floating

Within crystal clear waters

Waiting to flow freely, coating the inside

Like the blood coats the now-used strip

Easing the desert dryness

Until it's no more. An oasis of moisture.

Pure Ecstasy. At least for a moment.

Momentary soothing of a late-night High.

Until the insulin kicks in, flushing the sugar out.

Another day begins.

After 26 years, each day is much the same.

Some Highs. Some Lows. Water and Sugar.

And Everything in Between.

So the Search goes on.

For Balance.

In the World of Diabetes.

Monday, February 1, 2010

Birthday Blog

So here it is. Feb. 1. Another Day. Another Birthday. This time, I've reached 31.

Yep. I'm an Old Man.... Old Man Hoskins. There It Is. Yeet, I'm still alive and kicking. Triumphing.

In a month, I'll celebrate my 26th year of Living With Diabetes. And holding strong.

Relatively no D-Complications, minus a little foot-tingling and neuropathy here and there and minimal signs of retinopathy that aren't anything to stress over and seem to appear and disappear between eye-doc appointments.

No special plans, as the birthday falls on a weeknight. A Monday, of all days. A full day of work, followed by a JDRF Outreach meeting in early evening. (Stay tuned for updated JDRF-focused blog in the coming days!) Following that meeting, I will probably head home to watch the DVR-captured eps of Chuck and Heroes, catch Jon Stewart, chat it up with Suzi, and likely get to bed at a decent hour for a full busy Tuesday, followed by the same type of Wednesday. Maybe a nice Devour Downtown dinner sometime during the week, on a spare night without a meeting to attend. That's it.

Another year.... Good times. I'm happy to have them, and be able to share the good times with those I love and who are a part of my life. Here's hoping that there's many more to follow.

Happy Birthday, Me!