Wednesday, June 30, 2010

The Life of My D-Wife

Attending the second Roche Diabetes Social Media Summit in Orlando, I bring you a guest-blog from my loving wife Susanne, who's been a life-changing force in how I've changed my overall life and D-Management for the better during the past decade. Nothing written can do justice to how wonderful she is, and I'll let her say what she wants here without interfering much - only to say that I wouldn't be where I am and have what I consider to be a blessed existence without her special love, support, and partnership.
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Some might find it’s exciting to have in their lives occasional encounters with apple-cider loving aliens, frosting-laced wrestling matches, and recognition of the local paramedics by name and face.

But those are just some of the infrequent happenings in the life of a wife of a Type 1 diabetic, a Type 3, and it’s not part of a daily routine that I don’t consider all that adventurous. Rather, it's what I know and love and wouldn't do anything differently - except to have that long-desired cure.

We've seen a lot in since the beginning in 2000, but even then it wasn’t all that glamorous as it relates specifically to diabetes. More specifically I have found adventure in moving from Michigan to Indiana and getting an actual real 8-page newspaper made for my engagement proposal, and the Big Question being popped in front of a 100-plus of Mike's fraternity brothers and dates. That's all been exciting, as has our life together, and the D is just along for the ride!

I first learned about diabetes like most non-diabetic girls my age – by watching Steel Magnolias… But I would have never thought that one day I would fall in love with and marry a type 1 diabetic. I’ve heard people say that when Mike & I started dating more than 10 years ago, I did “all this research” on Diabetes. Apparently I did so much research, that I don’t even remember doing research. As my major in college was in the health sciences department, I had learned the basics of Diabetes that way; the difference between a high & a low, what happened when you ate different types of food, what to do in an emergency, and what future side-effects could be. So if that was my research, than thanks to Oakland University for the assistance.

Through the years, I've witnessed my Michael change his ways for the better in how he manages his diabetes. He started on the insulin pump a little more than a year into our dating during our last year of college, and that helped him lower his A1C so much. There's been slacking, but in the five years that we've been married he has also gotten much better in doing what's necessary - in large part thanks to our own personal talks and planning but also his more recent involvement with the Diabetes Online Community.

Being married to a diabetic is no different to me as being married to someone who as food allergies. Physical activity wise, there is nothing that we/he/I cannot do. Eating is the same, when you think about it, there is nothing that we/he/I cannot eat. There are things we shouldn’t eat or thing that should be limited (I can eat shrimp with my seafood allergy, I just have to be prepared for the reaction that WILL follow. Mike can eat a whole triple chocolate cheesecake, again he just has to be prepared).

My life as a D-Wife is not very exciting… Sorry, but I find it very boring.

- I wake up and get ready for work, sometimes I make lunches that morning if I haven’t made them the night before. Either way, after I make lunches; I write the card count down and stick it in Mike’s lunch sack (its his own personal love note...)
- If Mike is not already awake, I usually get him up about 15 minutes before I leave. He does his pre-breakfast test and then I can go along my way knowing that he isn’t going Low.
- We text occasionally through out the day and usually talk at lunch. He doesn’t keep me up to date on every test result and I don’t make him - I think it helps to not be “that person.” He will let me know about any particular Highs or Lows that get in the way of the day’s tasks, and sometimes I’m able to catch up on his day’s Tweets that may detail some of those “#bgnows.” But that’s about it.
- Again, we text or call when we leave work to go home for the day; try and figure out what to make/eat for dinner. Whoever gets home first usually starts dinner, I normally finish either way, and usually calculate the carb counts for our particular meal.
- After dinner, we discuss our day and what’s on tap for tomorrow and usually battle over the laptop computer - so that I can use my Facebook Farmville and he can read more D-Blogs and catch up with the ever-so-friendly Diabetes Online Community through Twitter (the “tweeps.”)

Aside from this usual routine, we have had some times when there’s been what some might call “adventure,” or “excitement,” or “fear-enducing experiences.” The paramedics come to our house from time to time. We’ve had our own home-navigated Lows, that have included Mike thinking I’m an alien trying to force apple cider or glucose down his throat. I’ve had to wrestle him to get honey or frosting into his system. These Lows are just a part of him working toward tighter control, and it’s a happening that doesn’t happen all too often. We make due and have our own system in dealing with these issues, and work together to make sure we’re doing everything possible to avoid this kind of “excitement” if at all possible. But I’m not ashamed to tell anyone that it happens, and I’m OK with doing what’s necessary out of love.

Basically, I don’t know any different way of life. This is our routine, and it works just fine for us – as I’m sure all of those other diabetic couples out there have their own routines and rituals that aren’t anything odd in their own worlds, but might seem strange to the outsiders looking in.

Regardless of the Highs and Lows of the D-Life, this is all just "normal" for us and something we look forward to each day together (five years in September - YAY!).

Tuesday, June 29, 2010

Even Better Than Edward Cullen

Jennifer Rowe is what some might call a Vampire, but not quite the kind you'll find in the Twighlight movies.

You might, as a person with diabetes, say she's a Blood Sucker.

But in professional medical lingo and title-ology, the 28-year-old from Michigan is a certified phlebotomist who draws blood as part of her daily duties in an outpatient lab.

She’s been in the medical field since the age of 17, working through the years in various roles that have included a hospital ER and trauma center, oncology floor, and two tours in the outpatient lab before getting her own office site in February 2010.

But while she deals with Diabetics regularly on the job, she has her own personal and family history with Type 1. Jenn is also a Type 1 diabetic, marking her 14-year anniversary this month when she was diagnosed at the age of 14 in June 1996. She used Multiple Daily Injections for the first 13+ years, but has loved the past five months that she’s been pumping. Jenn also uses a CGM. She has been married for 2 ½ years and they have one daughter who turned 4 this month.

An irony in Jenn’s D-story is that she was diagnosed a couple years after her older brother, who was hit with Type 1 when he was 16 and she was just 12 at the time. Long before the medical profession entered her mind, Jenn says she couldn’t muster up the courage to stick him with a syringe for his daily insulin doses.

“When I was 12 years old my older brother, and best friend, was diagnosed with Type 1 “juvenile” diabetes - he was 16. I could not bring myself to give him a single injection. It grossed me out! The smell, the idea, the feeling of the needle popping thru that first layer of skin, the fear of hurting him or doing it wrong….all of it simply gave me the willies. Though I tried many times, I just could not poke him. I was sure that in a life or death situation I would have been able to muster up the courage - but thank God that situation never presented itself. Being a close family and very close with my brother, I saw all the trials and hardships someone with D experiences and the challenges they are faced with both medically and emotionally. My brother didn’t let anything stand in his way and the D was not going to change that. He was a star football player, leader of the pack, the guy all the girls chased after. I didn’t realize it at the time so much, but that is one thing that I looked up to most about him; he never let anything stop him from being the best he could be and he was determined to be the best at anything he set his mind to.”

Their family moved when Jenny turned 14, and she started in a new high school as a freshman. During the last quarter, she noticed the hallmark signs of D: massive water-drinking, weight loss, needing a bathroom pass at least once every 50-minute class period in addition to one before or after each period, and overall just not feeling well.

“We all knew what was coming. On my last day of school, I went home and my mom and I were talking about all that was going on and between her and my brother, they decided I needed to test my blood sugar on my bro’s OneTouch. I wanted nothing to do with it – knowing full well what it was going to tell me, as my mom and bro did too. I did the fingerpoke and reluctantly donated my drop of blood to the Diabetes Gods. Twenty or so seconds later the little screen flashed and it was official, at least to me: I was a Diabetic Teen who had, in the two years preceding, never been able to give my brother a single insulin injection!

After being referred from her Primary Care Doc to the ER and then to the nearby medical center, Jenn was introduced to her own Life With Diabetes and stayed several days.

“It’s funny the things you remember…. I remember the first thing I ate after my diagnosis in the hospital. It was a slice of American cheese with four saltine crackers and a single serving Rice Krispies with skim milk. By the time I was transferred from the ER to the other Hospital it was late and the kitchen was closed so the Nurses served the best they had. I also remember that my dad gave me my first insulin injection.”

After a medical career training elective class in her junior year of high school and an ER student tech co-op during her senior year, Jenn graduated and stayed on as an ER tech at a sister hospital of the place she’d been diagnosed back in 96. That offered on-the-job certifications for phlebotomy (drawing blood) and EKGs. She left the medical field for a short time to teach pre-school but then returned as a phlebotomist about nine years ago. Worked in the outpatient lab for two years then worked in the ER at same hospital she was diagnosed. A move to the cancer floor came after the birth of her daughter, because of the less-demanding work schedule, and then decided to go back to the lab. She’s been back there since September, then was offered her own office/outpatient draw site back in January and opened it in February - it's within a family medical center affiliated with the health system lab she works for, and has 8 attending docs and 12-16 resident physicians. Jenn says, "I decided to come back to the lab for many reasons, the biggest being that I am good at it."

Her brother is doing great - married with two kids, on MDI and Lantus. In his adult D-Life, he's never been hospitalized because of diabetes or any other condition.

"Who would have thought 16 years ago that today, the girl who was grossed out by an insulin injection and couldn’t even give a simple subcutaneous shot, would be jabbing needles 3x and 4x the size into people's arms, popping that first layer of skin into a vein to collect blood multiple times a day?”

Monday, June 28, 2010

Juggling Sharp Pointy Diabetes Things

Heading to Orlando this week for the 2nd Roche Social Media Summit, I thought it was a perfect time to bring in some guest-bloggers. Please welcome first Samantha from Talking Blood Glucose, who I'm also honored to guest-blog for today - we have a little U.S. & U.K. Blogging Swaperoo! Make sure to check that out, as well as the rest of her great posts from across the pond. Anyhow, I'll step aside to get ready for Orlando and let Sam take over as host of the D-Corner Booth today. Enjoy!
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I’ve never been any good at juggling, be it with colourful balls or general life things. And just recently the juggling seems to be getting more and more intense both real life wise and diabetes wise. There comes a time in your life when things get a bit manic. You know; finishing university, moving into your own home, finding a new job, losing said job, finding a new job (which is really epic!) and planning to move on to bigger and better things. But count into the equation diabetes and you’ve got a whole new ball game, and sometimes it becomes like juggling with really, really sharp knives.

The equation may go something like this: Life + Work + Play / Blood Sugars x Possible Illness – Broken Pancreas = Life of a person with diabetes.

Ok, ok I know I’m rubbish at coming up with anything mathematical (pretty funny seeing as how I work for a company that deals with numbers every day!) but you get my point. And what I’m trying to get at is that living life with diabetes can be a juggling act at the best of times, and sometimes the diabetes fairy likes to throw a ticking time bomb into the mix as well.

Take for instance myself, I’ve got a lot of stuff going on with general life things right now. You know there’s the general day to day stuff like eating and drinking and sleeping, chilling out, playing a video game, cooking dinner and making sure the other half is eating properly. This is mixed in with a brand spanking new job, which is proving to be very challenging but incredibly rewarding at the same time. The two of us are currently looking to rent a new Flat in the city so we can move out in a couple of months, and at the same time we’re saving all our hard earned pennies and putting them in a little glass jar for the future. Ok, so maybe a bank account shaped jar rather than a glass one, but you get my drift. But every single day, there’s a little something extra thrown into the mix which makes this normal life juggling act a tad more difficult. It’s obvious from the fact I’m writing this that I have Type 1 diabetes, and if you’ve ever read my blog you’ll know that I suffer terribly from daily hypos and hypo unawareness – puts an interesting slant on the day let me tell you. Because of this, I have to be more on top of my blood sugars than I used to be, and people at work have to be aware of what’s going on with me. And then of course there’s the usual juggling of dealing with injections and dealing with people at work staring, being generally d-policeish, keeping on top of it all, carb counting in odd situations. You name it, I’ve probably done it at work. Give it a few weeks however, and there’ll be something new added into everything, something that will easier ease the juggling thing off a bit or set the juggling balls on fire…

You see, at the end of July I’m getting my hands on an Insulin Pump. It’s incredibly exciting for me as I’ve been waiting a very long time for this; less exciting for my work as I’m having to have time off during training but there we have it. But at the same time I’m wondering how I’m going to work this is into my routine, after all I’ve spent the past fourteen a half years juggling insulin injections so the change is going to be huge. I have no idea what to expect, no idea if it will actually help me but in the end, it’s really the only option left for me. How am I going to bring this into my little circle juggling act and not drop everything else? I don’t want to let other things suffer because I have a new addition to my D-Life but at the same time I’m very scared that other things will suffer.

But then again, I’m a fighter. I’ve had to be. You have to learn to fight things when you suffer from severe hypo unawareness whilst dealing with jobs that require extreme concentration (thank you archaeology for that one!) and I’m not going to let this new addition start taking over. It’s going to be tough, and maybe I will have to take something out of my juggling act for a while to make way for it. But it’s only going to be something small, maybe a couple of hours sleep a night or something. And of course, the juggling may turn into huge fiery balls from hell for a while, but hey, that’s what life with diabetes is all about isn’t it? And besides, I’m sure the juggling will get even more intense when y’know…marriage and kids come along…

Oh, God. I’m scaring myself now. Let’s just add one juggling ball at a time, shall we?!

Thursday, June 24, 2010

Cynthia Kahn: 'A Diabetic Warrior'

Even as a little girl, Cynthia Kahn showed the kind of passionate determination that would be evident in every part of her life and allow her to achieve her dreams.

No matter what, she never let anything slow her down in achieving what she thought was possible, according to friends and family and colleagues.

She set out to ride a bike by the time she was five, and even after "falling off and getting back on" repeatedly she did just that. The same thing happened in high school, when she overcame inexperience and a lack of knowledge and became a letter-earning tennis player.

The same passion and determination played out in every aspect of Cynthia's life, from her professional work in advancing public health information and librarian instruction, her devotion to the history of medicine, to her passion for diabetes advocacy efforts stemming from her years of living with Type 1 diabetes.

"That’s just the way Cynthia was," said her dad, Ted Kahn. "She was from her beginnings a very determined child and person. When she put her mind on something, it was never 'if' it would happen, only a question of 'when' it would happen."

Cynthia Rose Kahn died June 7 at age 39, in her apartment in Orlando, Florida. Her parents believe that her blood sugar may have dropped dangerously low while she was sleeping and caused her to not wake up. She is survived by her parents Rhoda and Ted Kahn, grandfather Sol Gold, all of West Bloomfield Township, Mich.; brothers Jeremy Kahn of Fort Lauderdale, David Kahn of Baltimore, and Daniel Kahn of Royal Oak, Mich. - as well as many loving uncles, aunts, cousins and friends.

Diagnosed with Type 1 about seven years ago (as an April 2010 Twitter post says), her parents think that she had actually developed the chronic condition many years earlier before the actual diagnosis that came when she was living in Washington D.C., and led to her collapsing and going into a coma at a hospital and staying in an ICU for five days. Since then, her dad said she'd pushed for good control and had gone on an Animas Ping pump, but still had what he describes as “brittle” diabetes.

Most importantly, though, his daughter didn’t let diabetes get in the way of her living a full and successful life. Even when her blood sugars swung from 40 to 450, Cynthia kept a hectic scholastic and professional life and didn't let those around her see the impact. Her dad says she was all about remaining positive, and cared so much about openness, determination, aggressive pursuit of one's dreams, and an overall concern for others and kids.

“Somehow she always kept a great smile on her face and a positive attitude,” Ted Kahn said. “Few really knew her pain, her daily episodes, her depression…but that would all pass and the ‘Cynthia spirit’ would emerge. She’d stay upbeat and kept that smile, because she really wanted to help people and prove that anything was possible.”

A native of Oakland County, Michigan, Cynthia lived a life that took her through the years from her home state to Florida, Paris, Washington D.C., Oregon, and back to the nation’s capital before a return to Orlando.

She attended Eastern Michigan University, earning a B.A. in French and travel-tourism before going to work for Disney – twice in Orlando and then for 20 months at EuroDisney in Paris. Her dad says she back “more serious,” then set her sights on becoming a medical librarian.

Cynthia attended the University of Michigan in Ann Arbor and earned two master’s degrees - one in public health and another in information and library sciences. That education led her to work as a reference librarian for a hospital system in Portland, Ore. and as a manager at the Association of American Medical Colleges' archives in Washington D.C. She began there in August 2006 as a reference and instruction librarian at the Himmelfarb Health Sciences Library at George Washington University Medical Center in Washington, D.C., and she was pursuing her Ph.D. in history at GW.

In March, she made a move to the University of Central Florida's College of Medicine, where she took over as head of public services for the Harriet F. Ginsburg Health Sciences Library and basically served as the face of the library. In only three months in Orlando at the UCF position, everyone was already recognizing what an amazing asset and overall inspiration she was to have there, according to her boss and the library director. Cynthia was working on displays and exhibits on the history of medicine that would be housed at the health sciences library, which was a way to educate the public, students, and faculty, about the past.

Aside from her librarian roles, Cynthia also worked as an adjunct professor for about four years and taught first-year medical students about the connections between computers, social networking, and clinical issues and how that can all be used.

Her dad proudly notes Cynthia’s active membership in the Public Health/Health Administration section of the Medical Library Association, and how she’d published 20 articles on public health and medicine, spoke at conferences nationally, and worked tirelessly to help and support everyone she knew in real life and in the online communities.

“Cynthia was passionate about all she did, and was active, not passive, in every organization she belonged to,” her dad said. “But her most important calling was as a diabetic warrior.”

One of her passions was the Extreme Weekend for Children With Diabetes, a twice-a-year camp in northeast Maryland that is run by the non-profit group Adventures For The Cure and gives kids a chance to do intense sports while keeping up on D-Management. Cynthia had twice volunteered as a camp counselor there for diabetic kids between 8 and 17, and leaders say she was instrumental in making the Extreme Weekend what it is today. Most recently in April, she had attended the camp and loved the experience.

“She was a wonderful role model for the children and touched so many people with diabetes and without,” said camp director Ron DeNunzio. “All the kids and volunteers really loved her at camp, and she wanted to help in anyway she could. We’ll really miss her, but she’ll be with us at every camp and it will go on and on with her spirit.”

In her honor, the AFC has created a Cynthia Kahn Memorial Scholarship Fund to help children who cannot afford to attend the camp on their own without some financial assistance. As of June 21, the camp website says that about $2,300 had been raised.

Moving to Orlando earlier this year, Cynthia’s dad says that she was hoping to work with Extreme Weekend to establish a similar type camp there locally. She also wanted to help the Diabetes Exercise and Sports Association (DESA) branch out more there, particularly at the annual Children With Diabetes Friends for Life conference each summer.

As a Type 1 diabetic energetic about exercise, Cynthia had been an active member of the group and had helped establish the its online presence most recently through Facebook, Twitter, and social media, according to DESA executive director Doug Dressman. She was excited about helping the group expand in the D.C. area and nationally, and he wants to carry on those plans she cared so much about.

“She was so passionate and enthusiastic about diabetes and living a full life with it, and that’s what she did,” he said. “That passion, commitment and energy was infectious and made everyone want to be around her. Cynthia was a cheelerleader who just put a little bounce in your step.”

I'd never had the honor of meeting Cynthia, and we'd only connected briefly through the Diabetes Online Community through social networking, TuDiabetes, and the blogosphere. Yet, we'd shared roots in Southeast Michigan and a love for Detroit - from the Red Wings to the University of Michigan, where she attended graduate school and a place we both probably found ourselves on the same college football weekends through the years. Even more broadly, we shared bonds in advocacy work and that's a story that must be told and carried on by those whose lives she touched.

One comment on her TuDiabetes page captured what hundreds have echoed from across the world, messages that Cynthia's parents describe as a lifeline for them and the family since her death.

"You remind me why I do what I do and also how to live, truly L-I-V-E each day, each moment, to the fullest. With a smile, preferably. I am sorry we never had a chance to meet on this plane of existence. Your memory lives on in the lives of all you touched, whether we met in 'real life' or not. Soldier on in heaven, blessed one, and look upon us and smile. We go on for you -- and for each other."

That is exactly what Ted Kahn said his daughter would want: for all People With Diabetes to be involved and live their lives to the fullest, no matter what, until that wish for a cure can be realized.

“The lesson her life leaves is this: no excuses, just forward, because all is possible,” he said.

Wednesday, June 23, 2010

Death by Diabetes

The CDC reports that more than 70,000 people Americans die from diabetes each year, and it's currently listed as the fifth-highest killer in the States following heart disease, cancer, stroke, and respiratory illnesses.

But diabetes is under-reported in causing deaths, and one industry leader has pushed to change that in order to more accurately portray the impact of this chronic condition.

A recent Bloomberg BusinessWeek story (thanks for pointing me to this, @sstrumello) tells us that world-leading insulin-maker Novo Nordisk pushed the U.S. Congress recently to put a provision into the health reform law that requires coronors and doctors to more-frequently list Diabetes as a person's cause of death. That underestimates and changes the overall number-based impact of diabetes, one of the company's Washington D.C. lobbyists says, and having a higher death toll means more government spending and private funding for treatment, detection, and prevention of diabetes. Pending regulations this year will spell out how the new reporting law will be applied, such as when a patient dies from a D-Complication.

But how does the Diabetes Community feel about this, since we're the People With Diabetes who try so hard to lesson our chances of dying from this disease? What does this mean for our own advocacy efforts in trying to motivate the government and private sector to standardize benchmarks and make treatment tools more accurate? Must we die to prove a point that these changes are necessary?

If it's the Death By Diabetes standard that's being looked at more closely, maybe D-Advocates must also turn to these tragic deaths to make our points. Such as when a child or adult Type 1 dies because of a night-time Low that maybe could have been prevented if the insurance company had been more receptive to covering a Continuous Glucose Monitor. Or how a 20% accuracy standard could mean the difference between sleep or coma and death. Or when ketoacidosis claims one of us, and we point to how the BG Level Monitoring could have been better had software allowed us to combine the multiple devices from different company's. Maybe it's just recognizing that product inadequacies happen, and something not working isn't a consequence of "patient error." That a doctor's condescending attitudes or negativity could combine with the high costs of office visits in motivating us to avoid better management altogether, leading to death...

How do we report those of us who may die from a Low, in the middle of the night? Or a Low that causes something such as a drowning, or a fatal car crash? Do those instances have diabetes listed as a contributing factor, one that plays in to the overall numbers rather than just being a person who dies from "natural causes" or asphyxia or car accident? If reported accurately, would those figures then be lumped into data that might used to provide better insurance coverage for CGMs, which might monitor and prevent these tragic deaths?

I don't know what the answer is here. There may not be one, or it may be a huge gray area that no one really wants to talk about. But it's worth thinking and talking about, I'd say.

No one wants these scenarios to happen. But maybe, that's a way to tell the story about why these changes, these better standards, are just as important to us Type 1s as it is for those who fall into the "epidemic" known as Type 2. Maybe it means we do whatever we can in our daily lives for best management, attempt to sidestep that ultimate Death By Diabetes...

But should we fall by the D-Hand, we make sure our stories are told about how we died so the true face of diabetic death is known.

Tuesday, June 22, 2010

3.4 Blood Tests a Day

Our insurance company changed on June 1. The small business that my wife works for switched to United Healthcare, which was only raising rates 14% rather than the 40% hike predicted by Wellpoint Anthem.

In many ways the coverage was similiar to what I've seen in the past, but this new policy brought a new element I'd never experienced before: Blood Test Strip Supply Limits.

The formulary booklet lists all three tiers of test strips, and magically the One Touch Ultra test strips that I use fall into that first category. Lucky me. Of course, there was a fun little code of "SL" in bold behind the brand name. The key at the bottom revealed this to mean, "Supply Limit." It almost brought a smile to my face, as I'd never lived with this type of limit before but had heard the stories from those who have. There's probably no way to avoid a fight on this one, I thought, so bring it on!

In calling UHC on Tuesday to discuss my policy coverage and what this means for my daily D-Management, I spoke with a very nice Helpful Customer Service Girl who answered all of my questions. Sure, the answers weren't all what I would have preferred. But she answered them, and I appreciated that.

She checked her system about my particular brand of BG Test Strip, and informed me that my coverage allowed 102 test strips a month. That smile returned to my face, and I chucked as she went on about something or another that really wasn't relevant to the conversation. Is that what you use, she asked?

Me: "Um, no. I am a Type 1 diabetic, which means I use significantly more than that."

Her: "Oh. How many do you use?"

Me: "I test anywhere from 8 to 10 times a day."

Her: "Oh... Is there a reason you test so many times a day?"

Me: "Yes, there is. I'd like to live past 35 and not lose a leg."

Silence....

Her: "Well, if you use more than that 102 a month, your doctor can request an exception for a higher amount. If that's approved, then you would be able to receive those for the same co-pay."

Co-pay for a month's supply is $10. A three-month supply is $25. That includes mail-order supplier.

Me: "So, my doctor needs to get special approval for the amount of BG strips she thinks is necessary to keep me alive. Ok. But even that requires United Healthcare's approval?"

Her: "Yes, it does."

Me: "What happens if that isn't approved?"

Her: "You can appeal. There is a process in place."

Me: "I see. Ok. Thanks. I understand."

The nice girl answered my questions, and though I wasn't fond of the answers, she provided them kindly and without multiple version of the same story - as is a common happening when talking to health insurance people. I appreciate that. Yet, she just didn't understand why it was necessary for me to be able to test more than three times a day (actually, 3.4 times a day if my math proves correct). Honestly, I don't know what I would do if that amount of daily BG tests was all that was allowed. Any notion of good D-Management would be out the window.

An over-arching message, again, is that is that health insurance companies don't listen to what doctors order and instead want to rely on their own blanket-formulas to limit their own expenses rather than provide what's needed for adequate health care. I get that insurance companies have a bottom line. They want to make sure policy-holders are actually obtaining what they will actually need and use, because test strips are very expensive and way too costly. But too often, these companies fail to recognize a basic reality: that People With Diabetes generally will use more test strips than what might have been otherwise ordered. With BG Meters being notoriously inaccurate by 20% or so, you might get an inadequate blood message or another error that means using another strip. Or you might have to test more than once at any given time to make sure the insulin you're giving yourself won't take you too Low and lead to bad things. In the event of a Low, you have to test MULTIPLE times to ensure that you're back to safe levels.

You know, the practical considerations of BG Testing for People With Diabetes.

So, we do what we must to battle the insurance and financial woes necessary to obtain these needed supplies. Those us with insurance have it well, compared to those who don't and have to dole out the insane amounts for few strips. I'd just endured a hellish process with my previous insurer and mail-order supply company to receive a covered 3-month supply of strips. You may remember my rants about that - here and here. This exact discussion and Supply Limit issue is exactly why I made sure to order those strips early through the former insurer, to make sure that I had enough on hand in case there was some crazy delay or limitation. Looks like my thinking was pretty much on cue, after all.

So, in the next week, I'll contact my Endo's Office to fill her in on this new prescription hurdle and have her do what's necessary. There is hope that I won't have to appeal and United Healthcare will see the logic in providing what my doctor has deemed medically necessary for my D-Care. Yet, confidence in that result is not as strong. It's a hope that lingers, like the hope for a Cure. But it doesn't change the fact that we must Live With Diabetes in the meantime, and use the process that's in place - for better or worse.

This does make me wonder, though... Would the insurance industry be willing to do what some in the Pharma have done: listening to the Diabetes Community about their concerns, likes, and dislikes? Roche has reached out to the Diabetes Online Community and Minimed has done the same in Europe. But what about Wellpoint Anthem, or Blue Cross, or Cigna, or Aetna? Would those players be willing to listen to those who feed their bottom line? Is this worth advocating for, or would it just be a waste of time? We'll see what the future holds on this one.

Monday, June 21, 2010

Alert: Driving With Diabetes

Driving With Diabetes (or Driving While Diabetic) is a topic that I've written about before. You may recall me recounting stories about my own "adventures" while on the road or when prepping to get behind the wheel. These situations teach us that one must always make sure their blood glucose level is at safe levels before getting behind the wheel - testing before putting the vehicle into gear is something every Person With Diabetes must do.

But sometimes, no matter how much one tries or prepares, he or she encounters a Low that might have some impact on the driving experience.

Now, I carry a BG Meter and always test before driving. A tube of glucose tabs stay in the door handle next to me, and there's also a backup jar that stays in my center console along with a pack of Skittles nearby. An alert card also stays in my wallet, and sure my insulin pump is an external sign that might tell some about my Type 1 diabetes. But really, if someone isn't trained to look for these items in a moment's notice, they might not be able to tell right away that I'm experience a medical emergency.

This came up recently when I was speaking to some parents of newly-diagnosed children with diabetes at an Indianapolis area D-Camp. I mentioned how this could happen, and one of the D-Dads noted how he works as a sheriff's deputy and has seen diabetic drivers experiencing lows. They appear drunk and it's not always easy to tell if that first responder doesn't have training to recognize a Low.

In reflecting on all of this, I recalled a specific Alert decal that could be put onto car windows, or hang on a rear view mirror to alert police or firefighters or whoever the first responder might be. This is D.A.D. Innovations, a company based south of Chicago. The man who founded this company is Mark Lippe, a Type 1 who had encountered some driving difficulties back in the 70s - basically he had a Low,  blacked out and crashed into a tree, then had police questioning him at the scene about what drugs he was on. Though he tried to explain, they didn't believe him and gave him three citations before placing him in the back of the squad car. Now with a diabetic teen daughter himself, Lippe didn't want the same issues to happen with her. So, the Diabetic Driver Products were born.

"With these decals, and now key chains, medical and emergency personnel could be alerted to the drivers condition and give appropriate medical treatment," the D.A.D. Innovations site says

My mom recently bought me a pair of decals that came with a keychain alert (thanks, mom!!!). They aren't expensive at all, but it was a cool little gesture that I greatly appreciated. Plus, a note on the card I received says that a portion of the proceeds from these medical awareness decals and key chains is donated to the American Diabetes Association and Juvenile Diabetes Research Foundation. So there's that motivation, too, aside from the practical usefulness of these items. I've put one of the decals on the driver's side window of my red Ford Escape. Since I rarely drive my wife's car, won't put one there and will keep the other handy for the future.

Now, I've heard some raise concerns about tagging their vehicles with these decals. Questions come up, like whether these stickers could lead to some form of discrimination or give other drivers' a reason to glare or try to avoid driving near you? Might someone look at you differently or even blame your medical condition if you are involved in an accident, but it has nothing to do with diabetes? Personally, I don't take much stock in these arguments. I don't care what other drivers think about me. Let the state look at my driving record if they want to judge my driving (on second thought, let me retract that...).

This is about alerting first responders, who may not be able to recognize D-Symptoms initially and prevent some situations that have been written about in news stories - such as police mistakenly believing someone is intoxicated and trying to flee or resist arrest, when in fact they're having a medical emergency. That's the point of this.

Hopefully, there won't ever be a need for this alert to do what it's intended for. But if that situation does arrive, hopefully it will give those first responders a quick alert about what medical emergency is happening.

Friday, June 18, 2010

Golden Twilight Returns



A darkened sky, dramatically choreographed with restless storms.

Our lives flash before our eyes, as quickly as the lightening strikes the horizon.

Thunder rumbles, just as troubles tremble within these daily lives.

Rain comes pouring, just as deadlines, finances, relationships, stress...

A line of storms rains down on our lives, clouding our minds and drenching our days.

Highs and Lows, Lost Time and Restless Hearts all tempt our souls away from the path.

Away from the knowledge that, the storms do move on.

The sun will shine through in their place.

Golden Twilight tickles our hearts, surging into our souls

Making us remember why we wait for beauty in this life.

Why we hold on to our faith, our love, our hope.

That no matter what storms we face, Twilight returns.

We welcome it. Cherish it. Gain the strength to weather the storms once more.

Wednesday, June 16, 2010

Loss in the Diabetes Community

Losing someone is always tough. But the Diabetes Community has lost some incredible men and women recently, people who've touched countless lives and brought happiness to this world while being tireless advocates in their own respective corners.

These untimely deaths can really get to those of us People With Diabetes, even though these individuals may be strangers to us for all practical purposes. Some others have touched on this beautifully recently, such as Kerri's post "Broken Rules" over at Six Until Me and Kelly's post "Sadness, Regret, Anger" over at Diabetesaliciousness. Their writing hit home and it's true those losses got to me, but honestly the most recent loss earlier this week has pushed me to the edge. It not only saddens me, but enrages me to the point of wanting to question and cry and ponder why we're all faced with this chronic condition in the first place.

Most recently on Sunday, June 14, we've lost Will Koch, a 48-year Type 1 who was president of Holiday World & Splashin' Safari near Santa Claus, Indiana. Here is news coverage from the Evansville Courier Press. Mr. Koch was diagnosed with Type 1 in his early 20s when he was in college and he was currently using an insulin pump, and some may be familiar with his amazing advocacy work with the Juvenile Diabetes Research Foundation. Each year, the Southern Indiana JDRF's Walk for the Cure was held at his family amusement park, which he had taken over from his father at the age 25. It's apparently the country's oldest amusement park, and under his leadership for 20+ years the park massively expanded with a water park and several world-class rollercoasters.

Preliminary autopsy results show that he drowned, according to the news reports. In the family pool. Reports are that his wife and kids were at a show in Louisville, but he'd stayed home to finish up some work. They talked on the phone at 8:30p.m. Sunday, and he was fine and all was well. But when they returned home after 10 p.m., they found him floating in the family pool. This was completely unexpected, not only for what it obviously is but because Mr. Koch was an excellent swimmer and had been on the high school swim team back in his youth. His family believes diabetes contributed to his death - possibly a Low from hindering is otherwise excellent swimming skills and making him thrash or sink in the normally friend family pool waters.

Now, I don't know any more than what the news reports tell me and have no insight or presumptions that this is actually what happened. But it scares the hell out of me. What if he suddenly dipped Low, as often happens to us People With Diabetes? What if he was in the pool and couldn't get out? What if he was inside, doing work at his desk, and the Low made him unaware and try to find help...

Tears are coming to my eyes as I'm writing this. What gives this damn disease the right to do this?? Why in the hell do we have to struggle each and every moment of our lives to balance it out, and sometimes it's just never good enough? What the hell did I do in my first five years to deserve this? What did any of us do, at whatever stage in life we were at? Where the hell is the cure that doctors have been promising me for 26 years, others for decades longer than that?

Again, I don't know personally and do not want to fuel speculation about what happened to Mr. Koch. It's the fear that gets to me in pondering these "What Ifs," knowing his swimming history and thinking back on my four years of high school swimming that might not matter if I end up in a pool somewhere while Low. Or near a pool while Low.

I can't stand it. Seriously. This just tears me up inside, and it makes me now want to go to sleep at night for fear of not waking up. Not want to go to pools. This emotional trainwreck makes me think about whether it's worth it to keep blood sugars in that normal range, but instead keep them higher and risk possible complications that may not ever materialize even if BGs run higher. Diabetes can be managed so meticulously each day, but so often it interferes with our lives and in these tragic cases it appears to rob our world of some of the brightest souls we've had the privilege of sharing air with. Sometimes, this all makes you want to curl up into a ball and not live your life. Because this really hits home.

But that's not what will happen. I won't let diabetes win. Despite the fears, it won't control my life and prevent me from living my life to the fullest extent possible and impacting this world in whatever way I'm meant to. No, diabetes, you won't win. You take some of us, but others will carry on in our absence. Our legacies live on, and we'll beat you. Eventually.

We will find a cure someday. Then, you won't be able to take good people like Mr. Koch and Others from us this way. But until that time arrives, we'll fight you each day. We'll Live, Laugh, Love. Because this is our life, not yours. We'll carry on the legacies of those who've gone before us, donating to the causes they advocated for and continuing that advocacy.

Mr. Koch's family asks that donations to be made to the Lincoln Boyhood Drama Association, the Juvenile Diabetes Research Foundation, or the Santa Claus United Methodist Church.

We remember him. We remember the Others You've Taken Too Soon. We Live On, for them and for ourselves despite you.

Tuesday, June 15, 2010

Nursing Politics Out of the Law

A California appeals court says state law only allows nurses to give diabetic students insulin in schools, because it's a nursing function and requires some skill and scientic knowledge.

Parents are outraged. The Children With Diabetes forums lit up once this ruling came down. Though some are criticizing the courts for ruling this way, most realize that it's not the state or appellate court at fault here - most parents along with the American Diabetes Association and JDRF and other D-affiliated groups are vowing to take this fight to the California legislature (already done, but to no avail as of yet). Though this case is specific to California, this is an issue that's being debated nationwide as the country faces a nursing shortage and cash-strapped schools are cutting those positions. Some parents worry that this could lead to "special schools" where D-Kids are herded in order to have that kind of care state law says can only be given by nurses.

But it's not only the United States where this is happening - Ontario is facing a related issue about D-Care in Schools, and it's all playing out with the Bill of Rights for Pupils With Diabetes.

The case that sparked this ruling began brewing five years ago, when parents and the American Diabetes Association sued two California school districts on claims that officials were failing to ensure D-Students could receive necessary administration of medications at school. The sides settled that case in 2007, with part of that settlement requiring the state to issue a legal advisory that trained school personnel who weren't nurses could give insulin if those licensed nurses weren't available, as part of the Section 504 plans or individualized education programs. The American Nurses Association filed its own suit after that, alleging the state department was violating the state's Nursing Practice Act.

Those nurses claim the health of diabetic public school students will be in jeopardy if trained school personnel other than nurses are permitted to inject insulin – a drug they assert is dangerous, requires substantial scientific knowledge to safely administer, and poses a significant risk of harm if administered in error.

Of course, disagreeing and arguing that non-nurses who are trained can administer insulin: the American Academy of Pediatrics, the American Association of Clinical Endocrinologists, the Pediatric Endocrine Nursing Society, the American Association of Diabetes Educators and the Juvenile Diabetes Research Foundation.

But Sacramento Superior Court Judge Lloyd G. Connelly ruled that only nurses could give insulin, because that's how state law is written. On appeal, the three-judge Third Appellate District panel issued its decision in a 41-page decision on June 8, in the case of American Nurses Association, et al. v. Jack O'Connell, as Superintendent of Public Education, C061150.

Basically, the appellate judges upheld that state judge's finding that California law doesn't allow unlicensed school personnel to administer insulin to diabetics in non-emergency situations. Rather, the state's Nursing Practice Act prohibits the "practice of nursing" by non-nurses, and glucagon or insulin-injecting is a nursing function. In analyzing the legal arguments made by the state Dept. of Education and American Diabetes Education that were parties to the suit, the court found that the current nursing shortage didn't constitute an emergency situation and that school personnel aren't able to do "gratuitous nursing" as family or friends might be able to do.

In response, the national and state nursing groups are praising this decision. Saying it's all about the safety of kids. If kids need insulin and can't do it themselves, then it would be up parents to be at the school at any given moment to do what's needed for their kids. The nurses argue that giving insulin requires a nursing education and certification, and to think or allow otherwise would somehow endanger kids' health and safety.

Uh huh... Right. Because nurses are "always" right... And hold up. Does that mean that because I have successfully administered my own insulin for 26 years, that I AM A NURSE?? Well then, where is my accompanying certificate and high salary?????

Significantly, I find that one of the most telling aspects of this whole court battle is that the courts don't agree that the nurses are correct on this, regardless of what state law says.

The California appellate court writes: "Whatever may be thought of the wisdom, expediency, or policy of a statute, we have no power to rewrite the statute to make it conform to a presumed intention that is unexpressed. If diabetic students and their parents would be better served by allowed unlicensed, but trained, school personnel to administer insulin injections when the administration if such injections by a licensed nurse is not feasible, it is up to the Legislature, not the courts, to change the law."

Even more significant is a concurring opinion from Presiding Judge Arthur Scotland, who agrees with the final decision but writes seperately not because he wants to but because he must.

"It is just the result, compelled by the Legislature's policy decision and unsuccessful efforts to change the policy, that make little sense to me. Like my colleagues, I agree that the trial judge got it right. If there is a flaw in a statutory scheme that does not run afoul of the Constitution, it is up to the Legislature, not the courts, to fix it. Thus, even though it seems to me that allowing trained school personnel other than nurses to administer insulin injections for diabetic school students when necessary would be the wiser public policy decision, I must defer to the Legislature's policy judgment and the subsequent legislative and executive decisions preventing a change in that policy - regardless of whether they were the product of legitimate concern for the safety of diabetic public school students or the result of a labor organization protecting its turf and flexing its political muscle."

See?! Even the judges don't like this, and even recognize that the American Nurses Association and its California arm are doing what's political here. The courts think it's wrong. They interpreted the law as it's written, not what they or anyone else may feel is right or wrong. That is what judges are supposed to do. The ones people need to be targeting is the California General Assembly, which has failed to revise state law to adequately address this issue and instead leaves in place the Nursing Act to deal with it. That's where parents must direct their anger, their advocacy. Start here, by writing a letter to respective lawmakers. Flood their offices with calls and emails and letters, and schedule times to meet with these decision-makers face to face so that they know and won't forget how important this issue is. Contact the local JDRF or ADA affiliates to join whatever coordinated campaigns and efforts they have going already.

This is the Democratic Process. Use it. Raise Your Voice. Even if you don't live in the state or have a Child With Diabetes, please express your opinion - because this isn't just about California, it's about all states that are suffering a nursing shortage and have Children With Diabetes in schools who need real, practical, hands-on help. If it can happen there, it can happen in your state and to your own or other D-Kids. Because we know that Highs and Lows don't wait for a nurse who may be at another school, helping some other kid. It's not responsible for nurses to say they are the only ones, when this very position could put kids in danger.

Granted, you must keep some liability perspective here on the choice lawmakers are faced with: what happens if a teacher sees something wrong with a Kid With Diabetes and decides to inject that child with insulin, despite the fact that the child was suffering at that time from a Low blood sugar? If that child passes out or worse, who's responsible... The school? The teacher? The nurse who wasn't there? There is some merit to that argument, though I do not think it's what motivated the nurses in this case to raise their nursing degrees.

Personally, I interpret the facts to say that it's political and the nursing profession's self-preservation is at hand. To me, this position that only nurses can give insulin or administer D-Care is ridiculous and goes against the nurse's Nightingale Pledge to "devote myself to the welfare of those committed to my care."

This shouldn't be a nursing profession position or a liability issue, but one that makes sure diabetic kids are able to attend school the same as any other kid. Isn't that the whole point behind the 504 plans, to ensure that kids with disabilities have access to the same kind of education that other kids get?

Monday, June 14, 2010

Plan B in the DOC

A key aspect in any person's life is learning how to adapt. Change happens, and we must always be ready for it. The same can be said to those of us in the Diabetes Community.

Life is all about adapting to change, especially when your Living With Diabetes.

Sure, I love it when a plan comes together (A-Team tv show quotation here), but rarely is it Plan A that materializes from concept to reality. No, it's hardly ever the first plan that gets carried out. More often than not, we find ourselves having to be all like MacGyver and come up with new plans on the fly.

So was the case in my own Indiana D-Life recently.

An exciting, Hollywood-style meetup was planned between myself and Cherise over at Diabetic_Iz_Me, as we both work within a few minutes of each other in the city. As she's new to the area, I offered to head over to her side. With her recent Cupcake Baking Adventures, I'd decided that a gift from The Flying Cupcake was in order. Maybe something with bananas, or a Hoosier favorite.

Well, that plan didn't materialize. The cupcake store is not easy to find, in the advertised location. A busy work morning meant I had little time to drive around searching for this cupcake bakery that was just too hard to find, so I scrapped that plan and proceeded to our meeting spot - at the lunchroom on the campus of Indiana University Purdue University Indianapolis (IUPUI).

Of course, there's more than one lunchroom on the campus and as the meeting time arrived, we found ourselves talking on the phone from different lunchrooms. Luckly, they are nearby so Cherise walked over to where I had situated myself next to a sugar-free gum dispenser. We greeted and said hello, but soon realized that this particular lunchroom was swarming with college kids as it was indeed the lunchhour, and there was no quick way to get food. Luckily, Cherise had a MacGyver-style Plan B - she knew of another lunchroom.

So, we walked and talked and made our way to McDs. Though they jipped her on the ordered 10-piece chicken mcnugget, it was a quick but productive meet and greet over the lunch-hour. We chatted about various things, and whether to bolus or not for lunch based on all the walking we'd done, and before we parted ways to return to work she asked if I was planning to attend the American Diabetes Association's Tour de Cure in Indianapolis on Saturday.

I'd thought about it, but hadn't made any plans. Along with my previous reading of Scott's blog about being a Red Rider, Cherise pursuaded me to volunteer. That was the plan. A phone call to the ADA organizer had me helping out at the registration starting about 5:30 a.m. the next morning.

But a "glucoastering" effect that evening and into the morning hours derailed those plans, and I found myself bouncing from the 40s, to the 300s, back to the 40s throughout the next day. No volunteering, after all. Guess I'll have to wait to ride or volunteer in the 2011 Tour de Cure. Oh well.

This glucoaster ride zapped my energy and took away any desire for blogging, and it was a challenge writing this one. I thought about changing up plans and posting some future-scheduled ones already on tap, but ultimately decided against it.... Plans had already changed too much for me and some consistency was needed.

Life happens. Plans change - diabetes or not. This was just one of those times where they changed a lot, and I had to make due. Good thing there was at least one backup plan in place, spontaneously-realized or not. It happens. It Is What It Is. We move on. One plan at a time.

Friday, June 11, 2010

My Golden Ticket

Her words hit his heart like pure joyful music.

Original Source, before adaption.
You would have thought she'd just told him the greatest news on earth.

His eyes lit up. Like a small child hearing the world-changing news that he'd get to run through a candy store with unlimited purchasing power and no parents to limit the candy intake.

This was the scene in my Endo's office during my three-month visit on Tuesday. It was like a Kid With Diabetes being given access to a Sugar Free Candy Store, just like when Charlie found the final Golden Ticket to Willy Wonka's candy-land.

For me, my Golden Ticket came in the form of an impressive A1C figure, which had dropped from 8.8% in March to 7.7% now. A not-so-impressive number, but an impressive 1.1% drop in just three months.

Heck, this was better than any Golden Ticket - this was a pathway to better D-Management paved in gold. Or something along those lines.

A smile graced not only my face, but also my heart as it jumped up and down and pumped its fists in pure excited triumph. I swear there were some Oompa Loompas hovering nearby, dancing their crazy fun magic dances just the same.

Granted, this isn't the greatest number ever. I can admit that. We all strive to be lower than 7, and as close to 6 as possible. I've been as low as 6.1% before in my first year of pumping, and hovered at that level for a while before getting complacent. But, it's a level I haven't been at in a while and to see it drop so dramatically in three months just feels great. Like an outstanding achievement.

This comes after about 2.5 months of a Pump Hiatus, where I went back to Multiple Daily Injections for the first time in nine years. Not the most exciting experience, and I'm so ready to get back to pumping. I've chronicled my journey and how I'm looking forward to getting back to my beloved Minimed Paradigm pump.

However, it's hard to argue with that 7.7 and what it proves about my control most recently. I'd hate to step away from that, even if it's just a sign that my own diligence is the reason and not necessarily the form of treatment.

So, in reflecting on this with Endo and Suzi, I've decided to extend the Hiatus through the summer months - meaning my Lantus and Humalog injections will continue through the Roche Summit in Orlando, the Fourth of July Festivities here in Indy, our Annual Michigan Camping Trip for a week in mid-July, and even through the likely busy work-month of August. We'll spend these summer months fine-tuning and tweaking for better control, and see what all can improve even more by the next visit in September.

The hour-long visit that entailed about 20 minutes with Dr. P. earlier in the week didn't just entail the news above, but we also had some great discussions overall about BG trends and made some appropriate tweaks. She's drafting my airport travel letter for the end of June, and also getting me one to send to Lilly and Joslin for the 25-year awards that I'm now more than a year overdue on. Also discussed long-term health and D-related issues, as well as some more general D-Advocacy and Outreach issues here locally and even in the online world. A productive three-month visit.

I'm excited about the coming months and everything that's coming before the next visit. Hopefully, it'll prove to be that metaphoric D-Candy Store full of sugar-free candy, tiding me over until that next visit in September when Dr. P can give me more news about even better candy in the store! I've got my Golden Ticket, but I've yet to enter the candy factory and have much to look forward to...

Thursday, June 10, 2010

Over at The Life of a Diabetic

One of my fellow D-Bloggers is Chris Stocker, an Adult Type 1 in Florida who shares with us his high and low experiences at "The Life of a Diabetic." This week, Chris has invited some of us to share pieces of our own D-Lives over at his online home. I'm honored to take part, following in the footsteps of D-Mom Lorraine (This is Caleb), Scott Johnson (Scott's Diabetes Journal), and Cherise Shockley (Diabetic_Iz_Me) who've all done guest-spots this week.

My guest post is dubbed "On The Job," and it follows a point that Cherise discussed in relation to her recent move from California to Indiana and how she went on three interviews in a day all while sharing her diabetes history with interviewers and potential employers. That got me thinking, so I shot Chris some quick thoughts on a similiar train of thought. Thanks, Chris, for welcoming all of us! It's a pleasure. I'll look forward to having you guest-post over here at the Corner Booth before long!

Looking ahead:

Stay tuned for some fun blog posts in the coming days.... Tomorrow, I'll tell you about my Endo Appoint earlier this week and some of the good news received there. But more importantly in the coming days, you'll see a series of posts that have a common theme: community. It's been a rough week with positives and negatives, and so I'll take some time to talk about some of those the Diabetes Community who have and are doing great work. For example, Cherise and I are planning for our first D-Meetup at lunchtime Friday. I'm uber-excited about this - even though it's a shorter, work-day gathering on the lunch hour! I'll recap that early next week, as well as another describing a different D-Meetup set for Thursday evening.

So, see you around!

Wednesday, June 9, 2010

28 Days Later?

There is no reason that obtaining basic living supplies should take 28 Days.

Unless, of course you live in a Zombie World.

Obviously, we do live in this Diabetic Zombie World.

This has been written about before. Some of us have Lows, causing us to behave like rambling incoherent zombies out in search of glucose brains. Sometimes, we have Highs that make us feel like we're stumbling through molasses, or moving as swiftly as a zombie does.

Yet, there are other Zombies in this D-Zombie World of ours - the stupid, rambling, unproductive zombie-like fools who have one basic mission in life: to make your brain hurt and give you the desire to just give them a quick shotgun-blast to the head to stop the craziness.

Insurance companies. Medical supply companies. Mail order suppliers. Local pharmacists. Billing reps.

They invest our lives, and force us to go all zombie-killer Woody Harrelson on them.

That's how I've been in recent days. Enacting my D-Zombie-killing to the best of my ability when it comes to the whirlwind of hassle from a new medical supply company.

Now, at this point it's not yet been 28 Days. It's been 18, though I have no confidence that in the next 10 days those One Touch Ultra Blood Strips will be in hand. Even though Anthem has assured me it's going to happen... We'll see.

This all began May 22, when I placed my refill order ahead of the end of that month specifically because my Anthem insurance was changing at that time. This was a phone refill made by phone, on an order that had eight refills and was based on a prescription first filled in February. My mail order supply company was NextRx, the only one I'd been able to use with my insurer. The order was processed and the company processed my Flex Account card at that time. At some point in the next few days, though, NextRx reversed that order and credited that payment and transferred the order to ExpressScripts because Anthem had changed its supplier - all of this went without any notice to me. Following up on my not-received order just before the Memorial Day Holiday, I learned bits and pieces of what had happened after spending two hours on the phone with various "zombies."

Of course, every single one had to hear the entire story again and couldn't seem to tell me anything about how to resolve this problem. ExpressScripts told me to call Anthem, while the insurance giant told me to call the supply company. This all pushed the calendar past May 31, which then meant my insurance coverage and Anthem account with ExpressScripts was no longer "active." This confused the ExpressScripts idiots even more, and they told me that they couldn't do anything because my account was "inactive" and they didn't know why, or have the power to do anything about it. Call Anthem yourself, they said.

In phoning Anthem on June 1, a nice representative took about 45 minutes on the phone with ExpressScripts and finally "activated" my account. He apparently wasn't a zombie, just worked for the D-Zombie Company.

However, none of that humanity or brain power transferred over and the four zombies at both places and a supervisor of a supervisor in the following days were clueless. All proceeded to tell me they were clueless, and the best solution for me was to just call my new insurance company to order supplies. This enraged me, and despite my usual calmness in defeating these D-Zombies, I unleashed my own fury on one and found myself screaming into the phone at one point. The zombie continued being stupid, though, before I just hung up.

This story is all too familiar for some, I'm sure. You know the drill: Repeat same information over and over... One person can't pull up account information in same way. Different departments and offices.

Ask for a supervisor. Hold for seven minutes. Original represenative returns to phone to explain the situation, again. Cut her off.

Me: Excuse me, I asked for your supervisor.
Zombie: That was who I was speaking with about this....
Me: No, (patient care advocate lady), I didn't ask for you to speak with a supervisor. I requested that you connect me with a supervisor to spaek with.
Zombie: My supervisor says this isn't a supervisor-maintainance required call...
Me: I don't care. I asked to speak with your supervisor, and I'm done speaking with you about this.
Zombie: But...
Me: Are you in the practice of not doing your job and providing adequate customer service?
Zombie: Um...
Me: Please put your Supervisor on the phone. As I've repeatedly asked for you to do. Now!

On hold for another five minutes until the phone goes dead, likely a hang up from their end.

(Sigh)

So, here we are: 10 days after the fact. I fear that it may get to 28 Days Later, even though most recently a nice Anthem woman appears to have overcome the D-Zombie World and my strips may be on the way. (Will believe it when they're in my hands...) Of course, now I'm low on strips. Despite everything done as it was "supposed to be" done, by the current standards written by those D-Zombie Overlords. Whatever.

You should know: This post is written with your own D-Life and Survival in mind. You may have experienced this zombie behavior before. But be warned that it's a growing epidemic. We've tried to address it and take these idiots down, but even with new health care reform, we're unlikely going to be able to do away with all of the zombies. So, be safe and on guard.

Make sure your prescription coverage is updated, that you have current scripts and that you have whatever time may be necessary to combat these forces in the event of a mishap. Remember, a shot to the head works best but sometimes they'll still come after your brains because they have none. In the end, it may take a phone hang up to actually do the job...

Monday, June 7, 2010

The Top D-Cop

We People With Diabetes often voice our frustrations with Diabetes Police, who are those typically well-meaning and nice people who think they're the resident experts on everything related to diabetes.

As with all D-Police Force members, dealing with these individuals one-on-one or in mass can be frustrating and require diplomacy, usually in the form of biting your tongue and instead responding with education or information about whatever the topic might be. Hopefully, it sinks in. But sometimes that isn't the case. That response can be even more tricky when those people are family members or close friends, and it requires a bit more delicacy than strangers or even more casual acquaintances.

In my own D-Life during the past decade, the person who I've come to label as my Chief of D-Police is none other than my mother-in-law. A pleasant woman, she is herself a Type 2 diabetic - which means that her view of the D-World is gospel. I do my best to maintain composure, balancing my roles as a Type 1 since the age of 5 with that of my more important roles as husband and son-in-law. It can be interesting, at times, and Suzi and I usually have some laughs about it after the fact.

Take the most recent three-day Memorial Day Weekend when the in-laws came into town. We enjoyed a great weekend visit that was very much fun. However, I had a Low at one point that took me out of commission for the entire Sunday afternoon and resulted in the mother-in-law's colorful description of my Low as my "Going Stupid" (as recounted in Friday's post, A.K.A Low Blood Sugars).

On the final morning of the visit, we all had breakfast together and were saying our goodbyes in a hotel hallway. At one point, the D-Police Chief emerged and I was instructed to make sure to eat my scheduled meals and snacks in order to prevent Lows. I smiled and nodded, responding kindly and assuredly. Then came the kicker:

D-Police Chief: "We all have our tricks, and you need to find what works for you."

Me: "My bag of tricks is always growing, and after 26 years I keep finding new ones."

D-Police Chief: "Well, you should be better at this by now. Better than I am at it."

The smile faded from my face momentarily. I cleared my throat, felt the blood racing to my face. A quick moment of hesitation prevented words from erupting, and instead of speaking I began to focus on the speck on the wall. I noticed a cleaning cart down the hall, and began pondering how many towels and cleaning containers were stocked on board. I wondered how many steps it would take to get to the ice machine half-way down, and to the front desk, and pool area... My attention turned back to the person in front of me, and though words were still being voiced, I didn't hear what they were.

Another smile, and nod, and then my response as I turned to leave, "Yep. We'll do our best." All with a smile.

Now, for the rant....

What bothers me most is that there's no recognition that Type 1 is something that she just doesn't know anything about. She lumps Type 1 and Type 2 together - a "diabetes is diabetes" mentality that can be just as much true as it is inaccurate. There are different types of this disease, and that translates to the fact that what one person's experience may not be how another variety of diabetic experiences or handles the same situation.  That can be said when comparing Type 1s, because as we know: Your Diabetes May Vary.

I've explained and tried to be educational often through the years, to the point where I know now that there's little reason to waste my breath in trying when a new issue comes up. It's like trying to plug a sink drain hole with tissue, when you know that it'll be washed away as soon as you turn on the water - you save the tissue.
You hope that past educational expreiences will build a foundation, that what you've invested in effort will be put to use and help change how that person responds or interacts with us People With Diabetes. It's like a highway accident, where you see coverage and give them all the traffic maps and alternate routes to avoid the crash but they still drive directly into it and get caught in the jam.

As if Lows aren't bad enough for those of us who experience them first-hand, we then have to endure the D-Police recaps of what happened and hear their views on what they believe could have been differently. All while telling us we're wrong and not taking care of ourselves.

So, all we are left with in response is a sad smile, a happy front that doesn't show the tear of disappointment streaming down your face. But, we learn to live with it and sadly expect it.

What can we do? Other than keep our composure, try to educate and inform when the chance is available, and keep a sense of humor when there is no hope of converting the D-Police from their best-intentions created cause.

The Mayo Clinic's D-Living Blog had a column in mid-May from two registered nurses dubbed, "Dealing with the diabetes 'police'" and it offered some worthwhile advice to check out on this topic. Many other D-Bloggers have written about this topic through the years, including the great NinjaBetic who wrote a column for D-Life a couple years back. Kerri has also created a great Cartoon Vlog about the D-Police over at Six Until Me, too. But in the end, sometimes we must just watch our behavior while the D-Police are watching - like keeping our speeds in check toward the end of the month or when police are out in mass. We mind our D-Management and keep it in even greater check just to avoid the constant hassle that sometimes just isn't worth the effort.

Friday, June 4, 2010

A.K.A. Low Blood Sugar...

You may know them as Insulin Reactions, Hypos, Lows, or by some variation of those terms.

In my world as a Type 1 diabetic since the age of 5, they've historically been "Reactions" that have transition into the more generic "Lows" in more recent years.

The opposite of Highs, which garner quite the confused and befuddled glares when you say out in public that "I'm High" and follow that with the need to "shoot up." (Fun, seriously. Try it out if you haven't already!)

But two new descriptions for Lows came with a recent experience when the in-laws were visiting during the Memorial Day Weekend. It was Sunday, and they'd gone out with Suzi for a day of shopping at a nearby mall while I stayed home with the goal of cleaning up our kitchen and doing some outdoor work while they were gone. A Law & Order: SVU marathon and The Sandlot 2 interfered only briefly, and the plan was to clean the kitchen and do some outdoor work. But, a Low got in the way sometime after the lunch hour and that's what Suzi and her parents came home to. They faced me in a Low state, which is always a guaranteed good time. My Lovely and Supporting Spouse (who's awesome!) managed to get some honey, rasberry juice, and glucose tabs into my system to boost me up, all while her parents sat by as onlookers at a situation they hadn't personally witnessed before - in our five years of marriage or the five years before that. This was a new experience for them, even though it had been described to them from time to time in the past.

Anyhow, once I returned from the Low state and proceeded to apologize and begin setting the table for dinner, there was a moment when I was trying to figure out where to move something that was on the table. Standing in the kitchen momentarily with a look that likely reflected my pondering the placement of this item, a question came from my mother-in-law - a Type 2 who I've described as a leading member of my D-Police Force (a label that was 100% reinforced this past weekend): "Is Mike going stupid again?" she asked. It was a funny description that caught me off guard, and brought a smirk to my face. I took a moment later to Tweet this, and it brought some similiarly funny reactions from some DOC friends.

Later, while sitting at the dinner table and enjoying a low-carb dinner, the father-in-law spoke about a Type 2 diabetic he'd known at work once. We were actually discussing a Godfather III scene where Michael Corleone (Al Pacino) has a "diabetic attack" and then somewhat remarkably has an immediate response to OJ and candybar, and my father-in-law was telling how that former co-worker had once had a quick response just like that to his "shaking fit." Another interesting description, I thought.

So, in the course of a couple hours, I learned new descriptions for low blood sugars: "Going Stupid" and "Shaking Fit." In a sense, both accurate as they describe real-life symptoms (non-rational or coherent thought and shaking). Just phrases that I'd never heard before. Classics, I'd say. Worth remembering and using at some point down the road.

With that, I open up the floor for anyone to share their own descriptions or terminology in describing their Low Blood Sugars. Have any quotable ones worth sharing? Comment away! But please: avoid "going stupid" or digressing into any "shaking fits" as you proceed to offer thoughts... We wouldn't want that.