Diabetes Mine - the all things diabetes blog

Diabetes Diagnosis: The Musical (?)

The winner of this year's Bayer Dream Fund contest certainly has something new and different in mind.  Wendy Coleman, a theater and speech professor at Albany State University in Georgia, will use her award to "compose and perform a play about managing life with diabetes," complete with song and dance numbers.   The piece is called This is Our Story: Learning, Loving and Living Well with Diabetes, scheduled for a brief tour of five southern states starting this August.   

I'm sure there are valuable lessons there, but I'm somehow having a hard time imagining lining up at the box office for a play about this @#$% disease.  So I had a chat with Wendy herself to dig a little deeper into her unique vision.  Here's my mini interview ("minterview"?) with Wendy:

So were you working on a play about diabetes before you heard of the Bayer contest?

I was thinking about how to get the message out about how important it is after diagnosis to really take it seriously and move forward and take care of yourself… and I thought, "What if we do play?"

Who are the characters? And how long is it?

It's a two-hour play with intermission, based on my life and who I am -- how I handled my diagnosis with Type 2 in 2005.  The main character goes to a new doctor, and is told she has diabetes. She goes into denial, walks out of doctor’s office and literally drops the prescription slip for her glucose meter into the trash can -- like this didn’t even really happen to her.  She's experiencing symptoms, fatigue and the rest...

Later she has a "Dickens moment" where her Aunt Bessie comes back from the past and walks her through history to help her understand that "this is not just about you; it's about the past, present, and future –- those who will come after you."

I'm still having trouble visualizing a Broadway version.  What are some other key scenes you can share?

Her "aha moment" is when she meets her great grandfather who's going to be a Baptist minister.  Then she begins to understand more about who she is.. I'm also a minister (an assistant pastor at a local church in Albany), so this ties into my life.  She  sees him struggling with some complications of diabetes.  He’s in a wheelchair, and he says "it's because I was too proud and too busy and I didn’t want to go to the doctor."  They have a real heartfelt conversation about how he comes to understand his health.

I'm trying not to make it drab and dreary.  We'll use a lot of humor. Mostly we have young actors embodying elderly people -– not as characatuers, but they bring life and enjoyment to the depiction of being older.  There's also lots of dance and singing. We're working on the lyrics with an experienced musician, and we'll will bring in a dance company to do some of the dance scenes.

So what would be your measure of success for this play?

I really want to see people encouraged to get monitoring, to learn their medical history, and their family history. And if you're diagnosed with diabetes, to know it doesn’t have to be a death sentence.  It requires some changes, which can be simple, but can make a world of difference.  I also want them to not be embarrassed and afraid and ashamed if they're diagnosed.   

For me personally, working on this has already had an impact on my diabetes care.  I'm more conscious and more responsible in taking care of myself.  I don't ever want to be a hypocrite: if I’m not doing it, then how can I tell others what's right?

I'm hoping that after our last Dream Fund performance in December, the play will catch on and we'll get other sponsors and be able to take it all over the country.

Well Wendy, I'm still having a bit of trouble picturing it.  But heck, if plays with names like Menopause the Musical and Urinetown can make it big, I'm sure there's a chance for one about an ailment effecting as many millions as diabetes does.  Break a leg!

KT: Mother, Entrepreneur, Diabetes Advocate

Karen Talmadge is has a PhD in biochemistry from Harvard.  She's currently the executive VP, co-founder, and chief science officer of Kyphon (orthopedic), which was purchased last year by Medtronic for $4 billion.  But first and foremost, she's the mother of a daughter who's had Type 1 diabetes since the age of two.  This, she says, is what fuels her passionate work as an advocate for ADA and supporter of a number of entrepreneurial diabetes-tech companies over the years.

I recently chatted at length with Karen about this fascinating mix of personal D-struggles and being a scientist/businesswoman.  Among other insights, she makes some very compelling arguments about why she's chosen to work so closely with the ADA rather than JDRF.  She supports them both, of course, but there's nothing like a scientist/mother for the ultimate in pragmatism.  Take a read for yourself:

Let’s start with your personal connection to diabetes. How did you deal with your toddler's diagnosis? 

It was just a few days after Nicola's 2nd birthday. She was still in diapers. We just thought we needed bigger diapers, because she was wetting the bed so much. She would stand in front of fridge by the  water dispenser and yell, "wawa, wawa!"  She wasn't verbal yet, but we thought something might be going on.

It was Indian summer, incredibly hot.  We had my brother's birthday party on Oct. 4, and she kept soaking her diapers.  Her Dad took her in, and the pediatrician said it was just the hot weather.  The doctor glued a little bag on her to pee in it, in order to measure the urine.

I’m a biochemist and researcher in diabetes and obesity, and my husband John is also biochemist focused on immunology.  At one point we just turned to each other and said, "it's diabetes."

Was there any family history?

No, but 75% of cases of new onset Type 1 diabetes have no diabetes in the family.

In fact was the classic season of Type 1 diabetes onset, October.  There's a theory of the infectious component, the so-called “final insult” that hits the pancreas that's pre-disposed to diabetes at that time of year.  It may be infection (internal), or toxins (environmental), who knows?  There's no definitive evidence yet, but the peak appears to be late September to mid-October.

Your daughter's a teenager now, correct?  Did you mainly manage her diabetes for her while she was growing up, or try to push her to take charge herself?

She's 17 now, a senior in High School.  She was an avid soccer player, but she 's had a mid-foot dislocation, common to soccer players and people with diabetes, that's stopped her career in soccer; she's mourning over that.  She developed arthritis in her Lisfranc joint that will always be with her. Otherwise she's doing great.

Our philosophy was always: if she can do it herself, she should.  One day before her fourth birthday, she grabbed the meter and said, "I do it self."  Our doctor was astounded.  You know, we tend to assume people can’t do things, like kids making good food choices. They can. 

But those were also days when the medical dogma was no glucose at all for people with diabetes.  They were told they should eat maltitol (sugar alcohols) instead, which cause diarrhea and stomach cramps.  We always incorporated some natural glucose into her diet.  We incorporated dessert into the carb count.  In fact, she got "shot treats" -- we put candies in jars, labeled 2, 3 or 4g carb.  She could have any combination up to 6g, but no more.

Basically, our was goal to teach Nicola everything we knew about diabetes, the underpinnings and the science.  We figured, "it’s a huge thing that effects your life. We need to focus on it now, so that later we don’t have to…"

Did you get involved with ADA right away?  Most parents seem directly drawn to the JDRF.

I had just recently left field of diabetes to focus on osteoporosis.  But with a little child it’s very, very hard.  Everyone controls what they can control.  I felt felt drawn back to diabetes, so I revved up my professional membership in ADA, and went to their annual conference. 

I told an NIH scientist about my feelings, and he said, why don’t you volunteer for the ADA?  Having a scientist involved on the advocacy side is rare.  So we started doing the fundraising walk, and the first year we raised $1000, then the second year $4000, and so on.  I got a call asking me to set up a chapter on the San Francisco Peninsula in 1996.

I know many parents drawn are drawn to JDRF, and they do great work.  But it is short-sighted to think that Type 2 doesn’t have important relevance for Type 1 diabetes and and vice-versa.  Scientifically, they can benefit from many of the same discoveries. 

The ADA sets the standard for diabetes care in this country, and they have a legal advocacy group that interfaces with the police, the prison system, etc. They lobby Congress to help diabetics get pilot's licenses, truck driver's licenses, and to secure research funds.  Here in California they just won an important victory with the School Nurse Association.  That group has finally agreed that non-medical professionals can help treat diabetic children in school. Before, it had to be a school nurse, but there are virtually no school nurses anymore.  The ADA finally brokered a settlement.

The other aspect is professional education. The ADA offers seminars, post-graduate courses, etc., and this is very important because the level of understanding of diabetes in the medical profession is not where it should be.  The ADA has dedicated itself to being advocates, providing education, and funding research.  They just have a bigger scope overall.

When kids experience discrimination in school, the JDRF sends the families to the ADA for help. JDRF does participate, by submitting supporting briefs for example, but they don’t take on litigation themselves. Their focus is on the research and the cure.  Meanwhile, we live with diabetes and live with discrimination.  People have diabetes today, and they need help today. 

You’re also now on the Board of Directors of the ADA Research Foundation, which has been criticized for not putting the funding dollars in the right place.  In brief, how does that group function?

The priorities are set by the physicians who advise the ADA, using rigorous, scientific guidelines provided by thought leaders.  As board members, we raise the money.   

I'm actually new to this role -- I'll have my first meeting in May. In the meantime I'm making phone calls.  And I put my money where my mouth is.  We gave a major gift ourselves the last few years.

I'd say the projects are split 50/50 between Type 1 and Type 2.  But the reality is, most research is relevant to both -- the process of complications, insulin resistance, the alterations of the pancreas that take place in Type 2, which are also very important to understanding Type 1, for example.

How does your passion for these advancements translate into your work at Kyphon?

I met a surgeon who conceived of an operation to address fractures of the spine caused by osteoporosis. Before that, treatment was painkillers and physical therapy.  There are enormous health consequences, leading to spinal deformity, caused by actual fractures of the bone in the spine. This is what causes people to bend forward (Dowager’s hump), and it's much more painful than generally recognized.

The surgeon had invented an elegant procedure whereby you insert two tiny balloons from the back into the bones that are crushed.  You inflate the balloons with liquid, which compacts the inner soft destroyed bone, and you can see the whole shape of bone moving back toward normal.  They you can fill the space with a liquid plastic that hardens. It's all done through two little straws -- very minimally invasive. This is called Kyphoplasty.   

I ran Kyphon for five years before it was bought by Medtronic last year.  It was exciting and scary, very different -- whereas the emotional part of a disease is very difficult. It’s hard to accept.  You try to put it in the background so you can go on and live your life. 

What diabetes technologies or treatments or advances toward a cure look most promising to you -– let’s say to be realized in the next 5-10 years?

I don’t know of anything I’d be confident to say will be ready 5-10 years from now that's really meaningful.

After Nicola was diagnosed, I called a couple of tremendous physicians and researchers I knew to let them know, and they said, "we'll have islet cell transplantation 10 years from now."  I said that knowing the complexity of the disease, it's not going to happen.

I don’t want people to give up hope because every day we’re learning more about the cells that make insulin, how to potentially make those cells, how to keep alive when they're to put into people.  People are working on it day and night. The big issue is, how safe is this?  We have to go slowly to be sure it works and works well. It's very complex, there are lots of problems to solve. That’s why it's taking time.


So as a health executive and also an effected mother, what would you say to other parents of children with Type 1 at this juncture in time?

I’m grateful for every single thing that’s being done right now to help make it easier for people with diabetes to get through the day safely with good blood glucose control. 

Every parent has their way and their philosophy. I don’t know what they feel and what they're going through.  But know what I felt.  It’s terrifying to have child at high risk, but if you're overbearing it will backfire. You just need to control the diabetes, so they can get on the swings and go play soccer.

Never ever be ashamed. You test anywhere anytime.  Be comfortable with it and help other people get comfortable with it.

Remember: you can’t get it wrong all the time.

Thank you, Karen, for sharing all of this with the OC. There's nothing quite as encouraging as (measured) hope grounded in solid science. 

Local Heroes

I know there are many unsung diabetes heroes (and heroines) around the country -- people who've devoted their lives to helping others with this potentially devastating disease.  Two come to mind, leading the fight in some of the most disadvantaged parts of the country.

First off, there's Wil, a Type 1 himself who's suffered from severe hypoglycemic awareness and an early D-blogger who's now become the Diabetes Coordinator at the nonprofit Valley Medical Center. He wrote to me recently to report that at this federally-subsidized community health center serving about 1,000 square miles of "rural dirt poor" northern New Mexico, state funding for test strips for indigent patients has been cut back drastically.  He explains that many drugmakers offer what something called PAP, which stands for Patient Assistance Program.  The folks at Amylin and Novo have been very good about offering free product to qualified PAP patients, he explains.

"But no PAP for test strips. No generic for test strips... God help you if you are working poor with or without insurance," Wil writes.  They're still paying nearly a dollar per strip for the one thing his patients need most.  And what good are all the drugs if you can't monitor your BG levels?

Wil and his supervisor have started a letter-writing campaign to senators, state authorities, and the regional advocacy director for the ADA.  From the latter, he was shocked to hear back that "more and more insurance companies are re-classifying test strips as Durable Medical Equipment (DME). Many insurance policies only cover 50% of the retail costs of DME; and many have an out-of-pocket deductible separate from the main policy." Aargh!!  But Wil keeps up the good fight, despite the odds.  Kudos to you, Wil.

Then, in rural South Carolina, there's Florene Linnen.  I wrote all about her in this month's Straight Up column at dLife. She's a 65-year-old woman with an amazingly vital spirit and a natural knack for advocacy.  She helped found a community diabetes program in rural Georgetown, SC, where diabetes is rampant and amputations and dialysis used to be as common as the flu.

She's devoted her life to visiting poor patients in their homes and churches to educate them about diabetes.  She's also become a voice for their concerns to the Powers That Be.  She recently outlined some of the biggest hurdles her diabetes-ridden community faces:

1) "The doctor doesn't talk to me in a way I can understand.  He says, your A1c is high, but what is A1c and what does it mean to my health?"

2) "We're hurting for money. The doctors say patients don’t follow instructions. But if people here have to buy a vial of pills for $50, or buy shoes for their kid, two to one, they’ll buy the tennis shoes."

3) "The doctors don’t listen. They rush you in and out."

4) "Eating right? That's hard, just to afford it. If a loaf of wheat bread goes for $3.19, and somebody sees a big pack of cinnamon buns for $1.49, they'll take the buns most of the time."

Read the column for more details on each. 

Even as we web-savvy folks are breaking new ground with all sorts of Health 2.0 applications, numerous communities suffer from the very basics of poor diabetes care.  There's so much work to be done.  We need more Wils and more Florenes in this world. Thank you to everyone who's active on a community level.

btw, I do hope that part of my involvement with the emerging Diabetic Connect community will be reaching out to these communities where diabetes hurts the most  -- not just with web tools, but with something more tangible to help them get their health on track.

Diabetes Blogs Can Change Your Life

Michaela Byrnes (nickname Kayla) is an adorable 21-year-old college student in Massachusetts who was diagnosed with Type 1 diabetes five years ago.  She found me online recently -- and through me, discovered the entire Diabetes OC.  I'm very grateful to report that our just "being here" seems to have helped change at least this one life. 

"My mom actually found this stuff, around Thanksgiving 2007," Kayla tells me.  "At first I wasn't that interested, because many of the topics didn’t really speak to me… the information was interesting, but I didn't find someone that had experiences like mine.  Now, the more I look into it, the more I find things of value here, and I want to connect -- to talk about topics that seem 'taboo.'"  What Kayla really wants to do is start her own blog for PWD college students walking in her shoes.

In her own words:

Here’s what I’m wondering: Do any other diabetics feel like there are some questions that no matter how you phrase it cannot be asked or answered by a medical professional?  Like, Excuse me Doctor, but, how exactly am I supposed to fit into those cute skinny jeans that everyone’s wearing with this pump attached to my butt?

Rather, enough is enough, I get it…I’m supposed to watch what I eat, poke my finger and carry a juice box in my purse and after all that, somehow manage to still be the 21 year old girl who loves dressing up and going out with her friends? 

For years, there was a part of me that felt I had to hide my “fun” side from my doctors, talking to my doctor was more stressful than talking to my parents when I stayed out past my curfew. Recently, I’ve been blessed with the most wonderful doctor, when he told me he had a daughter my age, I felt like I had won the Medical Professional Jackpot. Yet, it took me almost 6 months after my 21st birthday to admit that one of my greatest enjoyments in my young life is going out with my girlfriends and (Gasp!) gossiping over a cocktail or two.  I’ll never forget the day I decided that I was going to ask my doctor how to bolus when drinking beer. I was a nervous wreck all day; surely he would think differently of me as a patient, my palms were sweating as I interrupted him and blurted out “I drink beer.” Surprising to me, he simply explained what precautions to take and didn’t kick me out of his office for being what I considered a “bad” diabetic. Even now as I write this, I am worried that perhaps I am too self-critical or vice versa, that I’m the only diabetic in the world who loves a good beer now and again.

What I’ve realized through my discovery of the online community and through several other epiphanies’ is that diabetes does not mean sacrificing “you,” it’s all about adapting to fit diabetes into your life. When my Mom found the blogging community, I began a fervent search to find the “answer” to questions that have bothered me for years.  The diabetes part is manageable, it’s figuring out how to maintain your “fabulosity” that I’ve found to be the tricky part. Fashion Designers don’t cater to normal sized women much less the pump girls of the world. However, I’ve found that after years of hiding my body and my pump, it’s not worth it. Diabetics should flaunt what their momma’s gave them just as much as anyone else, after all, we do it all…We’re smart, beautiful, fun, interesting women AND we have diabetes. 

Let’s focus on the positive; I don’t want diabetes to define me but rather motivate me. What I’m trying to get at is my idea for my own blog, I want to create a space where I can talk about the topics that other diabetic women understand and have experienced. I personally don’t have any friends with diabetes so anything I’ve learned has been from my own mistakes and discoveries about fashion, sex, going out, exercise, work, travel, boyfriends, etc. I’ve been thinking about this idea for some time and discovering DiabetesMine made me realize that I’m not alone, and what I’m hoping is that I can get some feedback on my ideas from some fellow fashionista diabetics. I believe there is a fun side to diabetes; it’s just harder to find. Thanks Amy, for giving me this idea!

Thank you, Kayla, for just being so real.  I can certainly relate to all your concerns -- even as an early-40s mom. I love a hot outfit and good drink, too.  But I bet there are loads other teens and college students who can relate even more closely.  If you're out there, Gals, step up and say hello to Kayla!

Meet Ranae Whitmore: "Heartgirl" Who Transformed Her Life

Attention, please: This lady knows how it's done.  If you don't think you can lose weight, get healthy, and turn your life around, read this...

I met Ranae Whitmore at the recent Health 2.0 conference.  She was there because she is an example of the most amazing Health 2.0 success story you can imagine.  In the last 20 months, this 52-year-old Red Cross employee from Iowa managed to transform herself from morbidly obese and dejected to a healthy weight and healthy attitude using an array of online tools and communities.  She's lost 140 pounds and is well on her way to losing the last 30 she wants off, plus she's now dedicated herself to helping others find the connection to Web-based tools, support and friendship that made the difference in her life.

Ranae, a most sweet and intelligent lady, talked with me at length about her epiphany and where it's leading her:

DM) Where you always heavy, or how did you get to that extreme place?

When I was younger, I weighed more than the other kids.  I got teased about it, so then it becomes kind of a self-fulfilling prophecy.  After I had my daughter (who's now 31), a lot more weight came on.  In hindsight, there were a lot of emotional issues I wasn't dealing with.  I was just eating them.  As I 'didn't deal,' my weight eventually came up to 330 pounds. I'm 5'6".

DM) Did you just not realize...?

Oh, I knew. I came from a medical background -- I used to run the front-office of a doctor's practice -- so I knew all the risks.  I knew I could get diabetes, heart disease, and much more. I even developed asthma symptoms, which the doctors said were not related to my weight, but they were.  I just couldn't get myself to do what I needed to do.

I wasn't very mobile.  Taking the stairs was a major project. Imagine picking up another human being and carrying them around with you all the time.  That's what I was essentially doing.

DM) Was that the impetus to take charge and make a change?

No. It took the kindness of a stranger.  At the time I was working for Maytag, which was going through a difficult merger with Whirlpool.  I was working with this gentleman in another state over email and phone calls.  He really validated my work, and me as a person.  He stood up for me when things got tough.  He made me see myself through his eyes.  And I thought, "If a stranger can show me this integrity and caring, I should do that for myself, too.  It's time to start taking care of me."

To this day, I haven't met the man in person, but he changed my life.

DM) So how did you get involved with all the websites?

Actually, it started with email.  I created an email network of friends and supporters.  Then I started searching for calorie counting sites, recipe sites, exercise sites, and the like.  At one point, after I'd already lost 110 pounds, I hit a bad place.  I'd started binging and purging.  I knew I couldn't go back, but I also felt powerless to go forward.  The old behaviors started popping up, but I just couldn't return to that place.  One day I just started searching for "support," or something like that, and I stumbled into DailyStrength.org.  It was the best decision I've ever made.

DM) Wait, you mean you lost all that weight even before discovering the community sites for support?  How did you do it?

I'd tried all the diet programs; I knew all the right things to do, just like most people who are extremely overweight.  But it finally became really clear to me that what you eat minus what you expend equals your body size.  It's simple physics.

I bought a scale and started weighing and measuring everything. I cut out the junk food and focused on fruits, vegetables, whole grains, and lean meats. Heavy on the protein, which helps you feel full longer.  I put signs on my cupboards that said, "STOP: are you REALLY hungry?"  A lot of times I wasn't. Eating was just an emotional outlet. I'd just grab something and throw it in my mouth.

I stared writing down everything I ate -- boy, that was eye-opening!  And I researched restaurants online before we went out, so I knew what I could order. (I always ask for a box right away and put half the portion out of sight before I start.)

For exercise, I started with walking, which is easiest, and then I used home aerobics videos. Later I finally got over my fear of being so fat -- of having people make fun -- and I joined a gym. I started using the treadmill and weights.  I figured if they wanted to laugh at what I was doing, taking care of myself, then let them laugh.

DM) So you hit this crisis point, and then you found the Social Media sites?

I'd say the support community is crucial. They helped me through that rough spot, and they've kept me motivated and going even on the worst days, when I want to pull my hair out.

A group of us got together and started organizing weight-loss challenges.  For that we used Yahoo Groups and a site called SquareSpace, where we could post goals and our daily progress. For the first one I was a team captain.  We had five teams of 10-11 people each, from all over the country.  I also met a new friend who lives in London, and we talk almost every day now.

The latest weight-loss challenge was leading up to Valentine's Day. We got a group together and used Skype for our calls about organizing the challenge.  That was also about 50-60 people. We use DailyStrength a lot, where I'm known as "Heartgirl."  The anonymity was important, since at the time I didn't feel like broadcasting my problems to the entire world.

DM) So what does life look like for you going forward?

I'm now at 193 lbs, and my goal is 174.  I used several height-weight charts to figure out my ideal weight.  I'd like to reach out and help others change their lives this way, too.  This is an issue that hits people across the board -- young, old, big, small, different backgrounds.  But you have to feel that you are worth it, that you are valuable.  It's also so important to be in contact with other people who can validate your issues and cheer you on.  That's what I'd like to do with my life.

NOTE: See Ranae in the Glamour blog this month (!)  She does not have the 'betes, btw, but is thinking of starting her own weight-loss blog, and getting involved in online communities in some more formal way.  Got questions for her?  Or ideas?  Please feel free to post them below.

Holy @#$! Amazing Stories, Vol. 12: Being Me - Lessons from a PWD/PSR

Ever wonder what it's like "working for the other side?"  Michelle M. felt compelled to share her story of "straddling the fence" with me, and I share it with you today.  Read on.

So what’s it like being BOTH a “PWD” and a “PSR”?

What? You don’t know what a “PSR” is?  Let me elaborate. I am, what most everybody hates to love and at the same time loves to hate… a pharmaceutical sales representative. Oh, and I should probably mention that I am equally as lucky since I am also a person with diabetes. Like you, I wear the “red badge of courage,” carry the burden of a disease that has a mind of its own, yet is far more controllable than many will admit.

As a person with Type 1 insulin-dependent diabetes, I am fiercely independent. I refuse to let my disease control me and strive to control it.  I am a “good” diabetic, checking myself an average of 10 times per day. With my career, comes the blessing of knowledge exposure and the expectation to own it. That being said, I have tried most everything that is out there: CGM (continuous glucose monitoring), all of the “analog or mealtime” insulins and even the most recent “advance” with untethered insulin pumps. I have even tried Symlin and its counterpart Exenatide (which of course is “off-label”). I have a strong opinion by way of my travels and the knowledge that I have picked up which has given me deep-rooted opinions. I expect nothing but success from myself since I must lead by example with the career that I have chosen. I by no means write to suggest that my experience should be indicative of what you expect, but I do write to tell each and every diabetic, type 1 or type 2, to be your own champion!

I recently had an opportunity to listen to an Endocrinologist speak to myself and my peers at one of our meetings. Throughout his presentation, I kept thinking, “tell me something I don’t already know”, “give me something new”. To my surprise, I walked away with something that was so basic yet I am willing to bet that 98% of us don’t do it.  What is it you ask? S imply stated, how many times do you find yourself behind the wheel driving down the road, NOT having checked your blood sugar…?  Yeah, I’m talking to you. Many of us swear that we know when we are “low” and we can recognize the symptoms, which may or may not be true. I recognize when I’m low, but I’ve started to test that much more since my job revolves around driving in my car from office to office throughout the day. Without that “knowledge” of where your sugars are when you are behind that wheel, you risk the chance of hurting yourself, your family and those around you, not to mention their families. Bottom line, you owe it to yourself and those driving their cars around you -- not to mention all of those families involved. Thus, my lesson -– test yourself and if you don’t like to test with the frequency that I do, invest in CGM, it's worth it. I share with you the following story of a former colleague of mine:

A diabetes educator who herself had diabetes and from what I was told recently hyperglycemia unawareness. She lost her life right before Christmas while behind the wheel of her car. While thankfully she only “bumped” a few cars around her (as again I was told), her car careened off the road long after the off ramp she was looking for. She left behind her husband and two children after retiring from her full time job just two weeks before this incident. She won’t get to see her recently engaged child get married and she will never see the grandchildren she desperately wanted. Simply stated, hers was a life cut short.

And now, the other part of who I am, that being a pharmaceutical sales representative. The basis for my job is to bring information to the physician, to be a resource to your doctor. I am also supposed to partner with your doctors staff all in the name of making it better for you as a patient. We bring samples and supplies for the physicians so that they will get the clinical experience, and thereby expertise with our medications in addition to giving the patients a “leg up” when having to start a new medication. While there are many reps out there that seem to monopolize your doctor's time, we are not all alike. I sympathize with you for what it may in fact appear to be or for that matter actually be… somebody who is taking your time up with the doc and making the doctor run late. Just remember: some may do that, but there are others like me that are respectful of you as the patient, the staff and physician, because I know just what it's like to be you and I respect that. I’m different because I hold myself to a higher standard. I am empowered by my job in pharmaceuticals because the information is with me each and every day. I want for each diabetic patient to own their disease with the same determination that I have. I want each of you to be successful in the management of your disease. Bottom line is that I expect a lot from myself as the pharmaceutical rep because I walk in your shoes, and you as the patient should too.

So next time you see one of us, stop for a moment and think. Value me for more than the samples I bring and the time I take in the office. Also, be your own champion and ask the questions, learn and challenge your docs, they deserve it as much as you deserve the highest standard of care a diabetic patient can get!

-- Michelle M. in CA

A Talk with Elliott Yamin: Diabetes Street Cred

Today is World Diabetes Day!  In New York City, and around the globe, hundreds of monuments will be lit up in deep sky blue to turn the spotlight on this devastating condition.

Elliott Yamin, the American-Idol-borne pop star who's stepped out recently as a huge diabetes advocate (he was diagnosed with Type I at age of 16) will be singing today on the UN lawn.  Man, I wish I could be there!  Because after our recent telephone interview, his raspy voice and gritty street-smarts about living with diabetes kind of got to me.

God knows this isn't the first interview with Elliott on diabetes.  He was on the cover of Diabetes Forecast last month, and talked to Diabetes Health magazine last year.  But I like to think this earthy, Rhythm & Blues sensation was just a little bit more candid with a homespun diabetes blogger like me.

Elliott, you dropped out of high school early, right?  Was your diagnosis at age 16 part of that?

I dropped out of high school because I was a knucklehead.  I'm more of a dreamer than a doer. School just wasn’t my cup of tea. I learned a lot of things on my own. I've always like to work hard.  It's just part of my life.  I started working and earning my own keep earlier than a lot of others.

I think sometimes to experience the best of things, you have to experience the worst.  I was skipping injections.  I was passing out and ending up in ER. I don't know if I hit one single rock-bottom moment, but it was a mess. 

I didn’t really start to shape up till I met my friend Harvey at work who was using an insulin pump. I saw how helpful it was, but also how disciplined you have to be.  My doctor wouldn’t put me on it unless I could show that I was maintaining my blood glucose levels, learning to count carbs, bringing my A1c level down.  This enabled me to get on the pump, at about age 21, and ever since then I haven’t had any bad spells.

If you could go back now, what would you say to your 16-year-old self?

I would grab myself and shake myself a lot. And I’d say: “Dude, get a grip on your life. You’re going to be a man soon. You’re already the man of the house. Start taking care of yourself!” It’d be all tough love.

This may sound silly, but what bugs you the most about having diabetes?

What's the most annoying thing? I’d like to just be able to sit down and eat whatever I want and physically feel OK. I'd like to feel uninhibited for once, without the ramifications... You know, like eat a couple slices of pizza be able to feel like a normal person.

The high blood glucose, the low blood glucose -- it's all a pain in the butt.  I could really do without jabbing myself with needles all the time. The pump helps a lot.

So where do you hide your pump?

I don’t hide it anywhere. It’s right on my belt. You can see it my concert pictures, when I’m jumping around it’s bobbing around with me.

I meet so many fans who have diabetes. We like to compare pumps, and we take pictures… we did that last night in fact!

Does your diabetes experience play into your music at all?

It’s a part of my makeup, part of who I am. It built a lot of character, for who I am now. That comes out in the way I write. There are some inspiring songs on my new record –- a song called FREE for one, about how nothing’s impossible. You can achieve the unexplainable…

So you told Diabetes Forecast magazine that you want to help get research dollars to the right place, toward a cure. That’s a big concern. How will you go about it?

I think there's a web site on how the funds are being monitored (note: for example, HERE). I don't know that much about it.  I do know that we can make a difference in people's lives just by just being part of different charities and fundraising events.

Right now I'm representing Inspired by Diabetes sponsored by Eli Lilly, which is a creative expression competition where people can express themselves in art, words, pictures, and of course, music. There are all kinds of great prizes, backstage passes and such.

I know we're making a difference with this program because with every entry, the sponsor Eli Lilly provides insulin and supplies to kids in 13 different countries around the world.  Lilly is also offering money for scholarships to diabetes camps.

I’m trying to do my part to help raise money that will directly raise the quality of life for people with diabetes.  There are people right now at this very second who’s blood sugars are so high –- dangerously high –- because they don’t have access to insulin.

I can’t imagine my life without insulin. I wouldn’t survive –- wouldn’t be able to be an advocate, to share my gift with the word.

It’s a shame how medicine is so privileged right now. So many people don’t have access to the medicine they need to survive…

So you didn't have any qualms about telling the Idol producers and team that you had diabetes?

Not at all. I made sure I told all the powers that be, and made sure I had what I needed: snacks and sugar on the set if I needed it.

When I started to get the media attention, I thought from the very beginning that this is it. This is my chance to help make a difference in a disease that I have –- that so many people have and suffer from.  It's been great.

OK, so nobody's perfect.  What are some of your favorite “taboo” foods?

I have a weakness for Little Debby strawberry shortcake rolls, if you really want to know. Right now I'm also trying to stay away from caffeine. It's a guilty pleasure. My cousin in North Carolina brought me a whole basket of fresh baked cookies a few weeks ago.  I got to try a few, but mostly the band ate them up.

I'm also a pretty active guy, thankfully.  I do situps, toss the football around with the crew, and of course, perform on stage. That's pretty strenuous.  Oh, and I do those Perfect Pushups. You've seen the infomercials. (raspy laugh)

Any tips and tricks for people with extremely busy schedules on managing their diabetes?

I'd say, you have to deal with it now, because if you don’t, it will get you later.  A lot of people ignore it, like I did.  It's easy to get caught up in our everyday routines, busy lifestyles… but I know especially having the pump makes me pay attention. Because it's there. On my body. Every day when I get dressed, come out of shower... I can’t go anywhere without it. It reminds me that I need to take time out of the day for myself.

Even if you're not feeling it now, diabetes really does affect you in the long-term. Diabetes is a leading cause off all kinds of other problems with your body -- heart, liver, eyes. I'd say: Understand how important it is in the long run!

Thank you very kindly, Elliott.  I'll hear your music with a real sense of kinship now. And I'll send any kids I know with diabetes straight to your story.

(Editor's Note: Catch the video feeds of today's events HERE)

Whatever Happened to...?

One drawback of blogging is that we tend to get all fired up about a topic, and then drop it like a hot potato.  I've been posting here at DiabetesMine.com for three years now, and some great stuff has gotten buried in the process.  So here's the first edition of my new series called "Whatever Happened to...?" in which I'm planning to periodically revisit some people, products, and opinions of posts-past.

From the Diabetes Partner Follies, September 2006: Linda Blice

Hi Amy,

Nice to hear from you. We are doing OK. My husband is much better about his eating and his meds. His doctor has switched him to Januvamet from Avandamet and it is doing a better job for him.

For myself, well, I have lost my health insurance and now am having to deal with trying to pay for my meds and doctor visits. It is very frustrating and disheartening trying to find help.  We lost everything in a house fire back in April of this year and the biggest loss besides one of my pets was my insulin pump and meter that went with it.  We also lost a c-pap for Ariel's sleep apnea. With no insurance we had no way to recover our losses. So we keep plugging along.

Well, thats really all I know. Keep up the great work you are doing with your blog, its helping a lot of people.

Take Care,
Linda

****

Dear Linda,
You are an angel.  You must be a very positive thinker to start out by saying you're both "doing OK."  Sounds like an extremely frustrating year.  May 2008 bring you improved health and increased joy!

****

From the Holy @#$! Amazing Stories, April 2007: Marie Dysli

Dear Mrs. Tenderich,

I've been meaning to send you an update for a while but never had the chance. So much has happened since the hospitalization! I've had really good moments during which I thought I was "cured," but relapses also. But that is normal. In a word I think I can say that I'm better.

It's been about four months since I went out of hospital. I am now physically strong and have more energy than before on the whole but still need to rest quite a lot. I do not throw up as much as before the hospitalisation, and there are even days when I do not throw up at all. This big change is mostly due because of a new mental attitude more than an awareness of how dangerous it is. I still have weekly appointments with my psychiatrist and taking an antidepressant. I'm back at University and already under a lot of stress, which does not help the eating disorder but it's not as serious as a few months back. My hospitalization is a really bad souvenir; I am sorry if it discourages some of you but for me hospital is like a prison, and the nurses and doctors (not my usual one) didn't trust me at all food-wise, which does not encourage me to talk to them about the eating disorder, or anything else for that matter.

Unfortunately, my BG is still high. Maybe slightly less dramatically high but still. These things take time so I'm not pessimistic and neither are the doctors. It's already a big step that I do not throw up every day. What's more I'm doing more injections now; at least 3 - morning and evening with Levemir and a Novorapid bolus in the morning. The fact that I'm back to my studies motivates me to do them and with the food because I can't study properly if I have to fight a high (trying not to fall asleep during class!!) or if I'm weak because of the lack of insulin and food.

I've been able to run to catch my bus several times these last few days! It felt wonderful! I was even surprised I could run and climb the stairs :-D It feels really good.

I hope those of you who have such issues as I have see a little bit of hope in my story. There were times when I thought I would never be "normal" or "better" but the doctors were confident and hopeful. They were right!

I wish you all the best (even if we have this bloody diabetes!),

-- Marie

****

Dear Marie,

We're so glad to hear things are looking up.  What can I say?  Every cloud has a silver lining?  We both know that you yourself have to be in a condition to see the lining as silver, not gray.  Stay well, Marie!  And keep believing in "better."

Holy @#$! Amazing Stories, Vol. 11: Even Health Employers Don't "Get It"

It's really crazy how ignorant some otherwise-intelligent people can act around chronic illness.  Even people working in supposedly progressive health institutions. Here's a note I got lately from a woman in Germany (with an English mum), who lost her job in a medical lab over her diabetes.  Yes, she did have some issues with hypoglycemia.  But she feels her employers knee-jerk reacted, never giving her a chance.  Her story:

I am 37 years old and diabetes hit me when I was five, so 32 years makes me quite an expert! To top this, I studied medicine and recently I was working as an intern at a big lab.

On the occasion of the events, which occurred at work, I wanted to use the chance to communicate that an equal treatment of people with diabetes is unfortunately not given everywhere. I am an intern in a large laboratory in Ingelheim, Germany, or better said, I was. On the 15 of September, my contract ended and although personnel requirements exist, a new doctor was hired for October, and they didn’t offer me an extended contract.

In contrast, my two colleagues, who began the professional training approximately at the same time, were hired on. That is, both were hired after they terminated their professional training and took their holidays, which they had saved up.  They were then financially secured up to the board certification as a specialist in laboratory medicine, and afterwards they were transferred to a "safe unlimited employer-employee relationship."  Both of them were paid as specialists even before passing their exams.

In contrast, my contract ended on the 15 of September, and I am now unemployed (disadvantaged) without prospect of finding employment before my board certification, currently job searching and preparing for my exam. Three not-insignificant loads together.

Surely they never told me directly into the face that I am not further-employed due to diabetes. That would have had consequences pertaining to labour law.  At a time, in which I had frequent hypoglycemias during work, I was told in an eye-to-eye conversation with my boss, that one would have to think about a continued employment, "if this condition does not change."

I eliminated the frequency of hypoglycemia with the help of my endo and a change of my insulin.  Also, I was not otherwise more frequently ill than others, never received a dissuasion, and my certification was above average.  Additionally, being a “half” native speaker, I worked for our international marketing, advising doctors from Saudi Arabia.

Why does one have so many problems with chronically ill persons in a company in which almost exclusively medically trained humans work, and daily many samples of diabetes are examined?  Is it the fear to have to bear later cost and down-times?  Or it is simply the thought of having to "work" with such persons (possible treatment of hypoglycemia, etc.)?

Particularly sad is that the brother of the medical director of the laboratory is the director of a diabetes hospital, so that at least a knowledge about what a person with diabetes can accomplish should exist.

Luckily, the work situation for medical doctors in Germany is very relaxed at the moment. I did find a new job in a very short time and I am now preparing for my exams.

Thank you again for you fantastic web site, you are a great inspiration.

-- Kerstin W.,
Wiesbaden, Germany

Thank you for sharing, Kerstin. It boggles the mind how (medical) employers can be so short-sighted, all over the world, apparently.

Noah's Voyage: No Rain on This Parade

Call it weird. Call it crazy. Call it magical.  Noah Moore, now 25, was a kid with a mission that’s hard to describe. Diagnosed with Type 1 at age 16, he learned to swallow fire, juggle glass balls, break dance, and break down all existing barriers to travel to places like Quilotoa, South America -- all to prove to himself and the world that diabetes is no handicap.

You may have seen some of the coverage of his repertoire, or heard about his Diabetes Camp Tour.

Noah recently shared a little about himself and what makes him tick with DiabetesMine.com.

DM) Noah, you've traveled the world performing and speaking. How would you actually describe yourself: a circus performer, an athlete, or an advocate who likes to travel?

NM) Trying to mold my life to certain labels has become increasingly difficult. There are so many facets to my passions that made-up vocabulary is the only way to meld many roles together. My favorite occupation description of late is “Motivational Circus Performer.”

DM) Where you already a performer and acrobat before, or was it really "brought on" by the diabetes?

NM) I started learning how to break dance before my diagnosis. The acrobatics involved with the art provided an excellent foundation for my martial arts and circus exploits of recent years.

DM) Why do you believe your diagnosis was "good timing"?

NM) First of all, a December 26^th dia