LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Sunday, August 20, 2006

A sad and awkward moment....

Diabetes is such an intense daily struggle that I sometimes forget I'm relatively new to the party. It feels like I've been diabetic foreeeeeever. But one of my loved ones, against all odds, remembers how things used to be not all that many years ago.

I had just taken some cherry slices after a low alarm when Rio told me, "I miss my old Daddy."


I tilted his head gently upwards, my index finger under his tiny chin. "What do you mean, baby?" I asked him.

He looked up at me sadly, with his mother's eyes, and said "I miss my old Daddy. The one who didn't have diabetes."

Tuesday, August 01, 2006

We interrupt our regularly scheduled program...

So the annual staff picnic was today. I loaded up my pump with an extra 100 units of insulin, put my Glucagon Emergency Kit in my back pocket, and warned my co-workers not to stand between me and the chocolate cake.

My eating habits and the technology that keeps me alive are sources of endless fascination to my co-workers and bosses. That's OK. I was never shy about my diabetes and I always recognized that all of us with the disease are ambassadors to the out-side world. Now that I work in the field, that is even more true than before.

Speaking of my work, I've been getting a barrage of emails about it, so I'd better post some details. There's been confusion about what I do, and I need to set the record straight. I don't want to mislead anyone, or for anyone to think I was trying to mislead them.

I now work for a non-profit community health center, which serves a whopping 500 square miles of the rural north of our state. Our medical staff consists of one Doctor, a resident, a dentist, a nurse practioner, a physician’s assistant, two RNs, a councilor, two dental hygienists, about a dozen administrative and support people, and (gulp!) me!

My business cards, once they eventually get printed, will actually read: Diabetes Coordinator. “Coordinator” is a word I really must learn to spell. For some reason I can’t quite master it, and always have to rely on my spell check. As our DC, I do diabetes education and a whole lot more.

And this is really, really, really, really important people: even though I've been working as a Diabetes Educator for the last quarter of a year, that does not make me a CDE. In fact, to be a CDE you must first have been a paid DE for some time. But more on that in a minute.

The main building at the center is a virtual a mini-hospital. It is really something to see. We’ve got a full medical and dental clinic. A one room ER. Four exam rooms. A pharmacy. Offices. File rooms. An on site medical lab. And just beyond my building they are putting the finishing touches on the new ambulance center. It is a very cool place to work.

Yes, I did say my building. I work in the Diabetes Education Annex (just joking). I'm actually out in a small modular at the end of the parking lot, the original purpose for which has been lost on even the oldest staff members. The main building is too crowded, so as the newest arrival I’ve been banished. Not that I’m complaining. I’ve got the third largest office, after the executive and medical directors. Out the window on one side of my office I can rest my eyes on rolling hills covered with Pinion trees stretching to the horizon. Out the window on the other side of my office is a barn that belongs to a ranch "next door." There is a corral that is home to three cows and one horse. Oddly, (or maybe not, what do I know about such critters?) they seem to co-exist peacefully. The cows seem more energetic than the horse, however, which is just the opposite of what I would have expected.

So I got my own office. In my own building. And I got not one, but two windows with real views. Eat your hearts out cubicle slaves! And what a change for me. From the dark room to a very light room.

So how did I get this gig, and what do I really do? Break out the coffee, this is going to take a while.

More about me. Well, actually I do have a medical background. I just never talked about it before as it is a long and complicated story (as all of mine tend to be...) Any way, in a nut shell: I'm state certified as an CNA (the next step below an LPN) and prior to starting my blog I had two full time jobs; just like I do now. I still ran the lab, but I also commuted to the capital and worked at the regional medical center. I was a Unit Coordinator for the Intensive Care Unit. It's not as impressive of a job as it sounds like. In fact, it was low paying, lowly respected, and highly stressful. I hated it. But I did learn a great deal. The stress there wreaked havoc on my BGs. I had frequent hypos, and it no doubt was a contributing factor to developing the hypo unawareness that lead me to the Guardian and this blog.

I slipped into my current gig by pure luck. There was a federal grant to train 11 diabetics in our state to help other diabetics with self management skills. I was in the right place at the right time. As it turns out I have a good skill set for the job and my medical director likes me. I've been promoted once and increased from 20 hours per week to 30, and then to full time all with in a three month period. Our clinic had no one working in diabetes for over a year before I came. Don’t forget that the demographic profile of the population here puts us squarely in Diabetes Central. It was up to me to create a diabetes program from scratch. As it turns out, the combination of my business and medical backgrounds, along with my diabetes experience, made me the perfect man for the job.

When I first started I was overwhelmed and got very depressed. The evils of oppressive poverty, mental illness, and substance abuse are stacked on top of diabetes here. It seemed hopeless. I didn’t feel I was making any difference at all. But then, thanks to Zoloft, positive feedback from the staff and patients, and simply time: time to get used it all of this, time to figure out what the hell I was doing, time to learn my job; it all turned around.

I tell you the truth now, this is the best thing that has ever happened to me. I love my job. I love having a sense of purpose. A sense of Mission. I love being able too help other people. I love being able to take my own pain and anguish from diabetes and use it as the fire necessary to forge something better. I'm very strongly driven. And now I'm making a huge difference. And not to sound like some sort of religious freak, but now it all makes sense. I finally understand the reason I got the D. I feel for the first time in my life like I have found where I belong. Too bad it doesn’t pay enough to cover my bills.

About half my work week is dedicated to diabetes work. That includes one-on-one diabetes education, and moderating support groups for both diabetics and family members of diabetics.

For what it is worth, and not to insult anyone, I prefer “Diabetic” to “Person with Diabetes.” Contrary to the length of my writing, I don’t like to use three words where one will do just fine. Some will argue that “diabetic” defines us. And your point is? Of course it defines us. It is 24-7/365. It is a relentless disease that shows no quarter when you don’t pay proper attention to it. Many of my patients suffer horrible complications from years of neglect and ignorance. When I worked in ICU most of our patients who died there where diabetics who paid the ultimate price for carelessness. This is grim businesses if not taken seriously. Not to bring anyone down, but I always tell my patients that living with diabetes is like living with a tiger. If you feed it, groom it, and never turn your back on it, you can co-exist with a tiger with no problem. But if you neglect it and turn your back on it, it will pounce on you and tear you to shreds.

Oops....wandered off track again. I also work a lot with drug reps. I’ve now got a lifetime supply of insulin in my sample fridge. Well, it would last me a lifetime. We’ll use it up in a month and I’ll need to mooch more. But I do have a lifetime supply of pens. Triple Kudos to Novo Nordisk for their cleaver high-lighter pens that are built into actual FlexPen bodies. Very cool.

I also liaison with various federal, state, and local agencies. I get information, grants, supplies and training materials from them. I arrange and perform community diabetes screenings and we’re putting the finishing touches on a major out-reach campaign to Dx and treat those in our community who are right now suffering with diabetes and don’t yet know it. I also enter our diabetes stats into our computer system that is linked to the Feds.

Down the road I’m working on prevention programs too. I’m also putting my pen to work writing various diabetes education hand-outs for the newly diagnosed and their families. I have a partner in crime too, the clinic Out Reach Coordinator has been tasked to the diabetes program for about a third of her hours. She’s great. She knows everyone in the community; and knows how to get through to them.

The other half of my work load is on the clinical side working as a Medical Assistant. I started out running A1C and microalbumin tests in our medical lab, as the nurses were too busy. Then I expanded into blood draws for send-out tests. Turns out I have a unique talent for phlebotomy, as blood draw work is called. The nurses say I’m a natural, but I think it is simply the experience of having had stuck myself with so many needles over the last few years. Shots, lancets, infusion sets, and sensor guide needles. My hands have learned how much pressure it takes the smoothly break the skin with various sizes of needles.

I also give injections of all sorts from B-12 to Depo to immunizations for babies. The nurses hate to make a baby cry so they call me. I hate to make babies cry too, but I’ve found that if I give them my stethoscope to play with they get distracted and don’t cry much. I take patient vital signs, assist with various procedures, play with children whose parents need care, and even once mopped up the floor when the plumbing got screwed up and all the toilets overflowed. Yep, I’m a medical jack of all trades. Every day is different, interesting, new and challenging.

Now, about CDE folks...... Nothing makes me more angry. Here are the facts. To be a CDE you must pass a rigorous exam. Fair enough. Let me take the exam. What? I don’t qualify to take the exam? Oh. OK. Well, who does qualify? Glad you asked:

First ya gotta be an Registered Nurse or a Registered Dietitian. Or have a master’s in social work (but my spies tell me that door is closing). Of course if you are a doc, pharmacist, or a physician’s assistant you can also get your foot in the door. But wait! That’s not all you need! You must have been working as a paid DE for at least two years. But wait! The clock starts after you become an RN or such. That means if I worked here at my clinic in diabetes education for 20 years and then became an RN, I still wouldn’t be qualified to sit for the exam. (I actually know someone that this happened to.) But wait! That’s not all! Your pay has to be comparable to other DEs in the region. Do you think my little clinic can afford to pay me what a DE in very expensive Santa Fe makes? Not bloody likely. So I might not qualify even if I jumped through all of those other hoops. But wait! You also need 1,000 hours of teaching diabetes self management... And on it goes.

It is a society of closed doors. The mythic label of CDE is nothing more than a wicked tool for limiting their numbers and keeping their salaries high. There are a couple of CDEs who blow my mind. They are wonderful, smart, caring, awesome people. But I’ve also met quite a few who didn’t impress me much.

I’ll go way out on a limb here and say that I think I'm a better DE than even the best educated non-diabetic RN. Why? I live with this 24-7/365. I speak diabetes. I live with the fingers sticks, the hypo fear, and the unknown long term effects. I have to think about everything I put in my mouth. I see the effects on my family; and on my checkbook. I understand the struggles of my patients. And on the other side of the coin I have credibility with them. They respond to me 'cause they know I'm there too.

Don't get me wrong. Being a “good” diabetic is not enough to make you a good DE. To be a good DE you need training. You need to understand some medical stuff, and some diet and nutrition stuff, and you really need to under stand the D and D meds deeply. But you don’t need to be a RN. I think it is a SIN that the CDE folks have set themselves up as a closed door society. If they really gave a shit about diabetics they'd have an open architecture. What about several levels of certification? Like in the old days when you started as an apprentice, then you became a journeyman, then a mastercraftsman?

Make no mistake, I know I still have a lot to learn and I spend an appalling amount of time expanding my diabetes knowledge. Any day that I don’t learn something new is a wasted day. I read, read, read, read, read. I’m communicate with peers across the state and across the country. I plow through stuff written for doctors with a medical dictionary on one knee and an Anatomy and Physiology book on the other. I go to every conference and workshop that I can get to. I’ve even arranged to shadow one of our state’s top Endos several days per month to increase my knowledge.

Our senior RN wanted me to go back to school and become a Physician’s Assistant. But the road is too long and expensive for me, I’m the sole income earner for my family and diabetes is an expensive mistress. I will never have the opportunity for further formal “higher” education. But that can’t stop me from learning. I’m curious, driven, interested, and I have an insatiable appetite for knowledge. But I think that it sucks that no matter how much I learn, I’ll never even be given the chance to sit for the CDE exam.

That said, even if I had a CDE, I wouldn't make even one penny more in my job. My clinic can't afford CDE wages. I make less than one third of what a typical CDE makes (and CDEs don't mop floors when toilets overflow). It also would not raise the esteem in which my patients hold me. They respect me because I'm one of them and I've been able to help them. We had a CDE here a while back on a grant and they all hated her. She was certified, but she didn't understand diabetes and what it means to have it.

But they will never change and the hell with them anyway. Here is what I propose, and I don't have the time and energy to make it happen right now; but give me a few years. I think we D-folk should band together to create two new certifications to "compete" with the CDE. The DDE and the FMDE. These would stand for Diabetic Diabetes Educator and Family Member Diabetes Educator. I envision a comprehensive training, testing, and certification system open to all who have, or are effected by, diabetes. The goal would be to provide skilled, driven, and compassionate community health workers with some sort of recognized certification for clinics and docs who can't afford CDEs.

This would allow the diabetic community to do what it most yearns to do: give something back. To make it easier for the next group of diabetics than it was for us.

I'm not saying CDE's don't have a place. But it is our "party." We should be allowed to play too. Anyway, maybe I'll add this project to my list of things I want to do when I retire, like push to ban the advertising of credit cards and finding the lost Confederate cannons from the battle of Glorietta. Unless someone out there knows a way to get the ADA or the JDRF or some other D-Group with clout to lend us their good name and help us launch such a program. Then I won’t wait for retirement. I’ll sleep one less hour per night and help make it happen NOW.

Next, I'm going to vent a bit the AADE fools, errrrr, folks. That stands for the American Association of Diabetes Educators. Now you don’t have to be a CDE to join. In fact, they’d be happy to take $150 bucks from me so I can join their ranks. Then what? I guess I could read their magazine and wear a AADE hat. But they won’t let me do the one thing I want to do most. I want to take some of the on-line training courses they offer. Very specific, narrow, targeted subjects. Like designing insulin delivery protocols, which is something I actually do. But wait! Another closed door. Only RNs, RDs, and Pharmacists are allowed to take the classes. Boy, am I pissed about this. I don’t care about the continuing ed credits. I don’t even care if I get a certificate of completion. Just let me take the fucking class so I can learn something. It’s not like it might actually benefit a patient or anything...

And you know what makes this doubly criminal? The AADE didn’t even pay to develop these classes. They are all paid for by grants from the pharmaceutical companies. And where does big pharm get the money for that? From the scripts my docs write for my patients who I’m just trying to help by making myself a little bit smarter. Not that I’m bitter about this or anything....

But if you’ll excuse me, I gotta go take a correction bolus now. I guess there where more carbs in that chocolate cake than met the eyes... must have been that moist, gooey icing. Mmmmmmm.............