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!).

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.............

12 Comments:

Blogger Bernard said...

Wil

Thanks for a great post and sharing what goes on in your job. And yes, I am jealous of your two-window cubicle but it sounds like you deserve it and more.

I agree with your opinions about CDEs. I've been fortunate in that many of the CDEs I've dealt with have had diabetes. In fact one of them started going on cruises as a diabetes educator - now that's a sweet deal.

Let me know if I can help in some small way. I have an older edition Pumping Insulin book I was going to send to the library - would it be of any interest to you?

Bernard

5:36 AM  
Blogger Scott K. Johnson said...

Hey Wil,

Great post. Again, I really think you are a great fit for the job and that you will benefit many, many people through your travels (along with us through your blogging).

It also sounds like there are a fair number of challenging limitations that you have to deal with.

But, tell ya what - if anyone can challenge those limits, or figure ways to proceed around them, that would be you!

Keep pushing on my friend!

8:40 AM  
Blogger Kerri. said...

What a great job, Wil. I can empathize with "I love my job" feeling. I, too, love my job. There's something about actively engaging yourself in the betterment of the lives of diabetics that is just so tremendous. I respect what you're involved in, Wil. It's a pleasure to know that you're contributing in such a vital way.

You're something else, Mr. Printcrafter.

(Oh, and I am also a diabetic. Defining or not, it's just how I roll.)

9:21 AM  
Blogger Kelsey said...

Will,

Great post! I also prefer diabetic to Person with Diabetes. I think the severity of the term is what I like about it... I sort of want people to know, "I'm diabetic, and it's hard and I do well with it!"

Anyway, I appreciate your comments about CDE's. Diabetics are the best educators out there! My first diabetes doctor had type 1 and his experiences was invaluable. Also, I've heard some comments by very well known CDEs on websites and chatrooms that were downright misleading. I've called one out about it and got a friendly response, so that's good.

I'm all for the creation of new designations and the idea of diabetics educating each other! Lead the way Will, we'll follow :)

1:38 PM  
Blogger Heidi said...

When it comes to diabetes - and most other diseases too - information coming from fellow-patients should never, ever, be underestimated, regardless their job title!

We have another medical system in Denmark, so we don't really have CDEs or DEs as separate positions. However, we do have - at least in larger hospitals, like the one that I attend - nurses, and a few doctors too, that works full time with diabetes. Most of the doctors have other assignments and interests, though, which from my point of view is far from ideal. As an example, my current doctor, who is an endocrinologist at a high post in the diabetes department of the hospital, is also a "scientist" (quotation marks because he is actually not doing hands-on research in the lab). His main scientific interests are stem cells, bone and calcium metabolism. Thus, he is more likely to be updated in the newest research in osteogenesis than diabetes treatment. At my first appointment with him after starting the pump try-out, he was actually more interested in the look of the pump and infusion site - because "so much have changed since the first pumps 20 years ago" - than the actual effect of it on my BGs.

Fortunately, the hospital has some very qualified diabetes nurses working in the "Diabetes School". The nurses - and one of them in particular - have done more to assist me in regulation of my BGs, and the mental issues of diabetes too, than my doctor ever has. My doctor had no real experience with Lantus when I wanted to try that, but the nurse had, and she was also the one, along with my boyfriend, who finally convinced me to at least try the pump. She is the one that have assisted me in most of the insulin changes (type and dose) that I have done the last few years, listening to my frustration, when thing didn't work out as we had anticipated. She doesn't have diabetes herself, but she has great experience from all the patients that she has seen, and most of all she has the attitude that the only one to know if treatment is working satisfactorily is the patient who feels it on his/her own body. She tries the new insulin pens and pumps on herself (with saline) as well as the CGM-systems available, thus knowing what they are like to operate and wear in real life.

I have never met any doctor, nurse, dietician or other medical staff that were diabetics themselves. The nurses are usually good listeners however, and more willing to obtain more information and learning from the patients than doctors are. I have many times been frustrated with the doctors that I have met with because they didn't seem to understand the difficulties that D and the treatment of it entail - simply because they have never been a patient in a hospital, least of all a diabetic patient.

So, in conclusion Will, I think that your idea about DDEs and FMDEs is great! That is something that every diabetic, as well as their relatives, would benefit from, so go for it :-) If anyone can make this happen, I believe it would be you!

2:13 AM  
Anonymous JasonJayhawk said...

The DDE and FMDE idea is great, as I've thought that some sort of certification should be around like that. Maybe for a $1.00 donation per year to a slush fund that is used to award one lucky "winner" who has made a difference in diabetes care (and whom is also a member of the "club") could have the winnings (minus the cost of administration, of course).

1:18 PM  
Anonymous Caro said...

I'm with you on the whole CDE thing. I know an awful lot of people with diabetes (I use diabetic too, but tend to use people in the plural!) who would make far better CDEs, or Diabetes Specialist Nurse (DSNs) as we call them in the UK, than some of the people who already do the job.

The recent hospital experiences I shared show just how ignorant so many general nurses are about diabetes. Yet they could go on to train to be DSNs and it just hardly seems fair. Sure they can learn a lot. But never ever everything. It is the 24/7-365 thing, the understanding of what it really means to live with it.

I recently told my consultant that diabetes was my job. He loked at me oddly. I guess he was thinking "actually diabetes is my job". But I explained that it may be his 9-5, it may occupy his thoughts sometimes outside of work too, but it is not his full time job in anything like the way it is mine. He can forget about it whenever he chooses. We can't. He can certainly forget all about it while he sleeps, while we all face that possibility of being woken by a high or low, face fear about what our blood sugars will do while we aren't concious to monitor them.

Oh, and as for the phlebotomy thing - if you have talent for it, you have talent for it. It isn't about putting the needle through the skin, it's about getting it in the damn vein. When I was at dental school you were a can-cannulator (could sucessfully place a venflon) or you weren't. Those are the only two types of people!

2:19 PM  
Blogger George said...

Thanks Wil for this great post. I am totally with you about the DDE thing. As you read in my post recently, I am in a place where I want to help and add purpose to my "D."
Thanks so much for breaking it down for all of us. Now I want to find a chocolate cake! MMMMM

9:57 PM  
Anonymous Tiffany said...

Totally with you on the CDE thing, Wil.

I have a college education that is similar to yours (more book-learning than an LPN, less technical education), which I originally took as a way to experience nursing before going for a Bachelor's of Science in Nursing(BScN). I figure that knowledge, combined with the fact that I am a Diabetic, makes us more qualified than any of those non-diabetic CDE's out there who learned a bunch of stuff in a classroom and took a test.

In Canada, one has to have a BSc in Nursing, Nutrition, or Pharmacology or be a credited physician in order to even have a chance at the CDE title. But prior to even writing the test, one must have worked for four years in a public healthcare setting with said creditation.

Yes, I understand why the industry has made becoming a CDE such a rigorous process. But really, who knows more about it then we do?

1:50 PM  
Blogger Lori Rode said...

I'm 100% behind you on the ridiculousness of the CDE. I too wish there were some alternative credentialling path to become a diabetic educator. Perhaps someday.

12:40 PM  
Blogger karondaray said...

I am/was interested in becoming a C.D.E. but I don't want to be a nurse ...sounds silly but I just don't want to deal with all the "other" stuff, just Diabetes. Althou I do not have Diabetes myself I do have 2 children on pumps that are diabetic. I can/could offer a different point than those who have diabetes, as a parent. No I don't know what a low feels like but I know what dealing with a child that is low is like. If there was class or program that would let me be a Diabetes Educator I would take it in a heart beat.

6:26 PM  
Blogger the M to the C to the A said...

I think the DDE and FMDE idea is great, I get so frustrated answering some of the most inane and offensive questions some times. I also want to thank you for taking a stab at the pharmacy industry that is making blood money off of people like us "living with Diabetes."
"Never a cure, always a treatment," seems to be their motto.

After 6 years of being a Diabetic I am still in a daily struggle to maintain stable BG's. And I just found out about CGM devices through a flyer from CozMore. Then I found your blog here.
The unfortunate thing is all these CGM devices are like cars, they have planned obsolescence, meaning they are designed to make you have to buy a new one. The batteries for these devices last less than a year and are non-replaceable. The one under FDA review has a watch battery you can replace; of course this one is the affordable option for some one like me. Yet I have no idea how long I'll have to wait before I can try and get my insurance to cover it.
I am facing my 24th birthday very soon where I will be losing my parent's health insurance; I have the choice of continuing to be a student and not being able to get the supplies for my insulin pump which means switching back to self administered and calculated boluses (shudder), or I and go out get a full time gig, drop out of college and sell my dreams for health benefits.
Once in 2002 I lost my job and health benefits and couldn't afford my medication, this was before I got my pump. I remember how little I tested my BG's or even gave myself insulin because I was stretching what supplies I had. I've had a CozMore pump since August 2004 and I don't want to imagine my life with out it because that scares me... I'm already afraid of what’s going to happen to me because of how out of control my BG's were before the pump and some times are now because I can't tell physically which way my sugars are going. It also doesn’t help being a student who can barely afford to eat twice a day.
I have to say that with all the advancement in medical science I'm surprised that living with this disease hasn't become more affordable for more people. A two week supply of insulin for me costs about $250 with out health insurance. And personally I have met more nurses and doctors that know less than me about Diabetes and they care even less about how it affects every aspect of a Diabetic's life. I went through 7 Endo's offices before I met one who was able to speak with me on a level of compassion and understanding and he actually knew about treatments other than needles 8 times a day.
Every TV commercial I see advertising some new product for Diabetics is for type 2 but not type 1. And most of it is either food or testing supplies not ground breaking technology that every diabetic should have. It is my understanding, that type 1's are the ones who are at the highest risk for all the nasty side effects of uncontrolled or poorly controlled BG's. Yet it seems that all the technology and products for us are overlooked by marketing campaigns.
One last thing and then I’ll end this essay of a comment; where can I go to have my stem cells harvested to donate to research towards a real cure for Diabetes?

10:04 PM  

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