I have been a diabetic for about 14 years and the real life experiences that come with that has to account for something when it comes to diabetes education doesn’t it?

Yet a newly diagnosed diabetic is more apt to listen to a first year medical student or a nurse practitioner than they would me right?

The reason is obvious, they purport themselves to be medical professionals and  I do not, In fact I like many other diabetic blogs you read go the further to proclaim this in bold print. The reasoning behind this is obvious as well, someone’s health is of primal importance and giving health advice should be left to said professionals. Woe unto you if you give  medical advice with adverse critical results, it is not just a moral issue but a criminal one as well.

But there is something to be said about life experiences when you are living with a chronic disease like diabetes.

It would be an understatement to portray the lack of diabetes education as a mere lacking.

Truth be told most if not many newly diagnosed patients have little if no knowledge of diabetes beyond the passing fancy and I would venture to say that this knowledge one has is fifty percent fact and fifty percent lies, myths, misconceptions, rumors, or any of the many unknowing words you might use to characterize it.

The learning curve after a diagnosis is steep at best and the learn on the job mentality if you may while it might be wrong is the accepted norm.

If I was to share a typical diagnosis it would be as though I was reading from a prepared script.

“ You have diabetes, you need to check your blood sugar using this machine, watch your carb intake, exercise and good luck to you” make an appointment with a nutritionist for your diet adjustments and a nurse will show you how to use your life saving gadgets other than that you are on your own and If you have any questions then I will be happy to answer them on your next visit six months from now. goodbye and good luck” This was my diagnosis story and am sure it was yours as well with a few minor variations.

I was left with very little in alternatives and back then the web was at its infancy, there was no diabetes websites or education resource or the DOC to say the least.

I learned diabetes management the hard way and even with all the online resources available today diabetes education still has a long way to go just to be proficient.

It would be naïve for me to say that a solution to this problem would be one broad stroke of the brush, the problem is a bit complicated than that. But I have one tangible and easily attainable solution.

The Medical profession is overworked  this we know to be a fact, it is for this reason and many others that most newly diagnosed are left to fed for themselves as it may.

These new diabetics are inevitably going to get online to find information on diabetes so why not steer them to the DOC and real diabetes information online.

The benefits for this process will go along way in laying the ground work for a  real diabetes education

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Brief intro: Hope Warshaw, MMSc, RD, CDE, has been a dietitian and diabetes educator for more than 30 years. She’s the author of several books about diabetes care and healthy eating published by American Diabetes Association. She’s currently on the national board of directors for the American Association of Diabetes Educators. She’s a member of Diabetes Advocates (www.diabetesadvocates.org) and is passionate about building bridges between diabetes educators and the diabetes online community (DOC). Check out her interview with DOC leaders filmed at AADE 2011 (http://presentdiabetes.com/etalk/Joy-Pape-Hope-Warshaw-Interview-t4441.html#-1). Connect with Hope at www.hopewarshaw.com.

Stats show only 30 to 40% of people with diabetes in the U.S. ever meet (that’s even once) with a diabetes educator or attend a diabetes education program. What’s up with this? Oh let me count the reasons!

Even though Medicare and many large or small employer-based and individual health plans cover the services of diabetes educators (at least a few hours a year), far too few primary care providers (the people caring for the vast majority of people with diabetes, especially type 2s) make this important referral. Plus too few people with diabetes know about diabetes educators/education. It’s likely you do, so we’re hoping YOU will help spread this important message.

It’s my goal here to make sure you know who diabetes educators are, where they typically practice, how to access us and how YOU can take action to increase PWDs access to diabetes educators throughout the U.S.

Who are diabetes educators?
Diabetes educators are credentialed health care professionals who are most often nurses (including nurse practitioners, clinical specialists), dietitians, or pharmacists. A scattering of diabetes educators are social workers, psychologists, exercise physiologists, physical therapists or physicians.

Many diabetes educators make the choice to obtain the additional credential as a Certified Diabetes Educator (CDE). Another credential is BC-ADM, Board Certified in Advanced Diabetes Management.

Unfortunately there are far too few U.S.-based diabetes educators (<30,000) for the growing population of people with diabetes (excess of 18 million diagnosed, 80 million with prediabetes).  AADE is the multidisciplinary professional organization of diabetes educators (http://www.diabeteseducator.org). Learn more about AADE and about the field of diabetes education. As you’d suspect, a goodly number of diabetes educators are PWDs.

How diabetes educators can offer an assist?
You know this first hand…taking care of diabetes is a relentless 24/7/365 job which requires you to be in the driver’s seat making hundreds of decisions about your care each day. Study after study shows that people with diabetes can stay healthier with frequent and continual education and SUPPORT.

Working with diabetes educators has the potential to:
- help you learn more about diabetes in general and your diabetes specifically
- assist you to analyze your BG/CGM records and think through options to improve control
- be a shoulder to cry on when you are burnt or bummed out
- serve as your advocate with other HCPs
- be one of your cheerleaders or coaches.
Plus, they can help keep you up to date on the latest research, medications, devices, technology and more.  (I’ll admit it, I’m a bit biased!)

Where are diabetes educators?
Diabetes educators most often work in diabetes education programs most typically found within the campus of a hospital/medical center out-patient clinic. You’ll often find a few diabetes educators working together in a program – most commonly a nurse and dietitian. These programs are often referred to as diabetes self-management education (or training) programs, abbreviated DSMT or DSME.

Due to the current evolution of how and where healthcare is/will be delivered, where diabetes educators practice is changing. More educators and programs are and will continue to be found in large primary care provider offices (duh? That’s where all the people with type 2 diabetes are), in pharmacies, supermarkets, and other convenient locales.

Eventually I believe there will be more online and telephonic education and support offered by educators. Mobile health (mhealth) will offer even more opportunities. AADE has just embarked on an exciting mhealth program with AT&T to deliver DSMT via AT&T mobile devices (http://www.diabeteseducator.org/About/Media/09.12.11_Release_-_mHealth_project).

Is diabetes education a covered/reimbursed Medicare or health plan benefit?
Medicare and many other health plans require a DSME programs to be “recognized” by a Medicare accredited organization to cover/reimburse the service. To date there are two major accrediting organizations for DSME, American Diabetes Association and American Association of Diabetes Educators.

Medicare and many other health plans cover/reimburse a limited amount of diabetes education. Medicare covers up to 10 hours of DSME within the first year of your diagnosis of diabetes and then an additional two hours in consecutive years (link to Medicare.gov).

You may be eligible for coverage of another service called medical nutrition therapy (aka nutrition counseling). Medicare beneficiaries who have diabetes are eligible and many health plans also cover this benefit.

Laws passed in most states across the country require private health plans mandated by state law to cover some diabetes education (http://www.diabetes.org/living-with-diabetes/treatment-and-care/health-insurance-options/health-insurance-in-your-state).

If you believe you should have access to diabetes educators/education and it is being denied, talk to your health plan or your worksite health benefits plan administrator. Today, most people with a health plan can have access to some diabetes education.

How to find diabetes educators/programs?
To find a “recognized” DSME program approved by American Diabetes Association in your area go to: http://professional.diabetes.org/erp_zip_search.aspx?utm_source=WWW&utm_medium=GSA&utm_content=keymatch-Diabetes-Education&utm_campaign=DP). You’ll come to a screen to search for programs in your area.

To find a “recognized” AADE program in your area, go to http://www.diabeteseducator.org/ProfessionalResources/accred/Programs.html. From here go to your state.

Want to Help More PWD Access Diabetes Educators Across the U.S.?
Here’s the current problem: Medicare regulations only allow reimbursement for diabetes education to Medicare beneficiaries within a DSMT in-person program and not directly to individual credentialed diabetes educators (those with the CDEs and BC-ADM). This restricts where and how diabetes educators can practice and restricts access for PWDs.

To fix this AADE is forging ahead to change the Medicare regulations (Title XVIII of the Social Security Act or Medicare). The goal is to authorize direct reimbursement to credentialed diabetes educators for DSMT provided in-person and via telehealth (a growing method of delivering healthcare to people in small and rural communities) under Medicare out-patient services (Part B). 

The legislation is the Medicare Diabetes Self-Management Training Act of 2011, (House Resolution 2787, Senate Bill 1468). I ask that you support AADE’s effort to widen PWDs access to diabetes education/educators. Learn more about HR 2787 and SB 1468 and contact your Representative in the House and your two Senators to request their support of this legislation via AADE: http://www.diabeteseducator.org/PolicyAdvocacy/Federal_x_State_Legislation.html. Take one more action (30 seconds) to show your support for this important legislation. Sign on to the petition: http://www.thepetitionsite.com/1/support-access-to-diabetes-self-management-training/

In conclusion, if you’re reading this blog you likely value the support you get from the diabetes online community (DOC). Perhaps you follow the diabetes news and connect with PWDs on twitter, Facebook and other social networking venues. Social networking has created an exciting and dynamic venue for PWDs to give and get support. In addition, consider connecting with a diabetes educator on an ongoing basis as another vehicle for supporting your efforts to take the best possible care of your diabetes and you through the years.

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Monday – Cara, Country Girl Diabetic

Tuesday – Crystal, Randomly CapitalizeD

Wednesday – Christopher, A Consequence of Hypoglycemia

Thursday – Sarah Jane, Sarahndipity

Friday – Diabetic Parents

Also, last Thursday I had a guest post on Diabetes Mine.

Enjoy reading

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Check it out my post about Life with Diabetes.

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Parenting for us is full time job. So is diabetes. But luckily diabetes doesn’t ever outshine some of the best moments we’ve had as parents. From their first smiles to the silly things they do and say now that their older.

But perhaps the best moment in parenting is watching them grow and learn. As a parent you get the opportunity to be an active participant and an unfortunate bystander to their learning and growth.

It’s hard to watch them learn by trial and error. I remember the times when as babies they would spend hours…even days trying to learn to roll over, crawl, or walk. The frustrated look on their faces just wanted to make you pick them up and hold them close. (Which we will admit to caving in and doing on occasion). You wanted to do everything for that child….but couldn’t. They had to learn this on their own. And it was hard to be the bystander that couldn’t help. They had to do it on their own. As they get older it only gets more difficult to watch them try to tackle a new hobby, get hurt by a good friend, or struggle in school.

But even those moments can’t be tainted by the great moments of parenting. As I write this my labrador Sadie and my son are curled up at the end of my bed watching cartoons. My daughter and I went to watch our first “girls only” movie together. The preschool graduations, and the successful performance of that first school play. The morning hugs and kisses, and the bedtime giggles as we talk about our day when we tuck them in at night. The Sunday morning wrestling matches between Dad and son, and the quiet talks between daughter and Mom. These moments can’t be tainted by a hard day at work or nasty blood sugars.

Parenting is the one job that you wouldn’t want to ever give up or trade. We are so grateful for those precious moments that make our day worth it. I couldn’t imagine a more harder but more life changing job. We can’t imagine our lives without our two children. It’s impossible now that we’ve had them to imagine life without them. We thank our children all the time for the lessons they are teaching us. And we in turn hopefully are teaching them.

Scott and Traci are the owners of www.DiabeticParents.org and their blog http://blog.diabeticparents.org. Scott has had Type 1 diabetes for 28 years (since the age of 4). Scott and Traci have been married for 9 years and have two children. And two dogs who think they are children. They write from their seperate and combined experiences on how diabetes affects them as a person, a spouse, and as a family. You can read more about them on their blog and find more resources available for couples and families with diabetes on their website.

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Break

So close yet so far
It’s within my reach
If I want to take it
But it feels like a dare
One I am not sure
I’m willing to take
Challenges abound
Constant change
Progressive movement
It’s stealth with it’s alluring
temptation of relief
After so long and
so many invitations
It all seems elusive
Want it is a given
Need it feels it must be
Yet the idea, the thought
puts me back in place
To reality I go
With a fake smile
and an attitude
I trudge through another day
Wondering if a true break
will always be out of reach

———

Diabetes, whatever the type, does not allow for a break. We are constantly managing. We are always aware and alert. Always. It’s consuming and overwhelming. It’s maddening and depressing.
Just for one day, 24 hours, I would Love to not think twice. I would love to just Be. Be me. Not have to worry or think or wonder or be aware. Just be me.
As much as I think about it I still ponder…. who am I really? My Type 1 Diabetes does not define me, never has. It is simply a part of my life. I manage it. It lurks, it yells, it does whatever the hell it wants while I constantly try to keep up.
And all the time I wonder. What would it be like? Would I feel like me? What would others see that maybe I would not?
It’s a delusion of sorts. It allures, it tempts. That elusive break from it all can be deadly. We all know this. We have seen it, heard about it. It’s scary. So does Diabetes scare us into trudging along this path none of us chose?
Maybe. It’s all about perspective, I think. We have a choice of where we place our energy, our anger and even our triumphs.
So even if a “real” break (relative, of course) is to never be I can tell you all, without a doubt, that a darn good break is just being around good people. Even if via email or chat or phone. Their presence is a relief. It allows you to release your frustrations. It allows you to vent, yell, scream. It allows you to laugh, to cry. It allows you to talk and more importantly to listen.
We are all here for one another in this community, in one form or another. We all cannot be there for everyone at all times, that is impossible. But always in the background, we get it, we do understand and we are ready to listen. Always ready to pump our fists in the air at the injustice of our pancreas. Broken Pancreases Unite.

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Words of Wisdom

When I was a child, I didn’t know any other Type 1 diabetics. Then, it was still called Juvenile diabetes. Insulin pumps were so rare, I didn’t know they existed until I was in high school. Blood sugar meters were HUGE. And testing took over a minute. If I remember correctly, it took over 2 minutes to complete the process with my first meter. I grew up when we didn’t go to the doctor very often. Our training was minimal. And we just did the basics of care. We counted exchanges instead of carbs and had no clue how to use a sliding scale for insulin and had never heard of insulin to carb ratio.
Things have changed so much since I was diagnosed in 1986. Treatment is better. Stronger. More efficient. And now, we have the wonders of the internet, which has led us to each other. With that comes some great responsibility for those of you raising children with diabetes. So, coming from a kid with diabetes who grew up, I have some tips for you.

1.)    Sometimes, it’s okay to forget to test before a meal. Not always. But sometimes.
2.)    Sometimes there’s a birthday party at school. Blood sugar is 200. Give the insulin and eat the cake anyway. The memories are more important than that one number.
3.)    Sometimes the joys of being a kid make remembering that you have diabetes difficult. Don’t be upset if your child forgets to eat or test. Deal with it and gently remind them for next time.
4.)    Every number is just that. A number. Sometimes they will be high. Sometimes they will be low. But a LOT of diabetics grew up with less than stellar blood sugars and we are fine. (Not that it means not to take care of your child. But don’t be quite so OCD.)
5.)    Don’t be afraid to let another adult have some control. Your child can’t always be by your side. Just be sure it’s a responsible adult.
6.)    Most of all, remember that you child is a child first. Not a diabetic. Be sure to let them get on with the experience of being a kid. It’ll be worth it to them (and you) in the long run.

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These blog posts were amazing.  They are going to make my blog look boring now that you have to ready about my boring ole’ life again.  I received a lot of great feedback from readers that I have not had before.  Also, some of my readers that were not reading these other blogs were thrilled to be exposed to these other great blogs.

I encourage all the posters to take a look at all the comments on their posts because there are some great ones.

I will be doing another guest post week shortly, I am thinking about making it a monthly thing, as long as I have a guest post to post, I will post it.

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My Own Little Bit Of Luck

High blood sugar levels scare me. And perhaps I find myself more terrified of high numbers that any other diabetic I’ve ever met. There’s a reason behind this fear, and it’s something I’ve gone into detail about on my blog before. You see, when I was in University, I was the poster child for diabetic rebellion. I wanted nothing to do with my diabetes, I wanted to be normal like my friends, I wanted to go out every night and get plastered. I didn’t ever check my numbers unless I was feeling seriously unwell, and when I did see those numbers they were up at anywhere between 25.ommol/L and 30.0mmol/L (450-500mg/dL). Those are scary numbers to see, and I didn’t want to believe them so I pretended like I hadn’t even seen them. I would eat a chocolate bar and not bolus for it, I would snack and not bother blousing, I would bolus for lunch. It was just a breakfast and dinner thing for me, and they were fixed doses – 10u of novorapid no matter what I ate. I would take my lantus whenever I felt like it, and there were times where I wouldn’t take it until 3 or 4am after a night out. I’m surprised I didn’t end up in hospital with DKA on more than one occasion.

I guess I was lucky. But it was the words of my consultant that scared me into action: “you’ll be dead by the time you’re thirty if you don’t sort yourself out”. Not exactly the words you want to hear at 11am in the morning before heading off to an afternoon lecture really. From then on I worked hard to get my levels to what they should be. I went to testing eight or more times a day from nothing, I tried carb counting. I became everything I should have been during those years of rebellion.

But then I was diagnosed with a form of peripheral neuropathy. And I found out I had background retinopathy to go along with it. Did I still think I was lucky? No, not really. I sank into a kind of depression when I found out about the neuropathy, it’s not fun being twenty one and having complications. My doctor told me it was transient, meaning it would go if I kept my levels consistent and so, I began to research. I knew full well why I had this, and it’s because I was the world’s worst diabetic, I didn’t look after myself, I did what I wanted. I was stupid. I found out thanks to the wonderful world of the interweb that my symptoms would calm down and maybe even disappear at any time between 6 months and two years. But I had to keep my levels consistently good.

So with work I lowered my HbA1C down from an unknown number to 6.9%. It’s stayed around there for a while now, mainly because of the serious numbers of hypos I’m having on a daily basis. I am currently fighting to get my hands on an insulin pump and am soon heading off to one of the top insulin pump clinics in the United Kingdom. And now, 7 months since that initial diagnosis of neuropathy the symptoms are almost gone. I get the occasional twinge now and then. But the reason I’m so frightened of seeing those high numbers? It brings the pain back to levels I never even thought I could deal with. Seeing numbers like that frighten me silly, make me think I’m slipping back into my old rebellious ways.

Like I say, after 7 months of hard work the symptoms are almost gone. And ok so it’s been helped a little bit by medication, but I fully believe that if I manage to get an HbA1C of less than 7% because of good control rather than hypos, then I can stop the medications. It’s been a tough road, but I am determined not to let this get in the way of my life. It’s taken a backseat now, and hopefully soon I can boot it out of the car!

Am I lucky? I guess in a way I am. My problems thank to rebellion have been few compared to some of the blogs I read out there by people with neuropathy. Many sufferers have a terrible time with it, and they’re not all lucky enough to have a form of it that will go away, that will heal itself with good control. I would still give anything to turn back time and stop myself from doing what I did, but I can’t do that. And so, in my own little way I am lucky.

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Let’s get right into it.

Myths and Legends

Urban legends – we’ve all heard them. Chant ‘Bloody Mary’ three times into a mirror, and she’ll appear behind you. The girl whose boyfriend goes out to get fuel for the car, and is found dead on the roof the next day. The list goes on and on. They’re stories to scare children, disturb adults, and share via those annoying chain emails that everybody hates. But most people know that they’re not true.

Diabetes is no different, when you get down to it. As a disease, it’s surrounded by so many myths and legends that are completely ridiculous. These are the things though that sadly, Joe Public on the street believes to be true. There is so much ignorance out there that it can be frustrating/saddening/infuriating/blood boiling. Choose as you feel appropriate. For me personally, I often find myself split between any of the above. It can depend on what you come across.

I’m very fortunate really, in that in my social circles, I don’t tend to come across that much ignorance. That’s not to say that I haven’t come across any, because I have. I’ve been asked whether I have ‘the one where you’ve got too much sugar, or the one where you haven’t got enough’, and I know my mother had to field off questions from a cousin about how long I was going to have diabetes for, and when it was going away. I was told to ‘call back when (I) came off insulin’ in regards to donating blood. But on the whole, I’ve been extremely lucky that when someone I’m with doesn’t understand a thing, they’ll usually listen to me when I try to explain. Which is great. But I know that unfortunately this isn’t the norm.

You can catch diabetes. You get it from eating too much sugar. Children grow out of it. You’ll go blind/have your legs cut off/die young. You have to eat special ‘diabetic’ foods. You can’t ever eat chocolate. Note – none of these are true. Yet they are all things that you hear people saying, or come across online. Then on the reverse, it’s not exactly uncommon to hear or read things like ‘diabetes isn’t serious’, or that insulin cures diabetes. And let’s not get started on the ‘snake oil salesmen’ that are ten a penny. Though should you feel that some magic berries, grass juice or similar might be fun for a laugh, you’re probably sorted.

The media makes a mistake in an article. People read and believe the media. That becomes generally accepted information – ‘it has to be true because I read it in the Daily News!’. (http://www.youtube.com/watch?v=5eBT6OSr1TI – don’t feel you have to link it, but it rather proves the point, I think! ) Why would they lie? But whilst they’re not giving you the right facts, I’m not convinced that it’s outright lying.

What can be done about it all though? That’s the million dollar question. Shoddy journalism by the mass media doesn’t help. Sometimes I wonder whether it’s just a general lack of education. If the writers of many articles were to spend two minutes fact checking with someone actually knowledgeable about diabetes, perhaps the continuing cycle of misinformation could be avoided. There are plenty or reputable sites and sources out there for fact checking. Major diabetes charities have good basic summaries of both types of diabetes on their websites, for a starting point.

I can empathise somewhat with large scale education campaigns only tailoring to one aspect of diabetes. Educate about Type 2, then there’s the risk you’re spreading misinformation about Type 1, and vice versa. Diabetes is a broad and complex disease, with so many different types, variations, treatments and so forth. It’s a lot for someone who might know nothing about it to wrap their head around. You don’t want to overload a person to the point where they’re no longer interested. But there’s got to be a middle ground, surely? It’s just where to find it.

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