I’m sure I can make improvements in my planning habits!

I just want to say thank you for Accu-Chek for giving me the opportunity to write this guest post.

*Disclosure – follow that link to read all about it.  For this post specifically, I was not paid by Accu-Chek in any way to write this post.

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Definitely Not Your Normal First Year of College

My first semester at Grand Valley State University was much like that of any other college freshman.  I had no shortage of friends with incredible people in my dorm and joining Sigma Kappa Sorority.  However, by the end of Christmas break, I had lost a total of 30 pounds.  My mother thought I was just walking more around campus and eating different food now that I was away from home.  My friends, however, thought I was bulimic (they didn’t tell me until months later).  I had all the usual symptoms we all now know about, but I just thought, hey I’m busy so of course I’m tired, thirsty, ect., you know, the usual.

February 4th, 2011, I had a routine checkup with the clinic on campus (that I almost cancelled because who really wants to walk 25 minutes in the frozen tundra that is West Michigan). Later that night was President’s Ball, so I just wanted to do my hair, put on my new dress, and party with thousands of other students from my university.  The Physician’s Assistant who was seeing me, after some normal tests, told me my urinalysis was positive for glucose.  Alone in the Campus Health clinic at the age of 19, I was told I might have diabetes.  After a blood test and many tearful phone calls, I learned later that day my A1C was 13.7 and I was in fact diabetic.  The PA gave me prescriptions for Metformin and a glucometer and sent me on my way.

I still went to President’s Ball that night.  My frantic mother drove the 3 hours the next morning to come get me, and I convinced her that I did not need to go to the hospital, despite her persistence.  I met with an endocrinologist three days later, on a Monday that I would have normally had Anatomy, Psychology, and Biochemistry lectures.  She told me that I have Type 1 Diabetes and I was immediately put on insulin, and to throw away the useless pills from the PA.  After more tears, especially during the first few shots and finger pokes, I was back at school as if nothing had ever happened.

When I was first diagnosed I thought diabetes was going to rule my life, and it did for a while.  I didn’t go out, drink like many of my friends, or even exercise because it was just too hard.  I put on a courageous mask, told my friends no, I am not bulimic, and tried to pretend I didn’t hate my life. Every finger poke was a challenge, my best friend would threaten to check my blood sugar for me when I reached the 5 minute mark and still hadn’t released the lancet. And the insulin pens and needles, I was definitely not their biggest fan. Eventually I came to a wonderful realization, I had an incredible group of people supporting me and slowly, I got through it.

This has been the craziest year of my life.  I am now living in the sorority house, ready to start the nursing program in August, and I actually go out on the weekends.  In my other life, my A1C is 7.0, I’ve been on the Medtronic insulin pump since July (which is incredible and everyone should get one!), and I have yet to be hospitalized.  It is a difficult life to adapt to; the ‘so, why do you have a beeper?’ questions or watching people almost pass out when you start to check your blood sugar (really its only a drop, come on).  Now, hiding my pump while wearing a dress on Saturday night, carb counting, and explaining my life to those who just don’t get it, are second nature.

I am a Sophomore Nursing Major at GVSU, a member of Sigma Kappa Sorority, Vice President of Fundraising for Rock Against Rape, Vice President of G.A.M.M.A. (Greeks Advocating the Mature Management of Alcohol), and a Type 1 Diabetic.  I know my life will never be “normal,” I will always have that last aspect that labels me, but now after one year, I’m okay with that.

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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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