World Diabetes Day 2017

From NaturalBlaze.com

In case you didn’t know it, November 14th is designated by the United Nations as World Diabetes Awareness Day.  In the United States the American Diabetes Association designates November as Diabetes Awareness as well. Their Mission is to “prevent and cure diabetes and to improve the lives of all people affected by diabetes.”  All day I have been thinking about this.  The more I thought about it, the angrier I got.  I would like to believe in my heart of hearts that awareness campaigns are as successful as the promoters would like us to believe.

The American Diabetes Association, The Juvenile Diabetes Research Fund and the International Diabetes Federation are huge organizations who are doing great things in respect to furthering the much needed research to understand this most complex of disorders with an ultimate goal of learning how to prevent the onset AND how to reverse the malfunctioning organ that has all of us in chains to its whims. This condition has reached pandemic proportions. Pandemic means widespread over a country or the world. And here we sit in the pews, in our choir robes while the evangelists from the churches of ADA/JDRF and IDF stand at the pulpit and preach for the need to make the world aware of this terrible demon that is afflicting 1.5 million newly diagnosed Americans a year, as of 2015 according to the ADA. In 2017 the Center for Disease Control published that there are over 100 million Americans with some type of diabetes.  We are a tremendous choir so much so that even the Mormon Tabernacle Choir would shudder at our numbers. The problem is these very same evangelists are not out there in tent revival style homecomings preaching the word of awareness to the unbaptized.  The preaching does not commence until that poor, wretched soul is diagnosed. And then the first sermon they receive is that of the diligent, tireless researchers who are on the cusp of a cure right now. In ten years time this demon will be exorcised never to darken another metabolism.  I have had diabetes sine 1979.  When 1989 rolled around I was chomping at the bit to get in line to be blessed by the healers that had harnessed the ability to make me whole once again!

For the last 2 weeks, as I watch television or listen to the radio I am confounded by the number of advertisements for breast cancer awareness* campaigns. And then I sit there and get angry.  I understand that advertising takes money. Money that could be used to further research, but the big three proselytizers have budgets that have line items for research AND marketing.  If you want to increase the awareness of the need for people to recognize the symptoms of pre-diabetes and to give credence to the devastating effects of “having a little sugar” there needs to be a more public, in your face, exposure like breast cancer awareness. Especially in the month of NOVEMBER, for God’s sake!  There is a cartoon circulating on social media with Santa Claus and Tom Turkey having a conversation and Ole’ Tom is letting St. Nick have it because no sooner than Halloween turned in to All Saint’s Day the stores had already deployed their Christmas decorations and wares.

Cartoon: December, Fat Boy! This month is for MY Holiday! Now hop on that sleigh and WAIT your TURN!

Look at the image in the header of this post. Can you name all the awareness conditions that each ribbon represents?  Even within the diabetes community we can’t agree on whether it should be Red (ADA) or Wedgewood Blue (IDF)/(JDRF). The Rainbow of Ribbons has gotten out of hand.  I am not saying we shouldn’t support the causes that matter to us or have impacted our lives but now we need an app on our phone that when you point the camera at a ribbon it will identify all the causes associated with that color.  After that you will be on your own as to how to narrow it down or perhaps, like reporting roadwork or radar on Waze, you could report a sighting in the wild after confronting the awareness advocate and have identified and classified that particular ribbon’s species and family.

jdrf-t1dfootprint

You may have seen these appearing in your social media feeds or perhaps you have one yourself.  This is the official badge of the Choir of Sweet Melodies. Some may look a little different.\, but the identity of the enrobed is the same: we all have a condition called diabetes.  And as the evangelists spread the good word the members of the congregation, dressed in their robes, eagerly and swiftly, post their new #T1DLooksLikeMe profile images, IGram stories and FBook posts for all their friends/family/followers to see.  I will concede, that in this modern world of anonymous and random “friends”, these posts may be enlightening to these “strange” friends. I am not really sure that the impact will be as expected. But, like it is said “If one person is reached then I have done my job.”  Hmmmm. 1:1,500,000, I should go get a MegaMillions lottery ticket. The jackpot this week is $82,000,000.00. Even 1% would buy some serious advertising.

So how do the members of choir go forth with the message and expose the heathens with healthy pancreases or perhaps failing pancreases to the importance of what is still not being publicly recognized as a serious, life altering and at time life threatening condition?  We need to stop talking just within our social circle.  Our friends and families know we have diabetes.  If they don’t, well they should and this is the time to sit them down and give them the basics.  People need to know what we encounter on a daily basis. In my 35+ years I have never shied away from testing or taking insulin in public. As a teen, if I went to the bathroom to inject it was because I needed to politely get access to a site and not because it was wrong to inject at the table.  Doing these things in plain sight are conversation starters.  I have had multiple occasions when strangers have seen me testing or giving insulin and have approached me and started a conversation. Secondly, acquire some type of medical alert jewelry.  It may save your life one day and it may also be an invitation to start a conversation.  It doesn’t have to be anything fancy or expensive. It just has to be…on your wrist, your shoe, or around your neck.

Bottom line folks, we need to pour out of the Chapel of the Unquenchable Thirst and start knocking on doors and introducing ourselves:

“Hello, I am Elder DiabetesDude. Have you heard the news? Diabetes is on the rise and we want to make sure that you are saved from this horrible affliction.  I only have 7 simple questions whose answers could save your life.”

“You’ve got a few minutes? Great!

Are over 40? Do you have any relatives afflicted with the demon called diabetes? Do you have high blood pressure? (If your neighbor is a woman – were you ever diagnosed with gestational diabetes?) Are you physically active? I only have one more question, brother/sister. You don’t have to tell me but would you please point to your weight category?

“Awesome. I am going to leave this assessment with you. Based on our score, as determined by the American Diabetes Association, you should discuss the results with your primary healthcare provider.”

Am I mocking certain church groups? If you think I am then you are probably right. But ask yourself this “Why do I know who DiabetesDude is mocking?” I’ll tell you. Because these folks get out there and make a presence in PUBLIC. We may not appreciate their tactics but I tell you this I sure as heck respect their dedication to spreading the word – whatever that may be.

Lastly, please don’t flame me because I appeared to downplay the seriousness of breast cancer.  That is not the case at all. I support breast cancer research as well as support for those who have been impacted by this equally devastating disease.

Peace+

DiabetesDude

 

 

 

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A Day that will live on in Infamy…

Well perhaps not infamy, but it will be a milestone in my journey with diabetes.  As promised in the last post this post will be about my visit with the endocrinologist after being completely dumbfounded and discouraged by my primary care provider.

I couldn’t see the new doctor until a month later so it was up to me to do the best I could with what I had.  The PCP wanted me to stop ALL carbohydrate intake, if I wasn’t going to stop all food except on weekends.  After I left the PCP I went to breakfast at Bob Evans.  They have very good omelets.  They also have scrumptious banana bread!  I don’t do things half-assed. As much as I really wanted the banana bread I stuck to my guns.  3 egg omelet with diced ham and cheddar cheese. There. No carbohydrates.  Of course now I had a different conundrum.  No carbohydrates meant no variable to adjust insulin dosage.  Where’s your logic now PCP?????After a little thought I figured it out.  Breakfast arrived.  It wasn’t as much as I usually got but it was enough and it was quite tasty.

The next 30 days were challenging.  There were days that were just as they should have been.  However, there were more days with 200-300 fastings, correction doses to get it under 150 only to repeat the rollercoaster again when I woke up.  It was clear that my body was pumping out its own glucose!  AS I had been told by the PCP that I was taking dangerous amounts of insulin, I had started to reduce the basal amount by 10% every three days.  I had been taking 100units at bed and had worked it down to 88units of Lantus (glargine i-100).

Not only was I feeling like crap because my blood sugar was consistently elevated with intermittent ketosis, but the hyperglycemia was impacting my productivity at work.  I couldn’t concentrate, my vision, already impacted by diabetes, was blurry – I stare at 3 monitors for 8 hours plus a small print reference manual.  Not to mention frequent trips to the bathroom.

Finally the appointment day had arrived.  The last time I had been in this office I had been talked down to by the Nurse Practitioner, questioned if I was really a Type 1 and because she would not help me put my socks back on – refused to look at my feet which she had asked to see.  She told me next time not to wear socks so she could look at them.  So to say I was a little anxious would be a safe bet.

I was called back and the usual things occured – height, weight (315lbs), medication lists, a finger stick for an A1C in the office and a download of my meter readings.  Next step – see the endo.  It was like waiting for the Great Oz to appear from behind the curtain.  A knock upon the door and it was show time…do or die.

Introductions were made.  Then straight on to the heart of the matter. “Why are you here today?”  I replied, “Because my PCP says I am taking too much insulin and I should eliminate all carbohydrates from my diet.”  The obvious next question was “How much insulin are you taking?”  “I am taking 48units Novolog before meals and 88units Lantus before bed.”  He then proceeded to review the numbers from my meter.  He was making notes on the paper, he pulled out his phone and punched numbers into the calculator. Then he stopped and looked at me. “Well, the problem is you are not taking enough insulin.  You should be taking as much basal insulin as your combined bolus doses. But first we need to get your basal amount increased.”  Again the calculator was employed, more notes written.  “OK. Let’s start here and go up every three days until your fasting is under 180.  As far as the carbohydrates, you need carbohydrates in your diet.  You can reduce them but do not eliminate them. Any questions?” “Yes. What is my A1C?” “8.3%.”

With that I left the office with a renewed confidence in managing my diabetes. I had finally found a provider who bought into the team approach, listened to what I had to say and what my goals were and together we develop a dynamic plan.  I also had new prescriptions for “massive amounts” of insulin to take to the pharmacy.

So what is the take away from this post?  You need to find a provider who is going to work with you without dictating your care.  We are the ones who must “suffer” this condition and unfortunately there is not a one size fits all for treating and managing this condition.  Lastly, the new endocrinologist confirmed that I most certainly was a Type 1 AND I was markedly insulin resistant.

****Update****

Went back for my second follow up.  I am currently taking 35units U-200 bolus and 87units U-300 basal.  I have been on Invokana (canagliflozin) off label for 3 months.  Drum roll……….. my A1C—-> 6.4%.  In my 38 years of being diabetic I have rarely seen it at 7% let alone under 7%.  Maybe this day will live on in infamy, for me at least!

Thanks for coming along on this trip.  IF you have made it this far please do one of the following (or all):

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Leave a comment good or bad. Tell me what you think. Tell me your story.

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Until the next time, when I will discuss and review some technology tools out there for us sugar testers.  Remember, be good and if you can’t be good at least be as good as you can.

Peace+  Tim the DiabetesDude

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Here is a book that you may find useful in your quest to make sense of this rollercoaster ride. I have no relationship with the author or the publisher other than receiving a commission through AMazon if you like it enough to buy it.

Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin–Completely Revised and Updated

Resistance is futile!?!

I cannot believe that it has been a year since I embarked on this journey of blogging.  I guess you could say that I was on hiatus. In all honesty, work, life and the ever present diabetes got in the way.  It is now time to treat this endeavor like a job and work it every day. That means giving attention to creating posts of interest and insight and getting them up at least weekly. Now, on to the show…

Let’s rewind to December 2015.  I had been seeing my new PCP for about a year. Prior to that I was going to a free clinic for my care.  They sent me to an endocrinologist associated with their care model but we did not see eye to eye on their style of diabetes management.  My PCP and I have a pretty good patient:doctor relationship and when I saw him in December the topic came up of whether I had had a c-peptide or insulin antibody lab work performed? Since I hadn’t, he went ahead and wrote the order. Let’s try metformin and see if that helps. Off I went to the lab. Also, try reducing your carbohydrate intake.  Follow-up in March.

March rolls around and there I am sitting on the exam table once again.  The results are in: My body is producing no insulin on its own AND the insulin I am taking is all but being destroyed by my body, also known as insulin resistance. That is how that conversation started. There in black and white was the evidence that I was insulin resistant AND a Type 1.  My PCP agreed that that was what it said.   The metformin had not been effective at the starting dose so we decided to try upping the dose. See you in 6 months.

Once again back in the exam room. In the interim Kwikpen was released. This is a U-200 insulin – which means 1 unit of U-200 is equal to 2 units of U-100. I had already been on Toujeo (a U-300 glargine insulin) with no great impact on my numbers.  This is where our relationship hit a wall.  I had written down what had occurred in my health over the last six months including office visits with the other members of my diabetes care team and any medications I needed refilled, discontinued or written.  I am not sure what part of that summary flipped the switch but my PCP shook his head and got up from his stool and said to me “We need to have a come to Jesus meeting, Tim!” At this point he was bobbing in place, short of jumping up and down.  “You are taking entirely too much insulin. Do you realize that you are taking a toxic medication? You need to take less insulin.”  Those statements were repeated several times.  I looked at him and told him that I was aware of the actions of insulin but I was also aware that what I was taking was not being utilized because of the insulin antibodies. So what is the answer? (If you are not already sitting down, please have a seat.)  He paused, sat down at his desk and pulled out several stapled print outs.  “Here. You should read these. You should sincerely consider fasting.”  I was dumb-struck.  OK. I was not sure how to respond.  The print outs were transcripts from several YouTube videos from a physician in Australia who has his Type 2 patients fast for up to 5 days a week. Every week.  Of course they all tout losing weight and reversing their insulin resistance.  He sat back down and said he really thought I should consider that because the answer was not more insulin.  He returned to my summary then looked up again.  “I will not renew your Toujeo.  The prior authorization is time consuming for my staff and I do not want you taking more insulin.”  We agreed on me getting a flu vaccine and he left the room.  See you in six months.  A few minutes later he returned and handed me a copy of Richard Bernstein’s book “Dr. Bernstein’s Diabetes Solution.”  “I know you are a type 1 but this may help.”

When I returned home and had cooled down I made a decision that has changed my life – No, I did not start fasting; I called the endocrinologist’s office and made an appointment.  If more insulin was not the answer then I wanted to hear it from the endocrinologist.  I was given an appointment for October 18.  and in the interim I read Dr. Bernstein’s book.  If anyone was going to have an opinion on insulin resistance being treated by decreasing insulin intake, it was going to be Dr. Bernstein.

 

The next episode I will tell you how my life changed on October 18th 2016.  Until then, be well or at least as well as you can be.

Peace+

Tim, the DiabetesDude

I have provided a link to Diabetes Solution available through Amazon.com.  I have no relationship with the publisher or the author. I do receive a commission from the sale of this product through the Amazon Affiliate program.

 

The Big Game

Last week I could not wrap my head around what I was planning to write. I had loads of lines floating around in my head but none of them felt right. So, I did not pursue posting anything and felt it better to let me be inspired and then post.  The inspiration indeed did materialize.

Let me tell you another story first.

Way back in the dark ages of the Internet, in its consumer infancy, when AOL, Compuserve and a plethora of other smaller portals were connecting people to the digital highway, I was a subscriber to a local BBS (Bulletin Board System) that connected me to other local users in “chat” boards and allowed the transfer of files between one user and others.  There was no instant messaging or peer-to-peer downloading but we managed to get by.  In addition to being connected to the local folks it also connected its subscribers to news servers.  One of the news servers I belonged to was a diabetes group.  This was probably the beginning of the DOC in its most primitive sense.  But here was a place that diabetics from around the world could come together and “chat”, share ideas, experiences and the occasional flame war when a member would post about the new nutraceutical that cured their diabetes or contributed to the ongoing debate of how bad artifical sweeteners were.  It was a great “place” to be just like the expansive DOC world that has blossomed from it.

There was a member who was quite active on the boards.  He was from England and a lot of the things he was saying I agreed with.  I made contact with him and after several back and forth posts our friendship began.  While I was working a diabetes summer camp there were several counselors and medical staff from all over the world.  One of the counselors was from England and his name was David.  (Now I know that just because you are form someplace you don’t know everyone else form that place.) However, there were a lot of similarities between camp David and BBS David. So eventually I asked BBS David if he was indeed this same person?  He was not, but that didn’t matter.  By this time we had been communicating on a regular basis and found that we had a lot of things in common: Obviously, we both had diabetes, he had a step-daughter, his wife was a nurse, we liked the same music.  We always had something to chat about.

David suffered from complications from long term diabetes.  He was essentially confined to a wheelchair for the most part due to neuropathy.  David’s complications earned him disability status.  David had a lot of time to watch the races as well as his beloved Arsenal.  I would get Arsenal updates from David on a regular basis…some of which occurred in the middle of the night!  Needless to say, David enjoyed his sports and he enjoyed keeping Ladbrokes in business as well. On occasion, Ladbrokes had to pay out.  We would always talk about who was in the Super Bowl and what I thought the outcome would be.  I am not really a gambling man but I would give my opinion.  David on the other hand knew the statistics and all the data that made the difference. It was just another sport for him.

Without going into details, David’s last few months seemed like he spent more time in casualty or inpatient then he did at home with his wife, Carole.

Carole was a real trooper.  One could only care for someone like she did because she loved him.  Being a carer is a tough thing to do, especially with an amputee. She and David were truly soul mates.

Back to last week…As I was mulling over how to proceed with my post I was browsing my FaceBook feeds.  There it was, Carole had posted on David’s page that he had quietly passed away in the night.  It didn’t matter what I had to say this week. My friend had passed away.  I don’t know what the official cause of death will be but regardless, diabetes had contributed to it.

That was it.  I knew that this week’s posting would be a tribute to a good friend who enjoyed life and enjoyed his sports and loved his family and friends.

Rest in Peace, David.  You will be missed.

The Prequel – The Journey Begins

Now that I have embarked on this journey I want to take a moment to step back a little bit and tell you what was happening to me that lead up to that fateful day in the phlebotomist’s office.

I was always a chunky kid. At times I was a downright fat kid.  Destined to wear “huskies” denim instead of Levis.  Genetically, I come from a line of big people.  Because I had a weight problem I was no stranger to Sweet-N-Low.  My family didn’t really eat sugary things. It was rare to have a box of Fruit Loops or Trix in the cupboard. We were strictly a Cheerios and Raisin Bran family.  TAB was the go to drink if we drank soda.  The quality and quantity of the food was never an issue.  The main issue was exercise.  I really did not like to be physically active as a whole.  I had friends and we would play together – like your average kids did.  I walked to school, it was approximately a mile, I participated in physical education and I rode my bike – at least one of these things occurred on a daily basis. But given the choice between going outside and playing or staying inside and reading – I would be inside reading.

Sometime around September or October, before my diagnosis, I developed what most likely was the flu.  Typical symptoms – fever, runny nose, cough, general malaise.  It ran its course and after about 10 days the fever and congestion had left but I still had the general malaise AND now I was constantly thirsty, always hungry and urinating more than I put in. (In the medical world we call that the 3 P’s-polydipsia,polyphagia & polyuria.) What we now know as the classical signs of hyperglycemia or diabetes.  However, there was no diabetes in our family AND I was just starting puberty so no one really thought anything of it.

I was losing weight and urinating every 15 minutes or so.  I remember having to go at every commercial break.  Everyone was happy to see me lose weight because I was finally fitting into the acceptable percentiles for growth for my age. Actually I was taller than I should have been.  That had lead me to a pediatric endocrinologist the year prior.  Nothing really came of that visit and hospitalization.  Finally, my tongue started to become irritated and swollen. Initially there was no reason to suspect anything earth shattering. Perhaps I had burned it, bitten it, or irritated it from my braces.

After losing approximately 25 pounds in a month, the chronic thirst – urinate cycle, lethargy and now swollen, painful tongue my parents decided to visit the pediatrician. We know where this story ends now.

Two weeks ago I attended a webinar from dLife, “Missing the Diagnosis“.  Part of the discussion was how physicians and diagnostic practitioners must do their due diligence to the fullest when presented with an acutely sick child or adult – especially when the diagnostic trail of a differential diagnosis can be started with just a drop of blood.  Among all the issues surrounding diabetes – the treatment, the complications, insurance coverage, cost of medication, new technology- it is all for nothing if we cannot get the patient correctly diagnosed in a timely manner to save their life. Please click on the link to the webinar – it is a PDF file of the slides.  Included are statistics and actions you can take as well as organizations created to enlighten the community on making earlier diagnosis of diabetes.

I would like to thank my pediatrician for doing his due diligence and putting me through the hoops.  Please keep in mind that when I was diagnosed most doctor’s office did not have a portable glucose monitor.  The A1C test was in its infancy. Fortunately, I did not have to experience the fatal effects of Diabetic Ketoacidosis. I was in ketosis on admission to the hospital.

That is the prequel to my story. Thank-you Dr. Brenner for pursuing the differential diagnosis to completion.


Diabetesdude is Tim Moeslein, RN.  He lives in Eldersburg, MD, a small suburb in southern Carroll County.  He is a former Certified Diabetes Educator and has had a diverse professional career as a Registered Nurse both in the diabetes arena and beyond.

The Journey Begins

Welcome to my little spot on the web and the DOC avenue.  For those of you not familiar with the DOC, it simply means the Diabetes Online Community. Several months ago I was listening to Dr. Matthew Hertert’s podcast”Thriving Diabetics” and this particular podcast was an interview with Scott K. Johnson of ScottsDiabetes.com.  Dr. Hertert made a comment to Scott that the blog world in the DOC was predominantly occupied by female voices and that it was good that there was a man who was willing to share his feelings about being a PWD (person with diabetes) – both positive and negative, the struggles and triumphs experienced throughout his life as a PWD.  Dr. Hertert has insulin dependent diabetes for 40+ years.  His story is quite interesting and I highly recommend that you take some time to listen to his podcast.

With that being said, that comment lit a spark in my soul and ignited my brain to start to formulate what I would write that may be of interest to others.  The more I thought, the more ideas I came up with that I believed would be worth sharing.  As the lyrics to “Do-Re-Mi”, from ‘The Sound of Music’, state “Let’s start from the very beginning.  A very good place to start.”

It was Wednesday, January 17,1979 – 8:00 AM.  I was scheduled for a GTT (glucose tolerance test) at the local lab.  I had been feeling poorly for the last month or so and the pediatrician could not figure out what the underlying cause was. Peculiarly, I had symptom that just did not make any sense – my tongue was swollen with papules all over the surface.  It was quite painful and burned.  There was no thrush or signs of infection.  I had braces, so they sent me to the orthodontist. Shrugs.  He sent me to the dentist. More shrugs. After that I was scheduled for the GTT.  Maybe that would shed some light on the problem.  This was not my first GTT. I had undergone one before a couple years earlier and it was negative.

As is protocol for the GTT a blood sample was obtained for a pre-challenge baseline.  That’s when it all went down hill.  It was classic. The phlebotomist called my mother back into her office.  I was left in the waiting room.  Unbeknownst to me my mother was on the phone with my pediatrician.  The baseline sample was elevated (I do not know the value) and because of that my pediatrician was pretty sure I was suffering from diabetes.  He told my mother that he would call the hospital and have me admitted directly to the pediatric ward.

And so it began.  I was 10 years old.  Soon to be 11 in 6 days and I was off to the hospital.  I didn’t know what diabetes was.  No one in our family had diabetes.  Before going to the hospital my mother and grandmother decided that it would be a good idea to take me out for a “last meal” at The Greenspring Inn. My favorite thing on the menu was a creme de menthe parfait. Boy was it good!

The hospital was ready and waiting when I arrived.  I had no idea what I was in for, but if it was going to make me feel better then I was all for it.  I think the parfait confirmed that I was indeed a diabetic.  My admission baseline blood sugar was >600mg/dl!

Well, that’s how it all began 37 years ago today.  Going forward I will share with you my personal experiences as a child, teen, young adult and adult with insulin dependent diabetes.  A lot has changed since that Wednesday in 1979 and as they say “The more things change the more they stay the same”.  I will try to update this blog weekly but bare with me if it happens before or after that schedule.


Diabetesdude is Tim Moeslein, RN.  He lives in Eldersburg, MD, a small suburb in southern Carroll County.  He is a former Certified Diabetes Educator and has had a diverse professional career as a Registered Nurse both in the diabetes arena and beyond.