muddybrooks

My experiences post total pancreatectomy.

Sugar Surfing Comes to the Boston Area

Dr Stephen Ponder made his way to Braintree, Massachusetts on September 9, 2017 to present a Sugar Surfing workshop. It took months of planning to pull it off, but we did it!!!! It was held at Thayer Public Library in Braintree & there was a great crowd that came to hear Dr Ponder speak about Dynamic Diabetes Management, also known as Sugar Surfing. We had people from Ohio, Michigan, New Jersey, New York and from all over the New England area. I’m still in shock that it actually came to be!!

I discovered the concept of Sugar Surfing in early 2016 from meandering around the DOC (diabetes online community). Everyone was talking about a new book, Sugar Surfing & how it was helping to make daily diabetes management a little easier. I quickly ordered the book to discover for myself what this concept was all about & almost read it, cover to cover, in one sitting. It sounded amazing but it was also very detail oriented & it involves working with your CGM very closely. Could I do it??? I wasn’t sure. (If you want to learn more about Sugar Surfing, check out their website, sugarsurfing.com &/or purchase the book, Sugar Surfing, at Amazon.) I struggled for a few weeks making slow progress but I was undeterred. I wasn’t going to give up because I believed this would help me once I got the hang of it.

I had heard that Dr Ponder was doing workshops around the country and even internationally, so I thought, great!! Surely he would come to Boston. I waited a couple of months for someone, somewhere in the Boston area to organize a workshop here but it never happened. I would have to be the someone who had to plan it, if I wanted to hear Dr Ponder speak.. From that point onward, I was determined to make it happen!! But how????

On a quiet day, mid 2016, I decided to message Dr Ponder on Facebook and invite him to come to the Boston area to do a workshop. But I didn’t think anything would come of it. I’m just a small town, middle aged woman who is chronically ill and in & out of the hospital. I’m unknown in the diabetes community, so surely he wouldn’t want to come… But much to my surprise, he said yes!!!!! Oh no!!! What am I gonna do now, I thought to myself.

Dr Ponder hooked me up with some incredible support people who had experience planning one of these workshops & of course, he was a source of great information as well. It took us about seven months to get all the details lined up and in place and thankfully, we pulled it off.

We got great feedback from many who attended, so I think it was well received by all. There were even a few insulin dependent type twos in the audience who were very excited to use what they had learned in their own diabetes management. I’m very happy that we had made it happen, was well attended & people were very happy with the content presented and eager to make some changes to her or his individual management.

So, based on my Sugar Surfing workshop experience, I would recommend that anyone interested in Dynamic Diabetes Management, attend a workshop presented by Dr Ponder. And if there isn’t one in your area, do what I did, plan on hosting one yourself. I’m happy to help support anyone who wants to go this route, so contact me here or at my email, sandybrooks261@gmail.com. Dr Ponder is an EXCELLENT speaker. He presented the material in a way we all could understand and he was very receptive to questions. I found that having read the book before I went to a workshop, I was able to understand the concepts involved much more easily than having just read the book. But that’s just my style of learning. I’m sure many can just read the book and be fine with applying the principles. The website is also a great source of Sugar Surfing material.

My thanks to Dr Ponder and all the others who helped me bring Sugar Surfing to Boston!!

 

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Daniele Hargenrader ROCKS!!!

I know… 2 posts in one evening!! What’s gotten into me?? But I must tell you about the Diabetes Dominator creator and coach of the True You Coaching seminar, Daniele Hargenrader and her AWESOME husband and co-coach Bill Hargenrader and their new coaching program.

It’s no surprise that I’m a fan of Daniel’s (I’m not a stalker but I love her Diabetes Dominator series on YouTube) and have come to “meet” and interact with her & her amazing husband in the course of the True You Fitness Program. They have developed this 6 week coaching course to help those of us trying to improve our fitness and nutrition through their online course. It is nothing short of AMAZING & Life altering…and I’m not exaggerating or being overly dramatic!!

I’m almost through week two of the course and have learned more than any other fitness/nutrition course I’ve taken & it’s no where near over yet!! Each of us in the group support each other through a weekly group support call and a dedicated Facebook page where we can describe our successes and failures & there’s no judgement, only support and lots of kindness.

Each week we have several videos to watch and learn from that pertain to the topic of the week. And, Daniele has done a suburb job of structuring these videos to meet the goal at hand. Plus, there are stretches and workouts each week that build on the last so those of us participating grow with each passing week. There is also a video interview that Daniele conducts with someone that’s an expert on that week’s topic so we get another point of view, not just Daniele’s or Bill’s  We journal and keep track through MyFitnessPal online app that Daniele monitors to provide constructive feedback and advice, as well as a progress tracking worksheet that helps us monitor where we’ve come from and our progress to date.

Daniele has developed what has come to be called the Pillars of Health that describe the necessary topics needed to go over and incorporate into our lives if we want to be successful in this program.

Her husband, Bill, is our co-coach and participates in the weekly group calls & is equally as knowledgeable and supportive of us as is Daniele. They make an excellent team and I couldn’t think of better people to provide this experience.

In my opinion, this program has been life altering for me. Their passion and knowledge and ability to convey the lesson at hand is AMAZING!!! I’m growing physically, emotionally and spiritually just to name a few & it’s changed my life in ways I never expected it to.

This program so far has been successful and well received and it’s my understanding that they will provide the opportunity for others later this year or early 2018 to participate. I highly recommend you sign up if you’re interested in changing your life and not just existing but thriving. Bill and Daniele have not asked me to review their program or promote it in any way. These words are my own and I only want to provide my opinion for those looking for something to improve the quality of her or his life as I was. You won’t be disappointed if you chose to register and participate, I can guarantee it!!

Until next time…Check don’t guess

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It’s A Guessing Game To Figure Out What Effects Our Blood Sugar

My sleep has been off lately and I’m working with a sleep specialist to get to the bottom of my issues…but HOLY Cow!!!! A recent nightmare caused more havoc than a sweet snack would have!!!

I understand that anything that causes flight or fight response will release cortisol and cause a higher than desired BG but I learned a valuable lesson the other night. I had a nightmare from Hell that caused me to wake up crying and in a drenching sweat but what I hadn’t anticipated was a REALLY HIGH BG!!!! It was a long hellish dream but I really don’t know how long I had experienced it.  Soon after I woke up, my Dexcom started alarming that my BG was high and I figured out I must have slept through earlier alarms alerting me to high bg’s because by the time I acknowledged my high Dexcom alarm, I was over 250!!!! And my high alarm is set at 170, so I must have really been engrossed in the dream.

I’ve never had a high BG before no matter what I dream about even the anxiety driven dreams of trying to run someplace but never getting there. I don’t remember the dream. I just remember waking up with my heart racing and sweat pouring off my brow. When I checked my Dex I was shocked to see how high it was!! With the sweating, I most  certainly thought I must be low but that was not the case.

I got up and did a finger stick which confirmed my high level so I did a correction bolus thinking it would come down in due time…BUT it didn’t!!! I must have had a doozie of a nightmare because I chased a high for hours despite a few correction boluses!! I even changed my infusion set and gave a needle injection for a correction thinking my set must have been bad despite the perfect looking cannula when I removed it!!

Moral of my post, be on the lookout for anything and everything to effect ur BG whether it be a high or low reading. I can add a bad nightmare to the growing lost of things that cause me to go high!!!! IMHO…it’s a never ending list a causative factors for a high or a low. SO I’m learning to be on my toes and to expect the unexpected BG from a myriad of experiences.

 

Check, Don’t Guess!!!

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Blog Week Day #4- What makes dealing with diabetes and emotional issue for u & how do you cope.

I can’t believe it’s already day #4 of Blog Week!!!! It’s going by WAY TOO FAST!!!! Maybe we can #blamePete!!!!

In my daily management of my diabetes, I assign emotional value to my blood sugar readings!!!! I know I shouldn’t!! I know it is just a number that allows me to make a decision about what I need to do in the near future to keep my blood sugars in range. But I feel badly when I’m out of range and I blame myself for “being a BAD diabetic”!!!

Mr Sandy follows my Dexcom numbers on his phone so he knows at all times what my blood sugar is doing. He’ll send me a text if I’m really far out of range just to make sure I’m aware of my number. But I always feel guilty that maybe I didn’t wait long enough to eat after I prebolused, for example. Or if I’m low, how did I not count my carbs right and take the correct amount of insulin.

I read Dr Stephen Ponder’s book, Sugar Surfing, and I have been trying to apply those principles to my daily management but I can’t seem to attain the in range numbers that are shown in the book. Does this make me a bad diabetic?? Unfortunately, my brain immediately goes too blaming myself for the out of range number. But my heart knows I’m trying my best to manage and the number is JUST A NUMBER!!!! I wish I didn’t do this but It’s just how it goes for me!!! YDMV-Your Diabetes May Vary.

I’m working on this and I’m always telling myself that I am not defined by my numbers!! It’s just a number that helps me to make treatment decisions. But I’m a work in progress and I haven’t gotten to the point yet that my numbers don’t carry an emotional value.

My diabetes medical team is AWESOME and just takes my numbers as points on a graph that helps them evaluate how I’m doing. I never get the “Blame Game” from them. It’s just me but hopefully someday I’ll get where my numbers are just that, numbers & not a source of guilt.

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Blog week Day 3-Wild card

I’m a little behind so I’m just getting to Wednesday’s topic but I’m gonna go wild card!! The proposed topic is about a negative experience related to your D and then turn it around and write what you wished that person had said. But I haven’t had a recent experience that I can write about so I’m going “WIldcard” topic. Here goes:

A funny thing happened to my hubby and I in the grocery store recently. Usually when I go food shopping by myself, by the time I get to the checkout line I usually am low. but we went shopping at our local grocery store right after we had had lunch.

We were standing in the line behind an older lady who looked very “prim & proper”. My Dexcom started to go off and she heard it. Hubby then asks me, “You low?” I stated, “No!!! I can’t believe how high I am!!” The lady was within ear shot and heard me complain that I was high!!! She actually sighed, and turned away in disgust!!! My husband and I laughed which made her more indignant!!!

We’re guessing she thought I was “high” and not from my blood sugar!!! We thought it was hysterically funny and were practically giggling while she put her grocery items on the belt. When she was finished checking out, she walked away quickly without even glancing in my direction. Too funny, IMHO!!! (In My Humble Opinion)

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The Holy Grail, so to speak.

I’m going to start with a disclaimer that I am not acting as a medical professional for the purpose of this blog although I am an RN. I’m not an expert on any one’s diabetes care but my own and the words contained in this blog come from personal experience and my own opinion only.

There, now that that’s out of the way…

I had a very exciting day last week where I was being considered as a subject for the next leg of the Bionic Pancreas clinical trails. The Bionic Pancreas (BP) is one of the few closed loop systems usually referred to as an Artificial Pancreas (AP), for lack of a better, more accurate word. This device is the result of a collaboration between Boston University and Dr Ed Damiano & Massachusetts General Hospital’s diabetes research and Dr Stephen Russell. What makes this AP different from the others is that ultimately it will be a bi-hormonal system, meaning it will administer both insulin and glucagon. Many scientists are looking for a more stable form of glucagon than the current standard that is only stable for 24 hours. It is rumored that a company in the United States has developed a form of glucagon that is equally as stable as insulin but is not available just yet.  They’re still working on it. Hopefully soon!!

I actually had the device IN MY HANDS!!!! I couldn’t believe I was about to use the bionic pancreas as it is now. But after an hour and a half of learning the intricacies  and how to use the device, all my hopes were dashed!!! The researcher frowned when I mentioned (AGAIN!!! As I had also mentioned in my initial email.) that I am a surgical type one. She then proceeded to tell me I was  not eligible to participate due to my not being a “pure” diabetic. WHAT???!!! Because I did not have autoimmune type one diabetes (T1D) (apparently referred to as pure diabetes) they declined my offer to participate.

I was devastated and found myself explaining to the researcher that although the origin of my T1D was not autoimmune, my lack of a pancreas made my diabetes behave identical to any one with an autoimmune T1D. She left the room to ask someone with a little more authority than herself in regards to the study but came back with the same, “I’m sorry but you’re ineligible.

I had held the Bionic Pancreas in my hands!!!!! This little unassuming device has the potential to change my diabetes life and the cognitive burden of dealing with diabetes decisions 24/7 but because I’m “unpure”, I’m not a candidate. I thanked her and let myself out trying to hold back tears. I don’t cry easily but I had assumed I would come home with my own loaner BP because I had explained my surgical status to the intake research assistant who did not say I was ineligible. I really believe in this developing technology and the Bionic Pancreas in particular, so I was devastated to find out I couldn’t participate.

I’ve been following the progress of the Bionic Pancreas since my surgery in 2013 and have always felt it would be the treatment of choice for me when it finally gains FDA approval and hits the market. ( Just a reminder, I had my pancreas removed in 2013 due to 27 years of chronic pancreatitis. I also had a failed auto-islet transplant which means they transplanted back into my body my own islet cells in the hopes I would not become a person with diabetes (PWD) On my return trip home I started to think that maybe because I was a surgical T1D, when it finally comes on the market, will I also be ineligible from using it because of my unpureness???? This was a disturbing thought to me. The Bionic Pancreas, to me, is like the Holy Grail. The research they are collecting points out that this little device made by BetaBionics (the new company started to eventually market the product) significantly improves blood glucose (BG) control as compared with usual care.

Luckily, Ed Damiano, CEO of BetaBionics and co-lead researcher from Boston University, was speaking locally the same week that I was turned down. I trekked on over to the venue to listen to him speak and  to ask him personally to think about including surgical T1D’s into the clinical trials.

As he presented a brief history of the BP and then showed us the new trial data, I was even more in love with this little box that hopefully one day will improve my brain space from having to make countless diabetes decisions in my day to day life!! After he was through presenting, there was the usual Q&A where I asked him about including us surgical, unpure PWD. He remarked that my visit just a few days prior and my trying to make a case to allow me to participate resulted in a flurry of emails between many of the researchers eventually making it to Dr Damiano”s and Dr Russell’s inboxes.

The result of all those emails is that from this point forward, surgical T1D’s WILL BE INCLUDED in further legs of the trials!!!!! WOO HOO!!!! Music to my ears!!!! However, I was still not going to be able to participate in the current study that started this last week. That’s OK though!!! A good friend of mine, Sarah MacLeod from the blog, “What Sarah Says” is participating and it would have been so cool if we could have done it together. But, I’m going to have to live vicariously through her as she goes on with the study. Also, at the most recent meet up of our Boston South Diabetes Sisters PODS group, I discovered that one of our attendees is also participating. This is so cool!! Although I’m not an active participant, I will be able to experience it through these women’s eyes & get their perspectives on the device.

If you know anyone with surgical diabetes, let her or him know that they CAN participate in these particular T1D BP trials, as can “pure”, autoimmune T1D people. Have you considered participating in any kind of medical research trials? What type? & what was your experience? I’m very interested in science and medicine in particular, so the thought of being included as a clinical research trial subject is very exciting. Stay tuned because this artificial pancreas (again not the most accurate word) area of study is booming especially with Medtronics soon releasing their 670G closed loop system. Anyone using it yet?? I’m interested in how that works too!!

 

Thank you for taking the time to read my post and HAPPY SPRING!!!!!

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Interchangeable???

I wrote recently about being forced to switch to Humalog from Novolog due to an insurance mandate. I was willing to give it the old collgeg try & not wimp out at the least bit of trouble. So I tried the new Humalog for three months despite higher than average blood glucose readings right out of the gate. And I have to say cost did factor in. Novolog is three times the price of Humalog, for my i Duran even, truth be told!! But I’ve HAD IT!!!!

My blood glucose especially at the postprandial readings are significantly higher than they are when I’m using Novolog!! Call me stubborn but I was trying to figure out how to play with the dose of Humalog to make it work but I’m crying U-N-C-L-E!!!! Nothing I do while taking the Humalog will bring my numbers down!!!

I was prebolusing before my meals my usual 15-20 minutes but two hours after eating I was in the 300’s. So I decided to bolus 25-30 mins before I ate, still it left my over 300 at the two hour mark despite accurately counting & blousing for my carbs.

Plus, due to this high result hours after my meal, I ended up chasing highs for hours. But I was determined to try and make it work. Going back to Novolog at three times the price definitely made me more willing to wait out the higher numbers in hopes I could figure out how to make the Humalog work but enough is enough!! I’m thinking my A1C is going to be higher this go around due to this experiment. But I’m not willing to flirt with an increased risk of complications to carry this trial any further.

I’ve only back to my Novolog for just over a week but already my bg’s are back to their usual lower number.I’m back to only blousing 15-20 mins before a meal and I’m back in range by the two hour mark.

I spent much time contacting my health insurance company trying to figure out what needed to be done to go back to my beloved Novolog. Turns out, many calls & time spent on hold later, I just need a prior authorization to be allowed to pay the higher tier price!!

I’m very blessed in many ways that I can afford the triple price tag. This experiment has given me a whole new appreciation for being able to pay the higher tier. I would be up a creek, like many folks are, if I could not afford the increase in price!!

The trouble came when I tried to get said prior authorization from my endo’s office!! I was met w much resistance from a CDE who does not know me, tried to convince me the insulins are interchangeable & that I didn’t need to go back to Novolog!! WTH!!!!

I had multiple conversations w this CDE that although on paper & maybe for others it is interchangeable, that was not my experience. She mentioned several times that I was expetiencing the “placebo effect” when in actuality my numbers were probably fine & I was interpreting them incorrectly!!! WHAT??? SERIOUSLY!!!!

Long story short, I told her it was my decision as to how to spend my money & I chose to spend it on the higher tier insulin!! U can bet, when I see my endo next, this difficulty w the CDE will be discussed!!! She wouldn’t even consider that for me Novolog and Humalog are not interchangeable!! I was furious!!! Not amount of data showing her otherwise would convince her that Novolog was better for my numbers!!!

If I hadn’t needed a refill I would have waited to speak to my endo who was away!!! It just proves that even some so called “experts” in the diabetes field have NO CLUE that, as Bennett says, YDMV (you diabetes may vary).

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Happy Turkey Day

i was determined Thanksgiving morning that I was NOT gonna spend my day chasing a high blood sugar as in years past because I didn’t pay close enough attention to carb counts & boluses!!!! But this year I had a little more control over the menu & therefore knew more precisely how many carbs were in what.

How did I do in my quest to be more in range last Thursday???? Eh!!!!

I mentioned in my last post that I was forced to change my brand of rapid acting insulin to Humalog like many of you have had to do. I’ve been trying very hard to notice my BG trends more on my Dexcom CGM, instead of just blindly going along. I have noticed that for me (& this is all I can speak to because I’m just recounting my personal experiences.) the Humalog seems to act 5-10 minutes more quickly than the Novolog did & I’m also noticing that it doesn’t have as long a tail. It seems to be out of my system more quickly.

I like that it acts more quickly, so I don’t have to wait so long to eat after I prebolus. But the shorter tail isn’t so good for me because it means my BG is still elevated 2 hours  after I’ve started eating, even if I’ve carb counted the amounts that I usually bolus for. (I’m a creature of habit & I basically eat the same things over and over again every day. Boring, I know! But it is what it is!!) I’m still trying to play w the Humalog with varying meals & bolus doses. So, the jury is still out on whether this shorter tail is good or not. (Any suggestions as to how I can better manage postprandial spikes are greatly appreciated.)

As I’m  dealing with the change in insulin, I’m still post DKA from my experience two months ago that has left me spooked. I’m feeling I got too complacent with my diabetes management. I wouldn’t describe myself as having been in burnout but I definitely was on autopilot. And, it’s not that I didn’t care either. I’m at a loss of a word or words to describe my thoughts & emotions in September regarding my T1D.

 

I DEFINITELY relied TOO heavily on my pump with minimal input from me. I was SWAGGING (scientific wild ass guessing) almost every time I put something in my mouth.And, one pump failure to notice a silent occlusion & I was in deep shit. I won’t repeat the gory details but suffice it to say I ended up in the hospital in “resolving DKA”!!!! I must add that it was a PERFECT diabetic storm cuz my Dex transmitter had died the day before. With my waning mentality toward my T1D, I wasn’t checking my BG enough to catch the persistent high that I was experiencing.

I’m trying to be mindful of where I am in my life right now & I’m trying to be grateful for my many blessing in my life. So, to me this includes being more aware of what my BG is doing. I’m back to more finger sticks per day & calibrating my Dex on a regular basis instead of just letting it do its thing. Like I said the DKA spooked me & I NEVER want to experience that again!!! It was my first DKA & hopefully my last!!!

 

 

 

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A Book Review & A Fond Farewell …For Now!!

“The Sweet Blessing: My Adventures In Diabetes” is an INCREDIBLE book that I had the good fortune to spend a rainy Sunday afternoon reading. But more on that in an upcoming paragraph!!!!

First, I’d like to thank my old friend, Novolog, for almost four years of service!! I’ve been using it since my diagnosis in 2013 & have known no other fast acting insulin. But my medical insurance, in their infinite wisdom, has decided that my beloved Novolog has to hit the road & I must welcome the newcomer, Humalog!!

Novolog versus Humalog

I’m  not sure how I feel about this change but I’m open to giving it a shot…pun intended!! So, tomorrow when I change my infusion set, I will fill my reservoir with Humalog for the trial run. I will post how it goes with, hopefully, my new friend. If anyone has any stories, experiences or even advice about switching any kind of insulin, I’m all ears. I welcome advice and information in any form.

Now, here is a review of  Trisha Porretti’s, “The Sweet Blessing”. Before I get into the book, let me first introduce Ms. Porretti RN, BSN, CDE, a diabetes advocate & although I have never met her, I feel I can confidently say, she’s an all around good egg. How could she not be?? She believes in the power of laughter as a working member of any person’s medical team which makes me admire her & her work so much more. In the back of her book there is an excellent bio that briefly describes her accomplishments of which there are many!! I wont try to rewrite what has already been done so eloquently.

What I like mainly about the book is that it is written from the perspective of someone who came to experience the upheaval that any type of diabetes causes as an adult. I started this blog trying to find other surgical people with diabetes and although I’m still looking for them, I LOVE to speak with others who have come to be diagnosed as an established adult. By this I mean that we have lived for a good long time without counting a single carb but have come to learn that carbs are the driving force behind a post prandial, after meal, blood sugar spike & to begin to have a prayer of managing our blood sugars, we MUST count every single little  carb in every single meal

Ms. Porretti is from a Roman Catholic family, as I am and she spent 12 years in Catholic school including an all girls high school. I didn’t spend all of my school years in Catholic school, but I was taught for a good many years by the Sisters of St Joseph as the author was. I can definitely relate to the author’s affinity for the Blessed Mother, aka, Mary, the mother of God/Jesus. My Dad hung a bust of Mary on our bedroom wall & frequently reminded my sister and I to say our Rosary to the Blessed Mother before we went to sleep. Ms Porretti, humorously describes her on again, off again & then back on, relationship with prayer where she frequently sought Mary’s intercesstion in helping her get through a particularly rough time. And when she least expects it,  Mary takes a front seat in Trisha’s life in a very big way.

The bio in the back of the book describes Ms Porretti as a Laugh Leader & she describes how she uses these laughter techniques throughout her life. And on many occassions, she was invited to perform a stand up comedy routine to crowds of varying sizes all to the delight of the audiences present. As many of u know, I have tried to use laughter throughout my years with chronic illness & I believe the Blessed Mother Mary, put my now husband into my life so that we would each be able to comfort the other during bad and good times with our funny, although some may call them warped, senses of humor.

One of the many touching stories is how Trisha went to Diabetes Camp as one of the pediatric nurses on staff. Since she was diagnosed as an adult, she didn’t have the opportunity to go to diabetes camp as a kid, but she makes up for that it many ways forming life long friendships with many of the campers and staff alike.

I could go on & on about this book. I loved it so much and related in so many ways to the author’s story, but I won’t bore you all with what I thought when you can get a copy of your own on Amazon & read it yourself. “The Sweet Blessing:My Adventures In Diabetes” is a very serious yet funny and sweet look at diabetes through Trisha Porretti’s life. I hope those of you who read it will fall in love with Trisha as I have. Enjoy!!!

Remeber to CHECK!!! Don’t  GUESS!!!

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another attempt at do we depend on our D tech a little toomuch!!!

I had a whole blog post written up about my recent experience with Dka and pump silent occlusions. It got deleted by accident so I’m  going to attempt to paraphrase my words to get the point across  while delving into  our dependence on D tech as a whole. Here goes, AGAIN!!!

Recently, at a Diabetes conference as a group we were talking about the impact of closed loop systems on our daily D management. A new D friend brought up an interesting point that I now find myself pondering  due to recent medical events in my life.

If I can summarize what he asked, he talked about how relying on D tech, including bolus  wizard pump  calculations of insulin dose amounts due to insulin to carb ratios, as well as the algorithms in the closed loop systems, allowing our ability to figure out how to independently figure out our own insulin doses decrease and become nonexistent? Are we allowing a  “dumbing down” for lack of a better term, of our own abilities to figure out these parameters on our own! It brings up a good point.

In recent weeks I found myself experiencing DKA & several unexplained  hyperglycemia episodes which I believe were ultimately due to what’s called, ” silent occlusion” where my pump failed to notice these partial occlusion in which my infusion sets failed due to kinking of the cannula!

On 2 different occasions my glucose was in excess of 570 & due to a problem w my CGM sensors and transmitters at the same time, I was unable to treat these highs in a timely fashion. Once I experienced full blown DKA, spilling large blood ketones as measured by my blood ketone meter. And the second time my ketones were measuring small so it was believed we caught the problem before it got out of hand.
Both times the hyperglycemia required a trip to the local ER as well as hospitalization & IV insulin, as I was experiencing  EXTREME nausea & vomiting as well as the out of control abdominal pain! 

These episodes came out of no where & I did not have the preventive knowledge that my Dexcom CGM would have provided  due to a malfunction of my CGM transmitter. I was waiting for Dexcom to replace my transmitters so other than a point in time bg meter value, I had no idea I was headed toward DKA. It was a perfect storm of sorts.

The frustrating part was I had been in close contact with my endo’s convering doc & had tried a “virgin” insulin injection doses w a syringe using the same insulin in my pump so I knew that the insulin wasn’t the problem. Both times, I removed and reinserted in a different spot my infusion set to help remedy the problem to no avail!!

This all started on a Friday afternoon, of course, after my endo’s office had closed for the day. I am blessed to have a very knowledgeable, supportive and caring endo & the covering doc was equally as good! ( if I can brag a minute, my endo’s office at the Diabetes Center at MGH is the office where the Islet Bionic Pancreas research project originates!! Dr Ed Damiano , Stephen Russell, MD & research staff ROCK!! So, although I applaude Medtronics resent Closed loop system approval, I’m waiting for the Islet, closed loop system to hit the market!! Ok, bragging over!!)
It was incredible that I called Medtronics to help me w my pump Saturday morning ,spending over an hour on the phone, only to have them reassure me “everything is fine! U can continue to use it!! ” Hearing this, I neglected to listen to my gut and that of the covering endo, and continued to use my pump!! Can u say DENIAL!!! I feel I wanted to believe it was ok!! I went against even the positive outcomes of a drop in my blood sugar after I bolussd w a syringe!! I could kick myself now. 

Fast forward to Saturday at 4pm & my BG was now over 450 despite it coming down to 273 with a virgin dose of injected insulin!! And at this point I had changed my infusion set several times only to find the canula bent on two occasions which totally pointed to my pump not detecting my sites not delivering the vorrect amount of insulin. This is the definition of a silent occlusion.
By Saturday afternoon unbeknownst to me I was in full blown DKA experiencing severe, unrelenting, continuous nausea & vomiting, plus EXCRUCIATING abdominal pain unlike any I had experienced in my life with long standing chronic pancreatitis. Never mind the mind numbing thirst and peeing up a storm. I ended up going to the ER & being admitted for management of my DKA. As a relatively new PWD, this was my first experience w DKA! I TRULY had no idea what was happening!!

The second episode happened along side of another medical problem but my ketones were only moderate despite the same nausea, vomiting and Abdominal pain.
After I got home from each admission, I swore to myself I would NEVER rely on a piece of equipment again for my day to day management. After only a couple days on injections and less then stellar average bg numbers, every time it was time to give myself a dose of insulin, I would reach for my waistband to retrieve my pump to bolus. It was then I realized, I’m a pump girl & despite my experiences I would always be a pump girl, although I would be a much more careful pump user!!! So the Monday morning I was home from the hospital, I was on the phone placing my order for a replacement pump. And now I’m glad I did not let the fear paralyze me.
This brings me to my questions…did I rely to complacently & completely unaware and in denial of the downfalls of relying on a machine to take care of me!!
And do I rely too much on my CGM to warn me of troublesome patterns?? Should I just go back to what I consider primitive methods of handling dealing w my blood sugars!!

I believe for me the answert to that is no!! I enjoy pump therapy and my Dexcom CGM have been a game changer for me in my day to day management!! But I can say I have been & will continue to be mindful of manmade technology & its  limitations, all the while taking steps to double check the pump & CGM’s math all along the way!! 
Right now, I’m still dealing with the stress of these two incidents & am being OBSSESSIVE about double checking my numbers & suggested doses just to be safe. But I’m hoping as time passes & I become more comfortable, yet not complacent w my D tech, that I can find a happy balance between using my D tech as well as using my God given brain to double check to make sure all is right in my D world!!

That being said, look what I added to my daily management…am I crazy!! YES!! But that’s  despite the point!! I’m looking to make use of what is available to me in an attempt to help me manage my BG, as long as I have a healthy dose of common sense along the way!!!

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