Emotional Values

I’ve been reading a lot in many areas of my life these days about assigning emotional values to object, ideas…you name it, and the whys and what have yous of why we do this. I know I do it. For us married girls, many of us preserve our wedding gowns. Why?? We’re not going to wear it again and if the occasion to need another white gown arises, we are not going to want to wear it again for many reasons. We have assigned emotional value to the dress and all it represents and reminds us of, good or bad.

Now that our one and only child has left the nest, we’re trying to pair down, weed out and just generally cut down on clutter, but I can’t seem to bear the thought of getting rid of my wedding dress. It reminds me of a happy time. My Dad was alive and able to walk me down the aisle, a small number of close friends and family attended the wedding, stood by us as we exchanged vows & not the least of which, I married an incredible man who, today, drives me crazy because he can’t seem to find the hamper when he takes his socks off every night!! (But I digress.) I keep saying I’m going to fussy cut the dress and take the pretty parts and fashion a pillow for our bed and then throw away the rest. But I keep procrastinating because of the emotional value I have assigned to this dress.

Another area of my life fraught with assigning emotional value to things is in my life with surgical type 1 diabetes (T1D). [Just as an aside, I technically have type 3C diabetes which is diabetes caused by pancreatic disease but even that isn’t a true representation of my surgical diabetes. My endo and I have decided to call my type of diabetes as it was formally known, surgical T1D. No one knows what it is or has even heard of type 3C. Plus, I like to call those close to me and sharing in my life with D as Type 3’s, as it is more commonly know. Again, digressing]

Take for instance any number that evaluates my diabetes: blood glucose values (BG’s), glycosolated hemoglobin (A1C) , my triglycerides, My HDL & LDL (high & low density lipoproteins), etc. I think you get the jist. But these all help explain how my diabetes is being managed overall. (HA!!! Like you can manage this beast!!) Since I was diagnosed with D (diabetes), I have learned that the proper way to look and think about these numbers is as a scientist collecting data (Thank you, Ginger Veira). They’re not good or bad but instead just in range or out of range & give us information to make a decision for treatment. And as the great Stephen Ponder, MD (author of Sugar Surfing) likes to say, sometimes no action is a treatment decision.

OK, let’s think about this for a minute. I’m a former cardiac surgical ICU RN and every shift I took in data from a client and made treatment decision based on these numbers. But we spoke about these values as good or bad. Not that the client experiencing them was good or bad but these vital data points were good if they indicated things were progressing as desired. Or they were bad because the current treatment plan wasn’t working.  Again, not meaning the client was good or bad. (most of the time my clients were heavily sedated and intubated so how could (s)he be either.)

So, if in my career as an ICU nurse I could call something good/bad and not assign emotional value but when it comes to my own D care, I’m all about the blame and good/bad. In my head, the rational part, I know these BG numbers in particular are neither good or bad. So, why when I wake up in the morning do I smile when I check my BG and it’s in range or close to it. But, if I wake up out of range, it messes with my head and I’m grouchy and tough to deal with. (I actually can think of a better word to describe what my mood becomes when I’m out of range). I feel like I’ve let myself and others down when I’m high or low because that means whatever I’ve been doing to treat my diabetes in the previous hours was unsuccessful. This makes me sad because everything I’ve been doing the past couple of hours has been a result of me TRYING MY BEST!! And this early morning BG is out of range and my best wasn’t good enough to put it in range. It makes me think of myself as bad. So, who wouldn’t be bummed??

I know, I know!!! I shouldn’t think of this number as good or bad but I do!!!! It’s the only objective measure I have of how my efforts are effectively maintaining my blood sugar. As you know, I’ve been dancing with D for just over 5 years, so one would think I’d have a handle on this. Frequently though (if the recent past is any indicator) I SUCK at staying in range. And, some days it seems nothing I do will bring me back in range for any length of time.

Another reason my emotions are tied into these  numbers is I know that I’m going to be judged for these results by many different people. Those close to me know I try REALLY hard at maintaining good…ARGHHHH, I mean in range numbers.  But the general world will judge me by my out of range numbers, anyone from my medical team, “What have you been doing that your this high/low”, and by acquaintances, “Isn’t that really bad?!! with a hint of disgust in her/his tone. I’m sure everyone can tell a story of being judged by their BG reading, or God forbid, the ALMIGHTY A1C!!!!

Heck, I even judge myself and probably more harshly than anyone else could! “OMG!!! What did I eat that made me go so high? Damn, I Swagged (Scientific Wild Ass Guessed) my dinner & now I’m low!! Why did I do that?” “I can’t even got this right?” Then I make promises to myself that I’m going to start looking up carbohydrate values and going strictly by the book. (Which frequently doesn’t work any better than SWAGGING!!!)

Even though I am judging myself along with the world, I’m learning to distance myself a little (stressing the word little) from my BG’s & A1C’s. I’m trying really hard to see these values as just information on my Dexcom graph that help me in my decision making process. It’s rarer now to get as worked up about an out of range number as I used to. (Believe me though, there are days where the numbers hit me harder.) I’m trying not to let a high or low when I check with my meter or glance at my CGM dictate my mood for the day. I try to take it into consideration as just another data point to be analyzed and overall, I think I’m getting better!! I’m certainly not perfect but I’m being kinder to myself when I’m out of range. And who doesn’t need an extra bit of kindness?? Maybe I’m stressed, maybe I need to walk the dog and let the exercise shave off some numbers, maybe I’m not considering that the prednisone I’m taking for a different issues is screwing with my BG. Any number of things could be going on that are out of my control  (Like the wind blew different today than yesterday) and other than accept the number, make a treatment decision, act on it and, finally, move on, there’s nothing more I can do. I don’t know about you, but I certainly have better things to do in my life than beat myself up because I have a finicky disease that isn’t the same from individual to individual, meal to meal, nor day to day.

I’m known among friends and family for saying, “It’s the little things in life that excite me!” So, I’m trying to take every little in range (or close to it) BG and celebrate it as a little D victory. I feel it’s important to celebrate the victories no matter how small and to also learn from the not so victorious moments, so we can grow and learn.

Does anyone else struggle with this issue? Does it get any easier to not beat myself up as I live longer with this disease? I’d love you to share your thoughts!!

Thanks for taking precious time out out of your day to read my post. I really appreciate it!!

Remember, Check. Don’t Guess!!!

Sandy

 

My D Tech Addictions!

This week’s adventures in my Diabetes Dance has made me consider how blessed I am with my ability to have access to and utilize the current, most up-to-date diabetes technology. As I have spoken about in the past and have shared here, Facebook, Twitter, Instagram & with many friends and people I know, I’m extraordinarily blessed to have the private insurance coverage I have, and therefore the ability to use the new, technologically advanced Tandem T Slim X2 insulin pump along with a pump integrated with my state of the art (at the moment until the next iteration is approved by the FDA) Dexcom G5 Mobile CGM (continuous glucose monitor). I also have, what I believe, to be a great glucose meter, the Verio IQ, as well as the sufficient amount of strips needed. But please know that not a day goes by that I take my access to these devices for granted!!! Nor does it slip my mind that I have the amount of insulin in my frig for my needs when many in this world of ours do NOT have that great fortune. But that’s a discussion for another post at another time.

I preface my remarks about what I do have because I’ve come to realize my dependency on them. But I’m a little thick headed, so it took going without for me to realize my dependency. Just a few days ago, I had a mishap with my insulin pump in where it became unusable after being submerged in a liquid accidentally. Of course, it happened at 3:39AM. I can remember EXACTLY what time because as I came to realize it was no longer usable, I just happened to look at the clock as the thought crossed my mind that maybe it was early/late enough to call and get a replacement. Alas, that was not the case.

I was awake enough, just barely, to realize I would need the back up plan I had in place just in case this sort of thing happened.(Luckily, I’ve not had to use my back up plan in many years!!) I was thinking at the earliest it would be 36 hours or so until a replacement pump could get to me. I took a dose of Lantus (long acting insulin) so I’d be covered, checked my BG and gave a correction of Novolog (short acting insulin), by SWAG’ing (scientific wild a$$ guessing, many thanks to Kerri Sparling for developing the term) & started to mourn the loss of my beloved and bedazzled by Pump Peelz (It was pink of course), T Slim X2 insulin pump. Unfortunately there was nothing else I could do but go back to bed and wait for normal business hours to come. (Why does this sort of thing ALWAYS happen outside of normal business hours??)

Of course, there was no sleep to be had because I was freaked out NOT to be attached. I know being attached 24/7 freaks some people out but not me. My lifeline and access to the medicine that keeps me alive had been discontinued. I knew I had Lantus or long acting insulin on board and it was a dose my endocrinologist (diabetes specialist) & I had calculated, but what if we were wrong!!?? We probably weren’t but there’s always that chance…and so the ruminating of all the “what ifs” started, so no sleep was had by me.

Fast forward to the next morning…I called Tandem and they couldn’t have been nicer nor more supportive. And, so my new replacement T Slim X2 was on it’s way & would arrive the next day!!!! Woo Hoo!!!! Success!!!! Now what???? I needed breakfast, hence I needed insulin to cover said breakfast. OK, how do I figure out how much I need??? The dilemma at hand was that my endo’s office was still closed and, silly me, I had let my insulin pump figure out my mealtime dosage for the past 5 years!! How’s that calculation go again??? I DIDN’T HAVE A CLUE !!!!! Did I really need breakfast right now?? Nope, said my math delinquent brain. Now comes the first thought of, how could I not remember how to dose myself with insulin for the amount of carbs I was going to consume??? Answer: I had become dependent on my pump wizardry to figure it out!!! But I thought, surely I’m smart enough to figure this out on my own??!! Again, NOPE!!!

This wouldn’t be the first time that day I delayed a meal due to not being able to figure out how much insulin I needed. Do you know how much that embarrasses me?? I’m an RN for God’s sake!! A former surgical ICU RN at that!!!! How could I not know this??!!!!

I called and got the info I needed from my CDE, angel that she is, but I still felt like a dope that I couldn’t figure it out on my own. This whole scenario gave me a greater appreciation for all you MDI (multiple daily injections) users out there. I know I’m a nurse but a mathematician I am not!! OK, a fifth grader can do math better than I to be honest!! But, the rest of my day & meals were fraught with fear that even though I was using a calculator, I was afraid of getting the dose of a very scary and deadly hormone (if dosed incorrectly) correct!!!!

Now, you would think that those happenings would be the end of my stressful day, would you not??? HAHAHAHAHAHA!!!! Not even close. At 2:32AM the next morning, hours before my new pump would arrive, my CGM transmitter battery died unannounced!!!! SERIOUSLY!!!! Were the diabetes gods angry with me??? I couldn’t even guess what I had done to anger the D gods!!!! So, again, I had to wait until business hours that following morning to call for a new transmitter. Or so I thought… (Sleep??? What’s that??)

Long boring story later (Like this isn’t boring enough!!) I can’t get a new transmitter until April 1st at the earliest. As I contemplated my D tech failures and inability to have them at my disposal, I came to the realization…I’m addicted to my D tech!!!! And, I use Dexcom Share with hubby!!! He and I have come to depend on having that data at our fingertips and now we were going to have to wait until April 1st to have that again…unless I paid $599.99 out of pocket!!! I may be blessed in many ways but financially affording that is not one of them!!

So, I put my thinking cap on & suddenly it popped into my brain…Freestyle Libre!!! Maybe I could get one??? I called my AWESOME private medical insurance and due to circumstances, it would be covered if the proper paperwork is submitted by endo. Next call, endo. Yup!! He would submit the paperwork!!! Have I mentioned how blessed I am with my medical technology needs?? Not to mention my endo!!!!

My replacement pump is now up and running and may MDI users everywhere be acknowledged & given props for their math skills and patience. And I am back to finger sticks 10-12 times a day as I was in the pre-CGM days. And…I’m in paperwork limbo pending approval based on my endo’s recommendations in getting a Libre. If it doesn’t go through, it will be tough but I’ll make it to April 1st. I’ve done it before; I can do it again, albeit unhappily!!! HAHA!!!

I guess the moral of my story isn’t clear. Is it ok to become so dependent on D tech to the point I am?? Probably not. These past couple of days has definitely given me time to reflect on my diabetes journey. (I have certainly made a Word document detailing how to figure out MDI doses should there be a “next” time.) But I have come to realize more intimately how unbelievably fortunate we all are who use these devices to save our lives every day!!

Thanks for taking time out of your day to read my story.

And as always…CHECK!!!! DON’T GUESS!!!!

Until next time!!

 

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!!

 

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

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!!!

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.

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)

Blog Week Day #2- The cost of living with a chronic illness.

 

I have to first state that I am BLESSED beyond all measure when it comes to the financial cost of my disease. I have EXCELLENT health insurance and have NEVER had to decide to either put food on the table or buy my meds!! There have been times before the ACA came into being that my insurance stopped covering me when I had reached a certain dollar amount determined by the guys and gals in the suits. Like when I went to refill a med on a Friday night after 6pm when the pharmacist announces to me with several strangers looking on that I no longer have coverage for the medication. It has been denied. I didn’t have the kind of money they wanted for just that one medication, so I left empty handed wondering how I was gonna make it thru the weekend without that med I had been taking  chronically and  had been covered for years. But I got through that episode. I’m lucky and privileged and I’m VERY thankful.

But there are other costs of living with a chronic illness besides financial. I have a couple of chronic illnesses that I deal with besides T1D and I have come to know frustration and disappointment intimately. I could fill an ocean with the tears I have shed trying to get through a night when symptoms flare. I have come to know loneliness on a level I never thought attainable. I’ve been in the hospital all alone trying to advocate for myself when no one will listen. But I chose not to dwell on the negative. I chose to focus on the blessings that I have received as a result of living with chronic illness.

I have tried to advocate for others whom may not have the health coverage I do. I call and write my congress people and senators and even the Governor to try to bring awareness to the unfair pricing that has taken over the insulin market. I participate in supply sharing groups to assist anyone who may need something that I have extra of. I try in my own little corner of the world to make a difference.

Like I stated yesterday, I have done things and met amazing individuals both in person and online that I never would have imagined doing but my T1D has brought these experiences into my life. So, for right now…today, I am thriving despite dealing with the inevitable anger and frustration that is all too common with any incurable chronic illness.

8th Annual Diabetes Blog Week, Day #1

Today begins the 8th annual Diabetes Blog week. I have participated once before two years ago & I’m looking forward to participating again this year.

Here goes…

Many things have happened as a result of my surgical type one diagnosis, but not all of it has been negative. Does Diabetes SUCK????? ABSOLUTELY!!!! But I have experienced many positive outcomes as a result of my disease. I am more resilient than I ever would have believed!! I advocate for myself, not just medically, but in every facet of my life. But most especially I have become a traveler. Normally, my life is spent in the Boston area with a few excursions here and there to northern New England, but with this new diagnosis and way of life,  I have found a passion to increase awareness and try to teach anyone willing to listen the basic ins and outs of the many forms of diabetes.

As a result, I have had to increase my working knowledge of the disease in its many forms and to do this, I have traveled to a few INCREDIBLE conferences. My first after diagnosis was Friends For Life. If you haven’t been to this AMAZING conference, I would highly recommend you check it out!! It’s put on by the Children With Diabetes organization and they have tracks for both the children touched by diabetes, patients, as well as siblings and friends, and adults because children with diabetes grow up to be adults with diabetes. It was at this conference I came to know the feeling of being in a room with many people who “Get it”, that understand what it’s like to live with diabetes day in and day out. I’ve never felt so included by a group of people in my life. This NEVER would have happened without me living with D.

In 2015, a nursing friend and I traveled to New Orleans for the AADE , the American Association of Diabetes Educators conference. At first I was a little intimidated going to this conference because unlike my friend, I was not a Certified Diabetes Educator (CDE). I was just a plain ole Registered Nurse. But the conference had much to offer me in both my role as an RN and as a person with diabetes (PWD).

I guess what I’m trying to say without boring you to death with all the details of every conference I’ve attended is that I NEVER would have attended these amazing educational opportunities if I had not had my pancreas removed and became a PWD. I also have met some AMAZING  people since my diagnosis, both with and without diabetes and the people that live with this disease, both the patients as well as their loved ones, have taught me the most about how to live with the uncertainties of every day life with D. Nursing school and my career helped lay the foundation of the working knowledge of my disease. But the people I have met along the way have helped shape that foundation into a way of life that I consider to be successful for me.

I’m blessed in ways I never would have believed before my surgery & I’ve come to know that even though living with D SUCKS big time, there are many hidden blessings that come my way every day and I would do nothing to change that.

 

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!!!!!