muddybrooks

My experiences post total pancreatectomy.

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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Life Can & Will Change in an Instant

It’s been a hell of a week for me!!! Medically, I have been feeling good the last couple of weeks despite a brush w DKA a month ago. ( more about that to come in a near future post) was cruising along when life threw me a couple of curve balls. My extended family lost an aunt & an uncle while at the same time we celebrated my sister’s and her son’s birthdays. After my Aunt’s wake, which was a traditional Irish wake where we celebrated her life, I got home kinda late. I had to be up early to get to the funeral home again for the procession to the church and then the funeral Mass. So, just before the 11:00pm news broadcast, I decided I would take a shower before I went to bed. I’ve been having trouble sleeping and a shower relaxed me which heped me to fall asleep instead of just staring at the ceiling. Plus, I’m SO NOT a morning person and the thought of expending all that energy to take a shower in the morning was exhausting just thinking about it

As I finished up my shower, I tried to step over the tub wall but I must not have lifted my foot up high enough. My toes on my left foot caught the top of that wall and over I went!!! I fell with a loud thud onto the cold and very hard tile floor!!! I landed on my left shoulder which I was afraid I had broken. That would not have been good since I had a shoulder replacement a few years ago. After my shoulder hit the floor, my left hip landed next!!! As I appraised the effect the fall had had on my body, I realized I didn’t have much pain & I could move my left shoulder with only minor discomfort. I decided to stand up! As soon as I put some weight onto my right leg, I fell back onto the tile again!! I made repeated attempts to get up but my right hip kept giving out on me and it would not tolerate any kind of weight put on it. In january of 2015, I had to have my right hip replacement redone because I had developed osteomyelitis in that joint, so I was afraid I had broken &/or shattered my right hip!!

My husband had already gone to bed and was asleep but the noise from me falling woke him. He immediately called out to me asking if I was ok. Of course, I said I was fine but after I realized I wasn’t going to make it out of this bathroom without his help, I rephrased my reply and asked him if he could help me get to our bed. I was deluded into thinking this pain was just from a bruise and it would be better in the morning after some ice & Advil. It’s amazing what a little denial will do.

Fast forward to 2:15am, my hip pain was not letting up. Not only that but the pain was getting worse as I laid there in bed. My other half asked me how I felt and I couldn’t lie!! We decided to call 911 and get an ambulance because I was not going to be able to climb into my hubby’s Tahoe to get to the local hospital. We woke our 25 year old son who still lives at home while he’s working and saving some money & together, father and son carried me downstairs while I was seated on a chair. EMT’s and paramedics carry patients down the stairs in a dwelling by what’s called a “stair chair” & we both had worked as EMT’s for a number of years, so It seemed like the safest and least painful way to get me downstairs while we waited for the ambulance.

Long story short, my right hip was ok!! Not fractures or dislocations but my pelvis was another story. I fractured it in two places and was experiencing massive muscle spasms in my pelvis and thigh area. This wasn’t good!!! I spent five days inpatient at the local hospital and came home walking with crutches three days ago. Needless to say, I didn’t make it to either funeral. But at least I showed up at my aunt’s wake!!

I was in too much pain to throw a pity party for myself the first couple of days after I fell. I was completely overwhelmed trying to manage my ostomy, my insulin pump & still needing to self cath to have much time to feel sorry for myself!! As was my usual issue, my ostomy pouching system failed and exploded the next morning as I was being admitted to the orthopedic floor. And with all the excitement, my blood sugars were thru the roof not responding very well to my correctikn boluses. I did get to do some Diabetes Awareness and education because I had student nurses every day and they were fascinated by my insulin pump and especially my Dexcom G5!! And, when Mr Sandy got there, he blew their minds even further and showed them that not only were my glucose levels displayed on my iPhone but that they were displayed on his iPhone as well!! Even the floor nurses were spell bound by all my D tech!!!

I was relieved to be able to get back home after only a couple of days to be reunited with Indy, my black miniature poodle!! (Of course, as well as my hubby  and son!!) But we soon realized that he was deathly afraid of my crutches!! Even if the were just resting on the wall nearest to me. Much to my broken heart’s dismay, Indy made it a point to stay away from me!!!  I am soooo bummed!!! Even though I’m not using the crutches much for short walks in the house, he still seems weary of me, although earlier tonight he did come to me and sat in my lap for a little while. So, maybe he’s warming up to me now that those scary crutches aren’t being used as much. I still use the crutches when I go out and there will be a decent amount of walking. But although I’m making miraculous progress, I still cannot turn or pivot on my right leg. I can only gingerly walk straight ahead. Driving should be a hoot!!!!

I definitely had the watchful eye of a guardian angel on me the night I fell because my injury could have very certainly been much worse!! And I have AMAZING family and friends who kept my spirits up and I didn’t go a day without someone there to keep me company as I tried to get thru the pain and spasms.

I’m sorry this post doesn’t have much of a D theme but this just helps me to remember that I am NOT my diabetes and my diabetes does not define me. Unfortunately though, I was planning on traveling to Chicago this coming weekend for the Diabetes Sisters Leadership Institute conference. I’m really bummed to not be going but I have to remember that I’m already registered for the February Uncon 2017 followed by another Uncon and Diabetes Sisters Weekend for Women coming up in October of 2017. So there will be other diabetes related trips to go to. Unrelated to my diabetes travel, I have a girl’s trip to Canada after Turkey day with two of my best sewing buddies that I HAVE to be completely healed and mobile for.
Remember to check, NOT guess!!!
Sandy

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How Time Flies!!!

It has been two days plus an entire year since I last wrote a post! I can’t believe a whole 367 days has passed!! As my last post reads, I don’t have a good excuse for being away. Life took over and kept me away, so it’s been an eventful year both personally and medically. Over the next couple of posts, I’ll attempt to fill you in on the goings on in my life, so I’ll start with my recent weekend which was AMAZING!!!

A couple of months ago, I saw a Facebook post from Christel Marchand Aprigliano , an AMAZING human being who is as vertically challenged as I am and whom I am actually almost an inch taller than!! (I felt VERY tall for the weekend!) at http://diabetesunconference.com, advertising the upcoming Diabetes Unconference in Atlantic City September 9, 10 & 11. I was at a particularly low point that day, so, I decided, a peer support conference was exactly what I needed at that time in my life. The write up describing  what exactly an “unconference” was intrigued me. So, I registered and paid the fee to be able to attend. I didn’t even look at the calendar to see if I had anything going on that weekend or in September in general. I just decided I was going to go, come Hell or high water!!!!

Fast forward to Labor Day weekend 2016…by then I had hotel accomodations and my flights booked but I was starting to freak out!! Who did I think I was going alone to a diabetes “unconference” where I only knew a handful of people & by that I mean, I could count on one hand the people I knew and still have fingers left over!! And, those that I knew I had only met once or twice before in person. But many of the attendees I had communicated with online through the DOC (Diabetes Online Community) and social media, so I sort of knew them although we’d never met face to face. I wasn’t sure if that kind of contact counted as knowing those people. I was totally freaked!!! I was traveling all the way to southern New Jersey by myself hoping that I would connect with a few folks during the weekend & hoping to have a good enough time to stay  the extra day I had planned to hang with my new friends. Who was I kidding??? This had the potential to be a complete disaster!!

I arrived on Thursday, September 8. The conference didn’t officially start until registration on Friday at 2pm. I wandered around Thursday while I was waiting for my hotel room to be ready for me to occupy. I felt COMPLETELY out of place!! I walked up and down the Boardwalk trying to find something to do to occupy my time but I was afraid to stray too far from the hotel so that I didn’t get too lost and not be able to find my way back. When I say I felt out of place, I mean I stuck out like a sore thumb amongst lots of people dressed for a day at the beach or in clothing to match the hot & humid weather, while I was in black yoga pants & a long sleeved button down shirt sweating profusely!! (It was chilly in Boston the morning I left.) I didn’t expect the stifling heat and humidity that greeted me at the  Philadelphia Airport. You could say I was a tad overdressed for the beach!! I bought an ice cream, found a bench and parked myself there until my room was ready, second guessing my decision to come here at all. Luckily, my room was ready pretty quickly, so I retreated to my room and tried to decide if I should just admit defeat and get a flight home now if I could get a shuttle to the airport.

After being in my room for a little bit, I had talked myself into just turning around and heading home. But, WAIT ONE MINUTE!!!!!! WTH!!!!! I’m not a quitter!!! I don’t back down from a challenge, yet here I am doing EXACTLY that!!! I hadn’t even given the weekend, never mind the conference a chance to start before I threw in my white towel. I had been TOTALLY looking forward to this unconference for months!!! Knock it off, Ms Brooks!!! U can do this!!! I took a deep breath & decided to throw caution to the wind and give this weekend and conference a chance. So, I checked into the Facebook page our attendees had been using for months to chat amongst ourselves and blindly asked what was up for dinner. I successfully managed to find a friend I had met two years prior and whom I had been in contact with online & her husband, as well as a couple of other people who’s names I recognized from Facebook but had never actually met. We all headed to the restaurant down the Boardwalk where other attendees were. Then the magic began…

Over the weekend, I met LOTS of other PWD (persons with diabetes) and many PLU (People who love us) whom all left an indelible mark on my heart. I’m talking amazing people whom welcomed me into the “Tribe” with open arms. The actual sessions that I attended were AMAZING!!! This was a safe place to open up about living with and trying to manage Diabetes no matter the type. And open up we did!! Everyone who attended the Unconference had agreed to a social media blackout and cell phone free zone while we were in session. we all also agreed that what happened in Atlantic City, stayed in Atlantic City. We wanted to preserve this safe space we had all created and was Christel’s vision, so that during this Unconferenc and future Unconferences, the people attending would be able to experience that same safe zone.

I felt that the deeper the conversations went and the more vulnerable we were all able to be was what enabled us to really connect to the others in that room. Everyone in the room either had a nonfunctioning pancreas or loved someone who did, so when someone would speak about an issue she or he was having, the people in that room “got it”!! I can’t speak to the actual conversations that took place but suffice it to say we all experienced something very special in Atlantic City, just like the Unconferences before ours.

We weren’t always in sessions, Medtronics and Dexcom each sponsored an evening cocktail like party with food and drinks where we were able to continue many of the conversations that had taken place earlier in the day. It was at these events we could sit one on one with somebody or in a small group and either talk about superficial topics or get down and dirty once again hitting on personal Diabetes experiences. It was also a chance to get to know other PWD’s & PLU’s on a more personal level. I thoroughly enjoyed these evening activities and was able to really connect with a few of my favorite people!

Before we knew it, it was Sunday and the Unconcference was coming to a close. We were all sad to be leaving these amazing people we had gotten to know and love. The majority of people left Sunday afternoon and evening but a small group of us were staying until the next day, so we got to hang out a little bit more but then Monday, it was our turn to say our last goodbyes until the next Diabetes Unconference in Las Vegas, February, 2017 when we would meet again.

My time with all my diabetes buddies energized me in ways I had not expected!! I was thinking that maybe I should get back to writing this blog in the hopes of touching even just one person! But I had become very disappointed with my blog the previous year and questioned why write it at all. I’ve felt for a long time since my pancreatectomy and failed islet cell transplant that I really didn’t belong to the Diabetes community. After all, people who develop any type of diabetes didn’t chose to have it. It just happened for a variety of reasons. But I had deluded myself into thinking I had kind of chosen to have diabetes when I chose to have my pancreas removed.  But talking with my D friends, they helped me see that I didn’t chose diabetes or even to have my pancreas removed. I was forced by my long standing chronic pancreatitis to have the surgery that resulted in my surgical type 1 diabetes. I then realized that this feeling of not belonging was what drove my feeling out of place when I arrived in New Jersey. I’m glad I stayed because my weekend there was simply AMAZING!!!

The following days after I got home I began researching some diabetes books written and suggested by some of the people at the Unconference & I started to read one in particular by Shawn Shepheard, called, “Life Is Sweet, Surviving Diabetes and a Whole Lot of Other Crazy Stuff.”  Shawn’s book led me to http://sugarfreeshawn.com where I binge watched a bunch of his videos. Between the Diabetes Unconference and Shawn’s inspiring words, I definitively decided to get back to my blog and tell my story with the hopes that one person would find it and not feel alone.

So, here I am folks!!! I’m back & I hope you have enjoyed reading this post and that you will enjoy reading posts to come in the future. Until then…Check!! Don’t Guess!!

 

Sandy

 

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I’ve Returned!!

I apologize for my long absence and unfortunately I don’t have a good excuse. Life happened and family stuff took priority. But I really missed being away and hope to say that it will never happen again. But I can’t promise that otherwise I’d be stretching the truth so far it would SNAP!!!!  But I’m excited to be back and LOTS has happened both in the D Tech World and my personal world. So let’s get started!!!!!

As many of u r aware, Dexcom G4 came out with their Share Technology incorporating a smart phone into Continuous Glucose Monitoring capability!!! I think this is so exciting!!! The NightScout capability has been out for a while and is equally amazing but for people like me who don’t possess the capabilities to set up the NightScout, despite the people involved offering all the help one could ever want (I still couldn’t do it). Dexcom Share has brought a new level of BG monitoring in a real-time fashion.

For care givers of children and seniors, I think this is a level of monitoring that wasn’t available to a wide base of people until now. For those who are not familiar w Dexcom Share, it is a CGM system that allows the Dexcom sensor wearer thru a cell phone APP, now available for both iPhone & Android, that thru low energy Bluetooth capability which sends the BG info in real time from the sensor to the Dexcom receiver to the PWD’s cellphone and then to the infamous “CLOUD” which then allows the “followers” the PWD has invited to receive the BG info on their cellphone after they have obtained the followers cellphone app.

I think this is HUGE!!! I upgraded to Dexcom Share even though I only have 2 people following me. I’m very independent in my BG management, like many of u, but I have to say, having someone know my BG at any point in time has kept me on my toes!! Like any human being, I tend to take the easy way out of anything if given the choice…OK, I’ll admit it!!!! I get LAZY at times!!! But w someone aware of what my numbers are doing, I’m more likely to pre-bolus before a snack that I would if no one was looking!! I’d still bolus but the allure of my sweet treat would make me quickly devour it without waiting for my insulin to start working. But now knowing someone is looking at points thruout the day, I tend to pre-bolus and wait for the dip in my CGM before I actually start eating my sweet indulgence!!! So even though I’m not a caregiver of a child, it’s still a great advancement to my day to day management.

And very exciting news for Dexcom as well is that they have received FDA approval for the G5 Dexcom CGM which eliminates the need for the receiver between the sensor and the cellphone. This advancement takes the sesor reading thru Bluetooth low energy again right to the PWD’s phone and then it goes to the “CLOUD” again and then out to the chosen followers. Very big news!!!!! And Dexcom was surprised because they got approval much more quickly than expected As a result Dexcom is not ready to ship the new G5 yet but has stated they’re hoping to be shipping by the end of September/beginning of October. If u purchased ur G4 in August 2015, u’ll be able to get a free upgrade, but the rest of us will either have to wait until the next end of warranty date to upgrade or purchase out of pocket. I’m not aware what the out of pocket cost would be. I haven’t seen that published anywhere. Stay tuned!!!!

And,on the FDA approval front, Tandem T Slim received FDA approval for integration of the Dexcom G4 CGM. Although, I just spoke to a Tandem rep and the T Flex is not included in this approval. But stay tuned!!!!

OK, that’s it for Diabetes related Breaking News!!!! I’ll end this here but I’m looking forward to my next posting which will outline my attendance at this August’s American Diabetes Educators Association”s 2015 conference in New Orleans which Was AWESOME and VERY EXCITING.

As always,     CHECK, Don’t Guess!!! Have a GREAT Wednesday!!!

4 Comments »

I think I’m definaitely an IDIOT!! (caps intended!!)

I like to think I’m a reasonably intelligent woman or at least I seem to learn quickly. But either I’m losing IQ points since having turned 50, or I’m just an IDIOT!!!

Now, I’m almost 2 yrs into my T1 dance & as u know, I’ve really tried to do my research to understand my new normal, but I seriously made a HUGE misstep and I did it twice!!

I’ll explain… I’m trying to incorporate a daily after dinner walk in an attempt to control my post-prandial highs. Great in theory!!Usually, when I go for a walk whenever, I check a BG and also, carry my meter and stuff and enough Smarties for at least 2 low treatments. Key word here is usually!! I didn’t check my BG, nor did I carry “my kit” of usual suspects this time!!

Luckily, my new walking pattern is after a meal & I do pretreat my insulin at least 10 mins before my meals. So, my BG was likely higher from the meal but I really had no idea. I’m VERY lucky that I didn’t experience a low but I’m angry w myself for “forgetting” to do the usual precautions I normally take. It was really irresponsible!!!

Now, the reason for the capitalized IDIOT!!! Unbelievably, I DID IT AGAIN!!! And, this time I wasn’t so lucky!!! I had a low that produced the “dumb” symptoms I say that I experience. I was walking w a friend, but I couldn’t verbalize that I was low and without my “kit”. She asked me if I was ok but all I could say was, “yah.” So, we parted ways and I very shakily continued the block to my house.

I’m fine but I guess what I’m trying to say is don’t do what I did, TWICE!!! Please, please, please… Take a minute before u go for ur exercise or just running out the door to do an errand & make sure u have what u need to be safe with u!!!!

We all matter!! & I’m selfish & I want u around to read my silly blog!! Thanks for that by the way!!!

Remember, CHECK!!! Don’t guess!!!

And Happy Thanksgiving to everyone!!!
Try an after meal or between courses walk on turkey day, but please bring ur stuff!! Learn from my mistakes!!! I know!!! I’m an IDIOT!!! Don’t be like me!!

2 Comments »

JDRF Walk: Boston 2014

I’m very excited to be participating in this year’s JDRF Walk here in Boston!!! I’ve joined a team from Diabetes Sisters. I have found a Boston branch of the group of Diabetes Sisters & we’re walking together. I’m excited to be a part of it this year!

Speaking of Diabetes Sisters,  when I found them on Glu, I was interested in joining a Boston chapter if there was one. Low and behold, there is and not only that but the meet in my home town! I had to go and meet all the girls that are already a part of the group. For anyone in the Boston and surrounding communities, we meet the third Wednesday of every month at the Braintree Panera.

The women are lovely and we all have T1D, which is purely by coincidence. My first evening at a meeting, I immediately found my place in the group and fit right in. I’m the T1D newbie in the group and, not surprisingly for anyone that knows me, I asked all those burning questions only another PWD can understand, like “Is it normal to constantly be thinking of carbs?”. I received some sage advice from these girls that I really needed to hear. I just hope one day, I can be the one helping someone new to this game. I’ve gone to two meeting so far and I’m loving it!! it’s really great to be around people who get it!!

We got our T-shirts last week for the JDRF walk this Saturday which made it more real that I’m going to be participating. I hate to admit that I’m a little nervous about the walk, particularly finding everyone at the Hatchshell in Boston!! If what I’m hearing is correct, there will be thousands of walkers & I’m fearful, I’ll never find the members of my support group and Diabetes Sisters in general. I have an email out to our fearless leader to find out where we’re supposed to meet. I shouldn’t be nervous though. If Saturday is anything like the people on the DOC, I’ll meet more friends I never knew before just by being there! Wish me luck on my first walk. I’ll write a post summarizing the day next week.

 

T2D Update:

My friend with T2D has been started on twice a day metformin instead of just once a day and it seems to be working a decent bit, although, he hasn’t continued to check postprandial BG’s. I’ve asked him to pick a meal and to check pre and post meal BG so we can see if the metformin is making a difference there.

Also, my endo’s office sponsors a class for t2D that is run similar to a board game to keep the participants interest and to keep them engaged. Sounds like fun to me. If this class is anything like the T1D class I went to there, it will be awesome! I called my CDE and asked her if my friend and I could attend. Of course, I would be there as his support person. Plus, with these things, it’s better to bring a friend because between the two of us maybe we’ll pick up on things the other didn’t catch. So, I got the go ahead for us to participate, although, I have to mention, his PCP was less than enthusiastic. This doc told him that the classes would just confuse him, so he would prefer my friend not go. Luckily, my friend told his PCP that the class is an ADA certified self management course & that he’s taking part to expand his knowledge, thereby increasing the likelihood he’ll be more successful in his diabetes management. My friend is an intelligent guy. If something is confusing, we can ask for clarification from the presenters. DUH!!!! His PCP relented and wrote the referral. Although, he did so begrudgingly, saying, if you’d just lose the weight you wouldn’t need the classes. My opinion is whether he losses the weight or not, he’s still a T2D, so he’d be smart to learn as much as possible about the disease and it will make it easier for him to keep the weight off when he does lose it by having learned better portion control and other management tactics. Stay tunes for the continuing saga!!

 

 

2 Comments »

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