muddybrooks

My experiences post total pancreatectomy.

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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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.

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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.

 

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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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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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