muddybrooks

My experiences post total pancreatectomy.

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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