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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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!!

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Learned some new cool facts about T1D vs surgical T1D

Happy Saturday!! Hope you are enjoying your weekend!!

At a recent endo apt, I learned an interesting fact about glucagon production in T1D versus surgical T1D. Again, although I’m an RN, for the purpose of this blog I am not a diabetes professional and you should ask your T1D team for further info and confirmation of what is offered here. Now, with that out of the way, let me tell you what I learned…

I asked my doc about glucagon in the diabetes population. I had heard conflicting information regarding the different types of diabetes and the PWD’s ability to produce glucagon. In T2D, the person’s alpha cells that produce glucagon work ok in the beginning of the disease process. But as the disease progresses, her/his ability to produce glucagon is diminished.

In the straight up, immunodeficient T1D, again the alpha cells are able to produce glucagon, but when the beta cells which produce insulin are unable to do so, the alpha cells get confused. Medical science has not come up with the reasoning behind this yet, but we’re hoping they are able to do so at some point in the future! These confused alpha cells, produce some glucagon but are not able to get it where it needs to go in the event of a low.

In surgical T1D, there is no production of glucagon because the alpha cells have been removed along with the beta cells and the rest of the pancreas. I’m hoping to have a discussion with my transplant surgeon soon, so I can ask him if alpha cells are transplanted along with the beta cells during the auto (meaning your own cells so no immunosuppressant drugs are necessary) islet cell transplant that occurs in the type of surgery I had for chronic pancreatitis. I’m not sure if the purification process that currently is available can separate the alpha from the beta or if they just get transplanted together and we all hope for the best. Plus, I’d like to know if the alpha cells are as sturdy as the beta cells and do they survive the purification and transplanting process. I’ll get back to you when I know more on this point.

It’s important, if you are on insulin therapy to ask your doctor for a glucagon prescription and carry it with you at all times. It’s better to have it and not need it, than to need it and to be without. My endo didn’t offer it to me but after reading many articles on the DOC (Diabetes Online Community), I learned that I needed a script. My doc didn’t hesitate to give me one but it confuses me that we have to ask for it when, I believe, it should be offered to anyone on insulin therapy. That’s because, it is more likely to experience a low with insulin than other forms of treatment, so we should be prepared just in case.

There are instructions in the glucagon case on how to use it and there are many youtube.com videos detailing how to use it. as well as, an iPhone free glucagon app that is an excellent resource for friends with an iPhone. I have had glucagon get-togethers with friends and family with the purpose of explaining lows to those who love me and also, explain the glucagon and how it is used. I take expired glucagon kits and let friends and family practice with them. This goes a long way when and if there is ever a low that I can’t reverse by myself. Hopefully soon, as a result of all the closed loop system research going on, that a better form of glucagon than the one currently available will soon be developed and made available.

In my opinion, it doesn’t seem to matter if your T1D or T2D or a surgical T1D. The glucagon whether there or not, is not able to be used in the manner a normal functioning pancreas is able to provide. Therefor, we must supplement the glucagon if the low is incapacitating the PWD or treat the low before it gets that bad with immediate release forms of glucose. I just thought it was interesting to know what is actually happening in the different forms of diabetes, so I’m passing this along to you.

Remember, TEST!! DON’T GUESS!!!

 

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Book review: Shot: Staying Alive with Diabetes by Amy F. Ryan

I recently read a book that from the time I sat down and began to read, I couldn’t put it down! I ended up staying up way too late just to read as much as I could. The story was very compelling. It is not only the autobiography of Amy Ryan’s life but also details her new life with type 1 diabetes  having been misdiagnosed as type 2 due to her age at the time she sought the medical advice of her doctor. She was 29 years old and had been healthy up until this point but an unrelenting yeast infection was her presenting symptom. She writes of how her life was turned upside down trying to navigate the treatment plan she was given that didn’t seem to be working due to her misdiagnosis.

What I really like is that she is able to put into words the daily struggle to manage diabetes and to live life to its fullest despite all of the effort required to truly manage this disease. And, she doesn’t shy away from telling about the times she’s struggled with burnout.

As a young woman, Amy tackles the issues related to deciding how to administer the insulin that she needs to survive, including issues with intimacy and the insulin pump, what a successful pregnancy needs her to add to an already full management schedule every day. And, she’s not shy when she writes about her own emotional struggles and how to share that part of diabetes with those closest to her.

I thoroughly recommend this book, especially to young women and men who are diagnosed as adults with diabetes. And, although her story is about type 1 and what it entailed for her, I believe it pertains to any form of diabetes.

Recently, a close friend of mine had a number of questions about my daily life as compared to my life before my T1D diagnosis. I gave her a copy of Amy’s book for her to read. This friend had very limited knowledge of diabetes in general and we were able to discuss the book together and then my daily management tools I use to live my life as healthy as possible. It started the discussion for us, and I believe it can help others start the discussion with the people who care about them.

The book written by Amy F Ryan is, Shot: Staying Alive with Diabetes, published by Hudson Whitman, Excelsior College Press, Albany, NY, copy write 2013.

This review is my own. I have not been asked nor have I been paid to write this. I just love the book and wanted to share it with others who could gain something personal by reading it.

 

Remember…CHECK! DON’T GUESS!!

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