muddybrooks

My experiences post total pancreatectomy.

Hospitalization used as an opportunity to complete basal testing.

Every now and then, my “new normal”, the results of having had a total pancreatectomy, rises up and makes themselves the center of my attention. I occasionally experience significant abdominal pain, nausea and vomiting, but after a few days inpatient, my symptoms subside & I can resume my daily life activities in my own home. I also need to use jejunostomy tube feeding (to supplement what I am able to eat by mouth) every night. When I’m having a flare of my worst symptoms, I cannot infuse my tube feeding nor can I eat anything orally. So, this usually requires that I get admitted to my local teaching hospital for what I call a “tune up”. This means I get IV fluids and medications to alleviate my symptoms until they back off and let me resume my life.

As one can imagine, I dislike being in the hospital. The smells, becoming dependent on the nurse of the day for all your care and for her/him to communicate for you to the doctor. And, in today’s medical world, I’m never admitted to my own doctor because they now have what’s called a hospitalist whose job it is to care for folks like me in the hospital. They don’t see people outpatient in an office because their office is the hospital floors. Kind of like the TV character, House, MD. So, not only am I feeling like crap, I then have to relay my story to this new person whom I don’t know and she/he doesn’t know me AT ALL. So that fact lends itself to all kinds of anxiety, like, will she/he really understand what is going on with me. And, usually 9 times out of 10, the hospitalist tries to reinvent the wheel, meaning I have to repeat medications I’ve already tried because this new doctor thinks his way will be more successful than the last doctor’s way. And I have had to repeat diagnostic testing more times than I can count because if you tick off a doctor by telling her/him no, that brings up a whole set of problems I don’t have the time nor the inclination to get into. That’s a whole other topic to post about.  Suffice it to say, I try to play nice with the new hospitalist no matter how much of an a$$ she/he is.

During a recent admission, I had the pleasure of being cared for by my own endo and his nurse practitioner. For some reason, my admission coincided with their on call schedule. I was delighted, to say the least, as I was having a difficult time with (according to my Dexcom Studio software)  spending 75-80% of the day higher than my target range. Which means I was feeling like crap 75-80% of the time.  So, we used this admission as a glorified basal testing grounds. I was taking nothing by mouth and my tube feeding were being held until my symptoms resolved, so I was going to be able to see what my BG’s did all by themselves without the added food.

I kept detailed BG records (what else did I have to do?! Did I mention I don’t enjoy day time television? OK, truth be told, I’m a sucker for “Kelly and Michael” but that’s it I swear!! Oh no, wait! Kind of enjoy “Kathy Lee and Hoda” but nothing else. Hmmmm, seems I forgot to mention the “Chew”. What?? I’m trying to learn how to cook but, this time I pinky swear, nothing else. I was too busy recording blood sugars!! But I digress.) I welcomed a purpose to my admission, especially if it was going to help me on the outside, as well as, help me feel better day to day. My NP, CDE (nurse practitioner and certified diabetic educator) came by usually at the end of the day and we reviewed my logs. We discovered I need to add a second basal at night for both scenarios of when I’m infusing and the nights I don’t. My basal, or continuous insulin needs are different at different times of the day, which is a very common scenario. During the day I need a higher rate than on the nights I don’t infuse (usually because I’m having a problem with abdominal pain, nausea and vomiting) and on the nights I do infuse, I need a higher rate than I even need during the day due to the increased continuous infusion of carbs (carbohydrates). We slowly tweaked the rates increasing from my old settings by 0.025 units of insulin per hour at the different times of each day and finally came up with my new rates.  I’m happy to say that so far, so good!! I know it’s only been a couple of days but already my BG’s are trending within my target range!! Woo Hoo!! Take that, diabetes!!

I have to say that I’ve been able to make such small increments in my insulin doses thanks to one of the triplets of my D technology…my Medtronics 530 G insulin pump, named Daisy ( the other two being my Dexcom and my BG meter). This never would have been possible when I was on MDI (multiple daily injections). So, I’m, as always, grateful to have access to this amazing D technology!!

I’m usually a positive type of person but being admitted to the hospital with pain especially is no fun, so I was happy to be distracted a little from my symptoms by trying to figure out how to decrease these persistent highs I had been having.  Generally, I HATE keeping written logs!! I rely heavily on Carelink & Dexcom Studio to interpret my data and keep me from going nuts trying to record everything while at the same time, trying to live life. This admission gave me the opportunity to keep very a very accurate log and help myself obtain better BG control.

Do you hate to keep logs as much as I do?? Do you regularly use the software for your D technology to keep track of patterns and trends? Any tips on how I could become a better log keeper, especially when it comes to food logs? Along with laundry, they are the bane of my existence!

And, Remember, CHECK…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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