muddybrooks

My experiences post total pancreatectomy.

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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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 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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Type 1 vs Type 2 research

A very close friend recently had a high A1c after a few years of controlling his Type 2 with diet and exercise. At a recent follow up endo appt he was told he needed to go back on to Metformin in an attempt to decrease his A1c. He had gained some weight due to being sedentary over the winter due to illnesses and injury. Needless to say, he was devastated with this news. He felt like a failure after having been successful for many years with diet and exercise. He called me very distraught and devastated about his A1c. I tried to console him and gently told him that for the near future we would be on a fact finding exploration to determine what his BG was doing. Like I try to tell myself, I told him there was no emotional value in BG readings. We are scientists collecting information to make treatment tweaks to his meds and diet & exercise.

Why do we always, at first glance, condemn ourselves when we have an out of range BG reading. I’m working hard at it but it still takes my breath away when I get a wacky reading wondering what I did wrong for my BG to be so out of range. My friend was so dejected and disgusted with himself. He wanted to give up right then and there, telling me, “Why should I bother caring?? It won’t get me any where!” I promised him I would brush up on my T2D knowledge and together we would navigate these new waters. I told him we were in this together & I would do all I could to help him learn to care for his T2D. So, I have been immersed in T2D research and have learned a great deal about the differences between T1D & T2D.

I admit I wasn’t as well versed about T2D as I was T1D but I have done a great deal of reading & learning how to manage this type of D. First off, I asked him if he could commit to testing, for starters, twice a day-a fasting upon awakening and a BG check before bed. He has done an excellent job in taking on these new tasks. I was a little shocked to hear his endo tell him that testing wasn’t that important & to test “whenever”. I told him we needed to see what his baseline BG’s were doing & if the metformin was working or did it need to be tweaked. He has taken these new tasks on , as well as, checking before lunch and postprandially to evaluate his baseline BG’s. Doing so brought some interesting info to light that we wouldn’t have been aware of without him testing as he had. He has a very reactive response to any carbs, so he’s working on cutting portion sizes and making better carb choices. He is going to make an apt to see the Registered Dietician at his doctor’s office soon to help with this.

My friend pointed out that I actually have it easier in dealing with my meals because I can bolus for any amount of carbs I ingest where he doesn’t treat for carbs or correct for a high BG at this time. I agreed with him but I told him to hang in there. We are still in the beginning of his treatment of this beast and needed to continue to collect as much data to further evaluate his BG response to the Metformin and the new exercise plan he has embarked on. This weeks new task is to log the time and BG reading he gets so he can show his endo when he sees him next. This has been a little challenging as we all can relate to how much we hate to keep a log. We’re looking at a few different iPhone apps to help with this, as well as, trying to get a meter that would automatically sinc his BG reading with his iPhone. We’re looking at the Verio Sinc, specifically. It would be great if his insurance covers the strips for the Verio., then he could email his BG results to his doc for any appts he has. Any one have any suggestions as to a meter which would help in his quest to have his BG’s automatically download, taking the hassle out of logging?? Also, are we correct in that the Verio sincs with the iPhone?? He has an iPhone so we’ve been searching and trying out new diabetes apps regularly.

It seems the Metformin is starting to kick in as his BG’s have come down a bit, especially fasting. It’s been very informative in researching T2D to help my friend. I also have another support person in him to help me with my day to day management of my T1D. We have each other’s back in the diabetes war. I’ll keep updating the blog with what I’ve learned through this new chapter in my and my friend’s life as I try to support my good friend.

 

Remember, check! Don’t guess!!

(Now, My friend understands why I say this phrase.)

 

 

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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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