muddybrooks

My experiences post total pancreatectomy.

Emotional Values

I’ve been reading a lot in many areas of my life these days about assigning emotional values to object, ideas…you name it, and the whys and what have yous of why we do this. I know I do it. For us married girls, many of us preserve our wedding gowns. Why?? We’re not going to wear it again and if the occasion to need another white gown arises, we are not going to want to wear it again for many reasons. We have assigned emotional value to the dress and all it represents and reminds us of, good or bad.

Now that our one and only child has left the nest, we’re trying to pair down, weed out and just generally cut down on clutter, but I can’t seem to bear the thought of getting rid of my wedding dress. It reminds me of a happy time. My Dad was alive and able to walk me down the aisle, a small number of close friends and family attended the wedding, stood by us as we exchanged vows & not the least of which, I married an incredible man who, today, drives me crazy because he can’t seem to find the hamper when he takes his socks off every night!! (But I digress.) I keep saying I’m going to fussy cut the dress and take the pretty parts and fashion a pillow for our bed and then throw away the rest. But I keep procrastinating because of the emotional value I have assigned to this dress.

Another area of my life fraught with assigning emotional value to things is in my life with surgical type 1 diabetes (T1D). [Just as an aside, I technically have type 3C diabetes which is diabetes caused by pancreatic disease but even that isn’t a true representation of my surgical diabetes. My endo and I have decided to call my type of diabetes as it was formally known, surgical T1D. No one knows what it is or has even heard of type 3C. Plus, I like to call those close to me and sharing in my life with D as Type 3’s, as it is more commonly know. Again, digressing]

Take for instance any number that evaluates my diabetes: blood glucose values (BG’s), glycosolated hemoglobin (A1C) , my triglycerides, My HDL & LDL (high & low density lipoproteins), etc. I think you get the jist. But these all help explain how my diabetes is being managed overall. (HA!!! Like you can manage this beast!!) Since I was diagnosed with D (diabetes), I have learned that the proper way to look and think about these numbers is as a scientist collecting data (Thank you, Ginger Veira). They’re not good or bad but instead just in range or out of range & give us information to make a decision for treatment. And as the great Stephen Ponder, MD (author of Sugar Surfing) likes to say, sometimes no action is a treatment decision.

OK, let’s think about this for a minute. I’m a former cardiac surgical ICU RN and every shift I took in data from a client and made treatment decision based on these numbers. But we spoke about these values as good or bad. Not that the client experiencing them was good or bad but these vital data points were good if they indicated things were progressing as desired. Or they were bad because the current treatment plan wasn’t working.  Again, not meaning the client was good or bad. (most of the time my clients were heavily sedated and intubated so how could (s)he be either.)

So, if in my career as an ICU nurse I could call something good/bad and not assign emotional value but when it comes to my own D care, I’m all about the blame and good/bad. In my head, the rational part, I know these BG numbers in particular are neither good or bad. So, why when I wake up in the morning do I smile when I check my BG and it’s in range or close to it. But, if I wake up out of range, it messes with my head and I’m grouchy and tough to deal with. (I actually can think of a better word to describe what my mood becomes when I’m out of range). I feel like I’ve let myself and others down when I’m high or low because that means whatever I’ve been doing to treat my diabetes in the previous hours was unsuccessful. This makes me sad because everything I’ve been doing the past couple of hours has been a result of me TRYING MY BEST!! And this early morning BG is out of range and my best wasn’t good enough to put it in range. It makes me think of myself as bad. So, who wouldn’t be bummed??

I know, I know!!! I shouldn’t think of this number as good or bad but I do!!!! It’s the only objective measure I have of how my efforts are effectively maintaining my blood sugar. As you know, I’ve been dancing with D for just over 5 years, so one would think I’d have a handle on this. Frequently though (if the recent past is any indicator) I SUCK at staying in range. And, some days it seems nothing I do will bring me back in range for any length of time.

Another reason my emotions are tied into these  numbers is I know that I’m going to be judged for these results by many different people. Those close to me know I try REALLY hard at maintaining good…ARGHHHH, I mean in range numbers.  But the general world will judge me by my out of range numbers, anyone from my medical team, “What have you been doing that your this high/low”, and by acquaintances, “Isn’t that really bad?!! with a hint of disgust in her/his tone. I’m sure everyone can tell a story of being judged by their BG reading, or God forbid, the ALMIGHTY A1C!!!!

Heck, I even judge myself and probably more harshly than anyone else could! “OMG!!! What did I eat that made me go so high? Damn, I Swagged (Scientific Wild Ass Guessed) my dinner & now I’m low!! Why did I do that?” “I can’t even got this right?” Then I make promises to myself that I’m going to start looking up carbohydrate values and going strictly by the book. (Which frequently doesn’t work any better than SWAGGING!!!)

Even though I am judging myself along with the world, I’m learning to distance myself a little (stressing the word little) from my BG’s & A1C’s. I’m trying really hard to see these values as just information on my Dexcom graph that help me in my decision making process. It’s rarer now to get as worked up about an out of range number as I used to. (Believe me though, there are days where the numbers hit me harder.) I’m trying not to let a high or low when I check with my meter or glance at my CGM dictate my mood for the day. I try to take it into consideration as just another data point to be analyzed and overall, I think I’m getting better!! I’m certainly not perfect but I’m being kinder to myself when I’m out of range. And who doesn’t need an extra bit of kindness?? Maybe I’m stressed, maybe I need to walk the dog and let the exercise shave off some numbers, maybe I’m not considering that the prednisone I’m taking for a different issues is screwing with my BG. Any number of things could be going on that are out of my control  (Like the wind blew different today than yesterday) and other than accept the number, make a treatment decision, act on it and, finally, move on, there’s nothing more I can do. I don’t know about you, but I certainly have better things to do in my life than beat myself up because I have a finicky disease that isn’t the same from individual to individual, meal to meal, nor day to day.

I’m known among friends and family for saying, “It’s the little things in life that excite me!” So, I’m trying to take every little in range (or close to it) BG and celebrate it as a little D victory. I feel it’s important to celebrate the victories no matter how small and to also learn from the not so victorious moments, so we can grow and learn.

Does anyone else struggle with this issue? Does it get any easier to not beat myself up as I live longer with this disease? I’d love you to share your thoughts!!

Thanks for taking precious time out out of your day to read my post. I really appreciate it!!

Remember, Check. Don’t Guess!!!

Sandy

 

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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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Is it me??

I recently developed a relatively new pet peeve and I’m wondering what other PWD think about this…

 

Last week I was casually chatting with a friend about how I’d had a very low blood sugar that morning (31mg/dl) that was unexpected and I was still kind of in a light fog because of it. He asked me what it felt like. He seemed concerned about this hypoglycemic event and he is a healthcare worker, so I thought I would do a little “inservice” (the medical community uses the “inservice” to educate our peers on new equipment, meds, etc). I gave him a short list of what it could feel like to anyone and as I was explaining that each PWD has her/his own set of symptoms, he suddenly cut my “inservice” short, exclaiming, “that’s what happened to me this morning!”

OK. I didn’t know he had difficulty with his blood sugars regulating on their own, by way of his normal, completely functioning islet cells but maybe I didn’t know something about his current health situation. When I asked him what his symptoms were, he told me, “I got a bad headache when I skipped breakfast.” I inquired further and, no, nothing was wrong with his normal functioning islet cells. Maybe you were just hungry? He quickly replied, “No, I wasn’t hungry! I had a low blood sugar just like you described!” I asked him what he did to correct it and he calmly stated, “Oh, I just popped a couple of Advil and went about my day. But, boy, was I starving at lunch.” WHAT??!!

I calmed my racing, shocked pulse down and just decided to move the conversation along because I got the feeling this friend had no clue what a true hypoglycemic incident is about. I changed the subject and we got to the business of catching up. I decided the “inservice” would have been lost on this person anyway.

This is a first for me on this Type 1 journey. My inner circle of family and friends has been very supportive and frequently asks questions so they can better understand what’s going on with me, like I do with them when something’s going on with them that I don’t understand. It’s a normal give and take amongst friends & family. But this person is just outside of my inner circle, so I shouldn’t have been surprised when he really wasn’t concerned about me at all, just his headache’s cause (even though it was pretty obvious the missed meal was most likely the cause. But, in his defense, maybe his blood sugar was at the lower end of his normal glucose range.)

I’m still wondering why I was so amped up by his response. It seems to me that many PWD fear the low!!! And just “popping a few Advil”  wouldn’t correct a true low blood sugar. Maybe I’ve been in a little bubble where it’s been all about me as I navigate this new world?(I’m definitely learning it’s NOT all about me) I don’t know but I’m thinking that my fear of a low and this person’s delight in figuring out what caused his headache, shocked me.

When we were preparing to part ways, I mentioned to him that he should start carrying immediate glucose foods with him to combat the lows he might experience in the future.

How do you respond when someone seems uneducated on what you’re experiencing due to diabetes and compares it to something in her/his nondiabetic life?

 

Remember…CHECK. DON’T GUESS!!!

 

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Correction of website posted Monday, June 2, 2014

Hi! Just a quick correction. The website for Pump Wear is http://pumpwearinc.com Thanks!!

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