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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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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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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