muddybrooks

My experiences post total pancreatectomy.

Blog Week Day #4- What makes dealing with diabetes and emotional issue for u & how do you cope.

I can’t believe it’s already day #4 of Blog Week!!!! It’s going by WAY TOO FAST!!!! Maybe we can #blamePete!!!!

In my daily management of my diabetes, I assign emotional value to my blood sugar readings!!!! I know I shouldn’t!! I know it is just a number that allows me to make a decision about what I need to do in the near future to keep my blood sugars in range. But I feel badly when I’m out of range and I blame myself for “being a BAD diabetic”!!!

Mr Sandy follows my Dexcom numbers on his phone so he knows at all times what my blood sugar is doing. He’ll send me a text if I’m really far out of range just to make sure I’m aware of my number. But I always feel guilty that maybe I didn’t wait long enough to eat after I prebolused, for example. Or if I’m low, how did I not count my carbs right and take the correct amount of insulin.

I read Dr Stephen Ponder’s book, Sugar Surfing, and I have been trying to apply those principles to my daily management but I can’t seem to attain the in range numbers that are shown in the book. Does this make me a bad diabetic?? Unfortunately, my brain immediately goes too blaming myself for the out of range number. But my heart knows I’m trying my best to manage and the number is JUST A NUMBER!!!! I wish I didn’t do this but It’s just how it goes for me!!! YDMV-Your Diabetes May Vary.

I’m working on this and I’m always telling myself that I am not defined by my numbers!! It’s just a number that helps me to make treatment decisions. But I’m a work in progress and I haven’t gotten to the point yet that my numbers don’t carry an emotional value.

My diabetes medical team is AWESOME and just takes my numbers as points on a graph that helps them evaluate how I’m doing. I never get the “Blame Game” from them. It’s just me but hopefully someday I’ll get where my numbers are just that, numbers & not a source of guilt.

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Blog week Day 3-Wild card

I’m a little behind so I’m just getting to Wednesday’s topic but I’m gonna go wild card!! The proposed topic is about a negative experience related to your D and then turn it around and write what you wished that person had said. But I haven’t had a recent experience that I can write about so I’m going “WIldcard” topic. Here goes:

A funny thing happened to my hubby and I in the grocery store recently. Usually when I go food shopping by myself, by the time I get to the checkout line I usually am low. but we went shopping at our local grocery store right after we had had lunch.

We were standing in the line behind an older lady who looked very “prim & proper”. My Dexcom started to go off and she heard it. Hubby then asks me, “You low?” I stated, “No!!! I can’t believe how high I am!!” The lady was within ear shot and heard me complain that I was high!!! She actually sighed, and turned away in disgust!!! My husband and I laughed which made her more indignant!!!

We’re guessing she thought I was “high” and not from my blood sugar!!! We thought it was hysterically funny and were practically giggling while she put her grocery items on the belt. When she was finished checking out, she walked away quickly without even glancing in my direction. Too funny, IMHO!!! (In My Humble Opinion)

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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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