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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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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