muddybrooks

My experiences post total pancreatectomy.

Life Can & Will Change in an Instant

It’s been a hell of a week for me!!! Medically, I have been feeling good the last couple of weeks despite a brush w DKA a month ago. ( more about that to come in a near future post) was cruising along when life threw me a couple of curve balls. My extended family lost an aunt & an uncle while at the same time we celebrated my sister’s and her son’s birthdays. After my Aunt’s wake, which was a traditional Irish wake where we celebrated her life, I got home kinda late. I had to be up early to get to the funeral home again for the procession to the church and then the funeral Mass. So, just before the 11:00pm news broadcast, I decided I would take a shower before I went to bed. I’ve been having trouble sleeping and a shower relaxed me which heped me to fall asleep instead of just staring at the ceiling. Plus, I’m SO NOT a morning person and the thought of expending all that energy to take a shower in the morning was exhausting just thinking about it

As I finished up my shower, I tried to step over the tub wall but I must not have lifted my foot up high enough. My toes on my left foot caught the top of that wall and over I went!!! I fell with a loud thud onto the cold and very hard tile floor!!! I landed on my left shoulder which I was afraid I had broken. That would not have been good since I had a shoulder replacement a few years ago. After my shoulder hit the floor, my left hip landed next!!! As I appraised the effect the fall had had on my body, I realized I didn’t have much pain & I could move my left shoulder with only minor discomfort. I decided to stand up! As soon as I put some weight onto my right leg, I fell back onto the tile again!! I made repeated attempts to get up but my right hip kept giving out on me and it would not tolerate any kind of weight put on it. In january of 2015, I had to have my right hip replacement redone because I had developed osteomyelitis in that joint, so I was afraid I had broken &/or shattered my right hip!!

My husband had already gone to bed and was asleep but the noise from me falling woke him. He immediately called out to me asking if I was ok. Of course, I said I was fine but after I realized I wasn’t going to make it out of this bathroom without his help, I rephrased my reply and asked him if he could help me get to our bed. I was deluded into thinking this pain was just from a bruise and it would be better in the morning after some ice & Advil. It’s amazing what a little denial will do.

Fast forward to 2:15am, my hip pain was not letting up. Not only that but the pain was getting worse as I laid there in bed. My other half asked me how I felt and I couldn’t lie!! We decided to call 911 and get an ambulance because I was not going to be able to climb into my hubby’s Tahoe to get to the local hospital. We woke our 25 year old son who still lives at home while he’s working and saving some money & together, father and son carried me downstairs while I was seated on a chair. EMT’s and paramedics carry patients down the stairs in a dwelling by what’s called a “stair chair” & we both had worked as EMT’s for a number of years, so It seemed like the safest and least painful way to get me downstairs while we waited for the ambulance.

Long story short, my right hip was ok!! Not fractures or dislocations but my pelvis was another story. I fractured it in two places and was experiencing massive muscle spasms in my pelvis and thigh area. This wasn’t good!!! I spent five days inpatient at the local hospital and came home walking with crutches three days ago. Needless to say, I didn’t make it to either funeral. But at least I showed up at my aunt’s wake!!

I was in too much pain to throw a pity party for myself the first couple of days after I fell. I was completely overwhelmed trying to manage my ostomy, my insulin pump & still needing to self cath to have much time to feel sorry for myself!! As was my usual issue, my ostomy pouching system failed and exploded the next morning as I was being admitted to the orthopedic floor. And with all the excitement, my blood sugars were thru the roof not responding very well to my correctikn boluses. I did get to do some Diabetes Awareness and education because I had student nurses every day and they were fascinated by my insulin pump and especially my Dexcom G5!! And, when Mr Sandy got there, he blew their minds even further and showed them that not only were my glucose levels displayed on my iPhone but that they were displayed on his iPhone as well!! Even the floor nurses were spell bound by all my D tech!!!

I was relieved to be able to get back home after only a couple of days to be reunited with Indy, my black miniature poodle!! (Of course, as well as my hubby  and son!!) But we soon realized that he was deathly afraid of my crutches!! Even if the were just resting on the wall nearest to me. Much to my broken heart’s dismay, Indy made it a point to stay away from me!!!  I am soooo bummed!!! Even though I’m not using the crutches much for short walks in the house, he still seems weary of me, although earlier tonight he did come to me and sat in my lap for a little while. So, maybe he’s warming up to me now that those scary crutches aren’t being used as much. I still use the crutches when I go out and there will be a decent amount of walking. But although I’m making miraculous progress, I still cannot turn or pivot on my right leg. I can only gingerly walk straight ahead. Driving should be a hoot!!!!

I definitely had the watchful eye of a guardian angel on me the night I fell because my injury could have very certainly been much worse!! And I have AMAZING family and friends who kept my spirits up and I didn’t go a day without someone there to keep me company as I tried to get thru the pain and spasms.

I’m sorry this post doesn’t have much of a D theme but this just helps me to remember that I am NOT my diabetes and my diabetes does not define me. Unfortunately though, I was planning on traveling to Chicago this coming weekend for the Diabetes Sisters Leadership Institute conference. I’m really bummed to not be going but I have to remember that I’m already registered for the February Uncon 2017 followed by another Uncon and Diabetes Sisters Weekend for Women coming up in October of 2017. So there will be other diabetes related trips to go to. Unrelated to my diabetes travel, I have a girl’s trip to Canada after Turkey day with two of my best sewing buddies that I HAVE to be completely healed and mobile for.
Remember to check, NOT guess!!!
Sandy

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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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