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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I’ve Returned!!

I apologize for my long absence and unfortunately I don’t have a good excuse. Life happened and family stuff took priority. But I really missed being away and hope to say that it will never happen again. But I can’t promise that otherwise I’d be stretching the truth so far it would SNAP!!!!  But I’m excited to be back and LOTS has happened both in the D Tech World and my personal world. So let’s get started!!!!!

As many of u r aware, Dexcom G4 came out with their Share Technology incorporating a smart phone into Continuous Glucose Monitoring capability!!! I think this is so exciting!!! The NightScout capability has been out for a while and is equally amazing but for people like me who don’t possess the capabilities to set up the NightScout, despite the people involved offering all the help one could ever want (I still couldn’t do it). Dexcom Share has brought a new level of BG monitoring in a real-time fashion.

For care givers of children and seniors, I think this is a level of monitoring that wasn’t available to a wide base of people until now. For those who are not familiar w Dexcom Share, it is a CGM system that allows the Dexcom sensor wearer thru a cell phone APP, now available for both iPhone & Android, that thru low energy Bluetooth capability which sends the BG info in real time from the sensor to the Dexcom receiver to the PWD’s cellphone and then to the infamous “CLOUD” which then allows the “followers” the PWD has invited to receive the BG info on their cellphone after they have obtained the followers cellphone app.

I think this is HUGE!!! I upgraded to Dexcom Share even though I only have 2 people following me. I’m very independent in my BG management, like many of u, but I have to say, having someone know my BG at any point in time has kept me on my toes!! Like any human being, I tend to take the easy way out of anything if given the choice…OK, I’ll admit it!!!! I get LAZY at times!!! But w someone aware of what my numbers are doing, I’m more likely to pre-bolus before a snack that I would if no one was looking!! I’d still bolus but the allure of my sweet treat would make me quickly devour it without waiting for my insulin to start working. But now knowing someone is looking at points thruout the day, I tend to pre-bolus and wait for the dip in my CGM before I actually start eating my sweet indulgence!!! So even though I’m not a caregiver of a child, it’s still a great advancement to my day to day management.

And very exciting news for Dexcom as well is that they have received FDA approval for the G5 Dexcom CGM which eliminates the need for the receiver between the sensor and the cellphone. This advancement takes the sesor reading thru Bluetooth low energy again right to the PWD’s phone and then it goes to the “CLOUD” again and then out to the chosen followers. Very big news!!!!! And Dexcom was surprised because they got approval much more quickly than expected As a result Dexcom is not ready to ship the new G5 yet but has stated they’re hoping to be shipping by the end of September/beginning of October. If u purchased ur G4 in August 2015, u’ll be able to get a free upgrade, but the rest of us will either have to wait until the next end of warranty date to upgrade or purchase out of pocket. I’m not aware what the out of pocket cost would be. I haven’t seen that published anywhere. Stay tuned!!!!

And,on the FDA approval front, Tandem T Slim received FDA approval for integration of the Dexcom G4 CGM. Although, I just spoke to a Tandem rep and the T Flex is not included in this approval. But stay tuned!!!!

OK, that’s it for Diabetes related Breaking News!!!! I’ll end this here but I’m looking forward to my next posting which will outline my attendance at this August’s American Diabetes Educators Association”s 2015 conference in New Orleans which Was AWESOME and VERY EXCITING.

As always,     CHECK, Don’t Guess!!! Have a GREAT Wednesday!!!

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I think I’m definaitely an IDIOT!! (caps intended!!)

I like to think I’m a reasonably intelligent woman or at least I seem to learn quickly. But either I’m losing IQ points since having turned 50, or I’m just an IDIOT!!!

Now, I’m almost 2 yrs into my T1 dance & as u know, I’ve really tried to do my research to understand my new normal, but I seriously made a HUGE misstep and I did it twice!!

I’ll explain… I’m trying to incorporate a daily after dinner walk in an attempt to control my post-prandial highs. Great in theory!!Usually, when I go for a walk whenever, I check a BG and also, carry my meter and stuff and enough Smarties for at least 2 low treatments. Key word here is usually!! I didn’t check my BG, nor did I carry “my kit” of usual suspects this time!!

Luckily, my new walking pattern is after a meal & I do pretreat my insulin at least 10 mins before my meals. So, my BG was likely higher from the meal but I really had no idea. I’m VERY lucky that I didn’t experience a low but I’m angry w myself for “forgetting” to do the usual precautions I normally take. It was really irresponsible!!!

Now, the reason for the capitalized IDIOT!!! Unbelievably, I DID IT AGAIN!!! And, this time I wasn’t so lucky!!! I had a low that produced the “dumb” symptoms I say that I experience. I was walking w a friend, but I couldn’t verbalize that I was low and without my “kit”. She asked me if I was ok but all I could say was, “yah.” So, we parted ways and I very shakily continued the block to my house.

I’m fine but I guess what I’m trying to say is don’t do what I did, TWICE!!! Please, please, please… Take a minute before u go for ur exercise or just running out the door to do an errand & make sure u have what u need to be safe with u!!!!

We all matter!! & I’m selfish & I want u around to read my silly blog!! Thanks for that by the way!!!

Remember, CHECK!!! Don’t guess!!!

And Happy Thanksgiving to everyone!!!
Try an after meal or between courses walk on turkey day, but please bring ur stuff!! Learn from my mistakes!!! I know!!! I’m an IDIOT!!! Don’t be like me!!

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JDRF Walk: Boston 2014

I’m very excited to be participating in this year’s JDRF Walk here in Boston!!! I’ve joined a team from Diabetes Sisters. I have found a Boston branch of the group of Diabetes Sisters & we’re walking together. I’m excited to be a part of it this year!

Speaking of Diabetes Sisters,  when I found them on Glu, I was interested in joining a Boston chapter if there was one. Low and behold, there is and not only that but the meet in my home town! I had to go and meet all the girls that are already a part of the group. For anyone in the Boston and surrounding communities, we meet the third Wednesday of every month at the Braintree Panera.

The women are lovely and we all have T1D, which is purely by coincidence. My first evening at a meeting, I immediately found my place in the group and fit right in. I’m the T1D newbie in the group and, not surprisingly for anyone that knows me, I asked all those burning questions only another PWD can understand, like “Is it normal to constantly be thinking of carbs?”. I received some sage advice from these girls that I really needed to hear. I just hope one day, I can be the one helping someone new to this game. I’ve gone to two meeting so far and I’m loving it!! it’s really great to be around people who get it!!

We got our T-shirts last week for the JDRF walk this Saturday which made it more real that I’m going to be participating. I hate to admit that I’m a little nervous about the walk, particularly finding everyone at the Hatchshell in Boston!! If what I’m hearing is correct, there will be thousands of walkers & I’m fearful, I’ll never find the members of my support group and Diabetes Sisters in general. I have an email out to our fearless leader to find out where we’re supposed to meet. I shouldn’t be nervous though. If Saturday is anything like the people on the DOC, I’ll meet more friends I never knew before just by being there! Wish me luck on my first walk. I’ll write a post summarizing the day next week.

 

T2D Update:

My friend with T2D has been started on twice a day metformin instead of just once a day and it seems to be working a decent bit, although, he hasn’t continued to check postprandial BG’s. I’ve asked him to pick a meal and to check pre and post meal BG so we can see if the metformin is making a difference there.

Also, my endo’s office sponsors a class for t2D that is run similar to a board game to keep the participants interest and to keep them engaged. Sounds like fun to me. If this class is anything like the T1D class I went to there, it will be awesome! I called my CDE and asked her if my friend and I could attend. Of course, I would be there as his support person. Plus, with these things, it’s better to bring a friend because between the two of us maybe we’ll pick up on things the other didn’t catch. So, I got the go ahead for us to participate, although, I have to mention, his PCP was less than enthusiastic. This doc told him that the classes would just confuse him, so he would prefer my friend not go. Luckily, my friend told his PCP that the class is an ADA certified self management course & that he’s taking part to expand his knowledge, thereby increasing the likelihood he’ll be more successful in his diabetes management. My friend is an intelligent guy. If something is confusing, we can ask for clarification from the presenters. DUH!!!! His PCP relented and wrote the referral. Although, he did so begrudgingly, saying, if you’d just lose the weight you wouldn’t need the classes. My opinion is whether he losses the weight or not, he’s still a T2D, so he’d be smart to learn as much as possible about the disease and it will make it easier for him to keep the weight off when he does lose it by having learned better portion control and other management tactics. Stay tunes for the continuing saga!!

 

 

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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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Friends For Life By CHildren With Diabetes

The first word that comes to mind is, Wow!!!! This past week in Orlando at FFL was more amazing than I ever could have imagined!!!! I knew I would meet some amazing people but I wasn’t sure I’d get to meet the first bloggers and my D idols, Kerri Sparling and Scott Johnson!!!! They are just as down to earth and amazing as their blogs suggest!!! I found their blogs when I first came home from the hospital after my pancreatectomy and was told my islet cell transplant had failed, so that now I had surgical, type 1 diabetes. I was so in denial still, although I was testing and dosing my MDI, which I hated every minute of!! But, luckily, I had the foresight to read a little and then a lot about T1D.

My name badge which everyone had to wear for ID and for getting into sessions and meals, labeled me as a “First Timer” which I was a little embarrassed about at first but soon realized it was a great idea! People I didn’t know would come up to me and welcome me to the conference. It was so nice!! And other first timers would recognize each other and could meet up and form a special bond of understanding how it all was a little overwhelming at first until we caught on and learned the lay of the land!!

I attended MasterLab which was amazing and awesome at the same time. Awesome speakers and a great panel discussion, not to mention the great meals we were provided. I also spent some time at the Glu table performing my newly acquired Glu Ambassador status. I’m embarrassed to say that although I’m familiar with what Glu and T1D Exchange does, I wasn’t sure how to sum it up in a nutshell,l so people don’t get bored with my explanation, thereby deciding not to join this amazing nonprofit!! So, I watched the masters at work, Anna Floreen and Bill Woods, more affectionately known as GluAnna and GluBill. They taught me a lot for my upcoming stint at a local SLAM event in Canton, MA. Now, I’m hoping I can be more effective there!! They were so much fun to be around and I was happy I got the time to spend with them!!

I went to many of the warm and fuzzy sessions, “Support For The Long “, “Social Media 1 & 2”, and “Parenting With T1D”. All four were led by Scott Johnson, Kerri Sparling and some of their colleagues. (So, you could sort of say I was stalking Kerri and Scott, but honest I wasn’t!!(Ok although Rhode Island is in New England I very rarely make it there, despite Kerri’s claims it’s a suburb of Boston, except for visiting the Roger Williams Zoo. And, after getting pulled out of line due to my pump and hands testing positive for explosives, I have no desire to fly to Minnesota, unless the Mall of America calls my name!! Well, maybe I was stalking a little bit,  but I really liked they way they presented and ran the sessions.) We all sat in a circle and everybody participated. It was a safe environment where everyone could verbalize her/his biggest fears and questions and not be judged. And, most importantly, everyone would “get it”!!

All in all, FFL was an amazing experience and I plan on going back next year. I’ll have to start saving my pennies now because next time I want to include a trip to the Magic Kingdom!! ( I know!! I’m an idiot for not planning to go this time, but I did make it to Downtown Disney, an open air shopping area with many types of stores and a couple of rides. It was a good time. I got my souvenirs for friends and family back home, and the company was AWESOME!!! And, luckily, we left before a major thunderstorm that dropped a ton of rain, but not on top of us. I’m glad we went early!!! It was a storm unlike the 10 minute storms they usually get that lasted hours instead of minutes.

If you ever get the chance, I highly recommend the conference!! It’s held every year sometime in the beginning of July in Orlando. Next year, it’s being held July 6-12 at Disney’s Coronado Hotel in Lake Buena Vista, Florida & try to include some time at Magic Kingdom after the main sessions are over. We’ll be right on the grounds!! Visit http://childrenwithdiabetes.com for more information.

 

Remember, CHECK!! DON”T GUESS!!!! ( I learned this week, the only bad number is a number you don’t know!!)

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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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Friends For Life Conference 2014

I’m excited to say I’m going to my first Friends For Life conference in Orlando put on by Children With Diabetes organization and supported by many of the diabetes tech and insulin makers. I’m a little nervous because I’m going totally alone but I’m sure I’ll make some great new friends along the way.

I recently became a Glu Ambassador so I will be volunteering some of my time at the Glu booth greeting people in the exhibition hall, so I will be spending some time with my friends from Glu and meeting new people, so, I’m looking forward to that!

I’ve registered for a diabetes advocacy program called MasterLab, masterminded by the people at Diabetes Hands Foundation. I’m hoping to soon become a member of Diabetes Advocacy and hope to become more involved with promoting access to all treatments for diabetes for everyone despite insurance or no insurance. As you know from my first post during blog week, my advocacy baby is getting Medicare on board with everyone on Medicare having access to CGM’s. Once a PWD hits 65 yrs old and has Medicare as their primary insurance, if that person has been using a CGM covered by private insurance, Medicare will NOT cover it and the PWD is invited to pay out-of-pocket or lose their CGM. IMHO, this is ridiculous!! And, don’t get me started on the limited amount of strip coverage that exists. Unbelievably, the argument that these modalities prevent or stave of the incidence of diabetes related complication, thereby reducing costs, doesn’t seem to matter. So, this is just the first topic of my advocacy efforts. I’ve already written to my local Reps and Senators as a first step in the process.

I, also, believe strongly in uniting the PWD with others struggling with diabetes and similar issues. Education makes us stronger and, again, IMHO, better able to manage our diabetes, no  matter the type. This blog grew out of my need to belong and find others struggling and feeling very much alone as I was. I hope you all are enjoying my posts and I appreciate you all following along reading my posts and commenting. It means the world to me. If I touch just one person and make a difference in her/his life, I’ve accomplished my original goal. (BTW, if there is anything you want me to cover just comment and let me know!)

Is there anything you would like me to gather info for at Friends For Life (FFL)? Any areas where you’re seeking answers to questions you have? Let me know if I can research and gather any specific info you would like or need. I’m going to this conference, first and foremost to connect with other PWD but also, equally as important, to strengthen my knowledge base. I’m really looking forward to the MasterLAb but I’m also hoping to go to Gary Scheiner’s presentation called, “Strike The Spike” dealing with after meal high BG (also known as postprandial spikes…medical jargon at its best!!).

Joe Soloweijczyk, RN, CDE is also presenting a talk called, “It’s Not Just A Numbers Game”. I’ve recently become acquainted with his work online. He has a five informational presentations called “Chalk Talks” on you tube if your interested. And Tudiabetes did an interview with Joe about diabetes in his life. I was riveted to my computer. It lasted an hour and I was sad when it was over. He’s an awesome diabetes advocate. I first learned of him thru Kelley Kunik’s blog “diabetesaliciousness”.  She became acquainted with him during her first days as a child with diabetes when Joe was just a college student forging his way in the world.

Sorry, I’m babbling but I just wanted to give you an idea of what I will be doing starting in nine days. I’ll write a couple of posts when I get back reviewing all that I learned so I can pass it along to you. My biggest goal in going to Orlando, is being able to grow my blog and increase the quality of my writing and the info presented. I don’t want to be “just another diabetes blog”! I want to help other people with her/his daily managing and have something interesting to say.

Thank you all for following along so far!! I appreciate the support!!

Have a great Sunday!!

 

And Remember!! CHECK!! DON’T GUESS!!

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My Biggest supporter not only T1D but life in general.

I’ve been thinking lately that will the people who support me now in the beginning stages of my T1D journey be there for the long haul. Having had chronic pancreatitis I saw supposed friends come and go over the years but one person has remained strong in his support of me over the years…my husband.

Last week we celebrated our 30th wedding anniversary. (I can’t believe I’m old enough to say that!!) The card I got him  says,

“We’ve been through a lot together. You’ve seen me at my best, my worst, and first thing in the morning.”

But he truly has seen me at my best and my worst, and that’s not always first thing in the morning!! But despite him experiencing me at my worst more often than I like to admit, he stays with me…and I with him. I can count on him through thick and thin. We have a system that although might not work for others, works for us.

But as I said, this got me to thinking…how many friends will I lose due to yet another chronic disease to contend with. My life with chronic pancreatitis left me with a much smaller circle of friends due to my inability to always be able to keep social plans I made when I was feeling well.

Through all of my medical struggles though, and I think the T1D journey will be no different, I have met and continue to interact with some amazing people. I definitely have learned who my true friends are through all of the ups and downs. I have met some girls through a mutual love of all things sewing and I’m betting they’ll be supporting me through all of the good times and the bad times of the coming years, just as I will continue to support and love them.

I also have come to rely, respect and admire some amazing doctors and nurses that have come to be an integral part of my healthcare team. I’ve fired some less than stellar medical people through my tenure with chronic illness but have a truly remarkable team now that I know I can all upon at a moments notice, just like my husband. Although chronic illness stinks, I have met some amazing people who, if not for the illness, I wouldn’t have met. So, I’m thankful for all of the facets of my life, even the negative stuff.

What is the most positive aspect of your diabetes?? Who is your biggest supporter?

 

Remember, CHECK!! DON’T GUESS!!

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