muddybrooks

My experiences post total pancreatectomy.

Boy, did I mess up!!

Again, seems I’m apologizing. Well, I actually am apologizing, nothing “seems” about it. I tried to transfer all of my original posts from BlogSpot to WordPress and messed up the chronicity of the whole blog. Hmmm. I have to spend sometime this afternoon figuring this out, after I go to the dentist, of course. Hopefully I’ll figure this out soon. Sorry for the confusion!!

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Glu CGM and panel discussion event

Wow!! I went to my first T1D Exchange: Glu event last night and it was fantastic!! It was held at the Glu office in downtown Boston. It was easy for me to get to as I was only coming from the South Shore. Just a relatively quick ride on the T and then a quick walk to their office.

When I first walked in, I was greeted by GluAnna & GluBill-that’s Anna Floreen and Bill Woods. I couldn’t believe it. I had read their stuff being a member of Glu already and I’ve seen all of Bill’s videos on youtube, but to see both of them in person??? I was a little star-struck you could say. They were very gracious in welcoming me to the event. But talk about star-struck!! I couldn’t believe it when Kerri Sparling walked into the room!! I had NEVER thought that I would ever meet any of these people in person. But they were the people that guided me when I was first diagnosed. Of course, they didn’t know they were guiding me but their online presence was a comfort to me as I was trying to figure out this “Daily Guessing Game”. I firmly believe in the power of the Diabetes Online Community (DOC).

Back to the event. There was a light supper offered with lots of yummy sandwiches and both lettuce & fruit salads, plus carb free drinks. I was psyched about the drinks because I HATE to waste my carbs by drinking them. Drinking carbs does not fill me up and they jack my BG up quickly. Plus, it stays high for what seems like hours after, even if I prebolus. Nope!! I like to eat my carbs!! (Oops!! Sorry, digressing again.)

There was some mingling before the talk that provided a rare opportunity for me to just chat with another T1D’s!! It was amazing to see all of these people in this room and know almost all of us had T1D or knew someone that did. These people could relate in a way to what I have experienced and continue to experience that I have never experienced before. (Alright, that’s a lot of the word experience but you get my point.) Then Bill Woods  and Anna Floreen took the floor with a overview of what Glu is and does for the T1D community. It was very informative and interesting. I learned a great deal about Glu. I was misinformed that they were just this online community of people. I didn’t know they had an actual brick & mortar office and that its in my neck of the woods!! Plus, all they do to aid research projects and collect data from the PWD living with this disease to help devise research projects, at least that was my understanding.

Then it was time for Dexcom’s presentation: CGM-Today, Tomorrow and the Future. I apologize that I don’t have the names of the sales reps that gave this great talk. It was unbelievable to see the accuracy stats on the Dexcom and what they have in development right now. Some exciting products and innovations are coming up soon. Stay tuned!!

Following Dexcom was a panel discussion featuring, Luanne Gable, mom of a daughter with T1D, Anna Floreen, T1D & THE GluAnna, Scott Olnick, T1D from Tandem but representing himself and not Tandem, and Kerri Sparling with Bill Wood, GluBill moderating. (I apologize if I got the spelling wrong on anyone’s name! I admit I got so caught up in the talking with other T1D’s, I didn’t remember to check the spelling of their names until I was on the train back home. So sorry!!) There were many topics covered about living with T1D, including:would you rather give up your CGM or your pump if you had to choose; what adhesive works best for you; differences between the CGM’s available on the market today, specifically Medtronics and Dexcom and PWD’s experiences with CGM accuracy and range of the transmitter to receiver. Lots of great points were raised and a lively discussion ensued.

It ended at about 8:00PM & the networking began. I met all kinds of people from all walks of life and I can honestly say, I was thrilled to do so. I meandered out at about 8:30PM and I was so sad to go. I’m seriously considering if I can make it to Friends For Life in Orlando Florida in July.That would be an amazing experience. (There’s that word again!)

I really want to thank Glu and the T1D Exchange for hosting the event, Dexcom for the great presentation and the panelists for their insight into their experiences with T1D. It was an awesome opportunity and I didn’t fully expect to feel as great as I did about being in the room with all those PWD.

 

Remember, TEST. Don’t Guess.

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I HATE LOW’S!!!

Happy Sunday!!! Hope your Memorial Day Weekend is off to a great start & you’re having better weather than we are in New England, although tomorrow’s supposed to be 80’s & HUMID!!!! Seriously, Mother Nature, can you say spring???!! I’m walking around in quilted vests with a fleece over top just to stay warm while sitting on my swing on the deck outside. It’s supposed to be spring !! The unofficial start of the summer!! And, I’m bundled up like it’s still February!!! I swear to God, if we don’t get some spring weather soon…well, I don’t know what I’ll do but continue to complain about the weather! That’s what we do here in the Northeast, complain, complain, complain but NEVER move!!!

I guess it could be worse. I could be complaining about these stinking lows I’ve been dealing with despite some recent tweaks to my basal. To me, lows are very scary!! I can’t get my brain engaged enough to recognize I’m low, so that means I can’t form the right words to say I’m low to get some help. I HATE that!!!!

When I’m low, I actually have these arguments with myself in my head.

“Something’s up!”

“No, you’re just hungry.”

“No, maybe you should check a BG?”

“WHAT??!! Are you out of your mind?? I just checked 15 mins ago and I had a snack I didn’t bolus for, so there’s NO WAY I’m low. If anything I’m probably high (BG wise of course!)

“I’m telling you I feel weird and I want you to check!”

 

I’m not kidding!! This goes thru my mind, but do I pick up the meter or even Dex… (who’s right on my waist! Don’t have to extend much effort to check Dex!)  But my brain seems to function at a lower level when I’m low, so it takes a few minutes for me to actually recognize I’m low. I do eventually check but it takes me a few minutes to engage my brain enough to decide to check. You’d think it would be automatic by now!! OK, I’m a little slow on the uptake. Did I mention I’m new at this?? (Seriously, in 20 years, I’m still gonna be using that excuse!)

 

Then there’s the ravenous hunger but we’re cautioned about feeding that hunger and to only eat 15 gms of garbs for a low. Not only that, then I’m supposed to wait 15 mins before I check again to see if I need more carbs!! ARE YOU KIDDING ME!!!!????? Wait 15 mins!! I can’t wait 10 seconds!! My body is screaming for food & I’m supposed to sit quietly and wait. (Did I mention that I also lack patience?? I once wore a path in the concrete in front of my house, pacing, waiting for the UPS guy to arrive. But in my defense he was bringing me my newly purchased Brother sewing machine. That day should have been named a national holiday. What?? Did I mention I LOVE to sew?? Sorry, I digress)

When I’m low, I know that 3 rolls of Smarties equals 18 gms of carbs which is enough to raise me 25 points. But as I’m eating my 4th and 5th roll, again I’m arguing with myself in my head because I know I’m going to rebound so high and then I’ll be chasing my BG for hours. So, I can emphatically state…I HATE LOWS!!!!

But, having said that, I can appreciate lows and I’m glad to have some awareness of my lows. I used to have a lot more low symptoms but now I don’t feel them until I’m in the 40’s, so that’s where Dex comes in!! I have Dex set to 70 for a low so that I can catch it before I become ravenous and devour the contents of my fridge. (Sadly, at the moment, there’s not much in it. It’s time to go grocery shopping, so I better not have a rip, roaring low that need many carbs to satisfy, although I did recently stock up on Smarties.) Since I’ve been using Dex, I’ve been able to catch a low in its tracks before I’m able to feel the symptoms. This way I can only eat the 3 rolls of Smarties preventing the rebound high game.

 

I’m very fortunate to have my pump and Dex. They help me to manage this “Daily Guessing Game” in a more productive manner and I’m very grateful for this. I’m also very fortunate to have an excellent endo team of people who keep me safe and are excellent at not placing blame when my numbers haven’t been good, high or low.

 

Enjoy the rest of the Memorial Day weekend and a HUGE thank you to members of our armed forces for keeping us safe!! I appreciate your dedicated service to our country. Thank you for that!!!

 

And, remember, TEST! DON’T GUESS!!!!

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My Favorite Things, Sunday 5/18, Blog Week 2014

I have thoroughly enjoyed my first foray into participating in Diabetes Blog Week 2014 & I can’t wait until the next one.

I have to admit, I’m a Kerri Sparling, Six Until Me, addict!! She’s the first blog I found after my diagnosis and she made me realize I wasn’t alone. So, I have to add her at the top of my list as my VERY FAV DIABETES BLOG. But I’m biased. I live in New England and also get my diabetes care in Boston, so how could I NOT like her.

Here’s a list of the blogs I’ve been creeping on. Life has been busy this week so I haven’t commented on any of them, but I promise to start!! Thanks to everyone for the great Blog Week posts!!

Karen, Bittersweet (I also knit, so she caught my eye.) Thanks for starting this wonderful project, Karen!

Everybody at Diabetes Mine.

Kelly at Diabetealiciousness.

George at Ninjabetic.

Christel at The Perfect D.

Rhonda at Fifteen Wait Fifteen.

As well as Scott Johnson & Scott Brenner!!!!

 

I could go on and on!! There were so many GREAT entries!! Please check out the list of participants at Bitter Sweet to check everyone out!! Thank you for reading my humble stories and opinions. I’m just hoping to let others know they’re not alone in this struggle!!!! Thanks for your support!!!!

And, finally, Remember, Test!!! Don’t Guess!! (I apologize, I can’t give exact credit to whomever first said that but it resonates with me so I pass it along to you!!! Thanks to the author. They are not my original words, but I say it to myself everyday!!)

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Saturday Blog Week Post 2014

011007These are my usual diabetes supplies. I’m sure most of you can recognize the supplies.

On the left is my Diabetes Triplets that I spoke about earlier.

On the right: My Pink Mio-23 inches, 6mm- My Medtronic’s reservoir- the blue clips for the beach or pool (couldn’t find any pink ones. I used to use blue and pink Mio’s but I’ve graduated to all pink!)- My alcohol and IV Prep pads- My meter check kit (Remember, I don’t use the word test. It psychologically damaging to me!! LOL!!!) My Accu Check Multiclix lancet replacements, and finally, my Dexcom sensor inserter in the package. These are my daily and sometimes weekly supplies that keep my healthy and help me manage my surgical, T1D.

The black case is wear I keep the supplies that I carry with my in my bag. It’s a make up case I found at Sephora.

009

tube feeding that keeps me healthy and makes my BG guessing game interesting!!

008 This is my new Favorite Book about dealing with T1D on a daily basis & how to live a fulfilling life. It’s called Shot, but Amy F Ryan. Check it out!!

 

Just a few things from my life with surgical, T1D. Hope you enjoy them!!

 

Remember, Test!! Don’t Guess!!

 

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Sorry but life got in the way!!

I’m sorry I got behind in my Blog Week 2014 posts. I’m going to use a wild card post & talk about a device that helps me manage from day to day. This is to replace the regular Friday post.

Actually, I consider my Medtronic’s pump & my dexcom a device team. I call them “Daisy & Dex”!  I know not very creative on the Dexcom name but Dex is so easy. Daisies are my favorite flower & my pump is my favorite tool (before the partnership with Dex came along), so it was an easy transition to calling my pump “Daisy”.

I use both of my devices frequently thruout my day to make my diabetes management much easier. As I’ve mentioned before, MDI was a nightmare for me. It’s so easy to glance at my Dex if I’m feeling a bit off , heading out for a walk or exercise or I’m planning on driving to see what my trending BG is. I NEVER drive without checking Dex nor do I exercise without a peek at Dex either. I always check with my meter too, so maybe I should call Daisy, Dex & my meter my Diabetes Triplets. I could never survive not knowing what my number means in the trending scheme of things!! (I haven’t named my meter, sadly! Any suggestions??) I’m a girl that perpetually follows the rules, so I never dose or treat based on Dex’s numbers, even though he’s very trustworthy!!

My sewing buddies whom I travel about an hour to see & spend time with, always ask what my BG is doing before I head out the door to travel home. They’ve gotten used to me checking frequently & are very involved in my management when we’re together. I LOVE them for that. Especially when we go away (Toronto anyone??!!) one of the girls carries my glucagon, Just in case. The girls also, have a good sense of humor considering my glucose management!! Like, they wanted to know what the difference between a normal, weird me is compared to a low glucose weird me!!! I really love that they care enough to ask me if I’ve checked my BG and equally important, if I’ve bloused for a snack that we indulge in on a regular basis!! (Thanks girls for all the LOVE!!!) Anyone for Smarties??!

So I guess my, my pump, Dexcom & meter help me manage from day to day, but the people that love me help equally as much. I’m blessed to be surrounded by the people I have in my life. Also, FYI, I can’t get a kiss good night from hubby unless I report my BG, the trend  & what I have done or am going to do about it!! Then I’m rewarded with my goodnight kiss. We’ve been together for 30 yrs this June, before and after T1D and I couldn’t be more proud of him (& my son!!)!!

Who in your life keeps you on your diabetes toes??!!

Remember, Test. Don’t Guess!!!

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Mantra-Blog Week 2014

Oooop!! I messed up!! Today’s post is supposed to be about a mantra we use, some type of pick me up. I don’t know where I got my last subject from, although it’s a good post, if I do say so myself.

My mantra is easy. Every day, I say Happy Thursday, for example, or whatever the day might be. This is because, no matter how bad yesterday was, today is a new day & we can start over with our best foot forward. starting with our best efforts toward a good day.

Hope you all are having a Happy Thursday!! And, remember, test!! Don’t guess!!

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A Diabetes Personal Success Story-Blog Week 2014

Happy Thursday!! Only one more day to go And we’ve made it thru the week!!!

I’m a new T1D, as I’ve mentioned before. Only 15 months into my diagnosis, but I’m proud of my ability to have adapted well to my insulin pump and then my CGM after having been on MDI’s, which I must say I HATED, so I had a little incentive to do well on the pump.

I was diagnosed the week of February 8, 2013 after my completion Pancreatectomy and we discovered my Islet Cell Transplant failed. I had been started on NPH & Novolog MDI but I hated them from the beginning. I knew about insulin pump from the from the get go but no one had mentioned switching. I think my endo team wanted me to get used to the beginning stages of testing and injecting before switching me to a pump. When I say I hated MDI, I mean I hated the inaccuracies of the sliding scale and not being able to correct for a high until the next scheduled injection which meant I went hours with a high BG without being able to immediately correct. I was scheduled for 8A-12P-4P-8P with NPH at 8 & 8 and Novolog at 8 & 4. I didn’t count carbs which meant I only treated the resulting high blood sugars and I could never be sure when my NPH was going to be absorbed so my BG’s were going up and down like a yo-yo. I felt like crap!! And thought, I can’t keep doing this!!!

I did a little research on insulin pump and when the recommended time after diagnosis was to start pump therapy. There didn’t seem to be a “set in stone” recommendation, so I decided to ask to switch, expecting an argument or a recommendation to wait. Surprisingly, my CDE gave me the contact information for my local Medtronic’s representative, which was my preferred pump company and I called as soon as I got home from the appointment. It was 7PM when I called and I got the representative and not his voice mail!! I was shocked. He made the necessary recommendations and I had my pump and supplies within a week. I was one happy camper!!!! (BTW, I got a purple pump)

After my Medtronic’s trainer came to my house (only because the endo’s trainer was on vacation) I started on a saline infusion right away and less than a week later on March 26, 2013 I started on infusing insulin into my pump. I was ecstatic!! It took about a month to get the settings right but I was thrilled with the freedom my insulin pump afforded me. I could sleep in and I could skip a meal or eat at a later time. My time, diabetes wise, was my own!! I did have to increase the amount of times I checked my BG but that was OK with me. With MDI’s I was checking 8A-12P-4P-8P, and with my pump I went to 10-12 times a day just to double check that my settings were correct. I’ve continued to check multiple times a day because my setting often need to be tweaked due to any number of factors. Plus, I’m a tad anal!!  I NEED to know what my BG is doing just to be sure I don’t  need to make a change. In my humble opinion, the insulin pump was the next best thing to sliced bread.

I made the necessary arrangements, including a number of insurance appeals, to start on CGM therapy. Being a former cardiothoracic ICU nurse, I’m all about numbers and using these parameters to tweak my diabetes management. I started my CGM on April 1, 2013 and have been going strong ever since. I did switch brands in March 2014 to get a more accurate CGM assessment of my BG’s and I’m very happy with the switch. I use my CGM numbers to make adjustments through the day with my diabetes management and can’t imagine my life without a CGM.

Luckily, I made the switch to insulin pump therapy and using a CGM seamlessly. I think this is due to the excellent trainers I’ve had and my AWESOME CDE’s and endo’s office. (FYI…my Diabetes Center is the place where the Bionic Pancreas was developed and clinical research studies are nearing the final stages.) I consider myself VERY lucky. My A1c is in a great range so I must be doing something right. (Please, God, Help me to keep it there!) Although, I’m still not happy with my post-prandial readings, so that’s what I’m working on now. Also, I’m a carbaholic so that explains some of my post meal highs and I’m working on that too. Truthfully, I don’t know how successful I’ll be at curbing my carb intake but at least I’m trying, which is all we can ask of any PWD!!

I have to say, I’m in awe of those PWD that choose to continue MDI & who do well with that therapy. I couldn’t have done it but my hat goes off to those that can. Good work!!

Whatever your method of therapy, my opinion is, as long as your trying your best, that’s all that counts. I feel we’re lucky in 2014 to have different methods of treatment available to suit our personal needs. And in my book, That’s Awesome!!

Keep up the good work & continue to try your best. We can’t ask for more!! And, remember…Test!!! Don’t guess!!

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What Brings me Down, Diabetes-wise, Blog Week 2014

Sorry for all of the posts today, but I want to catch up in my blog week posts.

Today’s post concerns our emotional health and what brings us down regarding diabetes. This is an easy answer for me…Bad blood glucose (BG) readings!! I know I shouldn’t assign emotional value to my BG readings, but I do. I really try to get what I call “My Daily Guessing Game” right. Remember, I’m new at this. I’ve only been dealing with type one diabetes (T1D) since February 2013, so only 15 months, so I see out of range numbers as a reflection on me. What did I do that it’s so high?low?? is a frequent, unrelenting question in my mind. And, I’m finding it hard to believe that I can eat the same things from day to day, count my carbs amazingly accurate (Calorie King is my frequent companion!! I even have the app on my phone) but my numbers can vary wildly!! WTH!!!!

Can you veterans of diabetes of any type, tell me if this goes away with experience?? I also find that I’m embarrassed by my food logs and my carbaholic ways when I have an endo/CDE apt (as I do Friday and I’m freaking out that she’s gonna think I’m a bad diabetic.

And to top all this self diabetes loathing that I can’t get my numbers right or curb my carbs, I’m an RN!! I should know better!! But in my defense, I went to nursing school in the mid-80’s and we were taught that all you had to do was follow a “diabetic diet, take your insulin and exercise and your numbers would fall into place”. WHAT!!!! Boy, have I learned that’s not the case!!! I even took a recent RN refresher course & the diabetes management thinking from a practitioners point of view puts all the responsibility on the PWD to maintain good control, whatever that is, and if the A1c or daily BG numbers are out of whack, then the patient is being “noncompliant”. Until I developed T1D, I believed this crap and I apologize to anyone I judged because of this false belief.

I’m trying to make changes in how I look at my BG numbers. I test an average of ten times a day, so I’m getting LOTS of practice, and my family and I now refer to my BG times as “checks” instead of “tests”, so there’s no concept of failing in the topic. Hubby is making a HUGE attempt at not reacting to a very high number. As in the implied, “What did you do?” And so is my adult son. I so appreciate their support in this new endeavor. They have been an amazing support to me in general as I learn to manage this “Daily Guessing Game” and I truly appreciate that support. Maybe someday, I won’t be so hard on myself when I get these CRAZY numbers that are so common even without a reasonable, theorized cause.

How do you consider your BG Checks?? Remember, Check, Don’t Guess!!

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Diabets poetry-Blog Week 2014

I’m not very good at poetry but I’m gonna try my best! Please bear with me!! Here goes:

 

Diabetes:

A bear.

Never ending guessing game.

Never perfect management.

But I try my best.

That’s all that counts,

for any of us.

Small victories,

that keep me positive.

Don’t define me

by my diagnosis.

 

 

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