#DBlogWeek 6 – A Year of Diabetes, In Pictures

Diabetes Blog Week

 

Click for the Saturday Snapshots – Saturday 5/17 Link List. 
Back for another year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.  ~ From Bittersweet Diabetes.

 

Well, I was attempting to embed a slideshow, but apparently that’s not allowed.  So, here, have a link:  Diabetes in pictures.

#DBlogWeek 5 – Diabetes Life Hacks

Diabetes Blog Week

Click for the Diabetes Life Hacks – Friday 5/16 Link List.
Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)  ~ From Bitter~Sweet Diabetes.

 

We’ve only been doing this diabetes thing for almost 14 months.  Most of the “hacks” I know I learned from other people from the DOC.  So I most everything I am going to share in this post are most likely not original ideas, so I don’t get to claim the credit for anything except being the one to pass on the information.

DLH #1 – The Site Change Baggie.  

This is one of my favorites and makes like SO simple, especially for the busy family on the go.  It will also be VERY handy when we are travelling this summer and Angelina is going to diabetes camp.

Displaying photo.JPGThis hack is super easy.  We get a big box of pump supplies approximately every 3 months.  Shortly after that box arrives I clear some space on the table and pull out the supplies.  I put one of each item (site, reservoir, skin tac, hollister remover, 2 tegaderms or IV3000) into a small pile.  I try to make as many piles at a time as I can easily fit on the table without them mixing together.  Then I just take a box of dollar store sandwich zipper baggies and put each pile in one then repeat the process until most of the supplies are bagged up like this.  Then I just put all the individual site change bags back into the box the supplies came in and put it in our diabetes supply closet.  I keep a small basket of these in our diabetes cart in the living room where we do site changes and refill that basket as needed (it holds about 10 site changes, or roughly enough for 1 month).  This works wonderfully also for those times that I get a call from Angelina’s school that something is going on with her site because I can just grab a baggie and go, knowing that I have everything I may need for the site change (except insulin) and won’t lose the wipes or tape in my purse or d-bag.    After we do a site change I put the baggies in their own little box in our d-cart and when the next shipment comes I reuse the baggies to cut down on waste.

A note about making these kits: I do not use ALL of the supplies to make baggies.  I generally try to keep some supplies lose for those times when maybe you need to replace the tape but the site is still fine, or maybe you get a low reservoir on day 2 and don’t need a new site.

Thanks to my friend Lisa for this idea.

DLH #2 – Opsite Flexifix tape

IMG_4847This stuff is awesome.  It does tend to leave a sticky residue like IV3000 (both are made by the same company – Smith & Nephew) but it is so versatile that I don’t really care.  We use this primarily with the Dexcom sensors since you are not supposed to put any tape over the actual transmitter.  It comes in a 2 inch or 4 inch size and comes on an 11 yard roll.  It seems to last forever too.  The taller roll in the picture we have been using for almost 4 months, compared to the smaller roll that I just got last week.  As you can see, even after 4 months of using it with the Dexcom there is still PLENTY of tape left.  The larger size runs around $25-30 on Amazon and the smaller size is about $18-20.  I originally bought the larger size thinking I was getting twice as much tape for only a few dollars more, but after doing this for a while I have discovered that it’s really nice to have both.  The paper backing and the top clear film that you peel off are both cut in such a way that if you cut the 4″ piece in half it can be difficult to remove the backing before applying it to the skin.  If you’re looking to save a few bucks and don’t mind the frustration then it can be done.  Either way, this tape lasts forever and is well worth the money.

I also have used this tape for another less diabetes related use (although probably equally as important!) and that is for placing over ID labels on Angelina’s devices.  There are waterproof, smudgeproof, yada, yada labels that you can buy (or buy a label maker) but they can get pricy, especially when you think of all the diabetes gadgets you may have.  So, I went the kludge way and decided to print my own labels on white address labels.  I paid $1 for a pack of 240 address labels, printed, placed on her various devices and cut a piece of flexifix to fit over the top of the paper label to help protect it from moisture, smudging, etc.

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DLH #3 – The T1D Card

I haven’t actually used these yet, but I have been working on them.  I’m sure most of us have heard tons of (sometimes annoying) questions or statements about diabetes that may not always be true.  And sometimes you just don’t want to patiently educate people, or it’s hard to do it without bitterness creeping in.  So, I decided to make up T1 Cards to hand to someone when Angelina or I don’t have the time or inclination to inform someone that no, T1 isn’t caused by eating sugar.  And that nothing “happened” to her arm… It’s a CGM (and then having to explain what a CGM actually is.)  I usually don’t mind explaining or educating others but Angelina is fast approaching that stage in life where she doesn’t want Mom talking to other people about her diabetes.  It’s not so much that she doesn’t want them to know… she just doesn’t want to talk about it, or overhear ME talking about it.  The T1 card is about the size of a business card and can easily be carried in a wallet, purse, pocket, etc.  The idea came from participating in a conversation with someone on an ADHD/Autism group I belong to.  Someone had mentioned that she had a fellow mom of a child with autism who was prone to very public sensory meltdowns and so she carried cards with her explaining that her child had autism and no, he really couldn’t control himself at all times.

The cards can potentially be a two-fold benefit for us.  1. because by handing someone a card, I’m not just blabbering on about Angelina’s diabetes.  2. I tend to go into WAY more detail about Angelina’s diabetes than is necessary with people who ask a casual “What happened to her arm?” when they notice her dexcom sensor.  I can usually see their eyes glazing over, but seem powerless to stop talking about it.  It’s important to me, I really want people to understand.

With all that said, and with my husband rolling his eyes and telling me I am a dork (Angelina loves the cards by the way and said she wants to give one to EVERYONE) here are the T1 cards:

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High/Low Week of July 4, 2013

Hi there! Welcome back! It’s Thursday, so time to share our high/low for the past week.

It’s been an interesting week since I last checked in.  We decided to go to Ikea on Friday even though I was expecting the phone call from our Medtronic rep.  I figured anything we needed to talk about I could talk about anywhere, I do have a cell phone.  It’s even smart sometimes, lol.  So I brought this pack of papers and training booklets with us, just in case we needed to go over anything in them while on the phone.  And then it came time for the call at 3pm so I started to head for the front door of Ikea, only to realize that my phone had 4% battery left!  So I stole borrowed David’s phone.  When the rep called I told her I needed to call her back from a different phone because mine was dying.  I didn’t have her contact information so I quickly dialed her number into David’s phone along with her 5-digit extension.  Well, I got a lovely message that they were currently experiencing issues with their phone system and it disconnected.  So, here I am, sitting on the lip of a planter outside Ikea and I have no idea how to call her back!  The phone didn’t show what extension I had dialed, only the toll-free number.  Luckily, my phone was still holding on so I quickly got into my e-mail and called the shipping rep I had spoken with when we first ordered the pump and asked if he could find out our local reps extension, all I had to go on was her first name though.  Of course, I didn’t just simply ask, I went into a whole drawn out explanation of the events leading to me calling him.  I think he must have felt sorry for me so he said he would find out and call me back in 5 minutes.  Meanwhile, David and Angelina had come out of Ikea looking for me and we decided to head back to the car int he parking garage up the block.  We got in the car and I plugged my phone into my car charger just in case the rep decided to try to call me back when she didn’t hear right back from me.

Instead, David’s phone rang and it was her.  Oh, happy day!  Apparently the shipping rep had IM’d her and gave her David’s number to call me back at.  Things were fairly smooth from there, except I had mistakenly thought she said we would be scheduling our pump training during that phone call.  Instead, she was asking me a bunch of questions to see if we were ready for her to put us in contact with the pump trainer who would then schedule the training.  At that point she gave the impression that we would hear from the pump trainer at the beginning of this week, so on Wednesday when we still hadn’t heard anything I was pretty ticked off.  Not only did we NOT do training this week, we hadn’t even heard from the trainer to schedule it!

To further aggravate my frustration level one of my fellow T1 moms from a local group I belong to posted about how her daughter had been to their endo that morning and had put in her order for her medtronic pump and they had training set up at their dr’s office for next week.  I think I went a little crazy at that moment.  Not at the mom, who I consider a friend, but the fact that “WHY CAN’T OUR PROCESS GO SO SMOOTHLY AND QUICKLY!?!?!”  Did none of these people realize how absolutely terrible things have gotten in our house?  Did I not sound pathetic enough whining about all of the issues Angelina is having (and in turn I am having because I don’t deal well with this kind of stress)?  Of course, the people at Medtronic know none of this.  And I haven’t said as much because I’m sure they don’t care, not really.  And it’s not their fault that I am a little manic about everything and can’t stand not being the one in control of everything.  Limbo is KILLING me.  Instead I have been stewing inside my head because I am powerless and I can’t stand it!

Meanwhile, Angelina has gotten worse this week.  The level of her meltdowns and shut downs over shots and D care have stayed about the same, but in a lovely (note sarcasm) twist her level of opposition and defiance is through the roof.  Did I mention she has oppositional defiant disorder?  Yeah, well , it’s evident this week.  We have been fighting with her about cleaning her room.  We were anticipating the pump trainer doing in-home training which means my house needed a major cleaning.  I have been doing a lot of my own cleaning (my dining room table is currently pushed into the living room because I’ve been meaning to steam mop the floor for 2 days) and Angelina’s only responsibility is picking up her room.  She has been doing every possible thing she can to NOT clean, even though she was pretty much on restriction until it got done.  So, she goes in her room and just sits or lays around and does absolutely nothing.  And every time I tell her she needs to be cleaning her response is “I don’t want to” with a huge attitude, and one day she even did this hands-on-the-hips-sticking-her-tongue-out thing that really just pissed me off.  I’m supposed to have at least 3 more years before she is a teenager, where is this major attitude coming from!?!?  David finally had enough of it last night when she smarted off to him about it and he gave her a spanking.  Her room got cleaned (for the most part) within 2 hours, minus sweeping – which I helped her with this afternoon.  However, she has just been pushing the boundary line about everything she possibly can, and I’m not sure if it’s D related and a control thing, or if it’s hormones, or if it’s just her being a little snot because she can and I’m totally effed in a couple years when she’s actually a teenager.

We went and ran some errands this afternoon and she had gotten this whistle toy thing in a Happy Meal (I know, fast food is bad) and we had to run into the bank and she insisted that she had to bring the toy in with her.  I wasn’t terribly opposed to it coming inside but I told her she better not blow it while we were inside.  Then I decided to make a pit stop at the dollar tree next door and she pretty much had the toy in her mouth blowing on it every 2 minutes.  Finally, I told her that I had told her not to blow it inside.  To which she replied “No, you only said I couldn’t blow it in the bank.”  And I told her she can’t blow it in the store either, and if she blew on it again I would take it away and throw it in the trash.  Not 30 seconds later she’s got it in her mouth again. Of course, it was quieter, but still in her mouth and making noise.  I told her to give it to me and she refused and said “I’m doing it QUIETLY, Mom!”  Because, of course, it doesn’t matter that I said NOT AT ALL, it only matters that Angelina is going to do what Angelina wants to do and everyone else be damned.  I took it away.  She pouted the rest of the time we were in the store.  When we left the bank she said “I hated that toy anyway.”  Anyone want a kid? J/k.

High?  After my near meltdown yesterday about not having heard from the pump trainer yet my friend who is getting trained next week passed along the trainers email address to me, so I was able to shoot her an email and tell her that we were ready and available and that I had done all the pre-training stuff and want to do training ASAP.  Like, last week.  Seriously, we could have done training last week and I would have been happy.  Well, after I sent the email my friend said that she talked to the person who is doing their training through their dr’s office and she had mentioned that we were still waiting and wondered if we could do training with them next week.  The person training them said it would probably be fine and she would speak to the person who was supposed to be training us to let her know.  I got an email this morning from the person who was to be training us, and she pretty much made it sound like they had been trying to coordinate this all along.  Which I am pretty sure isnt’ the case, since we go to a different dr’s office and as far as I know neither of them even knew that my friend and I knew each other.  But, whatever, the end result was that we are doing training next Wednesday, and we’re doing it with my friend and her daughter, who is 2 years younger than Angelina, which works out perfectly because Angelina’s not usually on the same level as people her own age.  She’s great with older kids because she is intellectually gifted, but she is socially immature so she gets along well with younger kids.  Most kids her own age don’t get her at all, either because she seems younger than them, or isn’t into the same things that they are.  Or because she’s smarter than them so she gets picked on for being different (not to mention that she is different because of her medical issues) because they can be intimidated by her intelligence.   I’m not saying she’s the smartest possible 9 year old, but her being smarter than her classmates  is something that was flat out told to us by her teacher at a previous parent-teacher conference when we were discussing issues Angelina was having at school.  There was a while there where I was worried that she might have Asperger’s because of her level of social unawareness, but she just doesn’t meet a lot of the diagnostic criteria, and she is super extroverted and uses sarcasm quite flawlessly (at times) which are some things I’ve learned you don’t generally see with kids that have ASDs.  We’ll just say she’s eccentric.

Anyway, tangent.  TL;DR – Frustrated, meltdown, craziness waiting around to set up training.  End result: frustrated, meltdown, crazy mom was a squeaky wheel and got the grease (aka: pump training scheduled).

I’m thinking about writing a book about Angelina’s life so far.  Would you read it?

High/Low Week of June 27, 2013

Well, it’s Thursday again.  This week’s high/low is pretty simple.  I managed to make several blog posts this week so you probably can guess what our high was.

High:  The Pump is here!  We are all super-duper excited about this.  I spoke with our rep on Tuesday and she is calling tomorrow (Friday) to get all of our pertinent information and set up our pump training so we can get this show on the road!  I am hoping next week I will be telling you our high is that we did training and Angelina is hooked up (even if it is just a saline trial).  I’m not holding my breath on that one though, although I have my fingers and toes crossed.  If we get training done next week, and start the saline trial then we should be done with it by her next endo appointment on July 25th and hopefully she can start for real by then.  In the meantime I have been having her “wear” her pump just to get used to it.  It comes in “demo mode” which means we can play with it, change the settings, give boluses (that don’t really put out anything, but does show how it works and then will calculate her insulin on board for us), use the bolus wizard to calculate the recommended dose, etc.

One thing about the pump that I am excited/curious to learn about what is referred to as the “sensitivity factor”.  Which basically means how her body responds to insulin.  How many points does her blood sugar drop with 1 unit of insulin?  Well, I have no idea.  So I read “Think Like A Pancreas” which has some complex mathematical formula that you’re supposed to do to get a starting point. (Okay, it’s simple division and multiplication, but still… I’ve done more math in the past 3 months than probably the entire year before that and my brain is getting fried.  I am not a big math person.)  I also know what her current sliding scale correction is, so I did the math and I checked it against her current correction scale and found a sensitivity factor number that closely matches both.  What I like is that I know what her correction scale is, and I can look at the bolus wizard suggestion and weigh it against that and know whether we are doing it right or not, lol.  Of course, I can’t give her 2.6 units in a syringe, but it kind of takes the guess work out of “Do I go up to the next full unit or stay at the half unit dose?”  It’s nice to kind of take the guess work out of it though.  And this way we are more familiar with how it works, etc before we even do the training.  I love how it breaks down what the insulin is going towards.  So, 2 units for food, 1 unit for correction.  I also love how it tells you the insulin on board, as that is something that is tricky when on MDI.  You would have to be Sheldon Cooper to remember exactly what time you gave the last insulin and how much should still be active at any given time to avoid stacking.  But, this makes it a little easier.  Someone should come up with a diabetes calculator that does what the pump does, except doesn’t deliver insulin.  To be used by people on MDI who still want to keep track of everything.  It shouldn’t be that hard in theory, right?  The technology is there, just take away the dispensary part of the pump.

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When I spoke with our rep on Tuesday she said she would be going over the contents of the box with us on Friday and discussing how to turn the pump on, etc.  I just kind of laughed and told her I already had the whole thing set up and we’ve been using it, just without it being hooked up.  Obviously there will still be a ton to learn, but most of what I have left to learn about it is going to be trial and error.  Like knowing when it’s time to change an infusion set if her numbers are higher than they should be.  And, of course, learning how to do a site change.  In theory I know how it works, and I’ve watched several Youtube videos, as well as the online training videos on the Medtronic website.  In practice though, I haven’t done it yet.  Angelina won’t let me put an infusion site on her until it’s actually time to hook up.  I asked if she wanted to do one on me, which she said no to.  However, she said she would do one on Daddy.  Daddy wasn’t interested, lol.

So, the low for this week:

Monday David decided to stay home from work.  The month of June is always super crazy busy at his work and he worked almost 3 weeks straight without a day off.  Last week alone he worked 96 hours.  He also came down with a cold last Friday so when Sunday was over (last day of the quarter) he told his supervisor he was taking sick time on Monday.  We decided to go out for lunch and Angelina wanted pizza.  If you’re a t1 parent you know what pizza means.  If you’re not a t1 parent, let’s just say that pizza is just one of those foods that T1 parents dread, lol.  Pizza tends to have a pretty high carb count, but more than that it has a lot of fat in it so it tends to absorb more slowly and often ends with really high BG spikes a few hours after eating it.  It’s such a pain because it has an initial spike in BG, just like any carb containing food, but then it really spikes later.  The later spike usually occurs after the fast-acting insulin has already peaked (which happens about 1 – 1  1/2 hours after taking it) meaning there isn’t a ton of insulin working hard to counteract those carbs and it’s more of a trickle after that 90 minute mark, while the pizza carbs tend to flood at about that time.  So, when Angelina said she wasn’t sure how many pieces of pizza she wanted and asked if she could take her insulin AFTER eating, I said fine.  Her blood sugar was in range so I wasn’t too worried about her getting too high before the insulin started working and I figured it could only be a good thing if it peaked a little later since I knew the pizza would.

Well, what happened is Angelina ate her pizza, I drew up her insulin and she refused to take it.  This was after eating 80-100 carbs worth of pizza.  She decided to crawl under the table and curl up in the corner on David’s side of the booth.  David decided that he wasn’t going to play games with her and told her she was getting her shot whether she cooperated or not.  Normally I would have tried to talk to her, maybe offer a bribe, but she just totally flipped out and started kicking and yelling and he was just done. D.O.N.E.  So he caught her arm, held it as steady as possible and gave the injection.  Then it was time to go and she wouldn’t stop having her meltdown so he just picked her up and carried her out to the car.  She was not happy, at all.

About halfway home he finally says “Angelina, Mom and I love you very much and we want you to be happy. We’re not trying to control your life.  We’re trying to keep you ALIVE and healthy.  Because if you don’t take your insulin, you could die.  And what kind of parents would we be if we just let you die because you were being stubborn and didn’t want to let us take care of your health?  This isn’t a choice.  You have to take insulin whether you like it or not.  We don’t like it either.  And we don’t like fighting with you about it.  But we will do what we have to to make sure that you’re safe and healthy.  Because if we don’t, you could die.”  Now, I know what you’re thinking.  That’s a little harsh, she’s only 9.  I felt the same way.  Until 2 minutes later when she said “You’re right.  You’re just trying to take care of me because you love me.”

I’ve read recently that this generation of kids with diabetes aren’t likely to see long term complications and that it’s unwise and unhelpful to tell them they’ll have complications in their 60’s if they dont’ take care of their diabetes now.  Because, seriously, I’m a lot closer to 60 than my kid is and I still do stupid stuff and don’t take care of myself and that could have a negative impact on my health later, but right now I’m just living life.  So, I can understand that a tween or teen is even less interested in what might happen when they’re older.  And talking about diabetic coma or death seems to be taking it a little far, but those are very real and could be very immediate consequences of not taking care of it.  Or at the very least a hospital stay with DKA and just being very sick from that.  Angelina’s had enough hospital experiences to know she doesn’t want more if it can be helped.

And then I read in the past few days about 2 seperate cases of parents being prosecuted for murder and neglect for not taking care of their kid’s diabetes.  In one case the parents refused to seek medical care for their child, who was obviously very sick, and opted instead to pray over their child, who eventually died.  She was in DKA.  She had never been diagnosed with T1, but that is what the diagnosis was after she died.  Most parents would have taken their kid to the dr or the ER.

In the other case, a woman has been charged with gross negligence and her child is currently hospitalized and not expected to live.  Apparently the child had known T1, but the mother wasn’t giving insulin and hadn’t checked the child’s blood sugar for around a week prior to the child being taken to the hospital because someone else called 911.  The article I read didn’t have a ton of details as to why the mother wasn’t giving the child insulin or checking their BG.  It did state that the mother had asked for a ride to the pharmacy to pick up some insulin on the day that the roommate called 911 and the child was taken to the hospital.  It’s just so very sad.

I’m so afraid of someone trying to call child protective services on us because Angelina is causing a scene in a restaurant (this wasn’t the first time, unfortunately.) and we end up having to restrain her to give her insulin.  But then I read things like the above and I just feel like I would rather “get in trouble” for doing what needed to be done rather than my child getting sick and possibly dying because I did nothing.  And isn’t it messed up that I even have to worry about any of that?  That if I provide medical care against her will I risk being accused of abuse, but if I don’t I risk being accused of medical neglect?  I just wish things could be simpler.  I am hoping the pump helps.

It’s Here!

Angelina’s purple pump has arrived!  It was shipped out on Thursday and was supposed to be arriving tomorrow (Tuesday).  However, I have a busy day tomorrow and wasn’t sure if I would be here to sign for it.  We certainly couldn’t wait until Wednesday for UPS to re-deliver so I opted to pick it up from their customer center.  It’s only about 10 minutes from my house and I got to choose when I wanted to go get it.  Which, of course, was as soon as possible!  So, imagine my excitement when I noticed last night that the package would be arriving TODAY instead of tomorrow!   I did not sleep well at all last night and must have woken up at least 5 times.  I finally gave up and got up for good around 7:30am to be at the UPS place by 8:00am when they opened.  I maybe ended up getting about 5 hours of sleep last night, lol.

Anyway, I came home with the box and went in to see if Angelina wanted to come open it.  She seemed totally uninterested and said I could do it.  Then she rolled over and went back to sleep.  David is home today as well, and as of right now they are both still sleeping.  It’s 10:30am.

So here’s what we got in the magic box:

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Purple Medtronic Minimed Pardigm Real-Time Revel 723:

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New Bayer Contour Next Link Blood Glucose Meter.  This thing is pretty cool.  It communicates with the pump by sending her bg reading to the pump to help calculate correction insulin doses. Also, infusion sets and reservoirs.

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Here’s the pump box:

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And just for shiggles, here is the very poorly sewn pump pouch that I made her.  I am still working on perfecting my machine sewing technique. She loves it though, so that’s what counts right?  Who cares if I can’t stitch straight!

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