The End.

The end of the school year is upon us, Angelina’s last day is June 19.  This is not only the end to a horrendous school year, but also her last days as an elementary student.  When she started fifth grade we expected her to be attending elementary for fifth and sixth, but apparently the school district decided that all of next year’s sixth grade students would now be attending middle school, or transferred to some of the K-8 schools in the area.  I have mixed feelings about this, first because I thought I had another year of my child still being a child, and something about her graduating to middle school a year earlier than expected makes me feel apprehensive about the years to come.  I know that it shouldn’t, since regardless of what school she goes to, she is already sprouting like a little flower and no longer resembles the little girl she was a year ago.

I haven’t quite decided if it was the start of her metamorphosis that triggered the start of her life with diabetes, of if perhaps it was the insulin that she was lacking before diagnosis, that she now gets externally, that kept her from sprouting sooner.  I doubt I’ll ever really know, and regardless it’s irrelevant because it won’t change the fact that it’s happening.  It doesn’t stop me from wondering though.

I digress.  The point of all this is not that I now am living with a ‘tween, but the fact that I am apprehensive about what next school year will bring.  We’ve had some less than stellar experiences with her school this past year, partly due to her diabetes, and partly due to her behavioral issues, which are often exacerbated by her diabetes.  Anyone who’s ever seen their normally sweet tempered child have a total emotional meltdown with a high or low blood sugar know what I’m talking about…  but with Angelina, those behaviors are a dime a dozen when her blood sugar is NORMAL, they are exponentially worse when blood sugar levels are not where they should be.  I’ve explained this a million times, but the teacher asked the school nurse who said “No, that’s not blood sugar related.” and now Angelina gets punished for  behaviors she hasn’t learned to identify as high or low blood sugar, and no one seems to understand that treating the blood sugar issue will help treat the behavioral issue.

So here’s where my fear comes in…  I don’t know what to expect of middle school.  I know earlier this year when I asked for more independence for Angelina in the form of testing and treating in the classroom I was told “We usually don’t do that at the elementary level.  Maybe next year when she’s in middle school.”  or “She hasn’t shown that she’s responsible to check herself unsupervised and her teacher isn’t trained.” (An aside here… I offered SEVERAL times to give her teacher even just BASIC training and she refused saying “It’s fine, she can go to the office when she needs to.”  Nevermind that when Angelina requests to go to the office and it’s not a “scheduled” time her teacher tells her no or to wait until it’s more convenient for the class.  Hello!?!?  Basic diabetes training would tell you that DIABETES DOES NOT WAIT UNTIL IT’S CONVENIENT.  If she says she needs to go to the nurse, she needs to go to the effing nurse!)  I’m worried about teachers next year who will only have her part of the day and probably not communicating about what’s going on with her… and her being her getting upset and again being seen as a behavioral problem student.  I want her to be more independent, I want her to be able to text/call ME for advice and to relay what is going on during the day, but her current school said she’s not allowed to do that.  Will middle school be different? Or will they see a cell phone as a cell phone and again screw things up because they can’t separate Angelina from her diabetes from her ADHD/ODD and resultant behavioral issues?

I’m hoping that new school=clean slate, but at the same time that means that all the staff, teachers, administrators are new to her and don’t know how she works.  I wanted to home school her next year, but that has been put on hold.  And, if I’m being honest, I don’t really want to home school her, I just don’t want her to be in regular school anymore.  I don’t have the patience and the tenacity to be home with her 24/7, let alone spending several hours of each of those days trying to “do school”.  I have this illusion that we could make it work, but I think it may be just that- an illusion.  So, instead I am stuck in a less than favorable position of watching someone else be frustrated and impatient with her, potentially putting her in danger because they don’t understand her medical conditions, doing emotional harm to her because they don’t understand that she’s not a “bad kid” she just has “problem behaviors”.

She’s such a beautiful person and I don’t know what the right answer is to get her to adulthood and for her to be educated without losing the good person that she really is.  I feel like public school is crushing both of our souls.  I feel like her staying home with me wouldn’t necessarily be a better option.

All of this pondering on screen is a poor attempt to review her 504 plan and ready any changes that I think she will need for next year.  And it crushes me to know that the school will likely agree to the accommodations, and it scares me that we will have a repeat of this year, where everything is agreed to, but the teacher(s) don’t seem to read or follow it without many reminders… often that come AFTER some vital accommodation was previously not followed.  I feel like throwing in the towel. but in this fight, I am her voice.  I am her advocate.  I am the one who knows her and her needs more than anyone else, and I am the one who has to make sure those needs are being met.

I am a d-mom, hear me roar!

#DBlogWeek 7 – Hi, My Name Is Dexcom…

And I am in an abusive relationship.  There. I said it. I know, I know, it’s so cliche, but I love her.  She rocks my world!

My girl, well, she’s great.  Her mom is okay… but demanding.  Like, for instance, I’m trying to sleep at night and this lady just wakes me up like it’s not a big deal.  Seriously? Lady, if my girl has a problem, I will let you know!  I watch her when she’s sleeping, even when I’m sleeping.  I got this.  Go back to sleep already.

Of course, my girl doesn’t always pay attention to me, even when I try to tell her that something is going on.  She just pushes my buttons!  She just straight up ignores me even when I’m screaming at her that something is wrong.  Okay, so, I get it, I’m not always 100% on top of things, but I’m trying here!  And I rarely scream at her that something is wrong if it isn’t really.  I mean, there have been a few times where things just weren’t right and I missed it.  Man, was her mom pissed!  Here I thought I was giving them a break by not screaming my head off.  My girl was just so tired and wanted to lie down, so I told a white lie and said she was fine.  It turned out okay in the end, right?  I just don’t understand why her mom has to keep rehashing ancient history.

And, seriously, her mom has this almost stalkerish need to take my picture and put it on facebook.  Like “Look what Dex did.”  “Look what Dex said.”  I sometimes think my girl’s mom loves me more than my girl does, but it’s just not healthy, ya know?  Especially because she is always telling people what I did wrong.  “Dex has had ??? for 2 hours now. I am so frustrated!”  Well, lady, don’t be pushy.  I get confused sometimes, and I don’t want to lie to you or my girl, so I plead the 5th.  Give it time, I usually figure things out… eventually.  And maybe, just maybe, if you actually put my new contacts in every week instead of making me wear them for longer I might not get confused as often.  It’s hard to keep things straight when my eyes get the occasional floater in them.  I still tell you pretty accurately what’s going on with my girl when I’m not confused.

Anyway, I have to go.  My girl’s mom is getting antsy because I’m writing this instead of paying attention to my girl and her mom isn’t getting any data right now.  Don’t worry, Mom, she’s fine, she’s just laying on her arm right now. I’m still watching.

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Diabetes Blog Week

Click for the Tell Me a Story Wildcard Link List.

#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.

IMG_4671-001

 

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:

Fullscreen capture 5162014 93227 AM

 

#DBlog Week 4 – Diabetes Mantras or What I Tell Myself When Things Aren’t Going As Expected

Diabetes Blog Week

 

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we’ve done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.) 

From Bitter-Sweet Diabetes

 

There are several common phrases that you will hear in the diabetes community, specifically in relation to blood glucose readings and not placing a values judgment on them.  Some of my favorites are “Check and correct.”  and “It’s just data” – both in reference to numbers that fall outside of the sometimes very narrow and hard to hit target of “in range” especially when you are attempting to control the glucose levels of a child who sometimes (usually) has their own agenda when it comes to food, activity, stress, etc.

It can be stressful to see numbers that are consistently out of range since the target range is not there to mock us, but to minimize the change of developing either immediate health issues, as with low blood sugars, or complications that can come later in life from high blood sugar levels that can effect anything from the eyes, kidneys, heart, or the nerves to name a few.  While today’s current technology and faster acting insulins can greatly help reduce those risks, they do still exist especially if you are not diligent about managing said numbers.

And of course, with raising a child with diabetes it is sometimes a tight rope walk of watching what you say and how you react to seeing numbers that fall outside of that small target.  Children learn from watching us and don’t have the brain development and cognitive ability to determine whether mom panicking over a 350 blood sugar and asking if they ate anything is just concern or an accusation.  Especially when such high (or low) blood sugars can cause mental fuzziness or other feelings of not feeling well to start with.  It’s easy to see how a child could take a question like “Did you eat something and not tell me or bolus?” and interpret it as “You did something wrong.” and take it personally.  I know I am guilty of often asking Angelina “Did you eat something and not bolus?” when I see high blood sugar readings.  It almost always makes her defensive.  But, the reason I ask is not to accuse her of something, but to start the process of determining the next step to take and worrying about how worried I should be about a 350 reading.

If it was in fact that she ate something and forgot to bolus then it’s probably fine to “check and correct” and put it out of my mind until the next time she’s due to check her blood sugar.  But, if she didn’t eat anything, then a 350 blood sugar may be a signal of something else going on.  It could be anything from an infusion site issue, bad insulin, impending illness, stress, growth hormone, etc.  I would take further steps to investigate if no food was consumed such as checking the infusion site for any signs of an issue or perhaps changing out the insulin.  I would also probably check for ketones to make sure that there is insulin in her system.  If it was simply she ate some chips and didn’t give insulin then it’s not as urgent to check for ketones.  It’s more a matter of determining what is wrong, rather than something that was done wrong by the child.  But, those nuances are often hard for children to understand, even when you explain.

Another saying “It’s just data” ties into this as well.  Those numbers are just data that indicate what the next step should be, if any need to be taken.  It can be difficult to suppress the emotion that an unexpected reading may cause, but reminding myself (and Angelina) that it’s just data helps.  But really, that’s all a blood glucose reading is: data.  An in range number tells me when and how much to bolus if it’s meal or snack time.  Below range numbers tell me we need to either watch and wait, or take action.  Above range numbers tell me the same, depending on when they occur.  Fortunately Angelina’s dexcom does help us avoid some surprises and attempt to take action before it gets to a critical level, but not always.  We recently have had a few times where the Dexcom was reporting in range numbers, but Angelina was acting strangely so a fingerstick was taken only to discover that her actual number was dangerously low despite the rosy picture painted by her CGM.  These instances are few and far between, but they do happen.

It can be hard to suppress that urge to wonder out loud “what happened?” when the result is unexpected.  I certainly didn’t expect to see a 34 mg/dL reading on her meter a few weeks ago when she decided to take a nap in the middle of a Sunday afternoon.  But then a diabetes-trained brain kicks in and says “Okay, what’s the next step?”  in this case it was trying to wake her to drink some juice.  It just goes to show that diabetes is unpredictable and sometimes the nuance can be more telling than the data.  It’s important to look at all the data, not just the numbers.  Odd or out of character behavior or emotions can be signs that something is going on, even if a number on the meter says things are peachy.  It’s important to be tuned in to your or your child’s “signs”.  It’s also important to remember that sometimes we/they are just people who experience emotions and odd behaviors that have nothing to do with diabetes, just like any one else.

#Dblogweek 3 – What Brings Me Down

dblogweek

 

Click for the What Brings Me Down – Wednesday 5/14 Link List.
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

from bittersweet diabetes

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Well, I just have to say that May being mental health month was something I was aware of long before diabetes entered our lives.  I try to stay away from talking about my bipolar on this blog, because, well, this blog is supposed to be about diabetes. And plus, I have a whole other blog dedicated to my journey with bipolar (Which has been sadly neglected the last year or so).

But, I feel like today would be an okay day to blog about my bipolar and our family’s overall mental status in regards to T1D.  It’s been over a year now since Angelina’s diagnosis and I feel like we are in a good place.  I’ve made being a diabetes expert my life’s goal (joking, sort of.) and even being relatively newly diagnosed, I am quickly reaching expert status.  Angelina’s endo actually called me an expert at her check up two weeks ago, that was weird, but made me feel all warm and fuzzy inside.  Part of my mental issues are that my version of reality is something grossly WRONG compared to other people’s.  I tend to question and second guess myself often because of this and then swing wildly the other way and believe that I know better than almost anyone else.  It just reminds me of the totally cheesy 90’s commercial for Sure Deodorant.  Anyone remember those?  That is me on a daily basis, except I’m not worried about damp armpits.

 

So, I come off being either totally arrogant, or neurotic and wishy-washy.

On another note, bipolar and diabetes have a lot in common.  When you’re out of your “normal range” you may act oddly and have little control over it, you may be cranky and irritable, you may want to just lie down and sleep all day, you may want to eat everything in sight, or maybe not ever eat anything ever again.  You may realize that you are high or low and try to do something about it, only to find yourself plummeting dangerously in the opposite direction, seemingly spinning out of control.  Or, you may not recognize when you are high or low until someone else points out that you are acting strangely.  Sometimes highs or lows (blood sugar or moods) happen for no apparent reason and may stick around stubbornly despite your best efforts to try to control them.  Sometimes you get stuck in a rut and just give up on trying to control it, despite the consequences.  Sometimes you put in no extra effort and things are wonderful.

Moods and blood sugars can both be affected by: food, hormones, stress, exercise/activity, weather, medications, illness, other medical conditions, changes in routine or sleep, your support system (or lack of), proper professional support (dr, therapist, etc) and education.

Both conditions are subject to being misunderstood and stigmatized by the general population.  Both conditions are often the brunt of jokes or flippant statements that are only loosely based in fact, if at all.  Neither condition has a cure.  Both conditions are very serious and require intensive management and treatment to avoid immediate and future complications.  Both conditions are prone to not be taken seriously unless you have them or are very close to or a caregiver for someone who has either of them.

On the other side of that coin, they are different.  T1 has a very medically measurable physical cause, bipolar doesn’t usually.  T1 is more physically painful with all the pricks and pokes and is often more publicly visible.  Bipolar is more mentally and emotionally painful and often is “invisible”.  While T1 is a physical disorder and bipolar a mental disorder, they both effect the mental and physical side of a person.  Neither are easy.

#DBlogWeek 2 – poetry?

I was thinking of writing my poem in iambic pentameter a la “10 Things I Hate About You” but I haven’t written in iambic pentameter since high school and we’ll just say it’s been more than a decade, so bear with me.

 

I hate the way you make her high,

and the way you make her low.

I hate the way you take our sleep,

I hate it when she knows.

I hate your stupid needle pricks

and the way you make her bleed.

I hate that sugar is n0t a want,

but since you, it’s a need.

I hate the way you’re always here,

I hate that you won’t leave.

I hate it when you make her cry,

even more when you make me grieve.

I hate that we may never know,

how to get you out of our life.

But mostly I hate

the way you have changed us,

for the better,

despite all of the bad times,

and the sleepless nights.