Day 13 - Something Taboo - Dead in Bed Syndrome

Today's prompt is to write about something Taboo.  I want to write about something called Dead In Bed Syndrome.  I consider this taboo because I don't see it written about very often.  We don't talk about it very much, unless we hear of someone who has died, due to Dead in Bed Syndrome.  When Kortnie was diagnosed, I wasn't warned of this, the doctors and nurses we've seen have never mentioned it.  I found out about it maybe a year after diagnosis, once I'd joined some DOC online groups and made some online friends. 

Dead in Bed Syndrome is defined as...

Someone with type 1 diabetes is found dead in the morning in an undisturbed bed after having been observed in apparently good health the day before. No cause of death can be established. This is the typical situation of the "dead in bed" syndrome, a very tragic outcome which leaves the family with many unanswered questions: Why, when, how, could it have been avoided?

I have heard of it happening more times than I care to count since I've heard about this.  Usually if you see a blue candle burning on my Facebook page, someone has passed of this, and I don't light my blue candle every time either. 

 

 

Dead in Bed Syndrome, this is why I try to check Kortnie's blood sugar at night.  I wouldn't go more than 4 hours during the day without checking her blood sugar, so I check it at night too.  There are times when I've caught a low and had to sleep feed her juice or smarties, or when I've caught a high and had to give her more insulin.  There are times when I've slept through my 2:30am alarm or when I've turned off my alarm clock and not gotten out of bed, but I usually still end up getting up around 3:30 or 4am and going to check her anyways. 

 

I am not saying that everyone with a Diabetic kid should get up and check the kid in the wee hours of the morning.  That's just what I do, and Dead in Bed is one of the reasons why.

 

I don't know if I will do this for as long as she lives at my house.

 

I don't know when I'll expect her to do it.

 

I don't know if when she is in college I'll still get up and call her and tell her to do it.

 

I don't know if when she's married if I'll expect either her or her husband to do it.

 

I don't know.

 

Today, totally random, in the middle of the afternoon, her blood sugar was 36, she didn't even feel it.  I noticed that she looked kind of pale and glassy eyed and was acting kind of funny so I told her to go check.  Thirty.Six!  That is way too low, anything under 80 is too low.  There was no rhyme or reason to it either.  She has been 31 and 29 before and not felt it.

 

I am not sure if she'd wake up if she was low.

 

What if she went low like that in the middle of the night, just because Diabetes is fickle like that?  And didn't wake up to have some juice. What if she didn't wake up at all?

 

I don't know, there are too many what if's. 

 

I don't talk about this, I talk about how Diabetes sucks, how it is weird, how it is expensive, how it is fickle, how it is hard, how it makes us strong.  But, I don't talk about how it scares me.

 

 

Diabetes Fact of the Day

6% of deaths in Diabetes patients under the age of 40 are due to Dead in Bed Syndrome.

 

6% is relatively small, but I don't want to be in that 6%, I don't want anyone to be in that 6%.

My favorite Health App/Device/Book is...

Today's prompts for NHBPM are Call BS on something, or review your favorite Health App/Device/Book. 

I can't think of anything to call BS on that I haven't already talked about this month.  Mainly misconceptions and myths.  I've already talked about those here and here.  I am sure there are other things to call BS on, when I think of them I'll save it for another blog post later.

I'll tell you about some of my favorite things that help me and Kortnie all of us take care of Kortnie.

1.  The Calorie King book.  We got one of these at the hospital, it is awesome, it has carb counts (and calorie and fat counts) of all kinds of food.  It has a restaurant section, and it also has specific counts of actual brand name foods, or a general count of something.  It has fruit, vegetables, nuts, baked goods, and drinks.  It also has counts for something like a tablespoon of flour or sugar or what not.  Love this book!  There is also a website http://www.calorieking.com/ where you can type something in and search for it and it will bring back choices for you.  So type in something like Wendys Frosty and it will bring back a bunch of options from small vanilla frosty up to large chocolate frosty with whip cream.  I hear there is an app for it too, but I don't have it on my phone, but I do go to the browser on my phone and look up the website quite often.  I have one of the books in my kitchen and in my car.  It makes SWAGing easier (Scientific Wild Ass Guess).

2.  Rufus, the bear with Diabetes.  We also got him in the hosptial, he came with some syringes so Kortnie could practice giving him shots.  See the colored patches on him, those are the places you can give yourself shots, the arms, legs, and belly, the red patches on his hands are where he pricks his fingers.  He comes with a JDRF t-shirt and ours had a medical alert bracelet on him too.  3 years later, Kortnie still sleeps with him and takes him places.  He is just a teddy bear, but he's a teddy a bear with Diabetes, just like our kids.  All the little Type 1's seem to love their Rufus. 

 

3.  Diabetic Barbie this little girl Emma wanted to know why there was no Barbie with Diabetes, so her mom helped her to start up a campaign to make it happen.  Now they are making their own accessories and selling them with the proceeds going to various Diabetes related charities and organizations.  She makes insulin pumps, meters, syringes out of clay, she also makes mini pump pouches and walk t-shirts.  She makes them to fit Barbies, American Girls, Rufus, Lenny the Lion (Medtronic mascot-an insulin pump maker), and other stuffed animals.  We were lucky enough to win a drawing and got Rufus a pump, meter and pump pack.  Here is Kortnie showing off her Rufus and his new purple pump, and her pink pump.  She was very excited, now Rufus can have a pump and not have to have as many shots!  If you have a diabetic kid, go check out the Diabetic Barbie Facebook Page, these pumps and accessories can be made in any design, they are not just for girls, if you know a little boy with Diabetes, she can make him a kit for a stuffed animal or for a Rufus or Lenny, or a Ken doll.  If you don't have a diabetic kid in your family, go like her page anyways, the more likes, the more Mattel will take notice. 

 

4.  A fun test kit, Kortnie uses this one, it's a Sugar Bag from Sugar Medical Supply.  It holds her meter, her poker, a vial of test strips, and has a zipper pocket where she can put a couple rolls of smarties, and a unzippered pocket we can slip in a name and emergency card, and a few dollars if she wants, or a log book, there is also a strap for a pen-needle or syringe, and a vial of insulin.  The outside of the case has a pocket where you could slip a phone in too.  She keeps all her testing stuff in there and carries it either by itself, or in her purse, or her backpack for school.  It is cute and fun and not boring black.  Again, it's not just for girls, there are designs for women, boys, and men.  This is just the one she picked out.  She has had it for a little over a year and it is wearing out, so I have ordered a new one in a different design to give her for Christmas.  Even though it is wearing out, I still feel it is good quality, after all she has used this daily for over a year, and she opens and closes it and gets stuff out of it about 10 times a day, and she is 8 years old, so you know this thing has been thru the wringer. 

 

 

These are just a few of the things that make our diabetic life easier and funner.  I have not been asked to review any of these items, I get nothing for saying such nice things, just wanted to share a few things that we love. 

 

Diabetes Fact of the Day

People with diabetes are at greater risk for depression.

Poor diabetes control can cause symptoms that look like depression.

At any given time, most people with diabetes do not have depression. But studies show that people with diabetes have a greater risk of depression than people without diabetes. There are no easy answers about why this is true.
The stress of daily diabetes management can build. You may feel alone or set apart from your friends and family because of all this extra work.
If you face diabetes complications such as nerve damage, or if you are having trouble keeping your blood sugar levels where you'd like, you may feel like you're losing control of your diabetes. Even tension between you and your doctor may make you feel frustrated and sad.

 



 

Humanitarian Missions-Honoring our Vetrans Day 11

Today's prompt in the Wego Health NHBPM is write about your favorite thing this is not health related, but likely improves your life.

Well, it is Veteran's Day today, so I will write a little about the Military, the men and women who serve now and the Veterans.  I guess the military couldn't quite be classified as one of my most favorite things, but it is  they are, something I respect. 

We live in a great country where our young men and women get to choose whether or not they want to serve our country.  There are so many places in our world where people are forced to serve their countries.  I am forever glad that we live in a place where we get to choose.  For those who do choose to serve our country by joining the military or the national guard, I am thankful for you too. 

My dad, 2 of my uncles, all 3 of my grandfathers, some of my cousins, my husband's grandfather and brother, and many, many friends of mine have served or currently are serving now.  I believe my life is improved by the military who protects my country and my freedoms.  I also believe the live of my kids are improved, as well as the lives of countless others all over the world.

I'm gonna turn it back to medical now, not only do our military members protect us, they perform countless humanitarian efforts in the name of the US, the deliver medical supplies, food, water, and assistance all over the world, the people who receive and benefit from these deliveries would likely tell you their life was improved by them.

My dad, is my most favorite Vetran, One of the stories I remember most from when I was growing up a military brat, is from a time when we were living in Guam, my dad served as a Chief on the USCG Basswood,
Basswood has taken part in many notable missions since her commissioning and while being stationed in Guam . In addition to her primary mission of aids to navigation, she also participates extensively in maritime law enforcement missions, search and rescue cases and marine environmental protection. During her tour on Guam, Basswood has been the driving force of PROJECT HANDCLASP, a U.S. Navy program that provided health care and humanitarian relief to the farthest outlying islands of the Pacific Ocean . Basswood's participation in this program has allowed her to travel to virtually every island or atoll in Micronesia .

There is no finer example of devotion to duty than through Basswood's display of dedication to the aids to navigation mission. She was responsible for maintaining all federal aids to navigation in Micronesia . This area of responsibility was roughly the size of the continental United States . It included over 100 fixed and floating aids in Guam , the Commonwealth of the Northern Marianas Islands (CNMI) and Kwajalein Atoll. Basswood was also responsible for the aids in Subic Bay, Republic of the Philippines , prior to the closing of the U.S. Naval facility there in 1992. Basswood also worked the aids in Palau , Hawaii , and along the West Coast

 

I remember him going on missions to the atolls in Micronesia, to Kwajalein, and to the Philippines.  I remember him coming back and talking about delivering supplies to the Peace Corp workers on the atolls.  Places where there was no electricity, refrigeration, or telephones.  People lived in grass huts and often only wore grass skirts and nothing else.  Sometimes, the USCG guys would bring clothing that their own kids had grown out of and trade it with the islanders for some of the things they made like coconut soap and carvings.  He brought back pictures and told of how the people lived a simple life.  They would moor their ship a ways away from the atoll (small island) and take little speed boats up to the shore to deliver the supplies.  He told us of how the kids would get so excited and one time they got the grand idea to bring coolers of ice onto the island to let the children play, they had never seen ice or felt cold before, could you imagine?   I am proud to know that my father served such important missions, they may not be the MOST important missions in protecting us and our freedoms, but to me, humanitarian missions are just as noble and wonderful as protection missions.  Yes, humanitarian military missions is one of my favorite things. 

My favorite Vetran

 

3rd Platoon Bravo delivering medical supplies in Baghadad

Delivering supplies in Kirkuk, donated by the World Health Organization (WHO)

Medical Supplies going to Haiti after the Earthquake

Military Police teamed up with Iraqi Police to deliver medical supplies to Basra, this little girls smile says it all, her life was improved this day.

National Guard delivering medical supplies in Cambodia

Getting ready to air drop medical supplies in the South Pole

There are so many more pictures of our military men and women delivering medical supplies all over the world if you look around the Internet. 

 

 Check out the Who Diabetes Program and definitely go do the Big Blue Test, help these organizations get the funding to get medical supplies gathered so that our military can deliver them. The Big Blue Test is the easiest way to help.  You don't need to be diabetic to do it, just log some activity and bam you help them get one step closer to meeting their goal of raising $100,000 by November 14, 2012, which is World Diabetes Day. 

 

 

 

 

Learn more about World Diabetes Day here

 

 

 

Diabetes Fact of the Day

 

347 million people worldwide have diabetes¹.

In 2004, an estimated 3.4 million people died from consequences of high blood sugar.

More than 80% of diabetes deaths occur in low- and middle-income countries.

WHO projects that diabetes deaths will increase by two thirds between 2008 and 2030.

Day 10, A Little Funny for Your Saturday Morning

Today's prompt is to write a LOL post, write something funny or share something you thought was funny. 

Diabetes has give us a few funny moments, I wrote about one awhile back in Peeing on Sticks, Ketones or Pregnancy?

A funny little conversation between Kortnie and I.  Here is an excerpt from that post.

Tomorrow is my son's birthday (Kortnie's little brother), Kortnie asked what time Graham was born. I said something like 6:30am, she got out his baby book to look, she came across something I had written about how I found out I was pregnant on Halloween day and the conversation went like this....

Kortnie: How'd you find out you're pregnant on Halloween Day?
Me: I peed on a stick and it told me.
Kortnie: Eeeeewwww!
Me: That's how you find out, you pee on a stick and it tells you if you are pregnant or not.
Kortnie: Oh! Just like ketones! (when she checks for ketones she most often pees on a stick, and it changes color depending on how many ketones she has, ketones are bad, it means your body is burning fat for energy instead of burning the glucose for energy, they can make you very sick)
Me: Um, yeah, just like that.....but better

Things only a Type 1 Kid would think of.

And yeah, peeing on stick and finding out if you are pregnant is way better that peeing on a stick and finding out you have ketones.

She looked thru his baby book further and read what I wrote about him sleeping for 22 hours straight after he was born and not eating, the nurses poked his heel and he had low blood sugar and so they poured sugar water on my nipple and stripped him down and made him cold so he would wake up and eat.

She thought that was the meanest thing and is now concerned about him having low BG when he was a brand new baby. 

One other funny thing I can think of, we were shopping once, shortly after diagnosis, and I had been looking at the sides of boxes and checking out the carbs on things, I guess I would sort of read out loud and talk to myself and compare different things,carb-wise and money-wise.

So, we were shopping, just Graham and I, he was 2 when Kortnie was diagnosed, so he probably would have been maybe around 3 when this happened.

He wanted some brownies or cupcakes or something, we were in the baking aisle at Walmart, it was one of those rare times when I let him out of the cart to walk around with me.  He picked up a box of brownie mix, turned it to the side, and said to himself, or to me,

"Oh, brownies, eight-seven carbs, we can have that!" and put it in the cart.

Funny!  Well, funny to me.  He was just a little guy, he didn't know how to read, but he did know that carbs was something that mommy liked to look at.  And, no there were eighty-seven carbs in a brownie, he was just making stuff up, because he thought that would get him the brownies.  Well, yes, he's so cute and funny, he got the brownies. 

Graham is my little guy, he sticks close to me and helps me with everything, he is exactly 3 years younger than Kortnie and 5 years younger than Stasia, so when we are all home, he is usually hanging out with me and helping me.  He still to this day, will go to the bottom of the stairs and call up to the girls fro me when it is dinner time. 

"Girls!  It's time for dinner, Kortnie come check your Diaaaabeeeteees!"

Graham will never remember a life without diabetes in our house.  It's all normal to him.  The rest of us remember life before diabetes, but he doesn't.  I think its kind of funny.

He is 5 now, she is 8, our oldest is almost 10.  Lately, he's been telling her he is a robot, because he is a boy, he likes robots and transformers and he thinks its cool that his sister has robot parts, tubes coming out of her and little computers on her belt, a little thing that sucks up her blood and gives her numbers.  It's all really cool to him.  I keep telling them we should look for the show Bionic Woman on Netflix because Kork is like the Bionic Woman. 

 This is Kortnie with her cousin H who is 3, we don't live close to these guys, so we don't see them often, I think this was the 2nd time we've been around little H.  Over the summer we were all at Grandpa and Grandma's house together.  She was very interested in "Kortnie's buttons", she ask us, "I push buttons?"  Um, no, please don't pus the buttons, cute girl.  She wanted to check her BG, everytime Kortnie would get her stuff out, little H would come running over to see if she could help push buttons or check her own BG.  So funny and cute.

We never ended up checking little H's BG, because I just didn't want to poke her and make her bleed.  But, we did give her a site, one of Kortnie's sites went bad, so it was still sticky when we pulled it off, Hannah was there watching of course, and we gave her the old site.  We did not insert it with a needle, we just stuck it on her with a sticker and let the tube hang down.  She was going around showing everyone, that she has a "pink heart on my arm, like Kortnie"  she wore all evening and wore it to bed, it fell off in her sleep, but she found it and stuck it back on in the morning and wore it until all the stick finally wore off.  She made Kortnie feel good, can you tell by the smile on Kork's face?  She thought it was funny and she liked it too. 





Diabetes Fact of the Day

Kortnie is slowly losing or mixing up her memories of life before diabetes, eventually she won't really remember much of life before D, because really, how many of us have vivid pre 5 year old memories?   It is kind of sad to me that she won't remember a life without her disease, but it could also be a little of a blessing too I guess.  Sometimes I think that I am glad she developed it so young because that way it is easier for us to teach her how to take care of herself if she doesn't remember anything else.  But, then I feel guilty about thinking that. 

D-Blog Day 2012

Today is D-Blog day, it was started on November 9th, 2005 during Diabetes Awareness Month, to help unite diabetes bloggers and to create awareness about Diabetes.  You can find more info  here.   I participated in D-Blog day the first time back in 2010, 6 things I want You to know about Korky.   This years prompt is Choose a form of Media Outlet to write an open letter to, such as NY Times, CNN, Local/National Newspapers, TV and why it is so important for them to let the world know that diabetes is more than just being overweight and having too much sugar. It is about reporting stories about Type 1 and Type 2 diabetes. Let them know what kind of things you would like them to write about. If there are specific articles or reports they got wrong, let them know about it! Let’s get it right!

Dear American TV,

Why do you insist on making fun of people with Diabetes.  Did you know that over 25 million people in the US have diabetes, around 8.3% of the population.  Not all of those people got diabetes by laying around on the couch, watching TV, drinking soda, and eating cupcakes!  Not all of those people have had or will have a leg amputated.  Some of those people with diabetes are kids, and they didn't get it because their parents let them have a sweet treat every now and then, they certainly didn't get it from a Happy Meal at McDonalds. 

You develop Diabetes when your body either stops producing insulin or when your body builds up resistance to insulin.  It is a serious chronic illness!  There are many different types of diabetes.  Do your research, when you report about diabetes, report about all types of them, not just one. 

Why do you insist on painting the country pink in October, and then forgetting about everything else for the rest of the year.  Diabetes has a month too, its November, devote some time in November to educating about the differences, of course its good to talk about the preventions but when you talk about preventing diabetes, tell the world which diabetes you are trying to prevent.  Take into consideration the children and adults with Type 1 Diabetes, the ones whose immune system turned on them.  Take into consideration the ones who have hereditary diabetes. 

No more jokes on talk shows, late night shows, and news shows about sugar highs or amputations.  That stuff scares my kid who has diabetes.  You don't make fun of cancer, mentally handicapped, or other illness, so don't make fun of diabetes either.  It is anything but fun!

If you're going to talk about, research it, get your facts straight, make a well-informed piece.

Thank you, Amanda

Now, for the Wego Health NHBPM prompts for today, they were to make a care package for your fellow patients, or to tell a descriptive story about a memory. 

Yesterday I wrote a little about Kortnie's diagnosis in Dear Diabetes or you could read about her Diagnosis Story for some of my memories.

As far as a care package for our fellow patients, I actually can't really think of anything very nifty right now.  When Kortnie was in the hospital, it was a children's hospital.  They had all kinds of neat things there for her, they had the Disney channel, movies, video games, board games, and books they could bring to your room.  They also had a game room, arts and crafts room, and even a school room you could go to for awhile if you wanted, even a playground.  The people at Child Life brought her a Bag of Hope from JDRF, which had a Rufus bear in it, Rufus also has diabetes, they also brought her a couple of blood sugar meters and skins for them.  They let her pick out a medic alert bracelet too.  They had free wifi there too, so that was nice for me, I could update worried friends and family through facebook (no smart phone for me back then, they were still fairly new), and I could research Type 1 when she was resting or watching tv.  They gave us some books about diabetes, a whole binder full of information, great training, and free samples of meters and test strips.  They gave us toothbrushes and toothpaste, shampoo, conditioner, soap, towels, and washrags, they had a lounge with a Keurig type coffee machine, tv, magazines, a refrigerator, microwave, and a shower for us parents.  The hospital was great to us.  I can't think of anything else they could have done for us. 

If I heard about a newly diagnosed family in the hospital.  I might bring them some food for the parents, tv dinners or something they could keep in the refrigerator and microwave in the lounge.  I might bring the kids a new pair of PJ's, for a girl some nail polish.  I would definitly bring them a list of helpful websites, groups on facebook, organizations, and blogs.  The biggest thing I would bring them is love, support, and prayers. 

Diabetes Fact of the Day
Sugar free is not necessarily good for a Type 1 Diabetic, sugar free candy and treats are usually filled with sugar alcohol which can cause tummy issues, and they almost always have just as many carbs as the non-sugar free version. 

Go take the Big Blue Test if 20,000 tests get logged by World Diabetes Day on November 14th, $100,00 will be donated by Roche Diabetes Care to humanitarian diabetes chairites around the world which will deliver lifesaving insulin and supplies to children around the world.  You don't have to have diabetes to do the test.  For a non-diabetic, all you need to do is 14 minutes of activity.  Dancing, Running, Aerobics, Zumba, Yoga, Weight Lifting, Swimming, Walking, Playing at the Park with you kids, Bicycling, anything.  It only takes a minute or less.  Go log your activity and help save a child here! 

Dear Diabetes

Dear Diabetes,

On this date, November 8th, 3 years ago in 2009 you came barreling into my daughters life.  Actually, I'm pretty sure you came into her life awhile before that, but it was on this day, 3 years ago that we found out you were here, and here to stay. 

We've fought the good fight for 3 years, we'll keep on fighting forever if we have to.

 

I will never forget that day, looking down at my little girl so tired and weak, sleeping in her daddy's lap in a church pew, looking like a bag of bones, while I was up on the stand participating in the Primary program.   I will never forget telling my husband, "I'm taking her to the ER, right now" and marveling at the fact that he didn't even try to tell me it would be okay to wait until tomorrow morning when the doctor was in.  I will never forget how she just laid there in that big hospital bed and was too weak to fight off the needle stealing the blood from her arm.  Soon after someone came and told me she had Diabetes, I had to wait a good hour and a half after that to call Brian, he was still at church with no cell phone.  I will never forget the doctors telling me that she was in bad shape and they couldn't keep her at our local hospital, they were afraid she'd go into coma or have a heart attack, they said she had to be flown to Phoenix.  I will never forget them strapping her to a travel gurney and loading her into that helicopter.  Thank the Lord the let me fly down with her, my one and only unforgettable helicopter ride was anything but enjoyable.  I will never forget sitting in the PICU with Kortnie and crying at the site of 7 different tubes of stuff going into her IV. I will always be forever grateful that Brian didn't get there until the next afternoon, by then we were out of the PICU and in a regular room, Kortnie looked so much better, he won't have to live with that frightening image in his head.  I will never forget those 5 days we spent in the hospital, Kortnie, Brian, and I, away from our other kids, missing them like crazy, and scared of how much our lives were changing.  I will never forget the fear, the anger, the fright, the despair, and the confusion I felt. 

 

 I don't know what Kortnie remembers of that time, because I am afraid to ask her.  She does say that you, dear diabetes, you suck.

 

3 years with Type 1 Diabetes, Kortnie added 'It sucks!'

 

 

The other day, we were at Walmart which is right across the street from the hospital.  A helicopter took off, likely flying someone to Phoenix, Brian and I stood in the parking lot watching that helicopter fly away, I said a prayer for whoever was in there.  I looked at Brian watching that helicopter and he told me, "that makes me sad", I told him it made me sad too.  Every time I hear a helicopter fly over my house, I get scared that something has happened to Kortnie at school and that helicopter is going to pick her up.  I can't shake it, it's been 3 years and I can't shake the fear.

 

You know what though, dear diabetes, you have changed us, all of us, and maybe, just maybe, some of those changes are okay.  We eat a little healthier, we've met so many wonderful people, we've made friends in real life, and friends in our computers, we've learned so much, we've been able to teach.  Kortnie is strong, really strong, you have made her extra strong.  You have also made her better at math.  You have given us compassion too.   You aren't winning and you never will.  We will continue to fight, to live, and to strive to advocate and teach, and to look for a cure. 

 

Kortnie and her girls from the Aztec Cabin at D-Camp

 

Kortnie and Sugar at the JDRF Walk

 

 

Kortnie at the JDRF Walk to Cure Diabetes 2012, fundraising for a cure.

 

 

 

Don't get me wrong, I hate you, and I try not to hate anything, but I really do hate you, I would kick you to the curb, or take you from Kortnie anytime.  I'll keep the stuff you've given us though. 

 

Today we celebrate, 3 years of kicking your ass.  You still scare me, you still suck, you will still try to take over our lives, but we won't let you, you won't beat us, we'll keep fighting, forever.  You haven't just invaded Kortnie's life, but you've invaded my home, the lives of my family, you mess with one of us, you mess with all of us.  We've made beating you a family affair, with all of us working together, you don't have a chance. 

A 3 year D-Aversary celebration ice cream cone. Yes, she can eat that!

 

Graham and Stasia say it sucks too.

Watch out diabetes, we've got our eye on you!

 



Sincerely,
Kortnie's Family

 

 

 

Day 8 in the Wego NHBPM, the prompt was Write a letter to your Health.

 

 

Kortnie's Diabetes Fact of the day

 

3 years today, living with Type 1 Diabetes
11,000 finger sticks
1,260 syringe injections
320 site changes
16 doctor visits

14 blood draws
5 days in the hospital
2 eye dialations
1urgent care visit
1 ER visit
1 helicopter ride
All because of Type 1 Diabetes
 That's only 3 years, she is only 8 years old, she needs a cure.



 

 



 

 

 



Day 4 ~ What's in You Bag?

For day 4 in the blog post challenge the prompt was "What's in your bag/purse/backpack everyday?".  Well, actually there is a lot of stuff are supposed to carry around every day.  So much that, I found it easier to just pack bags or kits and leave them in certain places, that way either Kortnie or I can carry the minimum amount of stuff in our actual purses.  Here goes....

 

This is the kit that we keep in Kortie's classroom at school.  Her teacher has one drawer in her desk that holds Kortnie's stuff, Kortnie can go in that bottom drawer anytime she needs something.  The juice, smarites, and glucose tabs she uses for low blood sugars.  The batteries are in case her meter/remote needs a battery change (when her pump needs a battery change, I prefer they call me).  The glucagon and gel icing are for low blood sugars when she is unresponsive (never had to use these, knock on wood!).  The alcohol wipes are for cleaning her finger.  The diet root beer, sugar free jello, crystal light packets, and low sugar gum are for treat days.  It's all contained in a little carrying box, when they have a fire drill the teacher brings this box with them.   Most of the time when there is a treat day Kortnie will use the teachers phone and call me and she and I will guestimate together a carb count and plan of action so that she can eat whatever the class is eating.  These are just a few substitutions that I'd rather she have in a treat day situation.  I send in replacements for this kit often.

 

This is the kit we keep in the nurses office.  She could keep these in the classroom, but I prefer to have backups of the backups in the nurses office too.  The Lancets, extra pump supplies, and extra meter, are just that, extras in case the ones she carries on her fail.  More batteries and alcohol wipes.  More low blood sugar treatements, and peanut butter crackers for an extended stubborn low, a little protein and carbs to help her stabalize.

This kit goes in our camping box.  Our camping box is a 30 gallon tub filled with various things we can use for camping.  It also doubles as our 72 hour kit.  We keep all of this in the closet next to the garage, if we ever have to bug out, we'll grab the Camping stuff/72 hour kits, throw them in the truck, grab some insulin out of the fridge in the garage and combined with the stuff I keep in the truck we should be good to go.  In this kit is juice boxes, smarties, glucose tabs, pump supplies, batteries, test strips, flashlight, quarter (for changing the battery on her pump) and lancets. 

 

 

In my car I keep this little blue bag(my dad would call it a spit kit), in it is an extra meter, extra test strips, batteries for meter and pump, juice, smarties, glucose tabs, pixie sticks, gel icing, peanut butter crackers, glucagon, alcohol wipes, first aid kit, pump supplies, syringes, lancets, tampons, some money, a quarter (for changing battery).  I don't have a picture of this one.  This is a grab and go kit, I keep it in my car, but if Kortnie is going with her dad, say fishing or whatever, they grab this out of my car and take it with him.  Or if she's staying a few nights with her Grandma when I drop her off, I'll leave this bag with her and Grandma keeps it in her car. 

 

Kortnie keeps her meter/remote with her at all times.

 

When she goes to school she puts her meter in her backpack, also in one of those small outside pockets on her backpack she keeps smarties and juice boxes for the walk to/from school.

 

Whenever she goes anywhere else, even if she's with me, we've gotten her into the habit of carrying her own purse.  She carries her own meter, 1 juice box, and 1 roll of glucose tabs.  She has quite a few purses, and I think she just keeps a glucose tabs roll and a juice box at all times in about 5 or 6 different purse, that way she only has to transfer her meter around.  I think she also carries her wallet and iPod with her most of the time, except for school.

 

In my purse, I always have my wallet, tampons, medical cards, my phone, my keys, a few rolls of smarties, at least one juice box, a glucagon, and some glucose tabs.  I also always have those red and white starlight mints, because I like them and sometimes Kortnie does too for a little boost.

 

When we go somewhere like hiking or fishing, I carry my blue JDRF backpack, I will usually carry her meter for her so she doesn't have to carry anything.  I keep in my backpack, snacks for all 3 kids and my husband, water bottles, glucagon, juice boxes, first aid kit, camera, extra test strips, alcohol wipes, cell phone, peanut butter crackers, and sometimes a book for me to read while they fish :)  We also keep a roll of smarties and/or a gel icing in our pockets, for easy access.  Can't tell you how many times I've washed pants with smarties in the pockets. 

 

We love to do family bike rides, I have a basket on my bike and there is always a roll of gluc tabs and a juice box in there, even if Kortnie isn't riding with me.

 

This is a lot of stuff to carry around.   I know we have repeats of stuff in a lot of places, say we go to Walmart, she has her purse with a juice, I have my purse with a  juice, and the car has its kit with a juice, and we're in a store with a juice.  I feel more comfortable with all of these possible repeats of stuff, because sometimes we've used a juice earlier in the day and not had time to replace it yet.  I do try to restock everything quite often.  The school kits I go check on about every month, or the teacher or nurse will call and ask me to send in refills.  The car kit I check about once a month when I clean out the car.  I replace the test strips in there a lot, there are tons of times when we'll be out and about and Kork will run out of test strips in her kit so we have to use the extras we keep in the car.  The camping/72 hour kit, I usually go thru that once in Spring at the first camping trip and once in the fall after the last camping trip.  Our purses we just replace the things we use as we use them. 

 

So that's what's in our bags.  I carried around diaper bags with tons of stuff in them for about 6 years non stop, and just when I thought I could go back to a little purse, Kortnie was diagnosed with T1D and now I'm back to carrying around extra stuff again. 

 

Diabetes Fact of the Day:  Diabetes is expensive, not only do we have to buy insulin, test strips, meters, pumps, pump supplies.  We also have to buy multiple juice boxes, glucose tabs, batteries, alcohol wipes, candy, protein/carb snacks, etc, etc, etc.  And when Kortnie has a juice box or candy because she's low, all the kids think they need one too.  It just adds on the costs!

The Weirdest Thing about Kortnie's Health #NHBPM Day 2

Day 2 in the Wego Health National Health Blog Post Month.

Today's prompts were write about the weirdest thing about your health, or find a quote and use it as inspiration.

I'm going to write about the weird things. 

Where do I start?  It's been said that Diabetes is a fickle bitch, and that is the truth! Fickle bitch could easily translate into weird though, couldn't it?

Diabetes means fluctuating blood sugars and fluctuating blood sugars can produce all kinds of craziness.  One minute Kortnie will be my sweet 'normal' girl and the next she can be a raging maniac!  You can look at her wrong and she'll just start crying and/or stomping around  and I'm like "what the heck, go check your blood sugar!" 

One time we were driving in the car, we had just left the bank and were heading to Walmart, less than a mile drive I'd say.  She was fine!  I was talking to her and all of a sudden she slumped over and passed out!  That was some freaky weird scary stuff, I quickly pulled over and her blood sugar was like 35 or something ridiculously low like that.  No rhyme or reason, I mean she was fine 1 minute previous.

The crazy unexepected-no reason at all-high and low blood sugars-they give the weirdest reactions and they are the scariest, and they happen at any time, no rhyme or reason, just because diabetes is a fickle weird bitch.

Another weird thing, for me at least, is that I am literally pumping my kid full of a man made hormone all day every day 24/7.  She is connected to an insulin pump ALL of the time, and that pump gives her man-made insulin every 3 minutes.  Her doctor, her school nurse, he father, and I are always changing up her ratios and rethinking her insulin doses and tweaking it.  Too much of that insulin can kill her pretty quickly, not enough can cause major damage and kill her within a few days.  I have always been the mom who relied on chicken soup, orange juice, water, and rest as a cure all, I avoided doctors offices and medicines as much as I could, and now I am the mom pumping my kid full of a man-made hormone all day, everyday.  That is weird for me. 

That being said, here is the bonus quote that I need to inspire me

Diabetes Fact of the Day

Type 1 diabetes strikes both children and adults at any age. It comes on suddenly, causes dependence on injected or pumped insulin for life, and carries the constant threat of devastating complications.

Why I Write About Kortnie's Diabetes #NHBPM Day 1

November is Diabetes Awareness Month.

 

So, in honor of that, I am going to try to  participate in Wego Health's National Health Blog Post Month.  This means that I will be writing one post per day for the month of November.  Wego Health has given prompts for each day of the month.  I can choose from 2 different prompts or from a list of alternate prompts, and I get to skip 2 days during the month if I want. 

 

So here goes, today is Day 1, and the prompts were "Why I write about my health" or "My favorite thing about social media/Internet/online health communities".

 

I am choosing the first, hence the title of the blog post.

 

I write about my daughter's health, in essence, her Type 1 Diabetes for a couple of reasons.  These are in no particular order.

 

#1 I write for me, so I can vent, so I can remember, so I can look back and see how far we've come.

 

#2 I write for Kortnie, so she can look back and remember.  Also, I write for her because... well, this is hard to say, but because I am afraid that someday she might have a child with Type 1 Diabetes, and maybe this blog will be beneficial if she ever becomes the mother of a child with T1D.

 

#3  I write for the other mothers out there.  Reading the blogs of other D-Mom's and PWD's (persons with diabetes) has helped me in so many ways.  They give me a feeling of same-same, they give me a sense of community, they give me good ideas and insight.  Reading blogs was my first foray into the DOC (Diabetes Online Community), and from the blogs I first found I have made friends and joined other online communities.  I treasure these friendships!  I hope that my blog gives the DOC back some of what they have given me.

 

#4  I write for my family and friends.  I know of a couple of my cousins and friends who read my blog.  I don't ever want them to feel sorry for me or for Kortnie, but it's nice to be able to share some of our daily challenges and triumphs with them so they can glimpse what our life is like.  Also, I figure by blogging I can share all of that and they can read or not, it's their choice, they don't feel like it's shoved down their throats.  I hope!  I think in the beginning I talked about diabetes way too much, in person, on my personal facebook page, and on my other family blog.  I probably still do sometimes, but hopefully I'm toning it down some.   Now, some might say that I have that right to talk about diabetes whenever I want to, but really, I don't want to talk about it all of the time, everywhere to everyone.  I don't want diabetes to RUN our lives, it is a BIG part of my family and our life together, but it DOES NOT rule the world! 

 

#5 I write for whomever may stumble onto my blog, maybe they'll learn something.  All I knew about diabetes before my daughter's diagnosis was the stereotypical type things.  I have learned so much these last 3 years, and this is one small way that I feel I can advocate for my daughter and for other Type 1 Diabetics.

 

So, that's it, that's why I write this blog.  As a bonus, I'll answer the other prompt too.  My favorite thing about social media/Internet/online health communities is.....reading blogs of other D-Moms and a few PWD's (later on in the month one of the prompts is to share your favorite blogs!).  Also I belong to a few pages on Facebook where I can go and write anything about diabetes or ask a question, and instantly so many other parents of CWD's (Child With Diabetes) or PWD's are right there to sympathize with me or help me out with an answer. 

 

Also, everyday during November I will be sharing a Type 1 Diabetes Fact of the Day and today's fact is...

 

Type 1 diabetes (T1D) is an autoimmune disease in which a person's pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body's immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and-at present-nothing you can do to get rid of it.