Purple Because Aliens Don’t Wear Hats

If you accidentally bolus 25 units of insulin when only 3.5 units were needed and each unit of insulin will reduce blood sugar by 50 points while every 10 grams of carbs would normally require 1 unit of insulin and your blood sugar was 300, keeping in mind fast acting insulin takes approximately 20 minutes to be active and remains in the body 3-7 hours with a peek between the 2nd and 4th hour, how many carbohydrates should be consumed and over what period of time should said carbohydrates be consumed in order to avoid convulsions, coma and death?

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The facts:

At approximately 10:30 pm PST my daughter checked her blood sugar. The result was 300.

She wears a t:slim insulin pump. She input the data (the blood sugar of 300) into the pump.

The pump completed the required calculations to determine the amount of insulin needed to lower my daughters blood sugar.

My daughter pushed the required buttons (really its a touch screen pump so there are no buttons) to deliver the required amount of insulin.

The t:slim pump delivers insulin very slowly – in (I believe) 0.3 unit increments. They say it is a safety feature – and honestly it would have been had my daughter noticed her nearly deadly mistake early enough.

After approving the suggested bolus on the pump my daughter clipped her pump back to her pajama bottoms and tucked in for a good nights rest.

Minutes later her insulin pump alerted her to a problem. Basically it had delivered 25 of the 30 units of insulin that was required to complete the suggested (and approved) bolus.

I am 100% certain my daughter had a total WTF moment although I wasn’t there to witness it. I just know she came downstairs saying “Mom Mom Mom Mommy Mommy Mom”

Her pump is programmed to never give more than 25 units of insulin at one time (meaning for one bolus). The suggested bolus was 30 units of insulin – thus the pump gave 25 and then asked the user (my daughter) if she wanted to give the remaining 5 units. Clearly we need to reduce the number of units that can be given at one time to perhaps 15 units but that is just one lesson we learned in the small hours of last night. 

What happened? 

Well technically exactly what the endocrinologist at my daughters last appointment said could happen and why she (the endo) refuses to prescribe the Tandem t:slim pump to children (including and possibly especially teens). BTW – my daughter didn’t care for me reminding her of that conversation with that endo. She (my daughter) doesn’t like it when others may have a valid point (I’m not sure where she gets that from).

Basically – my daughter input the 300 blood sugar as carbohydrates rather than as a blood sugar. Her pump is programmed to calculate insulin needs based on blood sugars and total carbs consumed. The amount of insulin needed by my daughter to lower a blood sugar of 300 to 150 is 3.5 units. Had she input the 300 blood sugar as a blood sugar all would have been well. However, she put the 300 in as carbs. Her pump is programmed to bolus (that means inject) 1 unit of insulin for every 10 grams of carbohydrates; which is why her pump wanted to bolus 30 units of insulin.

There are a number of screens on the pump a user has to go through in order to initiate insulin delivery. Each screen provides the user with some information such as how the pump calculated the suggested bolus, confirmation that the calculations appear correct, confirmation that the user wants to deliver the suggested amount of insulin, an opportunity to change the suggested amount, again a confirmation before it will deliver and finally a screen showing what t:slim calls the ‘Bolus Splash’ which also displays the amount of insulin being delivered.

So just as the endo suggested could happen with kids and teens (and likely adults too) – my daughter put in the 300 blood sugar as carbs and then in a matter of less than seconds tapped: ‘DONE’, ‘NEXT’, ‘YES’, ‘DELIVER’ – and voila! the pump initiated the delivery of enough insulin to kill my daughter within just a couple of hours whilst we all slumbered away.

*quick side note for those that may not be familiar with how diabetes can kill a person – people with type 1 diabetes (my kids) must take insulin to stay alive because their pancreases don’t produce it. There must always be a balance between the amount of insulin taken and the amount of carbohydrates consumed (carbohydrates are not just sugar – they are potatoes, rice, bread, fruit, milk, yogurt, pasta, etc). Too much insulin will lower a persons blood sugar and cause hypoglycemia which is typically anytime a blood sugar is below 70. A normal blood sugar is between 70 and 145 for people who do not have diabetes. The lower the blood sugar the more danger a person is in. Most people will lose consciousness, convulse, and possibly die with a blood sugar less than 20 but some people can be symptomatic long before a blood sugar of 20 or less.  If my daughter had not alerted us to the accidental overdose her blood sugar would have dropped to less than 20 within the first hour or so. It would have dropped so quickly based on the amount of insulin she delivered she may not have become aware of the drop in time to take action. 

What did we do?

Well for starters this…

IMG_4801

Banana, Teddy Grams, 2 juice boxes, mini butterfinger, mini 100 grand, full peanut butter and jelly sandwich (she was eating the other half)

The above picture shows approx. 125 grams of carbohydrates. She really needed a minimum of 200 grams but the child could not consume another bite.

She was exhausted. I sent her to bed and told her I would wake her if she needed to consume more. (IF?!?! – of course she would but I didn’t want to alarm her)

I checked her after 30 min. (11:00pm)

She was still in the upper 200s. Insulin isn’t really active until after 20 – 30 min so that was expected. She had eaten a number of fast and long acting carbohydrates (referring to how fast the body absorbs the sugar and/or converts carbohydrates into sugar) so I wasn’t sure what her blood sugar was going to do. I mean I knew it was going to go down but I didn’t know by how much or how fast.

11:30pm – blood sugar 118, woke her and had her drink 30 grams of juice.

It was at this check that I realized I had let slide a very important step in preventing an insulin overdose from ending tragically. I forgot to suspend basal insulin delivery. Basal insulin is insulin that is almost continuously delivered – a small drip basically to mimic what a functioning pancreas does for people without diabetes. Obviously my daughter did not need her basal insulin delivery at that time. Thus, I suspended all basal insulin for the next 4 hours – that should have been done at 10:30pm when my daughter made us aware of the accident. (BTW – this is only valid for people/kids who wear insulin pumps – those that get their basal insulin via an injection have no way of suspending the basal insulin)

dammit.

At 12:00am – blood sugar 124, gave 30 more grams of juice. She did not want to drink the juice this time and I actually had the first of two ‘drink the juice Shelby’ moments. That sucked.

12:30am – blood sugar 131, gave 15 more grams of juice.

1:10am – blood sugar 108, 15 more grams of juice. The second ‘drink the juice Shelby moment’

1:45am – blood sugar 145 – hallelujah she was going up. At this point the majority of the insulin, if not all of it was out of her system. I was still nervous though. It isn’t really an exact science when it comes to how long insulin is active. Each body is different. Thus I grabbed a pillow from the couch and climbed into bed with her. I felt safe enough to close my eyes at that point but I didn’t want to be far off. Prior to that I had watched a number of DVRd shoes afraid to close my eyes even for an instant.

My alarm woke me at 2:30am – blood sugar 162. Fine.

I stayed in her bed until my alarm at 6:00am.

Her blood sugar this morning 274. I think perhaps I could have turned her basal insulin back on at 2:30am but would you have?

She doesn’t remember any of the juices although she saw the juice box carnage on her desk. She woke with a slight stomach ache – well duh she drank 6 juice boxes in the middle of the night.

As a side note – it dawned on me sometime around 1:00am that I could have possibly used small injections of glucagon rather than juice boxes. I have never used the ‘mini-glucagon’ before – never had a reason to. Clearly I need to school myself on mini glucagon doses. (Glucagon is a hormone naturally produced in a persons liver as a last natural defense against hypoglycemia but it has also been synthesized and is typically used in emergency situations when a person experiencing severe hypoglycemia is not conscious. It has also been used in situations similar to ours last night or during periods of illness when carbohydrates can’t be consumed.)

Had it not been for the alert that the pump still had 5 units of the suggested bolus to deliver, or had my daughter ignored the alert this story would not be being told with sarcasm and purple hat wearing alien jokes. This story wouldn’t be being written the morning after while I wait for my youngest to finish getting ready for school. Had the pump not alarmed or had she ignored the alarm when it did alarm, this morning would be a huge black hole that no amount of expletives, sarcasm, tears or cyber hugs would bring me back from.

Diabetes is hard. I know sometimes many of us in the diabetes community make it look easy. We share pictures of bolus worthy food, laugh at the word ‘high’, share random silly moments with diabetes humor, climb mountains, run across Canada, win pageants, Nascar races, Indy races and Ninja Warrior challenges, send our kids off to college and sleepovers, walk, run, and bike. Oh and then there are these folks over at Connected in Motion who are just all kinds of awesome. We do all of these things and often we make it look easy peasy, but diabetes is hard. It is 24/7/52 FOREVER. Yes, I believe there will be a cure and there are always new treatments and tools being developed that make managing diabetes easier. But for right now it is forever, it is frustrating, it is dangerous, and it is damn hard.

I get a lot of kudos from friends, relatives and strangers who stumble on my blog posts. My kids get a lot of kudos too. It’s always nice to hear ‘you are a strong mom’, ‘you are so brave’, ‘your kids are so lucky’, ‘your kids are amazing’, etc. But I have to be honest – last night rocked my world. I was scared – more scared than I’ve ever been. With all my involvement in the diabetes online community, with all the books and blogs I’ve read, with all the conversations with Dfriends  – I forgot some of the basics – suspend the pump, give mini-glucagon. 

I am not sure how I feel about Tandem and t:slim right now. I don’t blame them or the pump but I also don’t blame my daughter. I can understand anyone doing just as she did. It was an easy mistake and even I’ve jumped through the multiple screens when I’ve given my daughter a correction bolus in the middle of the night. The danger is due to the exact reason the pump is so wonderful – ease of use. My daughter loves her t:slim pump and I want her to have the tools she deems best – it’s her diabetes. But honestly this event – it never would have happened with an Animas pump. Animas pumps will do the calculations to determine the proper insulin dose but prior to delivery the user must ‘scroll’ up using arrow keys to match the suggested bolus amount to the amount being input. Thus, the user can’t simply tap buttons without paying attention to the calculations and suggested bolus amounts like they can do with t:slim. I’m not sure about Medtronic or OmniPod pumps. Medtronic pumps don’t require the user to input the suggested bolus like Animas pumps do but the steps needed to get to the point of delivery are longer and more cumbersome than with t:slim. We’ve never used OmniPod or played with one so I have no idea how their system works.

When considering an insulin pump do research, find a way to get your hands on a pump to play with it, don’t just go with what your doctor wants you to go with. I still recommend the Tandem t:slim pump. I believe in it. It is the easiest pump to use, has the smallest profile of any tubbed pumps, has a rechargeable battery which is better for the environment IMHO (although stay tuned for the latest in a serious I think I might call ‘oops she did it again’), and holds 300 units of insulin which is important to many. I do not recommend the t:slim for younger kids. It is sooooooo easy to use and clearly at times too easy that I personally don’t believe it is the best pump choice for kids under 12. AGAIN MY HUMBLE OPINION.

I also fully support and recommend Animas pumps. Currently my boys both use the Animas Pings. Fabulous pump for all ages. There is a rumor the Animas Vibe will make its debut in the USA very very soon – the VIBE combines the Dexcom CGM (continuous glucose monitor) with the Animas pump so that the CGM results can be seen on the pump screen versus carrying a separate receiver. Sadly it means no more ping technology (the ability to program a bolus using the ping meter remote without touching the insulin pump – comes in handy for blood sugar corrections on small children after the witching hours).

Hug your kids. Hug your spouses. Love fiercely. Stock up on juice. Eat chocolate. Laugh as often as you can.

Oh hey also maybe do me a solid and go like the Stick With It Sugar Facebook page.

I Should’ve Made The Brownies

I recently learned of a family that nearly lost their daughter. She had been wetting her bed, drinking lots of water, eating everything in sight, arguing, talking back and sleeping way more than usual. The parents noticed all these things but didn’t put them together as a whole. They addressed each issue separately  – while they disciplined the poor behavior and restricted water before bed. They chalked most things up as ‘summer boredom’. When their daughter started throwing up they thought she had a summer flu and took her to the doctor. The doctor sent them to the hospital and said “It isn’t the flu”.

If you are reading this you are likely already familiar with Type 1 diabetes. You recognize all the symptoms. You knew right away the dear child didn’t have behavior problems, wasn’t bored and didn’t have the flu. The thing is  – many parents don’t know the symptoms. I didn’t know the symptoms. When Sugarboy was diagnosed his blood sugar was nearly 1000. He was in DKA. I could have lost him if I hadn’t noticed the weight loss and followed my gut despite my husbands insistence that I was paranoid. (Don’t judge him – Ive always been a bit worrisome)

Six months before Sugarboys diagnosis I had started a new part-time job as a pre-school teacher for mothers-day-out at a church. I had applied for a number of positions at various churches and was offered a number of jobs. The job I took was not my first choice. It offered less money than the others, and offered the opposite days that I wanted to work. Yet something urged me to take the position. Honestly my heart and head where arguing with each other. My head said no my heart said yes. I followed my heart. Two months after starting the new job a 3-year-old girl in another class was diagnosed with diabetes. I didn’t know her or her family but signed up to make a meal for them. I made meatloaf, mashed potatoes, broccoli and sent a loaf of french bread. When the mother of the child came to pick up her daughter from school I gave her the meal and said, “I wanted to include brownies but didn’t think that would be right.” The mom smiled and thanked me and went on her way. I rarely saw the mom although the child hung out in my classroom with my co-teacher often. I never thought to ask how a child so small could have diabetes. I never thought to ask about the symptoms.

Three months later I started noticing little things with my boy (2 years old at the time). He was drinking more, asking for milk or water vs juice, sleeping longer and harder than before, wetting through his diaper at night and during the day, he was cranky and whiny. His teachers noticed it too – said he was falling asleep during story time. I asked them to please allow him to have his zippy cup of water since he was so thirsty. A couple of weeks past and he became more thirsty, more tired and more cranky. I was cursing the terrible twos. His teachers and my co-teacher became more concerned but no one mentioned diabetes (not blaming them – they didn’t know either).

Sugarboy’s whole diagnosis story is here but this isn’t about his diagnosis. This is about how knowing the symptoms of diabetes saves lives. It is why if I get an opportunity to share what onset of Type 1 diabetes looks like – I do. It is why I strongly believe doctors should have posters in their exam rooms that outline the symptoms. It is why I believe doctors should test urine for sugar at well checks. It is why I volunteer for the JDRF Kids Walk to Cure diabetes because I get to talk about the symptoms with entire schools.

Not every parent of a child with diabetes wants to talk about diagnosis, diets, fears, struggles, symptoms, etc. The day I handed the meal to the mother of this child I wish I had asked questions. Maybe she would have felt uncomfortable talking about it. Maybe it would have been too soon after diagnosis for her to talk. Or maybe she would have liked to share her story and I would have caught Sugarboy’s diagnosis earlier.

What I wish most is that I had made the brownies.

Mad Hatter

I will be the Mad Hatter

For those that have not read my blog before or were not around when I began my blog earlier this year here is a recap:

I have 3 children. 2 of my three children (my oldest and my youngest) have both been diagnosed with Type 1 diabetes. My youngest was dxd when he was 2 back in 2007. My oldest was dxd 2 years later at age 9. Since my oldest child’s diagnosis I have also monitored my middle child’s blood glucose levels periodically – holding my breath each time and releasing said breath with a sigh of relief each time his numbers came back “normal”.

In October of 2011 my middle child (middles) agreed to get a blood draw at our local JDRF walk via Trialnet (research group that tests for antibodies that are present in those with Type 1 diabetes).

In February I received word that Middles was positive for all of the antibodies commonly found in individuals with Type 1 diabetes. Not great news but not a guarantee that Middles would develop diabetes. (BTW – my husband and I are both negative – my oldest (Sweetstuff) was positive for the antibodies two years prior to diagnosis)

Since February I have held my breath – checked Middles blood sugars slightly more often than previously and prayed. His numbers were not always “normal” but when they weren’t normal they were lower than normal (between 60 and 75 – post-prandial – which is low). Normal Blood sugars
In the last month or so Middles has been demonstrating random symptoms that I am way too familiar with:

  • increased thirst
  • sore legs
  • headaches
  • stomach aches
  • chest hurts
  • increased urination
I know the symptoms of diabetes onset – thus I tested Middles when he showed the above symptoms. Each time I checked him his blood glucose would be in normal range or below normal range. I also tested his  Ketone levels. On more than one occasion the ketone test results showed “trace” ketones using the ketone sticks (dipped in urine). I consulted the endocrinologist that my other two children see regarding the lower than normal blood sugars and trace ketones – she suggested we keep an eye on Middles.
Fast forward to today –
I took my boys to see Avengers (it was fantastic btw – stick around after credits for extra snip-its – Robert Downey Jr is so attractive I could watch him all day {sorry hubby but it’s a fact}). ANYway – during the movie Middles left to use the bathroom 3 times, drank all of his 32 ounces of water and most of mine. (He also ate a good size bag of twizzlers and popcorn). On the way home he fell asleep in the van and woke up just long enough to tell me to stop so he could go potty. When he came out of the bathroom at Taco Smell I tested his blood glucose level using Sugarboy’s meter.
6:30 = 232
Middles didn’t even ask what his number was – normally he asks. I was glad he didn’t ask. I wouldn’t have known what to say. We arrived home and I checked him again.
7:00 = 215
He had gone down but it was far from normal. No person without diabetes should ever have a blood glucose reading so high. I called the endocrinologist on-call. I explained the test results, the previous checks I had done in the weeks prior, the symptoms, and mentioned the positive antibody results. The endo on-call is not our normal endo so she was unfamiliar with my children but felt an ER visit unnecessary. She gave me some suggested lantus and novalog doses and asked me to check his blood sugars frequently over the weekend. She agreed to see him early Tuesday to run some blood tests (likely a C-peptide which checks insulin production and an A1C which is an average blood sugar over a 3 month period).
I checked Middles again – I hadn’t dosed him any insulin at this point.
8:00 = 136
Awesome his sugars had gone down more without injecting insulin. With this third check he told me I was making him a bit nervous. Normally when I did check his sugars it would be once in a week or so. Three times in 1.5 hours was more than I had ever subjected him to. I explained that his other numbers were slightly higher than normal and I was just keeping an eye on him. I also asked him to check his ketones. He knew just what to do since he had done it before. His ketones were “trace” – no immediate danger at this point.
I explained that the doctor wanted him to get some insulin but he said he would have none of it. (I hadn’t planned on giving it to him at this point since his sugars were coming down). He insisted that if I gave him insulin and he didn’t have diabetes it would kill him. He was right. Especially with the odd low numbers he had had in recent weeks I didn’t feel a dose of Lantus would have been safe.
9:30 – 126

Sugars still coming down – doesn’t mean I am wrong about the diabetes diagnosis – just means his pancreas is still producing insulin. The numbers earlier indicate that the storm is coming.
At this point I asked Middles how he would feel if he is diagnosed with diabetes.
Middles “Well you would loose your mind and become the Mad Hatter”
Me “You are likely right but I want to know how YOU would feel”
Middles “well I guess I wouldn’t be unique anymore”
So that is what went through my dear Middles mind when asked how he would feel about a diabetes diagnosis, that his mom would loose her mind and he would be just like his siblings – not unique.
I think he is right and wrong – He is absolutely correct about me loosing my mind but I think my Middles will forever be a “One of a Kind” kid.
For now – while I wait and check and wait and check – I ask those of you who believe in the power of prayer to put in a good word for my Middles. Maybe the storm is coming – but maybe it was a fluke – there is always hope.
Which ever way things go – we will weather the storm –
although I will likely be wearing a crazy ass hat.
Want to know the odds of multiple kids with diabetes in one family – check this out.

Warm Fuzzies for Mommies

How God selects the mother of a cwd


My life is too crazy (good but busy) to write lately but with it being mothers day I wanted to share a story that most of those that find their way to my blog have read previously but serves as a reminder of how awesome moms of cwd are. I needed this reminder today and I am thankful to Emma Bombeck for writing this treasure.


HOW GOD SELECTS THE MOTHER OF A CHILD WITH DIABETES
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. 

“Armstrong, Beth, son. Patron Saint Matthew.” 

“Forrest, Marjorie, daughter, Patron Saint Cecilia.” 

“Rutledge, Carrie, twins. Patron Saint Gerard. He’s used to profanity.” 

Finally, He passes a name to an angel and smiles, “Give her a child with diabetes.” The angel is curious. “Why this one, God? She’s so happy.” 

“Exactly”, smiles God. “Could I give child with diabetes to a mother who does not know laughter? That would be cruel”. 

“But has she the patience?” asks the angel. 

“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that’s not going to be easy.” 

“But, Lord, I don’t think she even believes in you.” 

God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.” 
The angel gasps. “Selfishness? Is that a virtue?” 

God nods. “If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect.” 

“She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see …. ignorance, cruelty, prejudice … and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.” 

“And what about her patron saint?” asks the angel, his pen poised in mid air. God smiles. “A mirror will suffice.” 

My Own Devices

My own Devices….

Day 23 Health Activists Writers Blog

Today’s prompt: Health Activist Choice Day – Write about whatever you want.

As a parent of cwd (children with diabetes) when I think of Devices I automatically think of my kids insulin pumps, glucometers, and the Dexcom that is still sitting in its box getting dusty. All the pwd (people with diabetes) or other parents of cwd that stumble upon my blog (or are guilted into reading it because I self-promote it 5 times a day on twitter) also very likely think of pumps, glucometers and CGMs (continuous glucose monitors – ie Dexcom). People without diabetes that read the word ‘Devices’ likely think of phones, MP3 players, or tablets.

However – I am not thinking of electronics during this post. Here is what I am thinking of:

Device: A plan or a scheme for effecting a purpose.

Why do I advocate? Why do I volunteer for the JDRF presenting the Kids Walk to Cure Diabetes? Why do I share great blog posts (others as well as mine)? Why do I share information about new technology and promising research? Why do I do my best to change stereotype perceptions regarding diabetes (all types)? Why do I insist on 504 plans for my kids? Why do I take my kids to diabetes camps? Why do I form a JDRF walk team? Why do I spend hours writing a blog? Why do I spend hours tweeting with other pwd and parents of cwd?  Why why why why….

Because I have a plan with a purpose – to end diabetes, to end misconceptions, to end bullying, to end sadness, to end confusion, to end it all.

I advocate for those with diabetes because change happens when we make it happen through action. Writing letters to government officials to support diabetes research lets those individuals know we are watching and we vote.

I volunteer for JDRF because my time and ability to speak in front of large groups (including kids) is more valuable than the modest amount of money I can afford to give (although I give that too). I educate the kids regarding healthy life style choices to hopefully prevent type 2 diabetes (although not all type 2 diabetes is caused by poor lifestyle choices) and I educate the kids about what Diabetes is, that it isn’t contagious, that a person that has Type 1 didn’t do anything wrong to get it, that a person with Type 1 can do everything a person without Type 1 can do but also has to do extra things to stay safe, I educate them on how they can help end diabetes by supporting organizations that fund research. The Kids Walk is my most favorite thing to do regarding diabetes education.

I share diabetes blogs on Facebook, Twitter and Emails because sharing our struggles, successes and failures benefits everyone effected by diabetes. It isn’t because misery loves company – it is because we need to know we aren’t alone – we aren’t the only parents that missed a high at night, or a low on the playground, or whose child is being non-compliant.

I share information about new technologies and research because it provides hope, it shows things are moving forward and even though the 5 Year mark (the number of years we are told at diagnosis in which a cure will be found) passes without a cure – we see progress.

I interrupt strangers I overhear speaking incorrectly about diabetes to educate them – to change the worlds perception of either that a) me or my kids did something wrong and thus got diabetes b) only people who are obese and lazy get Type 2 diabetes c)  people with Type 1 cannot eat a cupcake d) diabetes is easy.

I insist on 504 plans for my kids at school because I want them in a safe environment, I want them protected, I want the schools to know I WILL hold them accountable if they deny my children the care they require to stay safe.

I take my kids to diabetes camps because at camp my kids feel normal. At camp my kids see that they can do everything they dream of despite diabetes. I take my kids to camp because meeting other kids with diabetes helps my kids feel less alone.

I form a JDRF walk team to support an organization that funds research that will lead to a cure and end all the madness. I form a team to invite those without diabetes to get involved. I form a team to support my children.

I write a blog because it provides me a place to share, vent, whine, advocate, educate, support, laugh, and even cry aloud through my words. I write a blog because at some point in the future my kids will want to know “what did I do to end the madness” (although I am fairly certain they see and hear all I do). I write a blog because maybe there is a parent out there with a newly diagnosed child searching the Internet for information – maybe they will find my blog and they will see that while they have entered a world of madness there are others here to help them. I write a blog because one day maybe one of my dreams of writing a book or becoming a motivational speaker or a presenter at conferences will be realized and I will have all my past posts to draw inspiration and information from.

I spend hours a week tweeting with other pwd and parents of cwd because I don’t know everything (shhhh don’t tell my kids) and I can and have learned so much from the people I follow. The DOC (diabetes online community) is like camp for me – it allows me to believe I can do everything everyone else is doing and mostly I AM NOT ALONE.

My devices are not a part of a scheme – they are not intended to be tricky or mischievous.

My devices are fueled by my desire NEED to end the madness.

Dream day laced with guilt

My Dream Day Would Be Laced With Guilt

Day 14 Health Activist Writer’s Month Challenge

Prompt – Describe your ideal day. how would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?

I have struggled with this prompt in my head all day – well actually for a number of days since I read ahead. Many would expect me to write how my dream day would be a day in which my kids did not have diabetes. Of course I dream of that day but while I believe it is coming I don’t believe it will be in the next 5 years. Others may also expect my dream day to be one I spend having fun with my family – the thing is I get a lot of those days and I treasure them already. Earlier I started to type out my dream day as a day I get to meet all the wonderful people I’ve ‘meet’ in the DOC (diabetes online community via twitter and blogs) since I got involved. So many have already helped me learn, cope and laugh – too meet them in person would be oh so wonderful. Yet none of the above mentioned days are what I really dream of right now.

The day I dream of causes me to feel the dreaded “guilt” because the day I dream of would be all mine. I don’t often (ever) take a break from the diabetes care for my kids. Notice I didn’t say “get” a break. My dear husband recognises how hard I work and acknowledges the fact I don’t get enough sleep. He understands why sometimes my patience has run out and my temper is quick. He has recently encouraged me to ‘take a break’. I just don’t.

I have a difficult time asking for help. I mean a really terrible awful time asking for help. It isn’t a pride thing (most of the time), it isn’t entirely that I don’t trust others to do as good of a job as I do (if what I do is a good job – there are others who are much better at it), it isn’t that I couldn’t get away – we would have resources for me to utilize if I wanted to get away. It is that I am a control freak and if something ever went wrong when I was ‘taking a break’ I wouldn’t no how to forgive myself (also a big problem I have). I trudge along feeling tired, alone, incapable even though I don’t have to feel those things. Granted my husband would make a gazillion mistakes (sorry babe if you read this) but it wouldn’t be his fault. When Sugarboy was diagnosed I took the reigns and haven’t relinquished them very often, and even then only with multiple phone calls and texts. I haven’t given my dear husband too many opportunities to learn diabetes management like I know it. I learned by trial and error and if I don’t let others try how would they know.

So going back to my guilt laced dream day – If I really had a dream day it would be all about me. No kids (insert guilt here) and no husband (again insert guilt here). I would leave my phone behind and my computer too. I would pack up some comfy pants and tank tops, the latest edition of the Outlander series (due out in 2013), my ipod (with the next Lord John book downloaded on it to be used during the drive down), my sunglasses, a pair of shorts, my sonic care toothbrush ( I love that thing – makes my mouth happy), a package of Red Vines, my camera and my flip flops. I would get in my van rented two door convertible sports car (brand doesn’t matter) and head off to the coast (about 4 hours to a fairly decent one in Texas).

I would leave early (late) enough to arrive as the sun was coming up over the waves.
I would stop at a Starbucks and order a venti non-fat cinnamon dolce latte with only 3 pumps of syrup and no whip. I would park at the hotel that I would be staying at that night, grab my camera and take my latte for a walk on the beach. I would find a quiet place and start writing in the sand – words like anger, guilt, regret, sadness, and mistakes. I would let the tides take each emotion away leaving me light hearted and free – at least for the day. I would smile at strangers jogging and vacationers coming down early to set up a good spot for later day fun and I would know that I didn’t have to talk to them.

I would return to the hotel and ask to check in early and since it is my dream day they would say “certainly and also we upgraded you to a king Jacuzzi suite with a full ocean view”. I would run a hot jacuzzi bath (brush my teeth since they would be gross from driving all night) grab my book and sink into a luxurious bath complete with lavender and eucalyptus scents. I would have a tall pitcher of ice water with cucumbers perched near to keep me hydrated.

After the long relaxing bath and a number of chapters filled with my friends Jamie and Claire (main characters) I would slip into the complementary hotel robe and call down to have the nail specialist sent up. I would sit on my private balcony listening to the waves and seagulls as the nail specialist rubbed my feet, legs, arms and hands, buffed out all the dry stressed skin, and painted my nails.
My breakfast would arrive next; fruit salad, spinach quiche and black coffee. It would still be well before noon so I would sink down into the extra plush bedding and close my eyes for a mid morning nap.

When I awake it would be mid afternoon. The sun would be high and hot. I would slip into my shorts and a tank top, fill my water bottle, rub in some sun screen and head to the shore. Id toss my flip flops in my shoulder bad with my water and camera and I would start walking. Id stay just close enough to the tides that my footsteps leave slight indentations that are quietly washed away. I’d walk for miles – thinking, not thinking, singing to myself, not making a sound, listening to the waves whisper to me, snapping pictures and listening to children playing (not my own so I don’t have to worry about sun screen, riptides, or jellyfish), I’d watch people fly kites, rent jet skies, hop over the tides and fish. Along I would know I don’t have to do any of it, I can just walk. I would turn back when my water bottle is half empty.

In the late afternoon I would again curl up on the bed but this time I would read. I would read without a phone ringing, the dryer beeping, the kids arguing, dinner calling to be made, or the dogs barking. I would love reading but I would feel a bit sleepy so I would dog-ear my page and close my eyes. I would wake to my dinner being brought in on silver platters. Grilled salmon with mashed potatoes and asparagus, fried calamari, brushetta bread, and a pomegranate ginger martini. After savoring every bite desert would be served – chocolate moose cheesecake and a cappuccino.
After dinner I would head down to the shore again with a towel and again my book. I would read until the sun fell low and the twilight made it difficult to read with straining my eyes. At which point I would lie back at watch for the first evening stars with the whispers of the tides reminding me that it is ok to take time for myself.

I’d return to my room, take a hot shower, pull on my comfy pants and tank top and crawl into bed – setting the alarm to wake me in time to head home before my kids woke up in the morning.
During this entire day I wouldn’t check a blood sugar, wouldn’t count a carb, wouldn’t talk about school, kids, or housework.

So this is why my dream day would be laced with guilt. If I wanted to do this – I could. I make my own insulin and so theoretically I could take a vacation from diabetes. (Insert Sally Field “I could run from here to Texas but my daughter couldn’t she never could).  Prior to finding the DOC I would only feel guilty about taking a vacation from diabetes because my kids can’t, now I have grown to care about so many in the DOC that I would also feel guilty because they can’t take a vacation either.

My doctor, my husband and my family tell me I need to take care of myself to be able to take care of my kids. I’m sure they are right but would my dream day really be beneficial or would the guilt, anger and frustration I would feel after taking such a day be detrimental to my well being.

This day can never happen while my kids, friends and so many others fight the battle that is diabetes because I won’t rest until everyone else can too.

Guest Post

Woo Hoo first Guest Post – Cassie Giesberg.

You may recall another of Cassie’s guest posts on Sugar’s the Bitch not me – if not go there now and check it out – I’ll wait.

So here’s the deal. I started this blog first to clear my head. Siphon my thoughts into a pensieve – as Dumbledore would say (see I Write Because from 4/4/12).  It has helped me a great deal to share my thoughts, concerns, successes and stories. What has helped more is how I’ve become so connected in the Diabetes Online Community via Twitter. I have met (both in person and online) some of the most fabulous people in the DOC. In the last 5 years since SugarBoys diagnosis I have come to realize that people with diabetes and parents with diabetes really and truly are sweeter (yes it’s a pun – but it is true.) One of those dfabulous people I have met is Cassie Giesberg, CDE (certified diabetes educator) extraordinaire. My children have had the fortunate luck to be seen by dear Cassie. I trust everything she says and so as a parent of 2 children with diabetes I asked her to write a guest post with advice to parents of children with diabetes. I am grateful she has provided so much valuable information that I can share with you.

Hi there! I’m Cassie Giesberg, and I’ve been a member of the T1 club for almost 29 years; I was diagnosed with Type 1 Diabetes when I was 17 months old. Essentially, I don’t remember notbeing diabetic.  However, I do remember what it was like to grow up with diabetes. Depending on who you ask, my experience probably wasn’t that different from anyone else’s. However—because we diabetics don’t come with an owner’s manual—I wanted to share parts of my experience so that you can have an understanding of what it’s like to live with diabetes as a child. Hopefully, my experience will give you some ideas on how to be successful in helping your child with diabetes be a confident, independent adult with diabetes.
Like I said, I practically grew up with diabetes. What that meant for me was that my mom was responsible for my care for a really long time. With that being said, I think that she finally got to a point where was tired—particularly when she was so afraid of my diabetes and what that could mean for me in the first place. When I was ten years old, my mom sent me to diabetes camp. Right before I went, she said to me, “I can’t wait until you come back from camp. Then, this diabetes is all yours”
I’m sure that sounds appalling to most of you. But it’s a statement I’ve heard so many times in my career as a certified diabetes educator. Think about it: diabetes is a full-time job, except there’s no vacation or weekends off. That would be tiring for anyone. Remember that, because it’s going to come up again later.
I really should point out that my mother did the best she could with what she knew and what she had. She was a single parent on a below-poverty income, paying for all my diabetes supplies out-of-pocket; she never let me go without, often making sacrifices so that I would have what I needed. I hope that you’re realizing that she did a lot of things right. And believe it or not, you probably are, too.
I did want to offer up a list of dos and don’ts based on my experience. You will probably have your own to add, and that’s fine, too.
·         Doremember that diabetes—like many other things in life—is a marathon. If you were running a marathon, would you run as hard and fast as you can in order to win? Of course not! You would sprint and pace yourself so that you can successfully finish. With diabetes, you have to remember to take everything one step at a time, one day at a time. If you spend your time trying to prevent every worst-case-scenario, you’re going to wear yourself out pretty quickly. If you take your time, chances are very good those worst-case scenarios will never happen. That brings me to my next point.
·         Doremember that EVERYTHING IN DIABETES IS FIXABLE!!! If you see a high blood sugar, treat it with insulin per your doctor’s recommendations. You are going to see high and low blood sugars from time to time—if you didn’t, your child wouldn’t have diabetes. If you see a low blood sugar, treat it using the Rule of 15. If you treat these things in a timely manner, you can prevent those scenarios that you may be afraid of, as well as complications.
·         Do help your child feel as normal as possible. For me, that was a little easier because I thought that was the way things were. In one example from my own experience, my mom did help me by talking to my teachers at school and convincing them to let me talk to my classmates about diabetes and what that meant; I also showed them what taking a blood sugar and a shot (using a doll) looked like. From kindergarten all the way through middle school, my class learned about my diabetes and what to look for to remind me to go to the nurse. They grew up with diabetes just like I did, and didn’t treat me at all like a “freak”. I was just one of their friends who did everything they did, but sometimes had to do some extra things.
·         Do help your child become as independent as possible. There isn’t a “set” age for when this should happen, but when your child expresses interest in doing diabetes care, let them do what they are capable of, stepping in when necessary (i.e.: manipulation of equipment, skill/technique). Don’t be afraid to observe, and resume care if necessary (see below).
·         Do send your child to diabetes camp if you have the opportunity. Even though I wasn’t treated any differently, I knew that I was the only kid in my school that had to take shots and poke her fingers. Going to diabetes camp meant the world to me—and it opened up a new world for me. At meal times, we all had to test our blood sugars and take our shots. In fact, I learned to give my shots all by myself at camp. We all had our snacks and meals at the same time. However, we had a lot of fun, too. In fact, I had so much fun and learned so much about diabetes, that I had decided at camp that I wanted to be a diabetes educator when I grew up. I went home with a new sense of confidence and independence that I had never had before.
·         Do allow your child to grieve their diabetes. Being diagnosed with a chronic condition feels like a loss—a loss of security, independence, and even confidence. Allow your child time to grieve this; it’s a lot healthier if they do. Remember that it’s what you do next that counts. If your child decides to “give up”, then step in to help them do their diabetes care so that they know life goes on and that they have a teammate.
·         Don’t allow the blood sugar or a1c to be a direct judgment of you or your child. Remember that these numbers are a snapshot in time, and whatever they are, they can be fixed if they’re not ideal. Don’t look at these numbers as “good” or “bad”. Think of them as “in range” or “out of range”. Sure, you want that three-month average to be 7 or below (barring too many low blood sugars), but that can easily be done if you fix those out-of-range blood sugars in real time. If you constantly remind them of how “bad” their numbers are, that will set them up for failure. Your kids don’t want to disappoint you and if you remind them how much they are, chances are very good that they’ll stop being honest with you about their numbers just so they don’t disappoint you.
·         Don’t constantly remind them of what they can’t have or do. Diabetic kids already feel like there are a lot of things that they can’t do or have. In reality, there isn’t anything they can’t reasonably do or have. You and your child will be a lot more successful if you remind them of what they can do or have so that they won’t feel any more ostracized than they probably already do.
·         Don’t be afraid to punish your child if they are independent with their diabetes care, and they don’t do it. All too often, I hear, “But I don’t want to punish them for having diabetes.” You’re not. If you told your child to clean their room and they didn’t, what would you do? You would punish them. This is the same thing—except the stakes are a lot higher.
·         Don’t be afraid to step in and resume diabetes care if your child isn’t doing it. If they’re not doing their care, then they’re showing you that they can’t handle it. Remember, diabetes is a full-time job without weekends off or vacations. The best thing you can do is to give your child a “vacation”. Step in and help with their care. It will be good for you, too, because it will help you keep your skills up in case you have to do all the care for whatever reason.
·         Don’t be afraid to send your child to counseling if they are having trouble dealing with their diagnosis. People with chronic conditions have a 95% chance of developing depression. Kids aren’t programmed knowing how to deal with that, and professional assistance can only help by arming them—and you—with the tools to deal with this as it arises. Your child will be a lot more successful if they develop healthy coping mechanisms.
So there you have it. These are the main things I have dealt with in either my personal or professional life. As I said before, you’re more than welcome to add your own, because I guarantee you that I haven’t covered everything. Some of these may be hard to swallow, and they may not work for everyone, but that’s okay. However, I hope that hearing it from someone who grew up with diabetes make these things a little more valid for you.  Good luck and good health!