Use Your Words To Protect Health Care

Did you know that liquid DayQuil is an excellent chaser for Robitussin?

Day 4 of a cold that won’t quit.

Day 2 of Diabetes Blog Week.

I worked all day teaching a classroom of kindergartners and explaining to them for the second day that I couldn’t high-five, shake hands, or give hugs because I didn’t want to share germs. One little friend suggested we just give each other thumbs up throughout the day.

Is my nose really that big? Don’t answer. Gosh I hope the bags under my eyes were not that prominent when I was teaching. And this is why I don’t take selfies and I mostly stay out of photos unless they are with someone cooler than me. But I have no cat photos and a photo of DayQuil was more work that a quick selfie.

On to Day 2 and the Cost of a Chronic Illness.

And now a photo of me giving the thumbs up seems insensitive because chronic diseases are ridiculously expensive, so much so that some people just can’t afford to stay alive.

Here is the actual prompt taken from the Diabetes Blog Week FB page:

Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?
You can find a list of today’s posts here: http://www.blenza.com/linkies/links.php….

So far in my adult life I have never been without insurance.

While in college I was under my fathers policy.

While in the Air Force I was covered by the military (taxpayers, thank you – having my daughter while active duty cost me $37 which was the cost of my food while in the hospital. I had to pay it because technically the government gave me a food stipend in my pay, so if I didn’t pay for my food while at the hospital it would have been double dipping in the taxpayer funds).

After finishing my tour in the USAF I was under my husbands insurance policy through his private employer and I had both my boys while he worked for the same employer. Over the 12 years he worked for the same employer we watched our copays increase, our premiums increase, our deductibles increase, and our in network physicians decrease.

Then my husband was part of a huge layoff – basically the company thinning the higher paid employees in favor of the lower paid employees. Technically he somewhat volunteered to be part of it. He was ready for a career change and knew the severance package would be enough to get us by while he searched for another job. With the layoff we were invited to purchase COBRA. Basically COBRA allows individuals to continue on with their private company insurance for a period of 6 months by paying the premiums in full themselves. This was a huge deal since we had two children with diabetes at the time. NOT as big of a deal as a lapse in coverage could have been prior to 2012 or could be in the near future. (I rarely share any political opinions – actually I have never shared a political opinion on my blog – but anyone living with a pre-existing condition or who has a child or loved one with a pre-existing condition is very likely aware of the current American Health Care Act bill that recently passed the House floor and is due to be voted on in the Senate later this summer or early fall.

Be afraid enough to BE LOUD in your advocacy against approving the AHCA in it’s current form and use your voice.

Don’t know how to contact your Senators to ask them NOT to vote in favor of AHCA – stay tuned later and I will share an easy way to find out who your Senators are and how you can contact them. I want to stress this is not a red or blue issue. It is not anti-Trump or Pro-democrat – It is pro-humanity and caring for all the people of our great nation. Your advocacy against the AHCA is not a political endorsement for either party. It is an endorsement for compassion.

Crap – I digress.

COBRA is expensive – we have had to use COBRA twice in our 20 years of marriage. Each time COBRA premiums have been a minimum of $1500 a month and that isn’t including all the normal prescriptions and doctor co-pays.

Imagine paying $1500 a month with no income. How many working families do you know who could dish up $1500 a month for insurance with no income? How many families do you know who have a 3-6 month safety net in the bank, meaning they have enough cash to pay their mortgage, car payments, insurance premiums, food, and other debts?

Without insurance the cost of managing a chronic illness for a month can be close to the same as the insurance premiums would be, or more.

With the current AHCA that passed the House people with pre-existing conditions can be denied coverage (the bill allows states to request a waiver that would allow them to set their own pre-existing rules) if there is a lapse in coverage (see getting laid off and not being able to afford COBRA). The bill also requires those with a pre-existing condition, as well as other groups, to pay higher premiums. ^^^This is obviously a very watered down synopsis of the AHCA that will affect people with pre-existing and doesn’t even discuss how it reduces and/or eliminates other protections for those most often marginalized, including women and reproduction services such as maternity care and birth control. (fun fact – erectile dysfunction is not listed as a pre-existing condition – go figure.)

This post is already wordy and maybe even a tad preachy so I will stop here and hope that you will contact your senators and share your concern regarding the AHCA. I know the Affordable Care Act (Obama Care) hasn’t been without issues and we as a nation do need to improve how we protect the most vulnerable of our nation, improve access to affordable care for all people, and hold big pharma accountable when they increase costs of medications that are not optional. (The cost of insulin is a post for another day.)

Here is a link you can use to find out who your senators are: Find Your Senator

You can also send a text  RESIST to 50409 – and follow the instructions on the text you receive back. (Yes I know it says ‘resist’ and for some that may appear to be partisan – ok – it has become a partisan word used by the left in regards to the current administration BUT please note that diabetes and other chronic disease do not care if you are red or blue. Chronic disease does not discriminate based on political ideologies. Texting the number above and asking your senators to vote NO on the AHCA in its current form does not brand you left or right. When you email, call, or text your senators share your story. Ask them to protect your health care and the health care of those you love by writing a health care bill that protects those with pre-existing conditions and those most vulnerable such as the young and old.

Ps. It is Friday. I started this post on Wednesday, already a day behind then. Now I am four days behind. The good news is am feeling better and I have the morning before work to try to catch up and read all the posts I’ve avoided because I don’t like to risk being influenced by others thoughts before I write my own post.

I did have a fun afternoon with my kinder class yesterday creating a kinder version of Edvard Munch’s The Scream. We had spent the week learning about the systems of the human body, sans reproductive system because they are kinders. Their favorite topic to discuss each day as we reviewed what we had learned the day before, was the brain and how basically the brain does all the heavy lifting including sorting out how information that comes into the body is processed and how the brain controls, and is affected by emotions.

How discussing national health care policy likely makes us all feel.

 

 

You Are Enough For Me

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What does insecurity cause?

Fear

Anger

Depression

Resentment

I have been insecure with myself for nearly my entire life.

I’ve rarely thought of myself as attractive or smart or funny or worth anyones effort.

Insecurity leads to destructive behaviors and poor decisions fueled by fear, anger, depression and resentment.

So my wish for the remainder of 2015 and all the years to come is that my family and my friends always feel they are enough for me.

That may sound odd, maybe even a bit arrogant. That isn’t my intention. I can’t change how others in this world make my children, husband or friends feel, but I can change how I make them feel. I want them to always know that they are enough, that they are my joy, that I am their biggest fan and that they are my world.

I don’t ever want to be the source of their insecurities.

That is a hard wish to fulfill as a mom of 3 children with diabetes.

There are endless questions regarding diabetes.

“Did you bolus?”

“Did you check?”

“What’s your blood sugar?”

“Do you have fast carbohydrates on you?”

“Why are you so high?”

“How much insulin is in your pump?”

“When did you do your last infusion site?”

Those questions can often feel like attacks. They aren’t. They are just questions.

The hardest part is those questions are asked daily often to different children at different times, but that doesn’t matter since the other children hear the questions all the time. It is an almost endless narrative.

I don’t want it to be their internal narrative.

Diabetes is hard. It is constant. I want it to be nothing more than white noise.

Feeling like you are enough is a powerful thing. Feeling like you make a difference in the lives of others gives you strength and motivates you to do more while knowing you don’t need to. Feeling unconditional love encourages us to love ourselves.

I don’t ever want my kids to think they aren’t enough and I’ll be damned if I let diabetes get in the way.

 

 

 

 

 

 

Avoiding Getting High At Van Halen

As a parent of children with diabetes I can choose to get angry at the occasional ‘totally avoidable’ mishaps or I can roll with it and try to fix a bad situation without criticism or blame. Sometimes I can navigate the crazy with ease other times I lose all self control and go all ‘Mommy Dearest’ on my kids*. Thankfully yesterday was more of a roll with it day.

Yesterday my daughter and I were heading off with friends to see the first of the Van Halen world tour 2015. The concert venue was just over an hour from my home. Earlier in the day my husbands colleague and his family were visiting for a BBQ. Since it was my husbands colleagues first time visiting I had begun preparing food and picking up the house early in the morning. The visit with the other family was very relaxing and enjoyable. Still with the food prep, house cleaning and then visiting I had left my daughter to prepare for the concert. I had asked her twice between 11am and 4:30pm if her insulin pump was charged and loaded. She said it was all good.

My daughter loaded the van with lawn chairs and blankets for the concert while I enjoyed chatting with my husbands colleague and his wife while the women’s soccer team was kicking butt in Vancouver. (seriously 4 goals in the first maybe 8 min!)

My daughter sat patiently  anxiously waiting for us to leave to collect friends and be off to the concert.

At 4:50pm I asked her again – “do you have an extra infusion set and supplies”.

Daughter: YES!

So we said our goodbyes to our guests, leaving them to watch the remainder of what was surly a fantastic soccer game.

We collected our friends and were off. 45 minutes into the drive the kids spotted a Dairy Queen and requested a stop.

The kids and other chaperoning adult went to DQ while I ran next door to Walgreens for Advil and water then walked over the DQ to meet up with the kids and get a tasty treat.

My daughter was already consuming a blizzard and fries when I arrived and ordered my perfectly shaped vanilla cone.

My daughter follows me out to the van to get her meter so she could check her blood sugar. She is 326. She pulls out her pancreas (insulin pump) to correct the high blood sugar and bolus for her treats.

Then I hear: “ah mom.”

My heart sank. Crap. I know what’s coming – ‘ah mom‘ is never the beginning of ‘you are the best mom ever and I was sure to be fully prepared for our adventure thanks to your reminders and support’.

Her next words: “I thought I had 66 units of insulin but I only have 24 and my pump wants me to take 23”

In my head: #&*@&%!#&@%!#&%*#!#$*@

I look back at Walgreens and say come on.

It is 6:02pm. The pharmacy closed at 6:00pm and the pharmacist high tailed it out of there with lightning speed.

We walk back to DQ. She boluses 13 units. Why 13? – I have no idea.

At DQ I post on a local people with diabetes FB page: “Emergency, anyone in blankety blank or near blankety? Out of insulin on our way to concert in blankety. Need syringe and insulin” If we couldn’t locate insulin and syringes we would be driving back home to get supplies – that would be 45 minutes to the house and then another hour+ back to the concert which would have made us substantially late.

Next I called the diabetes camp director – She knows everyone and if anyone could help it was her. (Volunteering for camp committees has it’s privileges – it is why I had the camp directors cell number – just so any camp families don’t wonder – why don’t I have the camp directors cell phone number?)

Within minutes after sharing our dilemma with the camp director she texted me that she located a family and the mom would be calling me.

Moments later I get the call. The family lives just 3 minutes from DQ.

A quick detour and my daughter had a vial of insulin and a package of syringes.

I am so grateful for all the Facebook comments, the camp director and the wonderful family who provided the insulin and syringes.

Back in the van my daughter drew up the additional 10 units of insulin she needed and injected, leaving the remaining 11 units in her pump to provide basal insulin while at the concert.

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While she was drawing up the insulin and injecting one friend took pictures while all three kids were laughing about ‘shooting up before seeing Van Halen’. I have mixed feelings about the humor but am also so grateful for friends who are supportive of my daughter.

She put the insulin vial and syringes in her bag to take into the concert. At the security check the security guy saw the syringes and was like ‘ahhhh’ and my daughter simply said she needed the needles for her diabetes. Meanwhile our friends were having to remove the caps from their water bottles and leave the caps at the security table – weird.

The concert was good and while the members of Van Halen are old they still put on a decent concert – finishing with Jump.

Watching my daughter and her friends jump as the band played and the lyrics rang out – “when I get up nothing gets me down” I said a little prayer of thanks for insulin, the diabetes online community, a phenomenal camp director and other diabetes families.

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*I have never beat my kids with wire hangers but I have considered wiping them with infusion set tubbing. (not really)

 

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…

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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.

Parenting In The Time of Smartphones

I was against smartphones for the kids. Truly I was. I thought no good would come of it. There is so much danger to be found in a device that basically holds all the world’s knowledge, countless cat videos (as well as many not so innocent or entertaining), and all the evils of social media (and the good of SM).

There is really no way of effectively locking down the content available on a smart phone for kids. Not that I’ve found at least.

All kids need to make bad choices is opportunity and curiosity. <<<<That is the honest truth.

Ask my friend – her twin 11-year-old boys were wondering what ‘teabagging’ was. They found out.

How did I cave on the smart phone thing – simple ‘effing diabetes’.

I used an app on my phone to calculate insulin doses (this was when my daughter was taking daily injections rather than pumping). The app was wonderful. Basically I input all her ratios and when she needed to dose she just told the app how many carbs she was consuming and what her before meal blood sugar was. The app calculated the dose based on saved ratios and IOB (insulin on board – amount of insulin still active from a previous injection). It was basically all the brains of an insulin pump without the actual insulin and robot parts. The app was a wonderful tool. It tracked all her doses and we didn’t need to use pen and paper to log diabetes info. Thus after a bit we agreed to getting my daughter an iPhone so she would have the application as well. Worst mistake I’ve made. It spiraled from there – each of the boys in turn begged (demanded) iPhones when they were nine years old because my daughter got one when she was nine. We did what most reasonable, educated, loving, parents do – we surrendered.

It was all just fine for many years. The kids basically use their phones to play games, text me or a few friends, and call me or a few friends. Well except when they don’t. When instead they set up instagram accounts and flickr accounts and twitter accounts and downloaded snapchat, and KIK, and Vine and ???? who knows what else. We try to limit it – we have iTunes password protected. They can’t download and application without me or their dad putting in the password. The thing is both their dad and I hadn’t realized they had a window of time after the password was put in to download more crap without our knowing – or make in-app purchases resulting in iTunes charges of $45+.

I’ve been to the internet safety talks at schools. The presenters do a great job at scaring the crap outta parents but also providing a list of well know ‘evil’ applications to watch for. Applications that mostly exist to corrupt minds, allow for sexting, bullying, and to deceive parents. The problem is with every application designed to help protect our children by monitoring their apps or in the time it takes for government agencies to identify troublesome apps,  another half-dozen applications are launched that will corrupt our children; and trust me, our kids find them well before us or the government agencies find them.

Each time I attend an online safety talk I return home hell-bent on locking down the smartphones. This is always met with complete acceptance and understanding from my kids of course – said no mom ever. Instead it is met with defiance and outright rebellion “Why don’t you trust us?” “I’m smart enough to know better!” “It’s my phone!”

After much protest I do get my way. For a time. Then they change pass codes and I am locked out again.

I’m done with it.

LOL- all of thee above was written back in July. Ask me if my kids still have their smart phones. Yes.

I am sure back in July I had some idea of how this would be connected to parenting kids with diabetes and the tools we use to help manage diabetes. Hell if I remember what that point was now.

However – I will take this time to say this. Since the 2014/15 school year has begun I have taken away my oldest kids phones a few times. Yup I have sent them out the door to the bus with NO phones. No way for them to text me blood sugars. No way to ask questions. No way for me to send reminders. Guess what – they returned alive and well. Occasionally there were high or low blood sugars and

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they handled them. Sure there was a time when my son ran out of insulin and needed to use the office phone to call me. Yes, schools still have office phones. In fact most schools have classroom phones too. So remember a moment ago when I said my kids had no way of informing me about blood sugars or discussing issues – yeah scratch that. It’s true I couldn’t send them 342 reminders to check and bolus but somehow they figured it out.

Ok I know my kids are older than many. They are 15, 12 and 10. We’ve had diabetes in the house for nearly 8 years. We have some experience under our belts. Not all my readers can say the same. I encourage every family to do what works best for them and I ask every family to avoid judging families that do things differently.

I currently have both adult friends and friends with cwd who use the CGM in the cloud thingy or nightscout – honestly I am not entirely sure what it is all called. If that is what works best for you and/or your kids then Woot Woot.

I have friends who require their kids (of all ages including high school) to share every blood sugar via text while away from their parents and many of those kids likely appreciate the support.

I have friends who barely give diabetes a thought – they trust their teens and pre-teens to do what is necessary and only get involved when asked by the teen.

Parenting styles will vary in nearly every aspect of raising kids. I honestly don’t care if you breast-fed, bottle fed, allow endless TV, buy M rated video games, schedule playdates, attend church, tell them about Santa, or how your family chooses to manage diabetes. I do care if you vaccinate – please do – Jenny McCarthy and those that blindly follow the anti-vaccine ideals put others at risk daily. The studies that linked vaccines to autism have been proven false and were complete lies with falsified study results.

So basically this post started out by talking about the evils of smartphones and kids and took a sharp turn to land at the stupidity of the anti-vaccine movement. Sorry.

Confessions of an unstable parent: I look for reasons to ground my kids from their phones. shhhh.

 

 

I Hate Our Normal

When I was growing up summer was a free for all. As long as my chores were done and it wasn’t my day to watch my younger siblings I was off doing all kinds of crazy crap. My crazy crap included long hikes in woods where we made our own trails, catching tadpoles in the pond, jumping in lakes, long bike rides (often to the store to buy soda and candy), walks to the A&W for hotdogs and floats, impromptu baseball games using our flip-flops for bases, unplanned sleep-overs and building forts. My parents both worked so honestly they never really knew what I was up to, where I was or when Id be home. This is how I spent my years between ages 8 and 15. When I was 15 I got my first job at a photo lab and road my bike there each day to work. It was a grand time. My biggest worries were mosquito bites and sunburn and honestly I didn’t actually worry about either.

We recently moved to one of the most beautiful places within the continental US. Everything is green, the air is warm but not hot, the breeze is cool and clean and there are countless trails and ponds to be explored. Our neighbors are wonderful and the neighborhood is full of kids of all ages. My doorbell rings non-stop with kids asking if my boys are home. Kids come and go jumping on the trampoline, playing lacrosse in the yard or basketball in the driveways or scooters in the road, assassin in the cul-de-sac, and playing video games in the rec-room. It is all just wonderful.

Then on a random Tuesday afternoon I am reminded that our normal is not the normal I grew up with and I’m pissed.

Middles was playing video games in the basement (rec-room) with a few friends. Their laughter could be heard on the 3rd floor. All is fabulous. Then after a few moments I realized the laughter was gone. I checked the basement and all the boys were gone. I didn’t think much of it they were likely all in the backyard or the cul-de-sac or the park down the road. I actually smiled to myself thankful they’ve put up the controllers and gone out to play.

A couple hours passed. I wasn’t watching the clock because Middles was gone but rather because I needed to get Sugarboy to soccer. I fed Sugarboy and hustled him off to get ready for soccer. I figured I best let Middles know I was leaving for a bit so I called his phone. No answer. I called again. No answer. Again. No answer. Then Sugarboy yelled down from the stairs – ‘Mom are you calling Middles phone?”

Crap. It was on his bedroom floor.

I turned and saw his glucometer on the counter. I checked the clock again – now its been over two hours since he was last home. How long before he had left had he checked his blood sugar? When did he last eat? Crap. I have to leave, Sugarboy will be late otherwise.

Middles and his friends were not in the backyard. I couldn’t hear them by the pond. They weren’t in the driveway. I grabbed my keys and drove through the cup-de-sac (it’s really more of a circle  with a wide group of tall trees and heavy brush about 50 feet by 100 feet in the center which works well for assassin, Nerf wars and airsoft assaults), I drove the 1/4 mile down the road to the park checking other driveways as I went. No Middles to be found. (I wouldn’t normally have driven but I was in a hurry)

I started to panic a little. Over two hours without a blood sugar check (which by itself is not an issue), no fast acting sugar on him, no cell phone on him, do these friends understand diabetes? Has he told them what to do in an emergency? Crap. Crap. Crap.

I call a few neighbors. Have you seen Middles? Nope.

Finally after what felt like a hundred hours but was more like 4 minutes I see him emerge from a friends backyard with his friends all boasting lacrosse sticks.

That’s when I let out the breath I didn’t realize I was holding.

He approached the van. Casually he asked where I was off to. I simultaneously wanted to throttle him and hug him.

I told him I was taking his brother to soccer and asked him to get his phone, check his blood sugar and put some fruit snacks in his pocket. I didn’t need to scold him. I could see in his face he knew he messed up. He apologized and told me they were gonna toss the lacrosse ball around in the backyard.

I dropped Sugarboy off at soccer then cried as I drove home.

Screw you diabetes. Screw all of it. Dammit I just wish my kids could disappear into the woods, skip rocks at the pond, ride bikes to the market to get ice-cream, and worry about nothing but bug bites (we will ignore the fact for the moment that there are bears and other clawed animals living in the woods around me).

Yes, I know things could always be worse. My kids are happy, healthy and able to do everything everyone else can do – it’s all the extra crap they have to do that is pissing me off right now.

This feeling will pass and I’ll gently remind my kids to have phones on them and charged, candy in their pockets and to keep me updated on their general whereabouts.

Raising kids with diabetes has many challenges (school care, nighttime numbers, birthday parties, sports, sleepovers, etc). When they were little they were nearly always with me or another adult well versed in diabetes. However they insist on growing on with each year they want and deserve more freedom to explore the world around us. This is just another challenge we as a family with an uninvited member will need to negotiate.

 

 

“Diabetes In His Eyes”

(not about diabetic retinopathy)

UGH UGH UGH

So this weekend Middles was watching Looney Tunes. I love Looney Tunes. Bugs is my favorite – laid back and witty. So after an episode Middles called for me. Told me I had to watch something, “it was so funny” he said “it says diabetes” he added. He rewinded the episode and shared a little ditty with me.

eyesphoto

http://www.youtube.com/watch?v=6j_65lYDFYU

Sweetstuff and Sugarboy were also watching. A minute into it I could see Sweetstuff’s anger rising. Sugarboy looked unimpressed. Middles was bouncing along with the tune.

Sweetstuff said “this isn’t funny. It’s wrong.”

I hushed her. I told her he doesn’t know all that she knows. Give him time. (This was said in a whisper to Sweetstuff to avoid Middles feeling ashamed or unappreciated.)

There are many things that upset me initially while watching the little cartoon. (not the least of which was the annoying sound of the singer’s voice, the fact that Bugs had to drink filtered water (tap water is just as good for us and doesn’t hurt the environment like bottled water), and the fact that few kids would know what a misua salad is.)

It reminds me of that famous meme about Billy and his candy bars.

This meme is stupid. It is wrong. It is misleading. It isn't funny.

This meme is stupid.
It is wrong.
It is misleading.
It isn’t funny.

I considered the cartoon for a good deal of time – nearly 24 hours now. I’m not as angry or frustrated as I was initially because the producers/writers/illustrators have good intentions.

They want kids to eat healthy. That’s always good.

Encouraging healthy eating is something all parents should do with their kids and loved ones.

What I don’t appreciate is linking poor food choices to diabetes. Regardless of the type of diabetes (not that the writers differentiated) it is not necessary to use diabetes to discuss healthy eating. Encouraging our loved ones to make healthy food choices is not best accomplished with scare tactics.

I’m disappointed in you Bugs. You broke my heart.

Wish It Was Today

Day 26 Health Activists Writers Month Challenge

What’s a day that you wish you could use a pain-free pass? How would being pain or worry-free impact that day?

A pain/worry free day? Couldn’t it have been today? Couldn’t today be the day that I woke up happy and carefree? I tried. I really did try. When my alarm sounded at 6:30am and I reached for my phone (that is my alarm) I tried to be joyful. It didn’t work.

I hit the snooze line on my phone. I didn’t want to get up. Conversations, arguments, and unhappy thoughts flooded my brain the moment I became conscious. I realized I slept through a 3am alarm that was set so I could check a blood sugar on my youngest. This resulted in fear and guilt until after I checked him and his meter registered a perfect 104 (seriously I should have snapped a picture because it could be used in an advertisement for the meter – most advertisements always show perfect blood sugars even though most blood sugars are not perfect.)

My daughter slept through her morning alarm as well and thus was still sleeping soundly when I went in to wake her. I checked her blood sugar and she was a little high, gave her insulin for the high and dosed her for her breakfast then asked her to hurry since she was running late.

My chest hurt as I went downstairs. I don’t believe I am suffering from any medical issues – just anxiety. I began the process of packing lunches then realized I didn’t type and print the index cards my Middles asked me to complete for his class presentation today so lunches would wait while I typed up his notes and printed his cards. More chest pain.

Anxiety and depression feel like heavy weights in my chest. They may be emotions but the pain is real.

This week has been craptastic.

Middles has been experiencing stomach pain, chest pain (rapid heart rate), and headaches. He is not one of my kids with Type 1. But – he is at risk based on studies that show he is positive for all the anti-bodies found in those who develop Type 1 diabetes. He has had a number of what I call “pancreas hiccups” meaning when I have checked his blood sugar at random times after meals and fasting his numbers have been above what is considered normal but below those that would indicate he already has Type 1 diabetes. With the increase of odd symptoms including stomach pain, rapid heart rate and headaches (some of which have resulted in him being unable to stay at school and all of which are those my daughter experienced before her diagnosis) I called the other kids endocrinologist and requested an A1C and glucose tolerance Test.

His fasting blood sugar was 98 – (normal/standard results are 60-99) = just barely pass (although this was at 10:30am, when I checked him first thing in the morning he was 133)

His glucose 2h post 75g glucose was 162 (standard range is <139) = fail

His Hemoglobin A1C 4.7 (standard is 4.6-6.0) = pass

What did the tests tell me – nothing I didn’t already know – my Middles is still experiencing pancreas hiccups and there is a high probability that the storm is coming. When I think of this I always think of the last moments of the original Terminator movie when Sarah Conner is about to drive away with her dog and a young boy says “a storm is coming” and Sarah says “I know”.

Does knowing change things – not really. I can’t stop it. I can try to slow it down though. How can I slow it you ask – I can try to reduce the stress on his pancreas by discouraging him from eating huge amounts of carbohydrates. (since I’m the parent by discouraging him – I mean not allowing him.) But wait you say – carbohydrates and sugar don’t cause Type 1. You are correct – a person does not develop Type 1 by eating too much sugar. Still if I can help his body keep his insulin producing beta cells less stressed by reducing the fast carbs he eats than I will certainly try. I haven’t talked to the endo yet to confirm my beliefs but it sure makes sense – right? I know my husband thinks so because when I told him the results through tears over the phone on Thursday he spent the next 10 minutes lecturing me regarding how our family needs to eat better. (Yes that is a dig on my husband because at that moment I needed a hug but instead got a lecture. I don’t blame him entirely – I think many people (and by people I mean most men) think that providing suggestions and what they believe to be solutions is what others need during a problem (the whole fix-it thing). When honestly no matter how right the fix-it person is – the person that is upset needs hugs and support first.)

Anyway – I already restrict fast sugars in my home but that doesn’t mean there is never a bowl of Fruit-loops on the breakfast table, a chocolate Santa or Egg on the holidays, a bowl of ice-cream in the evening. My kids don’t drink juice or eat any type of fruit roll-up, fruit snacks (except for treating low blood sugars). They rarely get to eat candy that isn’t chocolate – although sometimes they do. Cookies, cakes and brownies are all served sparingly. We use whole grain bread and don’t often eat french fries or other fried fast foods. Overall I feel I serve my kids healthy fresh foods but there is always room for improvement.

Anyway back to today.

I have all this anxiety. Anxiety over my Middles. Frustration that my home is mess and never seems to get clean. Guilt because I feel I was too hard on my Middles regarding a project for school that I feel he neglected. Disappointment that my daughter and her dad spent the evening prior arguing yet again (something for which I am most often blamed for with the phrase “You’re just like your mother.”) My chest hurts and I’m tired. I’m always tired.

But why should today be THE pain/worry-free day. Because it’s my birthday. I didn’t ask for anything. I don’t need or want anything material wise. I just wanted today to be pain and heartache free. It hasn’t been and I don’t suspect it will get any better as the day progresses. I do want to thank all my friends for the facebook and twitter birthday wishes and texts. They do mean so very much to me.

For now I’m gonna wash the dishes, vacuum, do laundry and plan what’s for dinner. When my I pick up my kids I will smile and laugh and love them regardless of the pain in my chest. I might drive straight from the schools to the beach. The beach always helps.

This too shall pass. I will push pancreas hiccups back into Pandora’s box. Middles next school project will be better because of the lesson’s learned via procrastination with the project he is presenting today and my daughter will grow up to be a strong confident woman BECAUSE she is like me.

Oh and I just learned that we are out of toilet paper. There is half a roll in the kids bathroom but otherwise no other toilet paper in the house. How did I allow us to run out of toilet paper? I blame Costco – I buy stuff in bulk that seems like it should last through the zombie apocalypse thus I always think we have plenty. I’m gonna put the left over Halloween napkins in the bathrooms.

Reflections

Ok I admit it – it was me – I suggested the prompt for Day 21 of the Health Activists Writers Month Challenge. Adversity – “The flower that blooms in adversity is the rarest and most beautiful of all.” True or false? When do you bloom best?

My favorite Disney animated movie ever is Mulan. Screw all the princesses waiting in towers and laying down on the job waiting for some man to come save them. Prince Charming is a myth. Mulan kicks ass. Had to be said.

I want to start by saying I don’t always go looking for adversity. I certainly didn’t ask for diabetes to join our family. But do I bloom best when I am fighting for something? Yes.

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The first 2 years after Sugarboy was diagnosed I didn’t do much with diabetes other than attend the Friends For Life conference each year and raise a little money with the JDRF Walk to Cure Diabetes. I didn’t reach out to others, I didn’t educate others aside from friends and family that would be in charge of my son. It was a very lonely time for me and I spent much of it just being angry. Then came my daughters diagnosis. My advocacy still didn’t improve much although my anger did.

Then I got to a breaking point – I got tired of the lack of education about diabetes. I got tired of being alone. I got tired of waiting for some miracle.  I called the local JDRF office and asked what I could do to get more involved. I was invited to watch a staff member present the Kids Walk To Cure Diabetes at an elementary school. Then I was invited to count money at the schools after the fundraiser. Shortly after I was asked to present the walk to the students. The more often I presented the more passionate I became about educating students about diabetes. Teach them when they are young about healthy living and diabetes – that’s the key. Adults don’t have the time or energy to learn unless they have to. The kids I spoke to learned about the different types of diabetes, how the digestive system works, eating healthy, exercising, and working for a cure that would benefit all people with diabetes regardless of the type.

I grew so much in that first year volunteering with the JDRF. Diabetes still sucked but I became a much more powerful person. I force to be reckoned with. Out of all the chaos that diabetes caused I became an advocate. I stopped sitting around waiting for others to fight a battle – I suited up and went to the front lines.

There are people in my life that think I say and do too much. No – seriously – there are people who think I make too much of diabetes. If they do not understand I pray they never have to.

I so wish I could kick diabetes out. That diabetes never happened. That life went on with all its mundaneness. I can’t though. However, having diabetes in our lives has made my kids and I stronger, smarter, braver, more loving, more empathetic, and more honest about who we are inside. Yes – a play on the song “Reflection” by Christina Aguilera from Mulan. Hear it HERE.

Some people in my life may not see my strength, my passion or the beauty within my heart but in the last couple years I have finally seen it. I still get shit wrong. I still make mistakes. I still get sucked into sadness and overwhelmed with anger. BUT I finally see my reflection as I always knew it should be.

 

Grumpy Cat Says – No.

Day 24 Health Activist Writers Month Challenge

Today I was supposed to create a Pinterest board and share it for wordless Wednesday. Instead I drew a picture. I drew the picture because I am still unclear about all the laws pertaining to using other people’s photos without permission. I don’t happen to know Tardar Sauce’s “Grumpy Cat” family so I drew him instead. (I do not claim to be an artist and trust me when I say no one has ever accused me of being an artist)

gphoto

 

There are folks in the diabetes community (mainly moms of children with diabetes) that are proposing a name change for diabetes. It is their belief that changing what we call diabetes will end confusion and stereotypes. I don’t believe it will. For the past couple weeks I have been drafting a post about the name change petition/proposal. It was gonna be great, it was even going to quote Shakespeare. The thing is some of the best and brightest in the diabetes community beat me to the Shakespeare quote and they wrote awesome posts and said everything and more that I would have said. I can’t say it better than them or better than Grumpy cat.

Please check out these posts by fellow diabetes bloggers to learn more about the proposed name change.

Bennet at YDMV

C at theperfectd

Scott at Strangely Diabetic

Bob at T Minus Two

Lee Ann at The Butter Compartment

HERE is short video with Manny Hernandez the founder of TuDiabetes  about a different petition – a petition to unite us. This is the one I signed but you should make your own choice.

Here is the Petition to change the names of diabetes. I just want to say I respect these moms. I understand where they are coming from and what they are trying to do. I just don’t agree with them.

No Take Backs

Day 18 Health Activist Writers Challenge  – Write about a time that you lashed out at someone close to you because of frustration/fear/anger resulting from your health condition and wish you could take it back. Forgive yourself and let it go. On the flip side, write about a time that someone said something to you that they wished they could take back. Did you forgive them? Why or Why not?

I can’t recall a time I lashed out at someone because of diabetes. However, I have at times complained about my life to someone who has a whole lot of problems themselves – medical, financial, spousal.

This person is very dear to me. I hate seeing her in pain and I can’t really do anything to help her. I listen when she cries, I try to validate her concerns and offer hugs (although only via phone calls since we live so far away). I do my best not to complain about my own issues when I talk to her. In the past when I have complained about lack of sleep, discussions with my own spouse, issues with my kids, problems with schools and diabetes, she rarely empathises. Instead she always plays the devils advocate – sides with everyone but me. She has at times called me spoiled. Sometimes that is helpful but sometimes I just want validation. I’m sure its hard for her to hear me whine. In her eyes I have all I need. In her eyes my life could be so much worse. In her eyes I have all that she would love (minus kids with diabetes). She has said as much to me – many times.

I know what she says is out of love for me in hopes of helping me recognize what I have and out of the desperation she feels in her situation. I don’t hold grudges for the times I’ve talked to her and our conversation didn’t go as I hoped. I am sad for her often. I wish I could help her in some way. I know I can’t. So I listen when she is upset. I empathize, I validate. I am not suggesting in any way that I am a bigger or better person. In fact I frequently feel guilty for having more than she does and for occasionally feeling sorry for myself. She is often the better person.

Everyone has something – everyone fights a battle of some kind. I have learned something from my years of conversations with this very dear person – it’s never a good idea to complain about a life that is perceived by others as a blessed one – even if I sometimes feel less than blessed. That may seem unfair – you may think that if someone loves you they should not judge you for occasionally whining. The thing is – when that person believes you to be truly lucky and is happy for you for all you have – complaining about it is like a kick in the face.

I can’t take back all the times I complained about things that seem like child’s play (not diabetes stuff – cus that she totally gets – although she accuses me of being too involved – almost obsessed – that’s a post for another day). I can’t take back all the times I whined about being exhausted while being able to stay home and likely take a nap while she is equally exhausted but must go to work. I can’t take back all the times I whined about how  my kids are spoiled when she struggles to provide for her own. All I can do is recognize my mistakes and recognize that she has her own struggles and mine, while difficult for me, are something she would welcome (again not diabetes).

I have nothing to forgive but I hope she forgives me for all the times I was insensitive.

Always Tell The Truth

This is my Day 16 Health Activist Writers Month Challenge. > Tell us 3 things that are true about you, your condition, or your health activism. Tell us 1 lie. Will we be able to tell the difference?

“If you tell the truth you don’t have to remember anything.” Mark Twain

I’ve known a few people in my recent years that find it easy to lie when asking for favors. An example –  ‘friend’ that asks me to care for her cats and her mother for some reason – I honestly don’t care about the actual reason – I would do it regardless. Still she shares some story that she believes will make me more empathetic – yet the truth comes out and then I feel used.

Why people believe they have to make up an excuse to ask for help is beyond me. It’s insulting really – trust me to be kind and supportive without a made up back story. Give me that courtesy if you ask for my help. Does one think I’d be less inclined to help if I knew you just wanted a weekend get away? How often does a person have to be ignored or accused of being selfish before they start making up stories to get help?

Another example – a ‘friend’ shares her extreme financial difficulties but then goes on a shopping spree and shows me all her ‘deals’ – the receipt is on the counter I can see what she spent which is 4 times what she tells me she spent. Does she think I will judge her for therapeutic shopping – yes its stupid when you are behind on your mortgage – but I would understand. I was once a therapeutic shopper. Why lie to me? I’m not the credit company and she doesn’t owe me money.

Anyway – the above is totally off topic but was bothering me. I don’t like being lied to. I feel better having vented.

As far as my truths and a lie about me:

  • It doesn’t bother me that I will soon be entering the last year of my 30’s
  • I have a difficult time asking anyone for help
  • I would rather speak in front of a thousand strangers than get on an airplane
  • I am scared to leave my kids with anyone overnight

Truths and a lie about diabetes:

  • Everyone is at risk of developing some form of diabetes in their lifetime
  • Type 1 diabetes can be prevented by breast-feeding ones children and by avoiding vaccinations
  • People with diabetes can not join the US military or pilot a commercial airline in the US
  • Type 1 diabetes in children is increasing by 3% each year

I will choose one random reader that answers both questions correctly to receive their very own Stick With It Sugar mug. Not the one pictured – that one has my Sumatra in it – you will get an unused one.

mugphotoGive-Away will end Saturday April 20th at noon CA time. I will not respond to any comments before then. Good luck.