Dear Newly Diagnosed,

A friend just sent me a text telling me of her friend in the UK whose son was just diagnosed with Type 1 diabetes.

He’s 11. If he is a wizard he’ll be heading off to Hogwarts in a month and no doubt Madam Pomfrey would fix him right up. Perhaps there is a potion similar to Skele-Gro that can be used to grow new beta cells.

If only.

The text from my dear friend regarding her friends sweet boy is just one of three I’ve received in the last few months. I’ve connected via the phone with the other two moms but since this friend of a friend is in the UK, phone calls are more costly so I told my friend I’d write this post so she could share it (my friend asked if she could share my blog with her friend). I haven’t written in some time so my recent posts may not make sense or be relevant to a newly diagnosed family.

Why didn’t I write ‘a parent of a newly diagnosed child?’

Because honestly when a child is diagnosed it is a family affair. I mean no disrespect to those living with diabetes, I’m not suggesting those of us with fully functioning pancreases will ever truly understand all that it is to live with diabetes. We won’t. Just like those who have diabetes that don’t have children with diabetes may never truly understand us. The best we can do is be empathetic and try our best to be supportive of each other.

Crap I’ve already digressed and now the new parent is wondering when the bloody hell I will get to the point.

So here goes, if you are a parent, grandparent, family friend, or sibling of a recently diagnosed child, I am sorry you have reason to read this.

There will be many well-meaning folks that will do their best to console you. They will say things like:

“At least it’s not cancer” Yes, cancer is bad. Very bad. And yes at least diabetes is not cancer, but right now diabetes is a huge scary monster that has, in your mind, stolen your healthy child. Thus, unless the folks who say ‘at least it’s not cancer’ have had cancer, lost someone to cancer, have diabetes, or love someone with diabetes, they don’t understand the difficulties of a lifetime diagnosis but they mean well.

“It could be worse” Things can always be worse so this phrase can be used for anything. Stubbed your toe, could be worse, could have whacked your balls on the corner of the table as you tripped, thank goodness it was just your toe. Still your toe hurts and knowing it could be worse doesn’t make you feel better. Again, well-meaning people say stupid things because they don’t know what else to say.

“Oh my granny had diabetes, lost her leg, she did.” People say this in an attempt at empathy. They are trying to connect to you. They are trying to say they understand. They do not know that when a person with diabetes or a parent of a child with diabetes hears of amputations, complications or death due to diabetes we immediately think of how that could happen to the ones we love, or themselves if they have diabetes. Of course pwd/cwd (people with diabetes/children with diabetes) and those who love them don’t need or want these reminders. That B roll is often played in our minds. Thankfully it becomes a re-run that we skip over as we watch those we love with diabetes thrive.

You will also get a lot of questions and you will get the same questions repeatedly from family and friends for the first bit after diagnosis and it will be both annoying and comforting. Annoying because you are answering the same questions again and again but from different folks. Comforting because those that ask questions care about you and your child and that will let you know you have support. Just keep in mind it is a new person asking each time unless you have some self-absorbed neighbor that asks the questions but only as a courtesy before they start telling you about their most recent colonoscopy. You know the type – the type that just wait for their turn to talk. You should totally toilet paper that neighbor’s house, but then you’d have to listen to them whine about how their house was toilet papered. (If there is no such thing as toilet papering a home in the UK – it is when full rolls of toilet tissue are tossed up and around trees and shrubs in the garden.)

This is already excessively wordy. Here is a picture of my dog to break up the wordiness.

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There are many ways to manage diabetes. There are insulin pumps that are worn 24/7/356 that infuse insulin into the body. Most types of pumps have tubbing that connects to the body via an infusion site that is moved every 3 or so days. Most newly diagnosed pwd/cwd spend at least a few months taking daily injections. This is often referred to as MDI (multiple daily injections). There would be one injection of a long acting basal insulin that helps maintain sugar shifts due to hormones and the normal functions of the body. The other daily injections are taken when the pwd/cwd eat or to correct a high blood sugar. Using an insulin pump means no long acting insulin since the insulin pump continually infuses insulin to simulate what a working pancreas would be doing and then is also used to bolus insulin at meals and to correct high blood sugars. The amounts of insulin various based on amount of carbohydrates consumed, current blood sugar, and insulin sensitivity factor.

All pwd/cwd check their blood sugar multiple times a day using a blood glucose meter. A tiny poke of the finger to draw a tiny droplet of blood and 5 seconds later a little device tells you a number. It is not a report card. It is not a good or bad number. It is a just a number. The number will help you decide how much insulin is needed or if carbohydrates are needed. I stress the not a good or bad number because small children will attach their self-worth – shoot adults occasionally attach their self-worth to that number. Imagine if 5-10 times a day you were told you were good or bad. So, it’s a number and a decision is made based on the number then the world continues to rotate on its axis.

Obviously if you are a parent of a recently diagnosed child or a recently diagnosed adult you know about bolusing insulin and checking blood sugars. I included those bits for extended family and friends who did not get a crash course about diabetes care in the hospital. But the reminder about good vs bad is for everyone.

Below are a list of insulin pump manufacturers if you are interested in learning more about insulin pumps. There is also a link to the Dexcom page. The Dexcom is a continuous glucose monitor. It monitors blood sugars 24/7 for the length of time it is worn. My 3 cwd use the Dexcom G5. They typically wear each sensor or 14-21 days (per manufacturer it is only approved to be worn 7 days but very few people follow that). My two boys use the Animas Ping insulin pumps. My daughter uses the Tandem T:Slim. We have never tried the Omnipod insulin pump. Yes they are listed in order of our preference although Animas and Tandem are equal in my preference. Animas, Tandem, and Medtronic all offer an integrated pump (Continuous glucose monitor data can be seen on pump screen) but our family choses not to use integrated pumps since CGM technology advances faster than pumps and we like to be able to use the most recent CGM tech. Also the Enlite CGM that is used with the Medtronic pump is substantially inferior to Dexcom technology per user experience and data submitted to FDA. There will be a new Tandem pump released by year-end and if I understand things right it will be able to be updated with new CGM tech as it comes out.

Pumps:

Animas 
Tandem

Omnipod

Medtronic

Continuous Glucose Monitor: Dexcom

I know much of this seems overwhelming and the pump/CGM stuff may be too much to think about right now.

If you or your child was diagnosed recently know that there is a grieving process.

Receiving a diabetes diagnosis is hugely life changing. As a parent I have received 3 such diagnosis. Each time my reaction has been different in some ways but the same in many others. Each time I have had to allow myself to grieve for the future I had pictured for my kids. I do believe my kids can do everything people without diabetes can do but they will always have to do so much more along side it. So I grieve for their loss of freedom and their loss of completely carefree days and nights. People with diabetes climb mountains, compete in professional and olympic sports, race cars, become rock stars and actors, serve in public office, are school teachers, truck drivers, doctors, nurses, mail carriers, and more. You or your child should never consider the possibility that you/they couldn’t be anything they want to be.

There will be sleepless nights when diabetes behaves badly with high or low blood sugars and as a parent you stay up or set an alarm to check your child’s blood sugar while he sleeps. I strongly suggest sharing this responsibility with a spouse. I took on all diabetes care myself when my youngest (first one) was diagnosed since I wasn’t working outside the home. Sleep deprivation is a bitch. It causes weight gain and can lead to depression. Share the responsibility and take care of yourself or you will be of no use to your child or anyone else.

I feel like I’ve rambled on far too long.

Again I am sorry you have reason to be reading this.

I would like to tell you it gets easier.

It doesn’t. But, you get stronger. Your child gets stronger.

A side effect of diabetes in children is they (the children) often grow up faster. Facing ones own mortality can do that. To reduce the negative side effects of diabetes I encourage you to keep doing everything you were doing before. It means more planning and it likely means trusting others (after a thorough tutorial) to care for your child. Make diabetes second or even third to everything else. Say good morning and hello before asking for a number. Focus on saying yes to as much as you would have said yes to before the diagnosis.

In case you missed it in my profile. I am not a doctor or medical professional. I am a mom of three children with diabetes. My youngest was diagnosed at age 2 in 2007. My oldest was diagnosed 2 years later at age 9 and my middle child was diagnosed 4 years after that at age 11. Don’t worry – multiples is rare. We are just special. I am not an expert at anything. I have not always followed the advice I’ve shared. I only can share it now because I learned the hard way what didn’t work.

My last piece of advice is to find others like you. If you are a parent find other parents. If you are a newly diagnosed adult find other adults with diabetes. Online connections count. You can always find me via my Stick With It Sugar Facebook page and you are always welcome to email me through this blog. I will do my best to answer questions or connect you with smarter people that can answer questions I can’t answer.

To quote Christopher Robin (AA Milne)

“You are braver than you believe, stronger than you seem, and smarter than you think.”

 

 

35 Minutes

“I’m 127”

“Ok, don’t forget your helmet”

So my youngest, he’s 10, was heading out on his bike with friends on Saturday. We live in a quiet neighborhood scattered with parks and trails. Surrounding us are acres and acres of forest with streams, lush flora and abundant fauna. Trails weave in and out of the vast forests throughout the neighborhood. Some trails do indeed lead out of the neighborhood into surrounding towns and even down to a 200 foot cascading waterfall. There is one trail just a block from my house that descends deep into a forest with various side trails leading in different directions including the falls and other cities. I’ve told my kids to stay off that trail unless with me or their dad. The decent isn’t steep due to many switchbacks but the elevation difference is indeed quite a bit from the starting point near our home. There are also dangerous animals that live among us. Bears, Bobcats and Cougars. While I’ve not seen any in our neighborhood they are here.

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the bridge over a creek about a mile from the house down the trail.

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The beginning of the trail.

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A glimpse of how deep the trail goes. This is taken about half way down and goes oh so much deeper.

 

So off my kiddo went with friends to the park near our home. I’m sure if he got caught up in the moment or perhaps even made the conscious decision to ignore my requests that the kids not venture down that trail. 25 minutes after his departure I rang him up to ask how and where he was.

“mom we went down blank blank trail.”

“the one near our house?”

“Yes, we got to the end and now we are on a gravel road. I don’t know where.”

“can you check your blood sugar please.”

“I think I forgot my meter.”

silence

“ok I need you to come home and get it and check.”

“It’s a long way up. Henry (name changed) said there is a burger place close”

“A burger place? In the forest?”

“I don’t know. It’s called Burger place (changed name).”

I googled Burger Place. It was in a neighboring city. 2.7 miles from my home.  A 25 min drive since I can’t drive as the crow flies.

“Ok I’m calling Henry’s dad. Go toward the Burger Place. I will come there.”

I spoke to Henry’s dad. He agreed to head that way too.

From the time I called my boy and the time I saw him and his friends emerge from a trail near the Burger Place was about 35 minutes. It was the scariest 35 minutes ever. The boy left the house with a blood sugar of 127, which is in range but could easily drop with all the physical activity. Granted it was all down hill. I had no way of getting to him if he was still lost in the forest. No way of finding him if he was hurt or low. (well technically he had his iPhone and I did try to use ‘find my phone’ but the password had been changed so it was useless) He had no fast carbs on him. His friends know nothing of diabetes.

35 minutes of me freaking out. Not out-loud though. I kept it together for him and for Henry’s dad. In my head there were scenes of search dogs and helicopters. There were two friends standing helplessly while my son passed out. 35 minutes of me hating diabetes so much I could have screamed and cried and beat up the universe. I was much younger than my son when I took off on my bike for hours. No phones. No helmets. My friends and I would disappear into the woods behind our home for hours and hours. Trying to find the missile silo shafts of the old Nike Missile Sites. (we never found any) I spent 35 minutes wondering how many moments diabetes would steal away.

The truth of course was I wouldn’t have been so worried had he had his sling pack that held his meter, juice boxes, fruit snacks, and granola bars. Had he been prepared I wouldn’t have been worried. I likely would have been mad he went down a trail I asked the kids not to go down (of course that request was made a year prior when we first moved here so he probably forgot). I didn’t have time to be mad. I was too busy hating diabetes.

He had set down his sling pack when he dutifully put on his helmet per my request. I found it resting on a box in the garage.

His blood sugar when he arrived at Burger Place was 97. He was safe. He was smiling ear to ear, so pleased with himself for navigating the trail and riding to a burger joint. I gave him money and he ordered a hotdog, fries and a milk shake.

I put his bike in the back of my van. He didn’t want to try to ride back up the trail and neither did the other boys. Henry’s dad took the other bikes and I took the boys.

I dropped the other boys at Henry’s and continued home.

Sugarboy and I chatted about what it means to be prepared. How he isn’t supposed to leave the neighborhood and that includes taking trails leading out of the neighborhood. We talked about how fun and scary riding down the trail was. How the Burger Place had the best fries and great chocolate milkshakes. We talked about maybe putting some fruit snacks in his pockets just in case he doesn’t have his sling bag. We talked about how he can do everything and anything anyone else can do despite diabetes.

It ended well, but I guarantee you I aged 10 years in 35 minutes.

 

Wordless Wednesday

Yesterday April 1, 2015 was the first day of The Health Activist Writer’s Month Challenge.

I’m not starting out well for the challenge since I’m a day behind and it’s only day two. The challenge is to write using the 30 prompts provided.

I also avoid selfies. I’m not feeling great about my physical appearance over the last year.

So instead of a selfie, inspired by my daughter’s socks that depict Edvard Munch’s The Scream, I painted what I call a 5 minute masterpiece. (It actually took about 9 minutes)

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The actual prompt for today:

“Since this is the start of HAWMC, post a picture that shows how excited your are for the next 30 days. We always love a good Health Activist Selfie!”

I am excited to participate in The Health Activist Writer’s Month Challenge. I am a bit worried I won’t be able to keep up. Note again how I am already a day behind. Life gets crazy. with three kids with diabetes. I will do my best and try not to berate myself when I don’t meet deadlines. Also – I should note that the title of todays prompt was supposed to be ‘Wordless Wednesday’. I dare you to find one Wordless Wednesday post of mine in the last 3 years that don’t have at least a couple hundred words.

In years past the first day of HAWMC typically asks writers to tell their story or why they write. I haven’t looked ahead so maybe that prompt is in the mix. But for any that don’t know, I write about diabetes (mostly) and our families adventures in navigating life with 3 kids with type 1 diabetes. There are funny times, scary times, angry times and frustrating times. Everyone has something and there are many days I am thankful for my kids it is Type 1 diabetes (if it has to be something). There are more challenging things to have. My interpretation of The Scream is less about how I feel regarding participating in the challenge and more of how I feel about participating in the diabetes word. (not to be confused with the diabetes community). There are simply days when the world seems to move around me while I scream.

Oh and to give you more perspective…

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It is less than 2 square inches – seen above with my Starry Night done back in December.

 

 

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.