About Christina

Mom of 3 kids, all 3 have Type 1 diabetes - I blog to share stories. I am not a medical professional and my thoughts are my own. Please do not make changes to your medical care plan based on my stories - always consult your medical team. Hope you find something in my ramblings helpful and or amusing. You can find me on twitter @momof3T1s and on my Facebook page Stick With It Sugar. May all your dreams forever be bolus worthy.

Not Found Dead With A Toilet Brush

Seriously I should have paid much closer attention in chemistry class. Ok, I should have paid some attention in chemistry class.

Is it really common knowledge that ammonia and bleach create a toxic gas that can kill? Surely not every single other adult knows this except me, right? Damnit.

So as a substitute teacher I am not actually working so much yet. Ok, I haven’t accepted a single sub job yet this year. All the items on my summer to-do list I had back in June have moved to the fall to-do list. Honestly I didn’t complete a single item on my to-do list. Now that the kids are back in school I am diligently working on my to-do list which includes lots of big organization jobs, but I still have to fit in the typical cleaning house jobs too.

Yesterday morning I was busy scrubbing bathrooms. I was working on the tiny toilet closet on our main floor. It really is basically a closet with a toilet and sink. I squeezed some Clorox toilet bowl cleaner on the inside of the toilet bowl. I only got half way around the bowl before I ran out. I checked the cabinet under the sink, no Clorox cleaner but there was a bottle of Lysol cleaner. I’m not really a fan of Lysol products, I’m unsure why I had Lysol, my husband probably bought it. I thought, ‘well they are both toilet cleaners, just different brands’ so I coated the other side of the bowl with Lysol cleaner. Lysol is more watery and doesn’t cling to the sides of the bowl as nicely as Clorox does. So I watched as the green Clorox cleaner slowly dripped down the sides leaving a nice coat that would clean the bowl and I watched the blue Lysol basically race down the sides leaving very little behind on the sides. I remember thinking it was a good comparison of how each product worked and clearly Clorox was winning.

Then I remembered I hadn’t fed the dogs so I left the toilet closet and fed the dogs and warmed up my coffee.

I returned to the bathroom to scrub the sink, clean the mirror, and wipe down light switches, baseboards, and door handles. As I wiped things my eyes began to sting. I kept blinking in an attempt to clear the irritant. I thought it was the window cleaner I was using on the mirror that was irritating my eyes or maybe the Clorox wipes, although I use the wipes all the time.

I then used the wipes to wipe down the toilet lid, toilet seat, and toilet rim while observing how the Clorox side of the toilet seemed to gleam more than the Lysol side, confirming my belief that Clorox is a superior product. It was then time to scrub the bowl with the brush.

My eyes were still stinging and I felt woozy. It was weird. Still, I scrubbed away, excited about my new toilet brush that really got up under the rim and also looking at the basket of magazines in the basket on the back of the toilet and thinking, ‘why do I put these here, no one reads them in the bathroom, pretty sure my boys watch YouTube on their phones while they pinch one off, I should really have them use some Clorox wipes on their phones.’

I remember standing up and seeing black spots in my peripheral vision and feeling nauseated. The wooziness morphed into a full on disorienting spin and I tipped sideways. Luckily, because the bathroom is a tiny closet, the wall caught me and I saw the toilet bowl swirling in front of me and the green and blue cleaners swirling in the bowl. That is when I realized I was poisoning myself. I flushed the toilet and stumbled from the bathroom heading for my deck.

I fumbled with the door handle before propelling myself out into the rain.

I collapsed into a chair on my deck with my face to the clouds breathing deeply.

I stayed like that for about 15 minutes, unable to stand without feeling dizzy.

When I came in the air seemed thick with toxic fumes. I opened all the windows and went to flush the toilet again and rinse the toilet brush that I had dropped on the floor.

In the minuscule moment between hitting the wall and flushing the toilet I had a vision of my kids returning from school to find me dead on the floor with a toilet brush in my hand. As if that wasn’t enough I realized the chemical reaction would have continued in the small bathroom for hours putting my kids and pets in danger as well.

In case there are a handful of you that also didn’t pay attention in chemistry or who also don’t read warning labels on household products, please note that ammonia and bleach create chloramine vapor which can be deadly. To be safe never combine household cleaners or simply don’t ever clean.

I’m not glad this happened but I’m thankful it was a story I could share with my kids, not that they every clean anything, but in the future they will have to take care of their own home, maybe they will remember my story and not make the same mistake.

I am really grateful I did not become one of the statistics of most household deaths occur in the bathroom.

No, this post had absolutely nothing to do with diabetes, not everything does.

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.

 

 

Expect The Unexpected

That title is an over used quote and cliché.

I’m sick so hopefully you’ll give me a little leeway because creativity is not on the table this morning.

Seriously the mother of all colds hit me hard Saturday morning and hasn’t let up.

Today is Day 1 of diabetes blog week.

Diabetes blog week is a week-long blogging event with daily prompts to get folks sharing their thoughts on a particular issue or experience. For many diabetes blog week is a set of jumper cables on blogs (bloggers) who have taken a much longer than intended hiatus from blogging. Or maybe that’s just me.

Today’s prompt copied from the Diabetes Blog Week FB page:

It’s Day 1 of Diabetes Blog Week!! Today we’re talking about Diabetes and The Unexpected.
Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

The obvious answer is to always be prepared with extra supplies, extra meter in the car, extra carbs to treat lows, extra infusion sets in case one fails while out or gets ripped off on asshole doorknobs, and extra insulin if a traveling – like I mean 2x what one might expect to use because tile floors at condos near the beach are not forgiving to glass bottles that roll to the floor.

That’s the nuts and bolts of being prepared for the unexpected in regards to supplies, but I think there is a mental preparedness that needs to be addressed.

Diabetes is an asshat and even when one is doing everything “right” (checking blood sugars, bolusing for food, eating healthy, and exercising) blood sugars can spontaneously misbehave because Venus is in retrograde and a butterfly fluttered his damn wings in Uganda. These spontaneous highs and lows in blood sugars and the relentless care needed to stay alive and healthy can take a mental toll on a pwd. (A quick side note in case you are new to my blog. I have a fully functioning pancreas. My brain, not always so. I am a mom of 3 teens with T1D so the thoughts and experiences I share come from a place of observation and discussion regarding my kids and 10 years of living with others who live with diabetes.)

Everything in one’s life could be ideal (aside from having an organ that doesn’t do what its supposed to do) but one may still find that anxiety, frustrations, and depression can sneak in a sucker punch. Those are the days that it is harder to be prepared for.

If you are reading this you are likely already connected to the Diabetes Online community and you recognize the value of a community of people who understand ‘me too’. Even being connected some of us (caregivers of pwd/cwd included) can be too proud or too stoic to admit that we are struggling. There can be a fear of a stigma in admitting we are depressed, overwhelmed, or anxious.

I feel like the copious amounts of cold medication has caused me to wander from the topic. Stay with me.

When my youngest was diagnosed in 2007 I was not using any social media. I was not really connected to anyone else who had children with diabetes. I mostly ran into others who had an aunt or grandparent that lost a leg or died because of diabetes. Those who share stories like that don’t mean to scare us, they are simply trying to empathize but don’t know how. I spent two years without any real support or connections, although once each of those years I attended the Children With Diabetes Friends For Life conference in Orlando. An amazing experience, but still only once a year. Then my daughter was diagnosed and both kids attended diabetes camp. That allowed me to meet some local families and have some support. Still I spent another 3 years alone and afraid to admit that I was struggling physically and mentally while caring for my kids. In 2012 I found the Diabetes Online Community. That was a turning point for me. I found others who truly understood what it is to be a parent of a cwd but even better I found pwd who gave me a glimpse into what it was like to live with diabetes so I could be a better parent to my cwd.

Instead of just giving me kudos and calling me a super mom, people online gave me permission to be frustrated and sad. That was unexpected. It is great to be told what a wonderful mom I was, but it was better to be told I didn’t need to be perfect. It was great to be told how brave and strong my kids were, but it was better to be told that they were going to struggle and that it was ok.

I seriously have a foggy brain with this cold but I hope I’ve shared my thoughts in a somewhat cohesive manner.

  • Have extra supplies because you never know when your friends dog will jump on you and rip your site off.
  • Recognize that even when everything is coming up roses, anxiety and/or depression can take you for a ride, asking for help or simply sharing in the DOC is encouraged because their is no greater power than “me too’.

I’d give my life if it meant my kids didn’t have diabetes. Since that isn’t an option I have to recognize what diabetes has brought into our lives even if it means taking the good with the bad.

  • Friendship
  • Resilience
  • Strength
  • Empathy
  • Compassion
  • Courage

 

 

 

 

Lost & Low at 4000ft

When you have 3 hours of waiting and nothing to do but pace the floor of the ski patrol office the worst case scenarios are what play through your head.

We moved to Washington state in March of 2014. Prior to that we had not lived in an area that was big on downhill skiing. The boys took some lessons early 2015 in Whistler B.C. Then we took them to Kellogg, ID for New Years 2015/16 where they each got another 2 days of skiing. After that they joined the ski club at their school and got another 6 afternoons of skiing experience in 2016. So far in 2017 they each also have had a half-dozen days of skiing. My youngest is very conservative. My older boy, who has always been fearless and confident, is less conservative.

Earlier this week I loaded up the SUV with the boys and my older sons BFF and headed for Idaho. My husband and my daughter were away on a trip out of the country.

The friend my son invited is a very experienced skier and just an all-around wonderful soul.

We arrived at Silver Mt. Resort early evening Presidents Day.

A bit about Silver Mt. resort.

It is nestled in the foothills of Kellogg Mt. and Wardner Mt. Kellogg’s motto according to wikipedia is “This is the town founded by a jackass and inhabited by his descendants.” I actually love the tiny town of Kellogg, and as you will learn reading this post I owe my son’s life and the life of his BFF to a number of folks who call Kellogg home.

To get to the slops of Silver Mountain one has to take a roughly 30 minute ride up the worlds longest gondola, 3.1 miles, traveling from 2,300 elevation to the mountain house lodge at 5,700ft above sea level. From the mountain house lodge snow-sport enthusiasts can ski down as far as chair four at a base of 4,100ft or ride chairs up to Kellogg peak at 6,300ft and/or Wardner Peak at 6,200ft. Silver Mt. Ski Resort has total vertical terrain of 2,200ft and covers 1,600 skiable acres. There are 77 named runs at Silver mt. Ski Resort ranging from beginner to Expert.

Silver Mountain Resort village is not pictured on this trail map. To have the resort village on the map the map would need to be more than twice this size.

So before I begin my story let me just reiterate that the only way up to the skiable areas is by a gondola ride and it is the only safe way off the mountain. It is not like some ski-in/ski-out resorts. The mountain is covered in dense forest, steep ravines, wolves, creeks, and abandoned mines.

My oldest son and his friend Lucy first day of skiing just before they went down Happy Jack.

Tuesday 2/21, first day of skiing. Some fog and lots of falling snow. The two older teens (my son and his BFF who I will call Lucy) had a wonderful day of skiing with no incidents. The powder was perfect and there were only 400 other souls on the mountain which meant zero lift lines. My younger son didn’t feel like skiing, and I had never put on skis, so he and I enjoyed time at the tubing park just outside the mountain lodge followed by board games and hot beverages in the lodge.

My youngest beating my butt at Gobblet game.

My youngest wanted to return to the hotel room at about 2:30 so he went down the gondola alone while I stayed in the lodge enjoying a few more spiked hot ciders waiting on the older teens. At about 3:45 I went down by the gondola loading area to wait on the teens. The lift chairs close between 3:30 and 3:45 to clear the mountain by 4/4:15. There is no night skiing at Silver Mountain. While I was waiting I showed a photo of my son and his friend from earlier that morning to the female loading people into the gondola cabins. She wasn’t sure if she had seen them. As it approached 4pm I sent an iMessage to my youngest (no cell service at all – only iMessage using wifi) that I was still waiting on his brother. A few moments later he messaged back that his brother and Lucy had just arrived at the room. They went down the gondola without me. They basically forgot I was still waiting on them.

Was sending iMessages to my youngest while I waited on the teens and enjoyed another Happy Captain which is apple cider and captain Morgans. Yum

My youngest asks that you ignore is incorrect use of their.

Upon returning to the room I laid into the teens about leaving me on the mountain. They were apologetic and promised not to do it again.

Morning of Wednesday 2/22. As we were all getting our snow gear on and finishing up breakfast I told my older son that we should invest in walkie talkies for future skiing trips to avoid incidents like the afternoon before. He said I was being weird. When loading the gondola to go up to the slopes the young women who I had shown the kids picture to the previous night gave the teens a bit of ribbing and told them not to leave me again. (If this was a book or a movie this would be considered foreshadowing). In the gondola I emphasized how they are to find me before heading down and we would all go down at 3:30 if they didn’t want to go down earlier. I had a my first ski lesson ever scheduled for 1pm. The older teens were taking my younger boy out skiing on intermediate slopes while I rented my gear. My son and Lucy brought my youngest son back to the mountain lodge at roughly noon because he wanted to watch me in my lesson. My older son said he would come back after my lesson to do a green run with me and he wished me luck. Wednesday was extremely foggy. Like maybe 35-50 feet of visibility.

That was about 12:15pm. If you’ve read this far, thank you. I know this part is like the super slow start to a movie you hope will get good.

Me and my boys after I got my rental gear when my oldest brought my youngest back to mountain lodge before he and Lucy went off skiing again. Note the fog.

Since my lesson wouldn’t start for another 45 minutes my youngest son decided to go down an easy run near the lesson area. I watched him ski off and disappear in the dense fog feeling very proud of him. After 10 minutes I started to worry that he was alone and it was foggy. I started to fret that he would miss a turn and end up on a more difficult slope. I paced in the snow by the lesson area until my trainer showed up. I convinced myself that my youngest would be fine and focused on my lesson. (In the movie version this would be additional foreshadowing)

While waiting I took a feet picture. Just FYI I like feet pictures better when they include sand and sunshine.

My lesson went superb. My trainer, lets call him Bob, said I was a natural. After 3 runs on the bunny slope learning how to make a good wedge, turn, and side step Bob suggested we go down a green slope. My youngest returned from his run about 20 minutes into my lesson and had been encouraging me on the bunny slope. At about 1:40 we set off on a green slope and my youngest tagged along. It was still foggy but the fog was lifting a bit when we set off. I fell once. It wasn’t my fault, I blame my youngest. He kept skiing backward like my trainer to watch me but he kept falling. At one point he fell and I was going a bit fast so I had to turn quick to avoid him and my skis dug into a huge section of fresh powder. I went down in an unnatural way but was not injured. My trainer had to remove my skis for me to get upright since my left leg was pinned under me.

By the time we got to chair 1 the fog was gone and the blue of the sky was the brightest and most beautiful I had ever seen. We reached the mountain lodge and bid farewell to Bob at 2:19. My youngest and I went into the lodge for celebratory
hot cocoa while we waited to see if the older teens showed up to ski with me.

Picture of me and my youngest after our run on the green slope with my trainer. Fog had lifted.

By 2:40 my youngest and I went out to do another easy slope but as I was putting on my skis the binding came off one and I had to get it fixed so my youngest went alone. When he got back my binding was fixed but it was 3pm so we decided to call it a day and returned the rental equipment. We gathered our bags and sat down on a bench in the gondola house to wait for the older teens. My youngest was excited to get down the mountain to go to the indoor wa
ter park. I told him that we weren’t leaving without the teens. He was disappointed but I explained that as a mom I couldn’t leave the mountain without them. He assured me they would be fine and that they probably went down already but I stood my ground. At 3:35 I went outside to look for them and my youngest checked the cafe. Outside the fog had rolled back in with a vengeance. Visibility was extremely low and it was already getting dark with heavy cloud cover.

If this was a movie this is when the ominous music would start.

When I was explaining to my youngest son that as a mom I couldn’t leave the mountain until I knew his brother and Lucy were safe, I was just being a mom and keeping with my word that we would go down together. But as I stepped outside in the fog something strong compelled me to act. A feeling I hadn’t felt since I insisted to my husband who believed my son just had a cold, that I take my youngest to the doctor on Feb 7th of 2007, the day he was diagnosed and would have likely died had I not taken him. Call it a mother’s intuition. Call it guidance from God. Call it a sixth sense. What ever you call it – it is what may have saved my oldest son and Lucy. Alexis Carrel wrote, “Intuition comes very close to clairvoyance: it appears to be the extrasensory perception of reality”.  I am not patting myself on my back, I am recognizing that there were larger forces at play that are beyond my understanding.

I flagged down two ski patrollers who had just come off a chair lift. I asked if they had cleared all the runs yet. They confirmed that most runs were cleared and chairs were closing. I mentioned I hadn’t seen my older son and Lucy yet and they were just a few minutes late. The ski patrollers asked me to come to ski patrol to talk about it. I declined and said I’m sure the kids would show up – which was me trying to convince myself that whatever I was feeling, it was wrong. A moment later the head ski patrol guy showed up and I explained to him that the teens hadn’t returned and I was certain they would not have gone down the gondola after the previous days incident. None the less the head ski patrol guy kindly asked my younger son to head down to look for the teens. He also had me show the gondola operator the teens photo so he would stop them if they showed up while I went down to ski patrol.

A number of iMessages I had sent to my oldest son beginning at 2:44pm while my youngest and I were waiting. The arrow was at 3:54pm.

The gondola ride is 30 min. I realized once I was in ski patrol that I hadn’t given my youngest a room key so I sent an iMessage to him that he should go to front desk to get a key. I knew he wouldn’t get the message until he got to the gondola house due to no wifi on the gondola. When we got to the ski patrol office the head ski patrol guy, lets call him Doug, called the resort lobby to inquire if the teens had come in for key and told them my youngest would be coming for a key.

30 minutes past and I didn’t hear from my youngest or the teens. The lobby called up to say that they had a small boy waiting outside the room and could house keeping let him in. House keeping let my youngest son in the room and he confirmed the teens had not been to the room.Meanwhile back on the mountain Doug was asking the ski patrollers to clock back in and started handing out assignments. This is where my brain gets a bit fuzzy because in my head I began to picture worst case scenarios. Doug sent ski patrollers out on various snowmobiles to run the ski boundary and check chair areas. That was at 3:55pm.

More iMessages sent to my missing son still hoping he and his friend would show up at the mountain lodge and get the messages and find me in ski patrol.

By 4:20 the chair lift areas were confirmed clear and there were multiple sleds (snowmobiles) out running the boundary lines.

While patrollers were out running boundary lines I answered Doug’s questions for a report. Birthdays, where did they plan to ski that afternoon (No idea), how experienced are they, have they ever gone out-of-bounds before, what are they wearing, etc. During this time I kept apologizing for the trouble of it all. In between asking me questions Doug’s radio would sound off with one patroller or another updating him on his progress and a new assignment would be given. These guys were extremely efficient and professional and I was nothing short of impressed at the level of calm they all seemed to possess. I remember consciously trying to keep my shit together because a hysterical mom would not have helped the situation. Inside I was a complete basket case, my stomach was turning on me, and my heart felt like it was trying to escape from my chest. It was during this interview that I told Doug that my son had type 1 diabetes. He asked when my son had last eaten and if he had supplies on him. I had no idea when the kids had last eaten since I hadn’t seen them since just after noon. I told Doug that my son had fruit snacks, jelly beans, and a tube of gel frosting on him. Then I made the mistake of looking at my Dexcom share application on my phone. The last time his phone had connected with wifi was when I had seen the teens just after noon. The graph I stared at showed my son with a blood sugar of about 150 going down. No other connection so he hadn’t been back to the mountain lodge since I had seen him.

The scenarios that played through my head at that point included Lucy being injured and my son going for help but going low and thus passing out in the deep snow. The kids going out-of-bounds and falling off a steep slope both being injured with his blood sugar dropping. I think the reason I worried that Lucy had been injured is because if it were my son than Lucy would have come for help.

After the questions I simply paced the ski patrol office, occasionally going outside to vomit or pressing my hands and face against the cold window glass asking in tearful whispers “where are you?”

By 5:00pm my youngest was still not responding to my iMessages. I sent an iMessage to my friend back home and asked her to call the hotel and have them ring the room so she could tell my youngest to turn on wifi. My friend confirmed that his wifi was on but the hotel wifi was down.  Knowing my youngest has diabetes the hotel staff ordered food for him and delivered it to the room. Seriously the lobby staff was really great checking in periodically with my youngest.

5:01

5:13

5:19

5:21

Sometime between 5:00pm and 5:30pm a patroller found two sets of ski tracks heading out-of-bounds. The patroller began following the tracks out-of-bounds. I don’t remember when I had to talk to the sheriff’s department on the phone to provide the same information I provided Doug. But basically once folks go out-of-bounds the search and rescue falls under the sheriff’s jurisdiction. I think I heard Doug telling the sheriff that they had a promising lead and would follow it. I’m not sure if the ski patrol had to get permission from the sheriff’s department to continue the search. Again my brain was all foggy. Either way the sheriff’s department was on stand-by.

At 5:30pm I face-timed the same friend back home because answering questions via iMessage was difficult and I need to talk to someone. I explained the logistics of the mountain, how long they had been gone, and shared how scared I was. It was a comfort to hear a familiar voice and get the reassurances I so desperately needed that the kids would be found. Doug and the couple other men who were in the ski patrol office with me were very kind. They offered me tea, bagels, and coffee, not that I could eat anything, and they updated me on the search efforts. What they didn’t ever say is that the kids would be ok.

After face-timing with my friend back home I face-timed another friend at 5:50. I hesitated slightly before calling him since he was 3 hours ahead and I wasn’t sure if I’d be waking him. When I called he was in bed reading. I explained the situation and basically asked him to call in some favors. See this friend is a priest, and I really needed someone with a direct line. I don’t often ask anyone to pray and to be honest I don’t often pray and when I do it is more of a plea to the universe to provide comfort for those in need, healing for those hurting, strength for those struggling, etc. But at 5:50pm on that Wednesday I needed prayers.

I can’t recall if there was word before I called my priest friend or just after that a set of skis were found. The time seemed to slow to a crawl or almost stop while I paced the floor.

6:04 message to the friend I had been messaging earlier

It was one set of skis found standing upright in the snow with only one set foot prints heading further down the mountain and then back up. Only one set of foot prints and one set of skis? If you were on the mountain you would have likely heard my heart break and my silent scream of terror. Yes it was something, but why one set only? Where is the other child?

That was at 6:04 based on a iMessage I sent my friend back home. Earlier in my face-time call to my friend back home I asked her in a panic when I should contact Lucy’s mom and she suggested I wait a little longer since there was nothing to be done from 300 miles away. I had asked Doug the same question earlier but he had suggested to wait a bit. At this point I wasn’t getting all the updates as they were coming in faster and Doug was busy redirecting search efforts for different patrollers. Another set of skis was found not long after. Deep Breath. Doug took a moment to show me on a computer where the tracks were first spotted and where the skis were found. It was hard to judge the amount of ground covered but it looked like a huge amount of terrain.

Face-time wouldn’t work to call Lucy’s mom so I borrowed a phone from one of the men in the ski patrol office with me. I explained what had been happening and that the patrollers had a good lead and I would update her as soon as I had more information. Lucy’s mom was extremely calm and supportive. Something that was a real God send since I was in panic mode.

Just before 6:19pm ski patrollers heard the kids yelling ‘we are here’. (I should note that I actually have no idea what the kids called out when they heard the patrollers calling for them. They could have yelled ‘help’ but in my head I had the Whos from Horton Hears a Who in my head. It was a safe animated image)

Deep breaths.

I sent an iMessage to Lucy’s mom letting her know that the patrollers could hear the kids responding to the patrollers yelling for them.

I had explained over the phone that the patrollers were following tracks. Lucy’s mom was contacting their cell carrier to ask them to ping Lucy’s phone. The carrier wouldn’t without a warrant from sheriff’s department.

It was another 17 minutes until the patrollers had eyes on the kids since the teens had to hike up to the traverse where the patrollers were with snowmobiles and hot Gatorade. I still had no word on the teens condition but they were able to walk to the snowmobiles.

They were taken by snowmobile to a groomer (huge tracker type machine used to groom ski slopes) and were warming up and making their way back to the mountain house.

The groomer arrived at the mountain house at 7:08pm. The teens were soaked through and cold but otherwise unharmed.

Bad photo because it is a screen shot of a video I tried to take to send to Lucy’s mom so she could see and hear her daughter safe.

The teens gave a statement and explanation to Doug about how they ended up out-of-bounds, what their thought processes were regarding where to hike to, and what their plans were if they hadn’t been found.  He showed them on the computer were they were found and explained the truly dangerous situation they had been in. He impressed on them the seriousness of the situation and how incredibly lucky they were that their ski tracks were found. Doug asked them each for an email with all the details again and asked them to each share what they (the teens) learned from the experience.

The three of us were loaded on the gondola to head down the mountain by 7:30pm. The majority of the ski patrollers had not returned to the mountain house before we were sent down. They were not as lucky as the teens to ride up in a groomer so I couldn’t hug them all like I would have liked to. Between the gondola operators, official ski patrollers, and a mountain of a man who typically works maintenance but also volunteers for ski patrol, there were a dozen souls working to find my son and Lucy and return them safely.

We were in the hotel room a bit after 8pm. The kids took long hot showers and ate large hot meals.

My son’s blood sugar was about 170 before he ate dinner – I forget the exact number. I had not asked him to check his blood sugar when he and Lucy were brought in from the groomer. I hadn’t even asked him to check in the gondola. Honestly diabetes was the last thing on my mind from the moment I knew they were on snowmobiles. My boy and Lucy were safe. They were unharmed. They were on their way to me. Diabetes wasn’t a thought until the boy sat down to eat back in the room.

So what happened?

Due to the extreme fog the teens missed a turn off for a traverse to cut over to chair 4. The run they were on ended on a second traverse just above the boundary line but they didn’t see the signs identifying the boundary lines. They believed they were still on the run. When they realized they had missed the traverse they believed they were still above the boundary line and the second traverse would be just ahead. They had seen a pink flag and thought it was part of the trail. It was in fact part of an old mining route as they were already outside the boundary. By the time they fully realized they were out-of-bounds it was too steep to climb back up. They thought if they heading in the direction they believed chair 4 was, that eventually they would find chair 4. They knew based on the trail map that chair 4 was at 4,100ft and they knew they were at 4,000ft because my son used snapchat to take a picture and scrolled to get the elevation listed on the photo. They had a plan but did not realize just how far away they were from chair 4 or how deep the snow in the dense forrest would be. At times they were hiking in snow that was up to their chests and occasionally pulling each other out of tree wells. Their skis were too heavy and cumbersome to hike and climb with so they decided to ditch them. It was dark by 5:30 but thankfully where they were lost the fog had lifted and stars lit their way. During their time lost they discussed how if they got to chair 4 there would be a blankets and a radio they could use to call for help or could just stay the night in the chair house. They weren’t sure if anyone would be looking for them or if they could be found. They believe they went out of bounds around 2:45pm.

Blue circle is the mountain house were gondola arrives on the mountain. Red circle is about the area they went out of bounds and they roughly followed the red line to the X area where they were found.

In the 4 hours before they were found my sons dexcom continued to show him dropping and he consumed 2 pouches of fruit snacks, the tube of frosting, and most his jelly beans. He was saving his remaining two pouches of fruit snacks in case they had to spend the night in the dense terrain or chair house, one for him and one for Lucy. They checked their phones periodically for service with no luck.

Based on his Dexcom graph it doesn’t look like his blood sugar ever went below 70 while they were lost. He did not take an actual blood sugar with his meter while they were lost but said he felt low often and didn’t trust his Dexcom was keeping up with his numbers.

My son insists that the hot Gatorade was the best thing he’s ever consumed in his life. I’m fairly certain he only feels that way because he was starving and freezing and it was hot.

This sign hangs both at the bottom of the gondola and the top. Let me just say again how very thankful I am for the Silver Mountain Ski patrol. They truly did go above and beyond (or technically below and beyond) to find, collect and return my son and Lucy to me. I will never truly be able to thank them enough.

Ski patrol rarely, if ever, recovers ditched equipment from the mountain.  Their job is to get people safely off the mountain. So in addition to being forever grateful to the men who rescued the teens and the women who stayed late to operate the gondola to get us and the ski patrollers off the mountain, I am also thankful that the patrollers risked their own safety a second time the following morning to recover the skis the kids ditched.

While I won’t be able to ever fully thank them I did send what I could up the mountain on Thursday Morning. Gift cards to the local grocery store, hand written thank you notes from the teens to each person involved in the rescue and an appropriate treat. *upon returning home Lucy’s mom was very generous and reimbursed me for half the cost of the gift cards.

So over a late breakfast at the Morning Star lodge restaurant the teens shared more about their ordeal. During their hike they discussed how if their story ever became a movie the writers would ruin it by adding a bit of romance into the story and would also likely add injuries or other drama. They also said they thought they kept hearing planes overhead but I explained that the sounds they would occasionally hear were likely snowmobiles searching the boundaries. We also discussed all the real dangers the teens could have faced while out there including, wolf packs that roam the mountain after dark and the risk of avalanches. I think I began a number of sentences to them with the words, “you could have died…”

Lessons learned include:

  • Staying in one place once you realize you are lost.
  • Suspending or disconnected the insulin pump to help avoid the low blood sugars.
  • If you feel compelled to hike, leave a trail by maybe ditching equipment in separate areas to help rescue teams know the direction you are headed.
  • Always be sure other members of your party who are not skiing with you know which areas you plan to ski.
  • If you don’t know the mountain and visibility is limited ski conservatively.

 

In the 3.5 hours between when the kids didn’t show up at 3:30 and when they climbed out of the groomer a bit after 7pm I aged at least 10 years. I vomited 3 times. I made a number of promises to the universe and to God. I pleaded with the mountain and the forrest to keep my son and Lucy safe. I cried. I silently screamed (I was carful to not actually scream because I was experiencing extreme fear of avalanches.) I prayed for the safety of the ski patrollers out searching. I apologized repeatadly to Doug and the other men in the ski patrol office for all the trouble. I saw visions of my oldest son from the day he was born through that afternoon in my head on repeat. I whispered the words ‘please be safe’ well over a hundred times.

Luck was with the kids and the patrollers. Finding their ski tracks was a huge break. But luck alone didn’t save the kids. The keen eyes, dedication, experience, courage, and selflessness of the ski patrollers and mountain staff saved the kids, but I don’t believe they worked alone.

Last photo before we left Silver Mountain Resort for home. I love these two crazy teens. Again so thankful for Ski Patrol and Silver Mountain staff.

Have Fun.

Play Hard.

Carry Glucose.

I May Owe Him My Daughter’s Life

As a parent of a child (ok multiple children) with diabetes there are times when I have missed small hour alarms and slept through the night after some major correction bolus at bedtime only to wake in a startled panic holding my breath until I see my child breathing the next morning.

I haven’t ever met a parent of a child with diabetes that hasn’t experienced the above scenario.

Thankfully ‘dead in bed’ is not as common as we train ourselves to believe. Fear is insidious. In the early years after diagnosis we micromanage as much as we can to keep our kids safe. It is normal for us to do so. When my kids were younger I wouldn’t tell them the hours of sleep I missed to keep them safe. I still don’t tell them. Once my youngest overheard me talking about how tired I was after getting up or staying up (I can’t remember which, but I think I wrote about it a few years ago). My poor little man heard me say I was exhausted because of misbehaving diabetes and it broke his wee little heart. Then my heart broke into a bazillion little pieces.

Enter Dexcom. Even the first Dexcom CGMs were the bomb. Dexcom made my kids safer. Granted the early devices didn’t connect with bluetooth on their phones and they couldn’t share their numbers with me but it was a start. Dexcom is all about innovation and improving the lives of people and children with diabetes and by default improving my life as a parent of children with diabetes.

The most recent Dexcom device is the Dexcom G5. No longer do my kids have to carry a special receiver. Their numbers go directly to their iPhones and then the numbers are shared remotely with me on my phone. I can always know their numbers and sometimes my adult friends who use Dexcom G5 share their numbers with me too, especially if they are traveling alone and want a safety net.

So this last July while at Children With Diabetes Friends for Life my teens met other teens and had the best week ever. One of those teens became close with my oldest child and my daughter decided to share her Dexcom G5 numbers with him. That means he always knows her number and receives alerts if she is going dangerously low. At the time I thought it was sweet. I loved that she had a friend she could trust and confide in and count on.

I don’t require my kids to share their numbers with me although they do. That is to say I don’t provide consequences if they don’t share but sharing is highly encouraged.

Some teens might be concerned that sharing constant numbers with their parents would increase the “nagging” or micromanaging. I haven’t found that to be true with my kids but it is a common concern of teens with CGMs. <<<<this is important because maybe your teen won’t wear a Dexcom G5 because they don’t want a parent always watching, but what if they would wear it if say instead of a parent (or in my case in addition to) another friend received the numbers and low blood sugar alerts? That friend doesn’t have to have diabetes. It can be a Bff that doesn’t know the first thing about diabetes but would happily be a safety net for their best friend.

So anyway – my daughter shares her Dexcom numbers with this new FFL friend, who incidentally lives an entire continent away – 3000 miles. This friend would occasionally see low blood sugar alerts and text my daughter to be sure she is doing something about it. That’s cool and helpful. Less nagging from me.

A few weeks ago I went to bed with my phone on silent unknowingly.

The next morning I saw a number of notifications from Dexcom on my phone. A quick glance at my daughters Dexcom graph showed me that around 3am she had dipped below 30.

I didn’t know. I didn’t hear an alert since my phone was silenced.

The Dexcom graph showed that she was in a safe range at the time I woke up. Thank goodness but what about the middle of the night? Did she wake up and treat? Did her body release enough glucagon naturally to keep her safe?

No.

She didn’t wake up to her multiple low alarms. Her body was likely frantically pushing natural glucagon but probably not enough to keep her safe or alive.

It was her friend.

Her friend 3000 miles away heard the alarms at 3am alerting to my daughters severe low blood sugar. The Dexcom didn’t even give a number just “Low Glucose”.

This friend called my daughter no less than a dozen times until she woke up and treated the low.

This friend may have saved my daughter’s life.

Dexcom is the only CGM that allows blood sugars to be shared between devices across continents and around the world.

I may very likely owe my daughter’s life to a teenager and Dexcom.

Am I being dramatic?

Yes.

But is it warranted?

Yes.

I do not work for, get paid by, and I wasn’t asked by Dexcom to share this story.

I am sharing it because I believe in Dexcom, I believe in the power of friendships, and I believe that sometimes as parents we should consider the best ways to keep our kids safe while allowing them the freedom they so desperately desire. If your child is not enthusiastic about using a CGM that would broadcast his/her numbers 24/7 to you consider compromising by inviting them to find a friend to share with. There are also settings on the Dexcom application that your child can set which limits the visibility of numbers to those he/she shares with. For example the application can be set to hide graphs and numbers but send alerts for lows or extreme highs.

Talk to your child about using Dexcom and how it opens doors for increased freedom and peace of mind while also improving diabetes care, including less blood sugar checks.

oh – and after that event I made sure that my daughters friend had contact numbers for me in case he is unable to reach her.

It really does take a village to raise a child. Sometimes that village extends over 3000 miles.

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My daughter (blue hair) with some of her FFL including the young man who caught the low. Incidentally they are wrapped in blankets provided by Dexcom at the family movie night. Literally wrapped in the warm fuzzies Dexcom CGM provides.

 

A community United

For the love of all things –  stop trying to wage war on each other.

Ok that may be a bit dramatic.

It also doesn’t apply to most of my friends.

But seriously no type of diabetes is easier or more difficult than another.

No one asks for any type of diabetes and no one causes their diabetes regardless of type.

I’m not a scientist. I’m not a medical professional. I’m a coffee drinking, Doctor Who watching, lover of all things chocolate, that has no real education in diabetes aside from raising three kids with diabetes and having hundreds of friends with various types of diabetes, but I’ve been around the block. I’ve read a bazillion (slight exaggeration for effect) articles and even watched a TED talk or two and I’ve learned that new thinking suggests that Type 2 diabetes isn’t caused by obesity, can’t be cured, and has never in the history of the universe been caused by the person inflicted with it.

I don’t need a bunch of scientific mumbo jumbo (I actually really love scientific stuff) to recognize that there are countless people who are fit, eat healthy, and exercise that are still diagnosed with Type 2 diabetes – they don’t fit what diet companies and mass media has portrayed as the stereotypically mold of people with Type 2 diabetes. Then there are huge numbers of people who are over weight, some considered obese, who have never developed diabetes. Type 2 diabetes is the ultimate post hoc fallacy. (look it up or watch The West Wing – that’s where I learned what Post Hoc Ergo Proctor Hoc means).

A number of smart people are saying that Type 2 diabetes has a genetic component. That a person who is diagnosed with type 2 diabetes was very likely experiencing insulin resistance for many years prior to a diabetes diagnosis. Insulin resistance itself causes weight gain. There for, obesity or excess weight is not the cause of diabetes, it is a symptom of an underlying condition that may have been present all the time. The added weight over taxes the pancreas which can then lead to a full diagnosis, but losing the weight, while possibly reducing the need for medications including insulin, will not cure the insulin resistance – a person with insulin resistance will always be at risk for weight gain and a re-diagnosis of diabetes – so there really is no reversing diabetes in reality.

I get that parents with young kids and many newly diagnosed people with Type 1 become exasperated by the lack of public knowledge between different types of diabetes. It is human to take the overall general ignorance personally. I know this because for a brief time after my youngest son was diagnosed I was one of them. I think had there been a petition to change the name of Type 1 diabetes to something that couldn’t be confused with Type 2 diabetes I would have signed it. After a few months I realized my anger was displaced. I wasn’t really angry at the ignorance and confusing names, I was just fucking angry at diabetes and I couldn’t take it away from my son. In my fear of being unable to do anything I thought changing the name would be something. It isn’t something and it won’t cure diabetes. Calling out one type of diabetes as ‘not a choice’ while saying the other ‘is a choice’ or can be prevented, divides a community. A community of people who all face the same complications, the same or very similar frustrations over food choices, cost of medications, inexperienced physicians, and the never-ending media clusterfuck that is diabetes education for the masses.

If you want to make a difference in how the general public understands diabetes then speak up and educate but please don’t do it at the expense of another type of diabetes. United as a community we are stronger and we need everyone in the game working toward the same goals, to end diabetes, to improve health care, to push innovation, and to stop stigmatization.

I had scribbled all these unfiltered thoughts here. Then I was reminded of a post a smarter much better looking person wrote about a year and a half ago and I was going to delete all my scribbles. She said I should still share them but I’m sharing her post below because it says more and doesn’t call science ‘mumbo jumbo’. She actually uses real numbers too.

Click HERE to read a A House Divided.

 

 

 

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.

IMG_2936

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.”

 

 

Primum Non Nocere

25943840033_ee6b1ba12a_o.gif” title=When we embark into the realm of social media we leave ourselves vulnerable to the harbingers of doom as well as to other more sinister types of people.

Harbingers are not to be confused with trolls – folks who intentionally set out to cause disruption and chaos.

Harbingers are not charlatans – folks who claim to have special knowledge who pander to people’s fears and hopes with snake oil.

Harbingers are not the catfish – folks who falsely represent a person or group to gain trust but have malicious intent.

The harbingers of doom are the folks who criticize others regarding managing diabetes, chastise others for mental health concerns, are always negative, focus on all that could go wrong, and never what has gone right.

Today is day one of Diabetes Blog Week. A week of focused blogging started seven years ago by Karen of Bitter-Sweet.

Today’s blog week prompt is Message Monday.

Some might think that my favorite diabetes message is the motto I stole from Nike (maybe? I never could find who coined the phrase) “It Never Gets Easier, You Get Better”. Recently I read somewhere –  I can’t recall where, a new version of the phrase, “It Never Gets Easier, You Get Stronger” < that is way better than the version I originally stole.

But today my favorite message regarding diabetes advocacy online and in real life is:

First, Do No Harm.

When we start writing, sharing, posting, commenting, and communicating with others about diabetes it is imperative we understand how our words can affect the lives of others.

My kids use specific insulin pumps. I do not criticize those who choose different pumps, especially right now when #choicematters and #mypumpmychoice.

My kids have A1Cs slightly above recommended guidelines but they are decent (their A1Cs – not my kids – although my kids are pretty awesome too when I don’t want to throttle them) and they work hard to maintain them. I don’t brag about them and I don’t berate others for having a less than stellar A1C. Diabetes is really ducking hard.

I don’t watch my kids blood sugars live via Dexcom or NightScout. They occasionally wear the Dexcom G5 when they will be away for long periods or I will be away. Mostly for my piece of mind. I know there are parents who watch CGM graphs for their child throughout the day and night. Those parents are doing what works for them and their child. I don’t judge them and hopefully they don’t judge me.

My kids eat a ton of crap. I don’t put many restrictions on edibles. If their blood sugars are below 180 and they want a sweet, chips, or other crap food then have at it. Honestly trying to micromanage my kids crap intake was futile. They are teens. They have opportunities to buy crap everyday without my knowledge. I wish they didn’t, but they do and punishing them does not instill in them a desire to eat healthier. I do not critique the diets of other children or adults with diabetes. Not my body, not my business.

For the most part I see good in the community. I see support and empathy and sharing of knowledge. Occasionally I see things that are hurtful or harmful. Sadly much of the hurtful and harmful remarks or posts come from the newly diagnosed or parents of the newly diagnosed. The ones who are still struggling with identifying with diabetes as a whole instead of putting a box around certain types of diabetes and in the process alienating those with a different type than themselves or those they love. I get it. I was there. It was a long time ago. A time before I was part of the diabetes community, before I fell in love with the hearts and souls of people with all types of diabetes in all walks of life. There is a learning curve – not just in managing diabetes but in understanding the community and our place within.

My kids with type 1 diabetes have made me stronger. My friends with all types of diabetes, who use all different tools, different tricks, and are honest about the emotional, psychological, and physical toll diabetes take on the body and soul have made me smarter.

So today my message is First, Do No Harm. 

After that – make noise, raise awareness, be badass, check-bolus-eat, act justly, live honorably, walk humbly, and always love fiercely.

Batteries Not Included

Middle kid is on a field trip today.

He’s s an 8th grader.

He knows everything and can handle everything. I’m not even sure why he still lives here. Sigh.

Anyway – I totally get why he strongly requested that I not volunteer to be a chaperone on his field trip. Most teenage boys don’t want their mum hanging out with them. Although I am hoping my youngest continues to invite me to all of his events because he loves me best. I wonder if his future wife will be upset if he invites me to join them on their honeymoon or in the delivery room for their first child?

Back to the middle kid.

I support his desire for independence and I’m often in awe of him and his ability to roll with things.

Still this morning I did help him prepare by asking him to double check his supplies and devices.

  • Fruit snacks in meter case and pockets to treat lows. Check
  • Ample test strips for meter. Check
  • New Dexcom CGM. Check
  • Money for lunch. Check
  • Adequate insulin in pump. Check

Woohoo – have fun big guy.

Text from boy at 8:09am

His text: “I need a new battery. Meet me at campus.”

Huh?

Me: “How much battery do you have? Will it make it through the day?”

Him: “Pump died.”

Bugger.

Me: “When does bus leave?”

Him: “Now. I’m on the bus.”

I called the school – the bus left moments ago. I’m given the number to the teacher in charge. I should note that I had been on the phone with the school just seconds before his text to tell them my youngest wouldn’t be in today. When I called back the office staff was already aware of the situation since my boy had alerted the school nurse (who was not on the field trip) to the situation. The office or nurse would have called me had I not called them first. Can I just say I adore my kids middle school office staff and much of the teaching staff.

I initially suggested the bus meet me at the truck weigh station which is near my home on the way to the college campus they are visiting. It wasn’t an ideal plan since it would put a gigantic spotlight on my child but meeting the bus at the college campus would be difficult as over 1000 middle school students are visiting the engineering department at the campus today.

The teacher agreed.

I sent a text to my son telling him the plan.

He begged for that not to be the plan. He didn’t want to be the kid that made everyone late.

The teacher called me back. New plan. They would buy my son a battery at campus book store. Excellent.

Teacher called back again. Newer plan. Another parent chaperoning the students would pick up a AA battery and meet the bus. More excellent.

I really thought we covered all the bases. Everything worked out in the end. The boy has a battery, pump is delivering insulin, blood sugars are decent. It may even be a good lesson for him not to ignore the low battery alerts in his pump.

I should also add how terrific the teacher was on the phone with me. I kept apologizing for the difficulties and he kept saying how it wasn’t a problem and he was happy to help keep my boy safe.

We can make dozens of plans. We can check and double check supplies and devices. We can do everything right and things can still go sideways. The trick is to roll with it, laugh about it later, and tell our kids they handled things with pose and dignity and we are proud of them.

*to be fair – a battery is included when you purchase an Animas pump but a friend recently watched the old movie “Batteries Not Included” and it made a good title for this post. Plus look how adorable the little aliens were.

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It’s The Difference Between a Flip Phone and a Smartphone

Hey there.

I’m still here in the bathtub.

Sorry – elementary school teacher in me sneaking out referencing a children’s book of poems.

I can’t remember the last time I wrote, and I’m too lazy to click back on archived posts – Im guessing the last post would be archived since it’s defiantly been a long time.

I could give you a list of reasons why I’ve been absent but it would bore you, so lets just pretend I’ve been in a drunken stuper for how ever long it has been. I haven’t of course. I really don’t drink. In fact, I was recently chatting via text with another Dmom about how I should drink, and I wondered aloud (can you wonder aloud via text?) fuck it anyway, I wondered why I didn’t drink and she was able to remind me, because as a parent of a child with diabetes Dmoms or dads, need to be on 24/7. That made me think of the last time I had more than 2 adult beverages. I knew of course. It was December 2010. I had hosted a BUNCO party at my home in Texas. Thirty of my closest friends or women with no better plans were at my house. I had consumed copious amounts of red wine. I remember checking my youngest sons blood sugar before going to bed, technically before vomiting a few times and then going to bed. I know I set an alarm for 3am to check my youngest again, but I didn’t get up and I didn’t ask my husband to get up either. I don’t remember much of the evening after the party. The next morning when I checked my son his blood sugar was 32. For anyone not in the diabetes know – that is exceptionally low and dangerous. That was the last time I consumed more than 2 adult beverages in one evening and even that is a rare occasion.

I digress – this post isn’t about adult beverages or the dangers of caring for children when under the influence. I honestly don’t get what is fun about being intoxicated. I’m a bit of a control freak so the thought of not being in control kinda makes my skin crawl.

Still more digression – this post is about insulin pumps. Or it will be if I ever shut up about alcohol.

My oldest started using the Tandem T:Slim insulin pump in December 2013. It is a sexy pump. I mean if pumps could be considered sexy.

The other night my daughter inadvertently let her pump (Dorothy – her pumps name is Dorothy) die. The T:Slim is a rechargeable pump (woohoo – planet Earth friendly) but if you don’t charge it, it dies. After it dies and is then charged the insulin cartridge must be changed. I don’t know why. It just does. Just like with the Animas Ping – if you change the battery the pump also requires a full rewind and load of a cartridge, thankfully with Animas it can be the current cartridge, not so with T:Slim. Sorry jumping ahead – I’ll get back to Animas in a few paragraphs or one paragraph – I really don’t know since I haven’t written it/them yet, the point is I’ll get back to Animas.

So Dorothy is dead. It’s late at night and my daughter had just gotten into bed. I was making the rounds to the kids rooms saying goodnight and tossing in some late night criticisms of messing rooms and such when my daughter told me Dorothy had died but she (Daughter, not Dorothy) thought she could try to use the same insulin cartridge. I went back downstairs. She (daughter again, not Dorothy) sent me a text telling me she did need a new insulin cartridge and would I please come get her pump and do it. Ugh. I told her to bring it down. Instead my husband said he’d go get the pump.

This is where the flip phone vs smartphone title will start to make sense. Just hang in there.

So my husband retrieves the T:Slim pump from my daughter. Upon his return to the kitchen he asked (for the 4th time in 2.5 years) why she (daughter) was using the T:Slim instead of the Animas Ping which both boys use.

I went into a quick – ‘her diabetes, her choice’  spiel but he (husband) was not convinced. The tech guy in him wanted to know what was so great about the T:Slim, why complicate our lives by allowing various pumps in the house, blah blah blah.

My spiel about ‘her diabetes, her choice’ wasn’t going to cut it so I had to get technical.

For over 9 years one or more of my kids have used the Animas pump, currently both my boys use Animas Pings. My youngest started on Animas six months after diagnosis. It wasn’t a Ping initially, but we upgraded as soon as the Ping came out because HELLO remote bolusing. The Ping is great, but it hasn’t changed even one little bit since it debuted nearly 9 years ago. Yes, Animas came out with the Animas Vibe, but now with the Dexcom G5 available that uses a smartphone as a receiver, the vibe is really quite obsolete. The Animas Vibe is an insulin pump with a built-in Dexcom CGM receiver so the CGM data can be displayed on the pump screen. The worst part of the Animas Vibe is when they added CGM they deleted Ping technology. That, and the CGM software can’t be upgraded (to my knowledge) when it was integrated which means users of the Vibe are stuck with the same CGM software for 4 years despite advances in technology and software updates. We are used to the Animas Ping and so we forgive Animas the lack of updates. What lack of updates? The LCD screen is basic black and white, save for a few highlighted words, and to get it backlit you have to press an extra button. To get to various menus you have to go through nearly a dozen screens that you don’t need. When it is time to bolus the user must ‘scroll’ up to the proper bolus amount. The IOB (insulin on board – amount of insulin currently coursing through ones body at that moment) is multiple clicks away, as is the history of boluses, alerts, etc. Still none of that matters because PING – remote bolusing is the bomb. The kids can be in full sports gear with their pumps tucked away under layers of under-armor and pads but still dose for the 32oz Gatorade they down on the sidelines, or correct a high blood sugar without touching their pump. At night if I am checking the boys blood sugars during the small hours and they are higher than what is good for them I can bolus them without rummaging around under covers for insulin pumps.

The T:Slim,  the first Tandem pump, not the Flex, which is also integrated with the Dexcom CGM and has the same software issues as the integrated Ping (to my knowledge) is very user-friendly. Large color touchscreen, easy to navigate menus, slimmer profile, displays the IOB on the home screen, and doesn’t require user to ‘scroll’ through numbers before bolusing. Sadly – there is no remote bolus feature and no blood sugar meter linked to the pump.

Getting back to how I explain to my husband why the Tandem is ‘better’ and why my daughter wanted the T:Slim is as simple as The Animas Ping is the equivalent of a flip phone and the Tandem T:Slim is the equivalent of a smartphone.

That my husband understood.

Dear Animas – can you please recognize the importance of updating the Animas Ping pump, and for the love of Pete (I wonder if Pete feels loved?) – can you please update the Ping meter. Seriously – I have been begging you for some time to at least update the meter. The Ping meter is bulky, outdated, and uses twice the amount of blood as the VerioIQ meter (not really sure if that is accurate, but it feels like it).

Dear Tandem – incorporate ping bolusing technology into the T:Slim and the boys will most defiantly switch to the Tandem pump and I will name my first grandchild Tandem. (OK – maybe not a grandchild because I think my kids and their spouses get to name their own kids, but I will name my next pet Tandem)

I don’t know how often I will get back to write. Things are more chaotic in our home than ever before. Lots of ch-ch-ch-changes (in a few hours you will still be humming that – you’re welcome).

Writing as a parent of a children with diabetes is hard. My stories are intrinsically linked to my kids lives which are not only mine to write about.

Two of my three cwd are teens. Anyone in the know – knows that these years are hard. The stories of diabetes in the teen years aren’t always pretty. My kids are clever, kind, funny, and all kinds of wonderful but they are also stubborn, prideful, arrogant, and even – big breath – ‘non-compliant’ at times. At this point with all the non-diabetes chaos happening I’m just trying to keep my head above water and since I’m having a difficult time with life in general I have not been writing or interacting so I can focus on what is most important in our lives.

Feel free to send chocolate.

 

I Get It Wrong Often

Last night my Middles, (13 year old teen boy) was over 400 before going to bed.

He was 238 before dinner and bolused (used his insulin pump to deliver insulin into his body) for dinner with extra insulin to correct the high.

That was 4 hours before he was going to bed.

He was surprised by the high blood sugar before going to bed.

The infusion site he had on was only 36 hours old.

I chose not to drill him regarding what he might have eaten after dinner that could have resulted in the high but I did assume he had eaten something or somethings.

I just told him to correct (bolus insulin for the high) and to go to bed.

I set alarms (two) on my phone to wake up and check his blood sugar around midnight.

I don’t remember hearing the first alarm.

I do remember hearing the second alarm and I remember silencing it.

I awoke with a start at 4:11am realizing my neglectfulness.

In the moments walking between my bedroom and my sons bedroom my heart pounded against my ribs. The fear parents of children with diabetes experience when we know there is the slightest possibility our kids could have experienced a sever low at night can be monstrous. The relief when we see our child sleeping peacefully while their chest slowly rises and falls with each breath is equally as immense.

My boy was sleeping soundly and breathing normally. Exhale.

I checked his blood sugar.

403.

Fuck.

My assumption that he had eaten some rogue food between dinner and bed was incorrect. Instead the high before he went to bed was very likely due to a failed infusion site (place that insulin from his pump is infused into his body). The site needs to be replaced a minimum of every 3 days – his most recent site was only 36 hours old and shouldn’t have failed.

I had to wake the child and ask him to come downstairs to replace the site and insulin in his pump.

He didn’t complain. He felt like crud and he knew that insulin was the only way he would feel better.

Ok he whined a little. It was 4:15am and he didn’t sleep as soundly as I had first imagined.

New site, new insulin in his pump and a large bolus to correct his blood sugar.

We don’t own a ketone meter (a small device similar to a glucometer that checks the amount of ketones are in the blood via a finger stick/drop of blood), ketones are often present during periods of extreme high blood sugars. Ketones are produced when the body burns fat for energy, excessive ketones poison the body and when combined with dehydration can result in ketoacidosis, a life threatening condition.

Before he came into the kitchen to get his new site and insulin I heard him in the bathroom. It was too late to ask him to use the ketostix (paper strips with a small patch on the end that is chemically treated to change color if ketones are present). The ketostix are not a very accurate way to test for ketones – because the paper sticks check the urine for ketones the result is about 4 hours delayed, meaning not the most accurate ketone level, but at least it is an indication of what was happening in this body. Alas – he used up all his urine so no ketone check.

Sent the boy back to bed.

He will need to go to school regardless today. I am scheduled to work.

In the hour since I awoke with a panic I have been berating myself for yet another fail.

We own Dexcom CGMs (continuous glucose monitors). CGMs check a person’s blood sugar every 5 minutes and have alarms that can alert the wearer and others that blood sugars are high or low. Had he been wearing his CGM we likely wouldn’t have ever got to be in the 400s last night and certainly wouldn’t have stayed in the 400s all night as I slept through phone alarms.

Had I done the nagging parent thing at bedtime to determine if he had actually eaten between dinner and bed I might have been able to determine that the high was in fact due to a failed infusion site rather than by a teen that likes to snack and forgets to bolus.

Had I just stayed up between 10pm and midnight I would have not been sleeping at midnight and I would have been able to replace the failed infusion site 5 hours ago vs. letting my son sleep with such dangerous numbers.

Like I said, I get it wrong often.

I’m sorry middles.

Ps. In the 40 minutes since I wrote this and went to take a shower for work I spoke with my husband. He confirmed that he observed Middles eating multiple tangerines before checking his bedtime blood sugar. Thus, it is likely he was high before eating the tangerines but also likely he forgot to bolus for the tangerines. Suggesting that while he bolused for the high before bed he neglected to take insulin to cover the tangerines.

Sigh……

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.