Making Diabetes Sexy

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Making Diabetes Sexy

Pictured is my “Keeping Diabetes Sexy” bag. If you saw it in my purse you would think it was a make-up bag. It’s pink, it’s pretty, it’s girly, it’s sexy. It has character & looks glamorous. But, that is not the sexiest part of this bag, what is? The contents contained within.

Inside is a back up infusion set, tubing, cartridge, Tegaderm, AAA battery, pen tip, lancet, 1/2 unit pen with rapid acting insulin, test strips, Dex 4 gel, SweetTarts (in it’s own sexy container), ketone meter, ketone strips, BG meter & gum. GUM?!? Yep. What’s the one thing that is so not sexy when you have a high sugar??? Bad breathe!!

So why are these items that are products to support my diabetes in a time of high or low blood sugars sexy? Let me convince you they are by telling you what is not…

1. In 1995 I worked full time at a daycare. Driving home from work I realized that I was going low. All I had with me was a really ripe banana. Cayla & Kurtis were in the car with me. I managed to eat the banana & arrived at a convenience store only to discover I had no money on me. At that time there was no debit, no cell phone. I decided I could make the 15 minute drive home to get the juice I so badly needed. I don’t remember driving home. I could’ve killed my children, someone else or left my children without their Mom.

2. Just this past November we attended a Christmas dinner. We stayed overnight. About 2am I woke feeling very, very sick to my stomach. I tossed & turned until I realized I should run to the bathroom. I didn’t make it. From that time until about 8am I continued to vomit violently. My muscles ached, I couldn’t shake it. My BG’s were between 12-15 mmol/L. I determined they were high because of the stress of vomiting. I thought for sure I had food poisoning as the salmon I ate dinner was a bit ‘funny’. I continued to correct & at one point did see my BG drop to 8 mmol/L. Finally at 8am when I was struggling to breath, my chest felt so heavy, every breathe I took burning like acid, I turned to my fiancé & asked him to take me to the hospital, something was really wrong. It was at that moment I picked up my pump to correct a high one more time & realized I could feel the wet insulin coming through the tubing at the connection of the cartridge. It was only then I realized I was in DKA. Thankfully I had an extra site change, tubing & cartridge with me. I changed it up & took a sufficient bolus to avoid hospitalization. I reversed the DKA fairly quickly on my own. I had no ketone meter & no ketone strips to test & avoid this. So not sexy…my fiancé cleaning up after me every time I threw up not knowing what else to do.

What’s else makes our diabetes look unattractive?

1. Having a low & asking someone for something… anything… because we didn’t have our sexy bag.

2. Running out of test strips & ‘guessing’ BG’s only to find out they were out of target & resulted in being sensitive to someone that was unnecessary…or thinking you’re low when you’re high, treating & ending up being really high…because we didn’t have our sexy bag.

3. Being stressed because the infusion set tore out & now acutely making a Plan B to get insulin by injection or an infusion site….because we didn’t have our sexy bag.

4. Having the insulin pump run out of insulin & no access to any for several hours…by the time you get to some you are very high, feel sick & really, really crappy…ugh!! Not sexy!

5. Having the lancet device in your ‘poker’ bend (believe me it’s happened!!) & have no way to check for a full day because there isn’t a sexy bag with a back up…refer back to #2.

6. Having your infusion sweat off to the point of you having to hold in place for hours because the ‘sticky’ stuff is no longer working or accidentally ripping a stainless infusion set out when taking off your shirt to put on a gown for an x-ray. Sexy is having a Tegaderm & infusion site to to stick it down or replace it.

All these events don’t sound so attractive do they?…quite frankly, if you stood back & watched someone have these things happen AND they had pulled out their “Keeping Diabetes Sexy” bag you would’ve thought to yourself…wow, that person has it together, even living with a 24-7-365 disease…that’s attractive!! AND…what is so good looking & sexy about a plain old blue or black case that stores your pens, meter & pump stuff?? Dress them up, make them yours!!

SO….go shopping!! Have fun picking out a bag that says who you are. Fill it up! It’s time for you to own “_____________(insert your name) Keeping Diabetes Sexy” bag….it’s time to make your diabetes sexy!!

The Stealth Fighter of Diabetes

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The Stealth Fighter of Diabetes

I liken a Stealth Fighter to an undetected low blood sugar. Until I started back on my Continuous Glucose Meter a few weeks ago I thought I was overwhelming tired at times because there was too much going on.

Until I experienced a few incidents…one thankfully I detected & treated by finger poke thanks to the prompting of my fiancé & subsequently, the next detected by CGM.

The first happened shortly after I woke up. Our routine involves enjoying coffee & tea while catching up on local & international events & updates. I became extremely tired soon after reading updates on my computer. By the time I was in the kitchen making eggs, my heart was beating fast & I began to have a hard time breathing…not symptoms I usually have with a low blood sugar. In my mind I reviewed the things that may be overwhelming me. I am forever making a list in my head of the days & weeks ahead. I thought maybe I was getting ahead of myself too much, putting myself in a bit of a frenzy. I realized it wasn’t that, BUT I just couldn’t put a finger on the pulse. As we sat down to breakfast & I began to eat the poached eggs the racing heart & difficulty breathing continued. As I ate my poached eggs, I realized I was having a hard time eating. I felt nauseated…almost like a brick was in my stomach. I began to tap my foot in an attempt to focus on what the issue was. Within a few seconds of tapping my foot my fiancé Steve asked me what was wrong. By this time I had tears in my eyes & a lump in my throat. In my mind I was thinking “What the heck is wrong with me!!”. I said to him, “I don’t know.” He summated what could be causing it. Then he asked if I had checked my sugar. I agreed that was a good idea. I was 3.2 mmol/L!! It didn’t feel like a low I would usually have! Once treated, these crazy, weird symptoms disappeared.

Shorty after, I decided it was in my best interest to start wearing a Continuous Glucose Sensor again. I have to be honest, when I have a sensor in I love it. It truly is the ultimate advancement in technology that I never thought could exist given what I have experienced in 38 years living with Type 1 BUT I have a huge block with taking the time to prepare, insert and calibrate. It’s not that much more work than I do with wearing a pump, but I guess it’s just that one more step or three that I just don’t want to do. The motivation to take those extra steps becomes exponential when experiencing a stealth fighting low like described above.

The second undetected one I had was shortly after I had the first sensor in. It was shortly after breakfast (do you see the morning BG’s as being my source of trouble!). Again, I became tired. Not the same tired I get with other lows…I didn’t think so. I went upstairs to have a shower. I checked the CGM graph to see what my BG was at. It was 5.4 mmol/L. Good! I have my cell in the bathroom for those ‘just in case’ moments. I never stop being a Mom even though the kids are in their 20’s. Although none of them were from my kids I hear my phone ring, text tone and email going off. I border on irritation as I promise myself that for the few minutes I’m in the shower the world & my kids will survive without me having access to my cell, thus me having a peaceful moment in the shower. Still feeling not quite right & overtly irritated given how good natured I usually am, I am not able to put a finger on it. My pump begins to go off. It is alarming like crazy. By this point, I realize I’m quite low. I finish as quickly as I can & get to my pump. As seen in the pic above I am 2.4 mmol/L & still going down!! I put in a temp basal of 0%, put some clothes on & head downstairs to get some fast acting sugar. It took an hour to have the residual symptoms subside. Boy was I ever tired!! It scared me.

It occurred to me that I had been having these incidences many times a week for quite sometime. The reason why I didn’t pick up on the lows by finger poke? Each time I tested when I felt tired except for that day at breakfast, the lowest I tested on my meter was 4.1 mmol/L. Even that morning after my shower my meter only tested to 4.0 mmol/L. Which do I trust? Based on how I felt & the technology I decided that these lows were truly stealth-like. Based on the fact that glucose meters can ‘ideally’ have a variability of 20% in tests, I decided it was time to take action.

It has taken a lot of work in the past 3 weeks to nail it all down, but changes have been made & I notice a huge difference. Be ware of the Stealth Fighter of Diabetes…it is alive, well & undetectable.

 

To Pump or Not To Pump

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To Pump or Not To Pump

I have some great questions about Insulin Pumps today.

At this point, I will now take a moment and apologize because I have pumped for 12 years & have the benefits of being covered for insulin pump therapy throughout this time, I assume everyone knows what I know about them. I also assume, if they have the ability to, they would automatically want to be on one. That is very ignorant of me and I’m sorry. I started Diabetes Beyond Borders for this very reason, to educate and give as much information to empower you. Unfortunately I missed the mark on this one.

One more small disclaimer. I worked as a Territory Manager for Medtronic Inc. selling Paradigm Insulin Pumps. This Blog will not sell one pump over another. At this point I am now doing Insulin Pump starts & follow-up for Medtronic and Accu-Chek. As a Health Care Professional, peep living with Type 1 & Mom of a Type 1, my aim now is to give you an unbiased summary about Insulin Pump Therapy so that you can research more to see if pumping is right for you & which one best suits your lifestyle & needs if you decide to.

So…here we go….

SIZE: In general, all pumps are bigger then a pager but smaller than a cell phone. Many people have mistaken mine for a pager or cell. In the picture in my hand is one of the smaller ones. I don’t need a lot of insulin, so I use a smaller pump.

COLOURS: You want colour it, you got it. There is charcoal, clear (like mine), pink, green, purple… You can buy covers & skins to decorate it anyway you see fit. I like the clear one because I wear mine in my bra a lot…I don’t want it to be seen through my shirt. A lot of guys like charcoal because it looks more like a pager.

PARTS OF THE PUMP 101:

1. BUTTONS: Used to navigate the pump.  About 5 buttons on the face/front of it, some pumps have ~1 or 2 on the side as well.

2. REMOTE:  Some pumps have remotes that work also as the glucose meter. Not all have this.

3. CARTRIDGE: Fits in the pump which has Rapid Acting insulin such as NovoRapid, NovoLog, Humalog, Apidra (when on a pump you no longer take Long Acting insulin such as NPH, Levemir or Lantus). The cartridge is plastic.

4. TUBING:  It is attached to the cartridge of insulin which comes in various lengths, as short as 18″ to as long as 43″ & a few lengths in between. The tubing is flexible & durable. There is a new ‘patch’ pump on the market that does not have tubing.

5. INFUSION SET: This is the teflon tube or needle that sits under your skin to deliver the Rapid Acting insulin. The tubing connects to the infusion set. It can be connected & disconnected as needed for showering, activity,or intimate moments. There are a variety of infusion sets to choose so that you have the right one for your lifestyle.

BASIC FUNCTIONS OF THE PUMP:

1. BASAL RATE: I call this the ‘base’ or ‘fasting’ delivery of insulin that your pancreas would be doing for you if you didn’t have diabetes. The Long Acting insulin you are taking tries to do this through 1 or 2 injections per day. On the pump, you can customize your basal rate to meet the different needs your body has throughout the day. You can make these changes on an hourly basis if needed. Most people only need 3 − 5 different basal rates during a 24 hour period. They do not change often after they have been established. BUT, the beauty is, you can change them and the time of day you need to. Basal rates are delivered in very small increments throughout the day, each pump delivers the rate based on its own calculation in which that company feels is best for their product but at the end of the day, the delivery is balanced & tiny enough it provides better balance when you are not eating. It is easier to skip a meal or get off schedule without suffering the consequences of a low blood sugar because of the features of a basal rate.

2. BOLUS: Essentially it is the Rapid Acting insulin you inject with. The beauty? The tube is already under your skin so you don’t have to inject. The other benefit is the pump does all the work to calculate your insulin dose. The increments that can be delivered on a pump can be as small as 0.025 units and as big as 35 units. I imagine now your routine on injections involves adding up your carbs, trying to decide how much extra to adjust for a high or low BG, taking a calculator or phone & crunching the numbers to find how much you will inject with your pen or syringe, which usually has to be rounded up or down to the nearest half or full unit of insulin. The built-in bolus calculator allows you to input your BG (usually remotely through the glucose meter), input your carbohydrates. The pump then shows you the breakdown of why it has decided you need a certain amount of insulin. It considers a correction for your sugar to bring it to target, whether that means adding extra to treat a high or subtracting some off to avoid a low. It also shows the carbs you chose & how much insulin you will get based on that. It also takes into consideration how much insulin you still have in your body. Having bad lows from unaccounted insulin still floating around in your body will be no more. The pump remembers.

3. BG READINGS: The pump stores your readings if you enter them into it, whether manually or through your remote meter.

4. CARBS: The pump keeps a history of the carbs you have eaten, when & how much insulin.

5. INCREMENTS: The increments on the basal rate & bolus can be as small or as large as needed. Some pumps vary, so make sure the one you choose fits your needs. Type 1 & Type 2 peeps do very well on pumps for this reason.

6. DELIVERY: The rate a pump delivers insulin varies from pump to pump. Be aware how comfortable you are with the rate it infuses into you.

7. SENSOR: There are only 2 companies that I am aware that offer Continuous Glucose Sensor technology; Medtronic & DexCom. I will post another Blog about this technology. It is far too complex to include it in this one. Suffice to say, having used the technology personally, I see the impact it has on diabetes management & glycemic control.

RESPONSIBILITIES AS A PUMPER:

1. BG TESTING: At least 4 times per day and more often as necessary.

2. INFUSION SET/CARTRIDGE CHANGE: Infusion sets need to be changed every 2 − 3 days, depending on the set you choose. Some companies are saying to change the cartridge & tubing every 3 days, others support 6 is the way to go.

3. DIABETES KETO-ACIDOSIS PROTOCOL: With only having Rapid Acting insulin in your body, it is only in a matter of hours that you will ‘run out’ of insulin in your body if something doesn’t work with your pump. It is easy to trouble shoot & correction can be quick. The trick is to be acutely aware when you test high & adhere strictly to protocol to treat the high sugar. It is rare it can happen but when it does it is SO important to follow the few simple steps it takes to correct it.

WHERE TO WEAR THE PUMP

There is an assortment of clips, pouches & belts that are available from pump companies & online stores. This allows you to decide whether you want it under your pants on your calf, under your skirt around your thigh, clipped on your belt or around your waist, in your bra, around your arm. Creativity, convenience & comfort are key. I know many with  careers from police officers, construction workers, nurses, teachers etc that find living with their insulin pump provides better quality of life for them. It is trial and error of where to place it at first, but once you get your groove, it’s a no-brainer. You’ll forget it’s there.

PROS OF A PUMP:

1. Less low sugars
2. Less variability
3. More flexibility with lifestyle & scheduling
4. Less needles
5. Ability to pro actively prevent low & high sugars with activities, exercise, work etc.
6. Less calculating

CONS OF A PUMP:

1. Have something attached to you 24-7
2. Remembering to change the infusion site, tubing & cartridge on time. (I developed a system to help me remember, some pumps have a reminder in it)

WHAT TO CONSIDER WHEN BUYING A PUMP

1. Ease of Use
2. Technology available that suits your needs
3. Software available to download the results to manage your diabetes
4. Cartridge size (they come in 1.8 mL, 3.0 mL, 3.15 mL)
5. Insurance Coverage
6. Long term costs
7. Pump Company Customer Support
8. Ease of ordering supplies
9. Features within the pump that meet your needs
10. Basal & Bolus delivery increments that meet your insulin needs
11. Infusion set choice (one pump company’s sets are proprietary so you will need to order their supplies only, make sure they have what you want)
12. Some companies require you replace your battery cap & cartridge cap every 3 months. It will be at a cost to you. Make sure to ask about this.
13. Some pumps are waterproof & some are water tight. I have always put it this way…I wouldn’t swim with my cell so why would I swim with my $7,000 pump. Especially in a lake…if it goes to the bottom of the lake there is no getting it back.

I liken deciding to pump & choosing one to buying a car. It’s a long-term, expensive decision you will live with for 4 − 5 years. Shop wisely & make sure to ask a lot of questions. If you have the option to trial one using saline in the cartridge before buying, I urge you to do it.

Always keep in mind:

1. All companies give a 4 year warranty.
2. You have 90 days after you order your pump to return it. If you decide it’s not the right one & you want a different one OR if pumping just isn’t for you. There is no cost to you to return it.
3. Please, please make sure to add your pump to your house insurance policy. If your pump is stolen (which I know people it has happened to!), you want the reassurance you can get it replaced.

You can email me at tracy@diabetesbeyondborders.com with any questions. I am here for you.

Healing

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Healing

I like to keep my body parts. I figure each one is there for a reason. But, when all other options have been exercised & surgery is the only option….well, reluctantly, I know when it’s time to fold ’em.

I am not new to surgery. I have had 4 surgeries between the ages of 21 – 32. I’m proud to say, I’ve had success with all surgeries & recoveries. It’s a challenge to walk away healthy without infection or complications, especially when living with diabetes.

It’s been 10 years since my last surgery. It’s been almost 20 years since my last major surgery.

When I found out a few months ago I would be under the knife once again, having major surgery with a 6 week recovery time, I decided to be proactive in preparing so my recovery would be uneventful.

I am only 4 days post op so I may be putting the cart before the horse with this surgery but I want to post some considerations about how to prepare before, during & after.

Before Surgery:

1. Gather a reliable support team that can be there for you before, during & after surgery. Make sure your team knows their responsibilities throughout this process. If someone offers to help, this is one time you can’t afford to say no. Don’t try to be a hero. I never heard anyone talking about the time “so and so had surgery & what a champ he or she was going solo, doing it all on their own.”

2. Don’t go crazy cooking, baking & cleaning. What?!? you say? Shouldn’t I have stuff in the freezer & the house spotless for when I come home to recover? Sure, if you were healthy before surgery to do that, it would be ideal. But consider, why are you having surgery? Your body is not running at full capacity. By stressing yourself out making, baking & cleaning you are depleting your immune system to a point that you may set yourself up for illness before surgery (then, it may be cancelled) or cause infection post-surgery. Although it may be tough, go to the local health food store & buy organic, pre-made meals that one of your team mates can heat up. Same with the kids lunches. I’m not meaning pre-packaged boxed/canned garbage…there are a variety of ‘homemade’ soups, sauces & meals available today that have only a few ingredients & are good for you. Just make sure to watch the sodium content…you don’t want to get all puffy & bloated.

3. Which leads me to my next point….eat clean, well-balanced nutritional meals & snacks leading up to surgery. I mean, we all should all the time but if you have lost focus, now is the time to get back on track. If you don’t have a Juicer, I urge you to buy one. Use it often. Eat a variety of fresh, organic vegetables & fruits. Keep your protein lean. Keep your carbs complex & low GI. If you nourish your body properly, it will be ready to perform at a high level of healing during & after surgery.

4. Test blood sugars more often. Keep them within target. Consult with your Diabetes Team to make sure you are running at optimal capacity for diabetes management. High sugars can cause infection and/or slow healing.

5. Be honest during your Pre-Op visit at the hospital about which meds you are taking. I mean, prescription, herbal & homeopathic remedies as well as essential fatty acids. I take herbal & homeopathic tinctures as well as EFA which I had to stop 2 weeks before surgery as they increased my risk for bleeding.

6. If you are physically active until this point, if the Specialist agrees it is okay, keep doing what you do or alter it to accommodate to your circumstance. I was not able to be as active as I used to be but I made sure to walk 5 – 10 km each day to keep my heart, lungs, mind & muscles working.

7. Get a minimum of 8 hours of sleep a night.

8. Drink a lot of water. More than 8-8oz glasses a day.

The Night Before Surgery:

1.  Pack a cooler bag of simple, instant food that is healthy & wholesome for your hospital visit. Below is what I packed in mine:

– Nature’s Path Organic Instant Oatmeal Plus Flax
– (2) glass jars of Green’s Juice I made with my Juicer
– (2) 1/4 cup containers of hemp seed to add to my oatmeal
– (2) containers of 2 tbsp of Skinny B Breakfast Cereal
– (2) containers of 2 tbsp of Holy Crap Breakfast Cereal
– (2) single servings of plain Greek Yogurt

The Day of Surgery:

1. Ask your surgery to be booked first thing in the morning. You will be asked to have nothing to eat or drink the night before. Some of your diabetes meds may be held. But, with the risk of fasting comes the risk of a low sugar. Being booked in the morning gives you the opportunity to have an IV put in place so that if you have a low blood sugar the staff can give you sugar through it.

2. Remember to breathe deeply, often. Stay calm. Getting anxious over the unknown & probably what won’t happen will raise your blood pressure, heart rate & blood sugar. All the hormones released that cause this will not help with the healing.

3. When you feel yourself getting anxious, visualize what you would love to do 6 weeks from now. Imagine yourself having a successful operation & healing process. Envision how much better you will feel afterwards.

3. Ask questions. Although they may seem dumb to you, they really aren’t.

4. Educate the team in the hospital about your diabetes. They don’t know as much as you do. They can’t! They don’t live with it.

5. Be your own advocate. If something doesn’t seem right, speak up.

The Hospital Stay:

1. Be aware of what’s on your food tray. For the 2 days I stayed, I was presented every processed juice & flavour of jello imaginable. Was that going to help my healing? Nope. It would just spike my sugars. I resorted to my cooler of food I brought. My Greens Juices got me through the first 24 hours. The oatmeal, hemp, yogurt & Skinny B got me through the rest of my stay. The nurses admired that I advocated for myself by bringing the cooler of food.

2. Take the pain meds. Again, don’t be a hero. No pain, no gain does not work. Pain releases hormones that will cause your sugars to go up….and your blood pressure and your heart rate…get it? 🙂 You will not get addicted.

3. Sleep and move. Sleep as much as you can. As soon as the nurse says it’s time to get out of bed, whether you just stand up or take a few steps, it is important to move. It gets the blood flowing which helps your surgical incision heal.

4. Test, test, test. The hospital staff will do that for you a lot too, but I bring my own meter as back up as well. It may not be calibrated to the hospital lab but at least I can report to them if it’s not time for them to test & I know something is off with my sugar. I also wear a Continuous Glucose Meter paired with my pump.

5. Be aware that the grogginess from pain meds can mask a low blood sugar.

6. Be aware of your body. Listen to it. Trust your gut. You know you best!

7. Drink lots of water! LOTS!!

Recovering At Home:

1. Abide by what the instruction sheet & the nursing staff have said. Don’t push yourself. You will not push yourself closer to recovery but closer to a risk of infection & slow it down.

2. Sleep a minimum of 8 hours a night, if your body says to go to bed at 8pm, do it.

3. Nap when you’re tired.

4. Be as mobile as your Doctor has permitted you to be.

5. Inspect your incision(s) daily. If they start to look red, inflamed or have discharge, you need to call your Doctor right away.

6. Test, test, test. Keep your sugars within target. I’ll repeat this again….high sugars will slow the healing process & promote infection.

7. Eat clean, eat well. Keep up with the Greens Juice. Eat lots of vegetables & fruits. Eat lean protein. Keep to low GI, complex carbs.

8. Call on your Team. Refer to #1 “Before Surgery”.

9. Drink lots of water. LOTS!!

These are general guidelines. Your circumstances may be unique & there may be some suggestions I have made that the Doctor has advised against or differently. Please listen to your Doctor. He & you, know your circumstance best.

Why?!?

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Why?!?

Did you ever go to bed with a normal or near normal sugar but wake up the next morning high? You increase your insulin or talk to the doctor about it & he raises your oral diabetes medication & it continues to go high. Why?!? What is going on? Among the many frustrations to experience, what appears a simple fix becomes a complex mystery.

Kurtis is in Grade 7. It is about late September. During that time, as most kids are, he is very active, back to school & still not ready to harness the energy he had from summer holidays. He plays football with his friends at every recess. He plays hockey in his local league. At that time he is in power skating to ante up his hockey skills for the upcoming season, with the primary reason to keep him active. When he isn’t at hockey after school he is outside jumping on the trampoline or catching frogs. Aside from sitting in a classroom his days are full of activity.

During that time Kurtis is on insulin pump therapy. It is very easy to manage him on this. Predicting trends in blood sugars is easier than injections. Between decreasing basal rates & temporary basal rates, I feel I am in control of his active lifestyle.

Within that time, there is a period of weeks where Kurtis is going to bed within the safe target for his age but waking up high. I automatically assume he is growing & needs more insulin. What does any parent do? Increase the overnight dose.

With Kurtis being on an insulin pump, I don’t feel the need to set my alarm every night to check him. If there are days where he is having multiple lows, I set my alarm to make sure he doesn’t have more through the night. Otherwise, I feel confident sending him to bed at a target blood sugar, he will wake up within a reasonable target in the morning.

One morning this is not the case.

At that time I worked for Novo Nordisk. I put in an average of 50-60 hours a week. I did a lot of driving. Working as a full-time Mom in a sales career, living & managing my own Type 1 diabetes & raising a son with Type 1 diabetes & keeping a balance for my daughter was very challenging.

This particular morning my alarm goes off. I am exhausted. As I hit the alarm, I say to myself, the kids need to do a few things before I get up with them anyway, it’ll be okay. The alarm goes off one last time. My feet hit the floor. As I stumble out of my bedroom into the Great Room where Cayla sits at the Breakfast Bar eating her breakfast.  I hear Kurtis’ alarm going off. I ask Cayla if Kurtis is up. I think to myself, “I don’t hear the shower?”. She responds, “It’s been going off for a while now, he won’t shut it off, he won’t get up.”

My heart starts to pound. My concern is overwhelming. At this point, Kurtis is not at the stage to sleep deep enough through an alarm.

Kurtis’ bedroom is at the end of the hall. His bunk bed is against the wall directly in front me. As I rush in the room, I see his back facing me. The alarm is still going off. I know something is not right.

I go over to him. He is a funny colour. My heart is pounding. I shake him gently & say “Buddy” (his nickname). His arm flops over & I see his face. His eyes are rolled back in his head & there is a lot of saliva coming from his mouth. There is not a moan or a groan. He is lifeless. There is a pool of vomit in his bed. My body floods with a warm rush, a pulse so strong I want to scream. I think my baby is dead. It seems so cold, but I check his pulse. It is barely palpable & fast. He is cold. I scream. I scream so loud. I yell at Cayla to get her father. I don’t have to explain. She can tell by my voice & what she is witnessing. I keep him on his side. His father rushes in and picks him up. He holds him on his lap while I run to grab the Glucagon. My hands are shaking so bad I can barely get the needle into the vial to inject the saline. What seems like forever, I pull the syringe out of the vial & plunge it into Kurtis’ leg. He’s not moving, he’s not talking, his eyes aren’t open. I pray, please God, please, I can’t lose my baby. I am trying to keep up my composure for Cayla. She is apologizing to me. She feels bad she didn’t check on him. I say “It’s okay honey, it’s okay.” as I try not to cry. Who do I call first…Kurtis’ Diabetes Educator’s home, not 911, but her home. Why? I don’t know to this day. At that point I have lost all sense. When she answers I cry to her “Shay, he won’t wake up, how long does it take?” My hands are shaking so bad I can barely keep the phone by my ear to talk or listen. She asks me, “Have you called 911?”. I feel so stupid. Me, a nurse, who has worked in critical care. I hang up & call 911. We live in the country. It takes 30 minutes for them to arrive. About this time, Kurtis is beginning to make sounds. He is trying to get on his feet but doesn’t have the strength. The lights are on but nobody’s home. Shortly after, Kurtis is hospitalized. It takes almost a day before he becomes aware of his surroundings & his Mom. I knew my Kurtis was back when he opened his eyes after who knows how many times confused & unaware & says “I’m hungry”. I knew by baby was OK!

There is not a day that goes by that I don’t thank God that He left him here with me. Days, weeks, months & years later, I tell Kurtis that God kept him here for a reason. He has a purpose. As we all do living with diabetes (& those who don’t!). Weeks & months after I would be driving to a city in my territory to call on customers & I would visualize Kurtis lying in his bed, looking dead. I burst into sobs.

My discovery with what happened to Kurtis is that he wasn’t high all night. He was experiencing the Somogyi Effect. He was going low in the night due to all of his activity but his liver was overcompensating giving him such a surge of sugar to compensate he woke up high in the morning. That day, his liver had no more sugar stores left to save him from what happened.

I share this very emotional story with you for a few reasons.

1. Don’t assume. Nothing, not even an insulin pump is predictable with diabetes. When I worked in the Intensive Care Unit, I was taught to look at the patient not the the machine. (Although, don’t override the pump all the time that is telling you changes on the pump need to be made)

2. Set your alarm for 3 am & test your child/teens sugars for 3 nights.  It’s like fishing…you’re trying to ‘catch’ a low.

3.   If the sugar is high in the morning don’t assume it’s because he/she is high all night. If your child is on injections or a pump that does not give the technology to offer Continuous Glucose Monitoring to decide what’s happening, there is technology available that allows your child to go live with their sugars for 6 days that your diabetes clinic may offer which will help you & your diabetes team to find out what’s going on over night 24 hours a day for 6 days.

4. When kids are as active as I described with Kurtis, compensate for that. Whether your diabetes team has advised extra carbs & protein at bed or decreasing overnight insulin.

5. Journals rock!! As busy parents working long hours & being all that for our kids, we lose track. But, we don’t realize it. We think we are status quo, but eventually something has to give. A journal will tell you what’s really going on. It’s the story you think you know but  because I’ve been there, you really don’t.

I share my experiences because I learn from them & they are in the past. I write these blogs because if I can save one child & one parent from going through what I did, I have done what I have set out to do.

As Exciting As the Discovery of Insulin!

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As Exciting As the Discovery of Insulin!

In 1983 and for the next 10 years, researchers began to study whether intensifying diabetes management among people living with Type 1 made a difference. Up to this point there had not been long term research to provide data to prove this to institute change.

When I was diagnosed in 1975, I started on one injection of NPH and Toronto in the morning.  A Keto-Diastix before & after school & at bedtime was dipped in a urine sample to determine sugar & ketones. Little did we know that it was not an accurate test of glucose control. Every 3 months my blood work was done & thankfully my A1C as well. We would see the Paediatrician shortly after.

In 1981, an extra injection of NPH & Toronto was added at supper time. Around that same time I received my first glucose meter.

This study has changed the way people with Type 1 diabetes are managed. It was & still is exciting!

Here is what the Diabetes & Complications Control Trial is about.

There were 1,441 people from Canada & the U.S from 29 centres living with Type 1 diabetes more than 1 year but less than 15 years. They could not take part if they had too many or severe low blood sugars, severe complications or limited life expectancy. The ages studied ranged between 13 and 39. Young children were not studied. There were 2 groups; 1 had their diabetes managed intensively, the others managed as before.

The main goal was to keep blood sugars as normal as possible through a criteria of intense methods for diabetes management.

Clinical findings & significance:

1. The risk of eye complications were reduced 76%.
2. The risk of complications of the kidney were reduced by 50%.
3. The risk of nerve complications were reduced by 60%.
4. By keeping blood sugar’s as normal as possible, the onset & progression of eye, kidney & nerve damage caused by diabetes slowed.
5. Even those who had a history of poor control who sustained any type of BG lowering showed a difference in the progression of complications.
6. For those who already had eye complications by participating in intensive management of their diabetes, they saw the progression of the complication slow by 54%.

What is Intensive Management?

1. Testing BG 4 or more times a day.
2. Injecting insulin at least 3 times per day or using an insulin pump.
3. Following a diet & exercise plan.
4. Monthly visits to a health care team which consists of a physician, nurse, dietician & behavioural therapist.

Risks involved with participating in an intensive management therapy? Low blood sugars. It was clear that less stringent goals are appropriate for some patients.

This trial has become the pioneer of studies that changed the management of Type 1 diabetes . Since completion of the study in 1993 there has been further work done to answer more questions & give more data. I will continue to post on these.

How to Prove You’re Cool with Diabetes

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How to Prove You're Cool with Diabetes

“Did you make any friends?”

After the first day of Kindergarten or starting a new school there are many questions to ask. The answers are usually pretty straight forward. Kids usually come home from school telling of events that occurred with their friends. Some days it is the story of “So and so is not my friend anymore, they did this to me…” or “Look at the picture so and so made for me.” or “So and so gave me their cookies and I traded them my chocolate milk.”

Children are compassionate and caring. They are resilient. Children are honest but also cruel.

As a Mom, I was witness to a mob mentality with a group of Grade 4 boys.

As I mentioned in my blog yesterday, after speaking with the children in Kurtis’ class, it seemed some of the kids would play with him. He now had a small group of friends. Once they knew they couldn’t get diabetes by touching him, they were okay with playing with him.

In October of his Grade 4 year I started Kurtis on an insulin pump. Thankfully his teacher was incredible. She was a classmate of mine from primary and high school. She was very proactive in Kurtis’ care and the learning curve associated with learning how to pump. At that time I worked part-time in the hospital as a nurse in the Intensive Care Unit. The teacher knew she could call me at work or home for questions or concerns. The calls initially were frequent.

Upon starting Kurtis on his pump, I opted to start him on an angled teflon infusion set. I tried a straight-in set but they kept bending causing sudden, extreme highs. I felt the angled set would give us more consistent results. The introducer needle was large enough, depending on where it was inserted, it could be quite uncomfortable. I put EMLA cream on his site one hour before inserting so he wasn’t feeling the discomfort. It worked beautifully.

One afternoon I received a call from his teacher. She sounded excited. She wanted to tell me that Kurtis’ infusion set had ripped out during recess. She was so proud of him. There was no EMLA cream in his kit. Kurtis decided he would insert the Silhouette without it. Mrs. Sperry was awesome. Instead of sending him down to the office or nursing station to change it, she would over see the change. The class was curious to watch.

At this point, the ‘cool’ boys were not as interested in playing with him. This bothered Kurtis. He wanted to play the sport games they played at recess. He didn’t want to just walk around the yard, he wanted to be active. I told him although I understood his need. I also encouraged him to start his own games in the yard, but he wanted to play with the athletic, cool boys.

During the phone call I was told that the kids were so impressed with what Kurtis had done. They talked about it all afternoon. Kurtis had put a really big needle in his stomach. He was SO brave.

Not one Certificate of Achievement could ever make Kurtis feel as proud and accomplished as that day. Days and weeks later, the Grade 4 ‘cool’ boys began to invite him to play at recess. The icing on the cake for Kurtis.

As a parent I had mixed feelings. To me it was a form of intimidation. A child having to go through a form of initiation to be friends with children so he could gain the acceptance and confidence he needed to feel good at school. I understand this happens with all children to some degree, with or without diabetes. I have seen it in a milder form with my daughter.

I had to accept that this was part of learning and life with diabetes. Since those days of Grade 3 and 4, I have hoped and prayed that Kurtis would learn that he should never have to prove himself to anyone because he lives with diabetes. It’s hard to convey that to a child, especially when they feel isolated from their peers because of it. As with many things our children experience, we can teach and guide them, but sometimes they just have to touch the stove to understand it’s hot.

Tomorrow my blog will be on the situations and concerns about Kurtis’ safety with his diabetes at school.