Being “Normal”

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What does every parent want when their child lives with Type 1 diabetes & it’s any special event whether it be Christmas, Hallowe’en, Birthday Parties or Easter? To portray it’s the one of the few times of their life they can enjoy what everyone else does. Well, sort of. But that’s the best we can offer, right? Do they remember or know any different? Kurtis never told me so. I don’t remember so.

From the ages of 8-11 I don’t remember what I did with Kurtis at Hallowe’en. That was the time when he took multiple daily injections. Life was a whirl wind. I worked shift work at the hospital. My whole life evolved around my children…I worked my job, my health, my diabetes…everything around the kids. I was a single parent a lot. I didn’t have a team mate I could pass the baton to & ask to take over. My focus consisted of; were the kids fed well, did they have lunches packed for school, were they doing well in school, were Kurtis’ blood sugars okay, what did I need to do make them ok, appointments for his diabetes, making sure Cayla didn’t feel like Kurtis was the centre of our family because of his diabetes, what did the kids have for homework, hockey, figure skating, testing Kurtis’ blood sugars day & night to keep him safe, setting my alarm to check him, arranging care for the kids for the few times I wasn’t there, making sure the people caring for him understood what to do with his diabetes…you get the whirl wind?

Do I remember what I did for Hallwe’en on injections? Vaguely. I know for a fact I would have kept his candy intake balanced so that his sugars weren’t crazy for days. I vaguely remember letting him pig out the night of after he returned from collecting his stash..to an extent. Then going forward matching meals with treats to keep it balanced.

Once Kurtis was on a pump, I was not so concerned. My mindset was eat it all sooner then later so that we have 1 week of craziness then 3-4 weeks of drawing it out & really messing things up. The bonus was he could put the carbs in his pump & burn it off with activity. I was lucky because Kurtis only liked certain candies. The rest he would never touch.

Christmas stockings & Easter hunts involved a lot of non-candy things from Wal-Mart & the dollar store. I kept it the same for both. The kids never said to me “where is my candy” or “why don’t get as much candy as the other kids”. I remember as a child living with Type 1 finding a brand new pair of running shoes (which I needed!) hidden for Easter! I was SO excited because they were the cool pair I wanted! You can’t substitute candy for something so wonderful as that!

Creativity & letting normalcy rule within the boundaries of keeping your child safe, is essential to an enjoyable, stress-free Hallowe’en.

Trick or Treat

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Trick or Treat

October 31st is a significant day for me. I have 3 major memories that I associate with this day.

1. Going out for Hallowe’en as a child living with Type 1 diabetes.

2. October 31, 2000 is the day I dipped my 7 year old son Kurtis’ urine to discover he had 4+ sugar and thankfully no ketones but knew he had developed Type 1 diabetes. I dipped his urine as he refused to let me test his sugar with a glucose meter. I had poked his fingers 2 years earlier and knew this day would come.

3. I became a parent of a child with Type 1 diabetes trying to figure out how to let him enjoy going out for Hallowe’en without allowing his blood sugars to go askew.

This Blog is 1 of 3 parts sharing my experiences with October 31st.

Part 1:

When I was a child there were no pumps, rapid acting insulin or carb counting. My Mom did not have the technology at her finger tips to count carbs, push a button &/or inject & eat the treats. For the first few years, my Mom & Dad would take me out for Hallowe’en. They would use the bag of treats for when I had low blood sugars. I don’t recall having them as a random treat.

I don’t recall how old I was but I was under 10 when there came a time my parents figured I would be old enough to keep the bag of Hallowe’en candy in my closet. They told me I could keep it in the closet in my bedroom on condition that I tell them when I felt “funny” so I could dip my urine…yes…dip my urine!! to test to see if I was negative (a possible low). Then I could ‘treat’ with my treats.

I recall trying to have self control but what child under 10 can keep a bag of candy in their closet & not eat it at will? I understand why my parents did what they did, they wanted to try and incorporate some normalcy for me. They felt by doing this it would help me feel included in choice.

What happened? Each day when everyone was busy I would sneak candy. How did I get caught? My Dad was an avid runner. He always chewed gum when he ran. One day he went to go out for a run and realized he was out of gum. He came to me and asked to take some gum from my Hallowe’en bag. I still remember the panic. I felt horrified. The bag was full of wrappers but nothing else.

Little did I know that my Mom had been perplexed for weeks wondering why my urine was dipping positive for high sugar. After trying to avoid my Dad from going into my closet to get my bag of stash that no longer existed I knew the jinx was up.

I stood there with a full body panic as Dad looked into my bag. Dad was pretty cool. I do believe in that moment in time he knew that him & Mom shouldn’t have allowed this to happen. It was explained to me the implications of what happened to my sugars as a result of my choices. Mom was relieved because now she knew why!! Two very important lessons I learned and interestingly will never forget.

What happened with subsequent Hallowe’ens? It was actually pretty cool! Mom, Dad & I with my little sister & brother would go through our stash as most do. When we did, Mom, Dad & I would negotiate the price of my stash. It was a game. With that money I was allowed to go shopping for my own treats. Off to the local convenience store I would with my $1-$2 and go buy whatever sugar free treats that were offered.

I don’t feel like I missed out. Not once.

Stay tuned for Part 2.

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.

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Loss of Control – How Do We Regain It

I urge you to read the link I have attached.  Although it is from the Canadian Diabetes Association, I have read many links which involve Diabetes Associations that exist around the globe.  It seems on paper the protocol is in place if the school board or district is agreeable to implement & support.  Every parent past & present that has a child with Type 1 fight to keep their child safe at school.  The fact that our children are not viewed as ‘in need’ of special care in their daily management of diabetes at school is preposterous.  Every diabetes organization is posting guidelines & lobbying for change but it is happening too slow.  While school boards fight to keep their budgets or manage with less, our children living with diabetes’ risks of adverse events occurring is higher.

Examples to support the lack of guidelines & the situations Kurtis met as a result:

1.  In Grade 5 his class is in a portable.  Soon after the school year starts, Kurtis comes home to tell me during class that day he feels like he is having a low blood sugar.  He tells his teacher.  He tests & confirms.  The teacher sends him by himself out from the portable into the school to the office to get a juice box.  He tells me he is scared.  Two issues:  there are juice boxes in the classroom AND most important, she sends my scared son BY HIMSELF outside to enter the school & walk up a long hall & a set of stairs to treat himself for a low blood sugar.  What if he didn’t make it?

2.  In this same class, it is the middle of winter.  A similar event occurs.

3.  I discuss with the teacher the concern.  She explains she can not expect a student to go with him as they need to be in the class to learn.  She offers she can not leave the class to go with him & leave them on their own.

4.  I discuss my concerns with the principal.  She meets with the teacher & enforces a student needs to go with Kurtis when going to the office for a low…IF….there are NO juice boxes in the classroom.

5.  At one point, Kurtis has a severe low at school.  I meet with the principal & discuss options of having Glucagon for treatment if he becomes unable to take treatment orally.  She informs me the school board will not allow her or the staff to inject Glucagon.  I ask if children that have severe anaphylaxis to bee’s & peanuts have Epi-Pen’s at school?  She says “yes”.  I ask if the staff are allowed to inject the Epi-Pen if such an event occurs. She says “yes”.  I point out to her that both events need life saving injection of a drug.  She counters that she can call an ambulance with Kurtis & by the time they get to the school he will be okay.  I was furious.  How do you educate someone who is such an imbecile?  So stuck on the rules that they won’t consider a child’s life could be at jeopardy?

How did I deal with this?  I made myself on-call regardless whether I was sleeping from a night shift.  If I was working a 12-hour day, I was fortunate my parents were on stand-by.  I made it clear that the school was not to call 911 first (as the school was in the country), they call me.  I knew I could make it to the school quicker than the ambulance could.

Thankfully, with regards to his diabetes, nothing serious happened.

I am not sure how to make an impact to sway school boards to start a standardized protocol that allows for a budget for help in overseeing glucose testing, injecting & bolus of insulin, eating the correct food & bringing attention to the proper person the needs of a child with Type 1.  I do suggest lobbying & pressure by our local diabetes associations as well as supporting them in their campaign is instrumental.  Many voices are louder than one.  I urge you to take part.

Can’t Get Enough

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Can't Get Enough

Blueberries, yum! Lately, I can’t eat enough.

For 1 1/4 cup of blueberries there is only 18 grams of carbs. The same serving size has 3 grams of fibre. Blueberries are a good source of Vitamin C, Vitamin K and fibre.

The beauty of blueberries as well as other favourites such as raspberries & strawberries, unlike some fruits, do not have a dramatic spike in my blood sugar.

In researching the benefits of blueberries, all the advantages sound incredible, but many of these contain words such as “possibly”, “may” and “can”. Some study samples are small and show possibility but research is ongoing. With that being said, I won’t go into possible benefits.

What do I do with blueberries? For breakfast, after warming them up, I add them to plain Greek yogurt, chia seeds and flaxseed. If I am making Oatmeal Protein pancakes, I cook them into a syrup like reduction in the sauce pan. I don’t add sugar or artificial sweetener, which I never use anyway. If they are fresh, I add a bit of water. I love adding them to Nutrition Shakes.

With Shakes, I just go with the flow as far as adding ingredients. I keep track of carbs and fibre so I take the right amount of insulin for it. Below is the one I threw together yesterday. It tasted like dark chocolate with a hint of sweetness.

Ingredients:

1 1/4 cup frozen blueberries
1 1/2 cups unsweetened, chocolate Almond Milk
1/2 banana
4 tbsp Manitoba Harvest chocolate hemp protein powder
1 tbsp bee pollen (check with your Dr before eating this, if you are allergic to bee’s or are pregnant or nursing DO NOT eat)
1 tbsp unpasteurized honey with propolis (check with your Dr before eating this, if you are allergic to bee’s or are pregnant or nursing DO NOT eat)
1/4 cup Aloe Vera juice

I have posted a few recipes containing blueberries on Pinterest. Looking forward to trying them out!