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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.

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Be Ware!!! Nutritional Nightmares

Attached is an article posted in The Toronto Star.  It’s easy to believe that a food item listed as Vegan, Organic, Gluten Free, Lactose Free, Healthy, Low Fat, Fat Free is good for you.  Many products sold with these labels are, but as we read in this article, there are products touted as such but aren’t.  I urge you to read the ingredients listed, the Nutritional Facts on the packaging or go on-line or ask the company about gaining access to this info.

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Calvin’s Story – An Intro to Diabetes Beyond Borders’s Series on Exercise with Diabetes (click above to view the video)

I have a problem.  I assume everyone knows what I know.  I am known to speak too fast, leave words out of sentences because I think people will know what I am saying or mean and I don’t want to bore them…because I would if I was listening to me.  I am guilty of it in written words as well.  My texts contain gaps and spaces where words belong but instead contain ramblings that barely make sense just in case what I intentionally left out is not understood.  In essence, I have a way of being very, very confusing and frustrating to communicate with.  As I ‘mature’ (insert a hearty laugh), I am now understanding the frustrations of those who listen or read my words and I am making a concerted effort to make a point containing full sentences and less content.

What I describe in my preamble is similar to Calvin’s story.  There are few words spoken.  It is not a lecture or an instructional video. But pictures are worth a thousand words.  The word’s used in this video are sufficient to understand the intentions of it.  It is simple yet complicated.  It is a complete picture portrayed in less than 6 minutes of a few hours of a person’s life living with diabetes.

The reason for my preamble and posting this video which explains it so well….diabetes is much like my ‘problem’.  There are assumptions, gaps, moments, boredom, impatience, ramblings that make no sense.  It is a challenge to compile a complete sentence to summarize one thought.  It is also impossible to accomplish a full day living with diabetes and feel like we have succeeded at all of the things we expect to do.

If I was to ask 4 things of you so that you may live your life Beyond the Borders of Diabetes it would be this:

1.  Check your Blood Sugar at least four times/day and record it.

2.  Take your medication and insulin, ALWAYS.

3.  Eat Clean, Eat Well.

4.  Move

My next series of Blogs….Moving (aka exercise).  What will make the difference to get you moving, different options that will give you the passion to move and keep you motivated,

Tracy

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A Girl Explains – Putting Living with Diabetes into Perspective

To view the video click the words in blue, above this text.

As productive members in society we all have our bad days. The alarm didn’t go off. The school called and your daughter has been truant unbeknownst to you. A co worker took a bad day out on you. The dog chewed up your favourite shoes. You came home with the groceries and realized you forgot to buy milk and have none for breakfast. You are worried whether you will have enough money in the bank to pay the up and coming bills.

Now add diabetes to the mix. Maybe you live with it, your child does…maybe you both do. There are days when not only does the alarm clock not go off, but when you do wake, you or your child are having a low blood sugar or having some unexplainable high. Your child calls from school mid morning while you’re at work to say they forgot their Rapid Acting Insulin for breakfast and need you to bring it. Your toddler refuses to take their injection but you have to get them to daycare and you to work. You’ve been told you have retinopathy, nephropathy or your teenager has a small haemorrhage in his eye. You don’t know if your teenage daughter is taking her insulin nor will your words convince her she should. You are frustrated because you are 50 and your foot feels like it has bees constantly stinging them and there is no relief to let you sleep. You are on 4 different pills but your A1C is high and you are tired.

There are lots of reasons, lots of days, too many events to cite as to how stressed, challenged and overwhelmed we are living with a disease that is 24/7/365….BUT….I watched this video on the weekend and it put it into perspective.

We have choices. Plain and simple. Even with our rebellious kids and teens, we have to know what with support and consistency they will learn well. Yes it’s hard, yes it’s difficult and so frustrating. It is so overwhelming and consuming, BUT…it is not what you are about to watch.

I encourage you to Live your Life Beyond the Borders of Diabetes…and keep this young girl in your prayers.

Tracy

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Type 1 and Diets

I have spent the most part of the past 15 of my 37 years living with T1 ‘experimenting’ with many different facets of my diabetes.  I was always taught by my Mom that diabetes does not control me, I control it.  I learned and I believe I had the innate intuitive ability to know that my body is different regardless of whether someone else was living with diabetes, another chronic disease or was ‘normal’.  In order to make my disease work for me I had to try different things to see what worked and what didn’t.  Although the 1st set of Guidelines were established by the Canadian Diabetes Association in 1992 and the DCCT (Diabetes Complication and Control Trial) was published in the New England Journal of Medicine in 1993, I was not at a point in my life nor was it mandated that I should have routine visits with my Diabetes Specialist to learn or apply these.  I don’t recall (or maybe I didn’t care enough to investigate) a Diabetes Team that was established within my area to provide the education I required based on those established guidelines & clinical publication(s).  Suffice to say, I learned on my own and at many dangerous sacrifices which in today’s advancements and support I do not recommend.  As many who were or still on insulin(s) such as Toronto, Humulin R, Lente, Humulin L, Novolin NPH & Humulin N…you understand and I’m certain have experienced the random, unexplainable swings and sudden, severe lows that they produce.  Despite these experiences I did surmise that the need for a lower 2 hour post meal blood sugar was essential to losing that sleepy, groggy feeling or those horrible nasty, lay on the floor/ground and go to sleep events or eating Fruit to Go every hour lifestyle I had become accustomed to .  Also, that simple carbs & lots of carbs wrecked havoc on those results.  Not many prepared or packaged foods had labels yet and books were not readily available providing me with info to carb count whole foods.  Estimating ‘carbs’ was very difficult.  To confess, I didn’t know how to count carbs until my son Kurtis was diagnosed in 2000.  I was still counting exchanges or closing my eyes and pointing at numbers otherwise.  Prior to Kurtis diagnosis I learned that certain doses of Humulin R worked for certain foods.

Several interview papers, links and studies have suggested there are a limited number of teens, young and middle aged women living with Type 1 diabetes that could be diagnosed with eating disorders which involve binging or purging, but it is suggested the likelihood of such is twice as high with teens and women living with Type 1 diabetes and that there is certainly a higher incidence of manipulating diet and/or insulin dose to keep weight at a level deemed as ‘admirable’.  Unfortunately, it is being researched that such behaviour is linked to higher risk of complications such as retinopathy.

Based on what I had experienced with my weight & glycemic control here is what I did:  I restricted simple and complex carb (wheat, grains, high GI fruits and veggies) (my reference was Richard K. Bernstein who has Type 1 and went to Medical school to learn more about his) so that my total daily intake was at a certain amount.  That amount was determined according to my goal.  I had 4 guidelines: (1) lose weight (I would keep my TDD below 21 units  (2)  maintain weight (I would keep my TDD between 22 – 25 units)  (3) maintain and/or risk gaining cause I just wanted to be ‘normal’ and ‘cheat’ (26 – 29 units)  (4) I didn’t care anymore, I was tired, worked too many hours, overwhelmed with my son’s T1 diabetes, my BG‘s & diabetes control, having meals on the table on time to get my children to their activities on time and working shift work and subsequently daytime hours but more than 40 hours/week.  Interestingly, I rarely ever went above 40 units even when I didn’t track.

Approximately 9 years ago I decided I was going to try and become vegetarian.  I had read Brendan Frazier’s book on being a Tri-Athelete and his succeeding despite being such and thought I’d give it a try.  I loved that way of eating.  I don’t recall a lot of how I did it.  Even my BG’s do not stand out in my mind.  I just know I lost weight and I felt incredible.  Not a ton though. I’ve never been big, just soft at times BUT…my body never looked so good.  I wasn’t skinny (like when I had my tonsils taken out at 32), I was cut, lean and muscular.  I have a pic.   I am so proud of it cause I knew I ate well but, unfortunately, I also became anemic!  Then, one weekend after I started feeling so cold, tired and short of breathe from my symptoms of anemia I craved to have a hamburger, white bun and all….and it just continued.  And the lean, cut muscular Tracy disappeared.

I would go in waves of “don’t care what I eat” to “I have to strictly adhere to ‘this'”…whatever what “this” was.

Despite my dietary experimentation, throughout these years, I participated in many activities & sports to keep myself healthy.  The main reason being, upon an Insurance physical in my mid 20’s after having my two babies, my Family Doc had me do 20 steps up and down on the ‘step’ to the examine table. I lost my breathe!!!  He & I were both appalled.  He bluntly told me I needed to get ‘in shape’, if not for me then for my children.  From then on, I was in one form of activity or another.  The ‘activities’ I have found most beneficial are weights 2 – 3 x per week plus 30 – 60 minutes cardio (running, walking, elliptical, biking, stairs) 5-6x/week.  In our fast paced lifestyle of today, I find stretching of great benefit too.  I also felt it was essential to be an example to my children with regards to how important physical activity was with or without diabetes. (I have one with, one without Type 1)

So…why I write this.  And the ‘ah ha’ moment.  I think best if I number the events that surround this…

1.  In Feb 2011 I was separated after a 22 year marriage and 2 wonderful children.

2.  In April 2011 my position at the company I worked at, that would provide me the income I needed to live independently, was eliminated.

3.  I lost 15 pounds. (not intentional of course, it was not healthy nor did it look good, my hip bones stuck out, my size 6 pants were falling off and my friends commented I had no ‘bum’)

4.  Shortly after I visited my wonderful Endo who weighed me and was very, very concerned.  I had a good cry with him and he reassured me that if I just remembered to eat I would put my weight back on.

5.  I put the weight back on and 5 lbs more!  I fell in love.  Crazy what love does with wining and dining!

6.  I visited my Endo again and he is happy with my weight…I am not.  He is concerned I am not satisfied.  He sternly tells me that there should absolutely be no carb cutting on my behalf.  He educates me (although I already knew!) that my BMI, although 26, is good because I am quite muscular for my height.  Each subsequent visit he asks me my TDD and if I am eating carbs. But I had determined through my past experience with carbs and how I ate them that they do not marry well with my post meal BG’s and weight.  I am conflicted.  I know if I get back on the weights & cardio I can tone up and lose AND my post meals will rock with the absence of most carbs but my Endo wants me to keep on some carbs. SO… I have been experimenting (again) which leads me to my next point….

I am a HUGE fan of Oxygen magazine.  I have been for years.  I have a few of Tosca Reno‘s books & cookbooks.  I think the institution that Robert Kennedy produced is respectable and admirable.  As I read more, I understand that women can eat 4 – 6 meals/day (Clean Eating of course!), participate in weights and cardio but not to the point of hours in the gym each day (which is appropriate to our lifestyle today) and look amazing.  The mandate is 80% Clean Eating, 10% exercise, 10% genetics.  BUT…I  struggled.  All those Clean Eaters that looked incredible seemed ‘normal’ and I reasoned they glowed and were toned because they didn’t have diabetes.  They were not Tracy living with T1 or the likes of anyone living with Type 1 diabetes.  I made only select recipes to try from the cookbooks or mags. In my mind they had to have at least 5g of fiber and/or carbs around 20 – 30.  Anymore than that and I turned my nose up.  In my mind I thought…they need to eliminate the idea of making sure to combine a complex carb and protein with every snack and meal.  How selfish to not think of us who have the weight issues and complexities of such a disease as Type 1.

Then…came along a post I saw on Facebook just about month ago. (see most recent pic of Krista who lives with Type 1 and her post of Eating Clean & Type 1 on my Blog)

I read Krista Presotto’s post to Oxygen on Facebook and it gave me hope.  After several emails back and forth Krista reassured me Eating Clean was okay and beneficial with Type 1.  Through her inspirational post my journey has started.  Throughout the past few weeks of beginning this new relationship with combining complex carbs (I love quinoa! and had rice for supper for the first time in years!) and protein I am astounded.

I lost 5 lbs in one week!  I believe it was a result letting go of one or both of the following;

1. Starving myself because I was too busy to eat and thinking I was on an insulin pump that was okay

2. Eating with too much or too little thought.  I was an extreme eater.

What I have found is if I eat a combo of complex carb and protein every 2 – 3 hours, now that my body has learned it ‘deserves’ that, if the time frame goes beyond that, I am starving!!! (I’ve learned that’s a good thing…my metabolism is on high drive if I am adequately hydrated & nourished).  Also, my sugars for about 80 % of the time are within target!  I also have less low’s Eating Clean.

Yes, it takes a bit more planning and forethought but given the benefits I have had with the small efforts I have had to put in, I am more than motivated to keep going.

Whether you have Type 1 or Type 2 I dare you to try it!  If you do…I want to hear your story, good and not so good…

Investigate, research…live your life with diabetes beyond borders.

Tracy

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Parenting and Type 1

My daughter Cayla sent me this link. When I saw the picture of these parents with insulin pumps tattooed on their abdomens for their son because he felt like he ‘stood out’, it prompted me to write this…

How far should we, as parents, attempt to live within the world of our child & teen with Type 1 diabetes? What does it take? Type 1 is such an individual disease, are there certain ‘cookie cutter’ actions and reactions that will make or break a situation, a phase, a stage? Because of its individuality is it a ‘roll with the punches’ disease outside of management guidelines? What are the aim(s) to accomplish? And at what point in time? What is the final outcome we are trying to achieve?

We truly are a unique, specialized group.  When someone, especially a child or teen, lives with diabetes, it really does feel like they stand out, no matter how hard we try to sympathize, educate, network, or be an example.  As parents we can only do our best as we know how, by educating ourselves, networking with other parents, groups and utilizing your child’s diabetes team for support & resources.  Aside from all these things we do for our children, there will be experiences & feelings that they will have on their own, to learn from or not, that we will never understand, feel or be able to help them through.  BUT, this is what makes each individual living with Type 1 so strong.  If we come together in this élite club to help each other and our loved ones, it does seem to make the learning curve and journey easier.

What’s your journey parenting a child living with Type 1 diabetes? What part of the journey are you on?  Here’s a piece of mine….

Living with diabetes since age 5, I was always taught by my Mom I could do anything I set my mind to.  Parenting a child with Type 1 diabetes for almost 12 years (he is almost 19 now), I projected to Kurtis the same mantra my Mom taught me. I determined I would teach him this by always being in my finest diabetes form and successfully accomplishing whatever I chose to do. I wanted him to see I controlled my diabetes, it did not control me. I was very conscientious about expressing or showing the side effects of my highs or lows.  I hid it all from him.  I wanted him to emulate my actions and examples so I could save him from some of the lessons I had learned the hard way. I thought by doing this, he could learn, through an easier avenue, the example of how to achieve his personal & diabetes best in whatever it was he wanted to do. I went so far as to raise $5,500 for the Canadian Diabetes Association‘s Team Diabetes and run a half marathon, as well as establishing a successful career in the field of diabetes. I wanted to show both of my children that when you want something, you can achieve it, embrace the challenges of disease and empower yourself through it. 

I learned quickly that despite my goals, I could not save Kurtis from the experiences life would put before him living with diabetes. In Grade 3, Kurtis’ teacher asked me to come speak to his class.  The kids were afraid if they touched him they would get diabetes!  It wasn’t until Grade 4 that he ‘proved’ himself worthy of acceptance.  His insulin pump infusion set came out during recess.  At that time, he was using a teflon slanted 17mm infusion set (Silhouette by Medtronic).  For the few times he was ever required or willing to insert that infusion set without EMLA, he accomplished it on his own that day.  The kids in his classroom watched as he inserted this very LONG needle into his little body all by himself.  From that day forward, Kurtis was ‘cool’ and ‘brave’.  He felt so good about it, but it broke my heart.  I was so proud he was able to put a new one in without the EMLA, I know how much it hurt him, but I was also so sad that his classmates finally ‘liked’ him because he inserted a big needle into himself. For whatever reason, that was the day the children learned they could play with Kurtis and not catch it.

How difficult is it for us, as parents, when we can’t feel and live through everything our children experience no matter how hard we try.  We have concerns for today, tomorrow, the near & distant future. We want the best for all of our children but, the child(ren) we have living with diabetes concern us more.  We are in the midst of what some days feels like an unending barrage of demands which are beyond our control; low & high blood sugars, needles, pump management, tests, carb counts, emotional outbursts & potential complications.  It seems some days the attempts to keep it all balanced AND understand the psychosocial aspects feels like we are sinking into quick sand. Aside from all of the ‘normal’ questions we ask ourselves with raising a child, we have to ask ourselves deeper questions which seem accompanied by complicated answers such as; how do I empower my child so they can live a healthy, active, fulfilling life with diabetes. We are willing to do whatever it takes to show support and empower our children/teens.  I felt I had the upper hand in that, I had THE advantage, I had IT.  Until one day, at one of Kurtis’ diabetes clinic appointments it became apparent to me that my actions were teaching him he was not allowed to make mistakes. Inadvertently, I was not giving him permission to experience his diabetes, learning how to live with it, making it his own.  He felt like a failure when he had a high or a low blood sugar because he could not achieve the control I portrayed to him I had.  I thought I was doing what was best for him, living with Type 1 for 30 ish years, I was the ‘best’ role model for him.    But was I the role model Kurtis needed?

As parents, we try our best to understand what our kids are going through as they attempt to conquer the quest of living with a chronic disease that, for the most part is not evident to those around them. We want them to function ‘normally’ yet embrace their diabetes & manage it successfully, requiring intensive management, something that is difficult to hide.  As a parent living with or without Type 1, it is a difficult course to navigate. How much guidance and ‘pestering’ is too much? At what point should the reins be loosened for them to run free or freer?  Does it help to tattoo an insulin pump on your body to show your child you understand they feel different & you support them?  Do you raise money each year for JDRF and wear t-shirts that have pics of your child that say you want a cure?  Do you put them in the activity/sport they are passionate in, tell them they can do whatever they want and teach them to manage?  Who do you use for support?  Why?  What successes & learning curves have you experienced?  Do you join the Canadian Diabetes Association’s Team Diabetes and run a half or full marathon, whether it be alone, with your child or as a family? Do you volunteer? Did you start a website, blog, group? Write a book? How has your action(s) helped you with parenting your child & teen with Type 1? How has it helped your child & teen? What about your family as a whole?

Today we are fortunate as we have great groups available for them to participate in such as Connected in Motion & iChallenge Diabetes. Our Juvenile Diabetes Research Foundation’s local groups are very active & growing. Paediatric Diabetes Centres host a number of activities & meetings to bring parents & children/youth together. These groups empower all of us affected with diabetes to participate, connect & learn with others living with Type 1 diabetes. I encourage you and yours to seek them out.

Please share and discuss so that our children & teens now and in the future will live their lives with Diabetes Beyond Borders,

 Tracy


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When to see a Doctor

So apparently I was sick. Today my Doc put me on antibiotics for 3 weeks! The Nurse at the Dr’s office guffawed at me as I told her in my nasally, short of breath, raw voice I had been ill for 11 days. And as Holly Runs posted today on my personal FB status, I should have listened to my gut. Although my Instinct (I put that with a capital “I” for you Holly Runs!), my Mom & my Man said I should get to the Dr asap. The clinical nurse in me created a stubbornness that said; “fight that thing! It’s only a 20% chance you need antibiotics!”. What I didn’t take heed to was the fact I had a fever. I wasn’t aware until Saturday when I stopped taking Advil Sinus & Cold 24 hours/day and started the symptoms of a fever and climbed straight back to bed with the heat cranked beyond reasonable, blankets pulled up to my chin, freezing! AND subsequently, what follows? The sweats!!! That, and my sugars this weekend were horrible. When I experienced all of that, I knew, I had experienced IT! Should I have waited so long…is 11 days too long?

See, I took the Sinus & Cold meds almost the day I got sick, not for a fever but for the sinus pain/pressure. The pressure/pain was intolerable. Now I know everyone’s pain tolerance is different but let me put it into perspective…I had 2 C-sections delivering 2 babies weighing 10 & 11 lbs each where the spinal/epidural did not work on half of my body during delivery, I didn’t cry, scream…get my pain tolerance? I was focused on Easter celebrations, I was so excited to have my whole family home, so did not take heed that I was possibly masking my symptoms of a fever by taking this. I knew it relieved the symptoms I was ‘feeling’. I figured after my body kicked my butt to the couch for a few days and some natural remedies I would recover and move on. This past Friday afternoon and Saturday it seemed that it all was coming to an end, I seemed to be on the mend. So much so, I stopped taking my Sinus & Cold med! A ha!!! Good thing! It is also at that same time my sugars went a-wall and the fever reared its ‘ugly’ (yet I’m thankful) head.

So my peeps, take heed!!! Learn from me! Here I have a background in healthcare, but, as my mother said to me tonight, if it was one of my children I would’ve had them to the Dr a week ago!!! Why is it I don’t take care of myself as I would others!  

Those Sinus & Cold meds do a great job, just remember to not rely on them entirely, see what they are really hiding from you, what you need to know! Especially, whether it be sooner or later, it will affect your diabetes control!

I have lost 11 days as of today and at least another 2 − 3 while I wait for the antibiotics to kick in before I can get back to basic living.  It won’t be until next week that I can begin actively working & training again.  On one hand what a waste, on another, what a lesson…for me and hoping for you.

BTW>>>texted my trainer tonight, told him I can’t wait to start again next week!!! 😀

Blogging this so you can live your life with Diabetes Beyond Borders, 

Tracy