I am an Endless Legend

This morning I scan Facebook for motivation and laughs.  I hate the news. Rarely do I search out news.  I am skeptical in its presentation versus reality.

Within the search, I find this.

Seb’s video motivates me.  Focus on today.  Small steps.  That’s all I hear.

Tonight I find a hoodie with my Maiden name which has a saying….

“I am an Endless Legend.”

And I feel like I can be a Super Hero.  Yep that’s right.  Click on the link to see what motivates me to write about it.

http://www.sunfrogshirts.com/DOUGHTY-3254-White-29514080-Hoodie.html?23035

My maiden name is Doughty.

Today our temps reach above 0C.

I am closing in on living with Type 1 diabetes for 40 years.  Exercise, activity, healthy eating and keeping myself in shape and healthy is important to me.

BUT, It’s been a rough few months exercise and otherwise for me. Winter and I don’t get along as far as energy and ambition.  The month of February in Ontario was the coldest on record since 1875.

Word on the Weather Network is temps will reach upwards of about 6C.   It will feel balmy if it is true!  No wind would be nice too!  I haven’t heard about the records set for wind this winter but one must exist!!

Today I work from home finishing up some Admin that’s been driving me crazy. The sun shines bright all day. The bright sun gleaming through the windows blinds me at times. Despite that, I embrace the intensity of it.

Suddenly the hope appears with the time change and the increase in the intensity of the sun.

About 5pm, I take a break from the Admin work I focus on all day.  I put on my ear buds and hook up my music. I make my way to the ‘super mailbox’ up the road to get our mail. It feels so good to get out.  I can’t stop looking to my left, smiling at the sun as it made its way down the sky to sleep for the night.   Today, I am thankful for the gift the sun has given.

I wish the roads allowed for me to put on my running shoes and go, but I can’t stand wet feet…and not good for the well being of them either.

Knowing I can’t let this time go, I take the ‘long’ walk home.

Thankfully, we live right off the Trans Canada Trail…it is just a few minutes walk from our home. I am excited to make my way there as soon as the snow melts and puddles aren’t ankle deep to get my running gear on and go…for miles and miles.

Despite the fact I wear my Blundstones, to keep my feet dry tonight, I want to run so bad. It is so hard not too.

In anticipation of this, I find a post on FB of a T and hoodie that include my Maiden name…and I fall in love. So, I ordered a few work out T’s and a hoodie.

And one for my Dad…cause if it wasn’t for him….I wouldn’t be an Endless Legend!

What do you do to motivate yourself to move?

P.S. Pink is my favourite colour…of what I ordered, I picked a bright pink tee…and I while I wear my fav colour I will remember while I am running or lifting weights…. “I am an endless legend.” for so many reasons.

Attempts at Perfection & It’s Failures

“Have no fear of perfection – you will never achieve it.” – Salvador Dali

I can’t get my head around it.  Does anyone with diabetes who is motivated in their management think they can’t achieve perfection?  Yes I said CAN’T.

As a Person With Diabetes I think that not only can I achieve challenging feats beyond my day to day life, such as ascending the Peruvian Tundra to over 15,000 ft BUT I can also achieve perfection with my diabetes.

As a PWD I know that this mindset is superfluous.  BUT, I still want to pursue it, just in case I can achieve it.  You never know, right??  Isn’t that a great goal to set and pursue. Almost like a cure, really.

BUT….yes, I said BUT…I am reminded of how the attempts of trying to be all that to my endocrine system and diabetes management isn’t that simple. Even after coming into 40 years of living with diabetes and being a Mom of a PWD for 14 years.

I am reminded on our flight to Peru, no matter how hard I attempt to make my diabetes perfect, I cannot.

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Upon take off I am aware of the potential impact the air pressure can have on my insulin pump delivery.  The rule of thumb despite there is not total clinical evidence with regards to this is to disconnect on ascension and descending. Why?  The talk of the town is that upon take off the pressure can change the delivery of insulin to cause a low blood sugar. During the flight the pressure change can create air bubbles resulting in missed insulin after landing.

I have experienced this throughout the past 14 years of travel on an insulin pump but was not aware of the ‘talk’ that circulated about this until the past few years.

So, whether clinically relevant or not, I decide to take heed to try and avoid this.

We are prepared for take off at Pearson.  Status quo.  Prior to boarding I check my Continuous Glucose Sensor.  All is good in my diabetes world.

As the plane positions itself for take off on the runway I disconnect from my site with the intention of reconnecting within a few minutes after the rapid ascension is complete.

I am excited.  I am thinking about our trip, the flight which is 21 hours with stop overs.  In my mind I am running through what we packed versus the list I print and check off.  I am nervous.  I am landing in a city that has an elevation of over 8,000 feet.  I am worried after the stories I am told of elevation sickness.

The airline steward serves our snacks.  I give it to Steve.  Packed full of gluten. I don’t need a snack anyway.  I’m not hungry.  I look at some magazines.  I do a Word Search.

Several hours pass by.  I start to feel like the Sahara desert lives in my mouth. My stomach feels like a brick made a home in it.  My chest feels heavy.

I question these feelings.  Why?  It feels like I am high.  How come?  I don’t clue in to check my sugar though.  I attribute it to the elevation, the dry air, the excitement.

The steward comes around again.  Offers snacks.  I pass mine onto Steve’s again.  Maybe if I eat and drink a ton of water I’ll feel better.  I take one of my gluten free bars out of my bag.  I bolus, I eat. I feel like crap.

Is it the flight?  The cabin pressure?  I just can’t make sense of it.  Obviously my brain cells are not firing on all cylinders.  Doesn’t being on guard all the time with managing diabetes do that to a person?

Then…I get an itch at my site.  And so I scratch. It is so itchy I must lift my shirt enough to place my hand under so I can make skin to skin contact to find satisfaction. While scratching I realize my tubing at my site is flopping back and forth….I am NOT attached to my site.

I forgot to re-connect after take off.  That was 3 hours ago.

In my effort to achieve diabetes management perfection, I fail.

Now, forgiveness is mine. I am so insulin sensitive that I only end up with a BG of 11 mmol/L.  I check for ketones as well.  They measure at only 0.3.  So…I correct for the gluten free bar and basal rates missed as well as a small amount for the trace amount of ketones.  It takes several hours to come down and even though my sugar is only 11, I feel like I’m on the edge of DKA.  I  know what it’s like, I’ve been there.

We land in Peru and I am almost in target.

After that incident I make a promise with myself.  Disconnecting on a flight to achieve perfect blood sugars is not a goal I wish to achieve.  For what I wish to achieve I fail.  I avoid a potential low but instead end up high and feeling terrible.

What’s the lesser of two evils.  I can’t answer that but I will tell you I will no longer disconnect my site.

Where to Start…Our 12 Day Crazy Busy Trip to Peru…The Intro

I have heard this song “Home” by Edward Sharpe and the Magnetic Zeros off and on while listening to Songza.com for the past few years. Yes, the tune is catchy but the words hit the deepest chord within me.

What is Home?

The days my daughter Cayla and my son Kurtis were born I found my home. They were and still are the centre of my being and when they were little that was where I trusted I belonged. Where I felt beyond comfortable. I was in my realm. I always wanted to be a Mom. I knew I would protect them as best as I had in me to the death. They have been, still are and will always be a part of me and the core of my being.

Growing up my Mom was very fond of the story of Ruth and it seemed she quoted a verse in particular often and in a very fond way.  I didn’t understand the impact it would it have on my life until the past few years.  And so I also associate this Blog series on our trip to Pero to what Ruth says in Ruth 1:16.

Ruth 1:16 (ISV) | In Context | Whole Chapter

16 But Ruth answered, “Stop urging me to abandon you and to turn back from following you. Because wherever you go, I’ll go. Wherever you live, I’ll live. Your people will be my people, and your God, my God.

Besides my children I have never trusted anyone so much in my entire life as I have my husband Steve.  Even early on in our relationship with the decisions I made, I felt he always had my best interest at heart.  I trust he will love and accept me, diabetes and all. Never once has he ever had to say to me “Trust Me.”.  My gut just says I should. One should never have to say “Trust me.” to make one believe they should.   Actions speak louder than words.

In our conversations in the past many years, aside from our trips, Steve has been to 42 countries.  A majority of them have been for pleasure, as well, some for business and missions.

Of these countries he often speaks fondly of Peru.   He tells me it is the most beautiful place on the earth.  Then I must go there!!!

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We are aware of ‘rumours’ that Machu Picchu may not be open to the travels Steve experienced years before.

So, when do we go?

Well, life is funny like that.  In 2014 both of my children announce that one is moving to Edmonton, Alberta and one is moving to Wellington, New Zealand.  They won’t be home for Christmas.

For all the Mommies out there I can hear and feel your overwhelming voice of sadness and “that sucks”.  YEP!  It really sucks.

In early Summer I say to Steve that I can not see a Christmas tree standing tall, all lit up with the kids ornaments for the past 23 years hung in all its glory and no kids.  I threaten fetal position in front of the tree.

And so I ask.  Can I please go away with you to the most beautiful place on earth.  And it is written in stone, so to speak.  We commit ourselves to a trip to Peru to experience Machu Picchu on Christmas Day and Plaza Des Armas in Cusco on New Years Eve. One of the top 10 places for New Years in the world!

I am excited but as I research and speak more to those who have been I get nervous.

Despite my nervousness and apprehensions based on others fear mongering, Steve reassures me I can overcome anything that comes our way while we vacation in Peru. Just like Vietnam and Cambodia.

We are a spontaneous pair.  Our Vietnam/Cambodia trip begain with “hey do you want to go to Montreal for a long weekend?” and 3 days before taking flight instead of Montreal, we book a flight with no plans except a hotel ‘base camp’ for Vietnam and Cambodia…for the same price.

There wasn’t a glitch in that whole experience  (except running out of underwear in which I realize I barely fit into even a large size of women’s Cambodian underwear!)  I look back on that trip and it was worth every minute. So much so, we both want to go back.  Despite all the low blood sugars from the heat and humidity as well as losing my beloved Continuous Glucose sensor because it just couldn’t adhere to my skin. (I know how to make that baby stick now!!!)

Despite our challenges and crazy, spontaneous trip while in Vietnam and Cambodia, I experience great apprehensions with Peru.  The two potential issues I am most concerned about are elevation sickness and keeping safe from gluten and wheat so as to avoid a reaction, at worst a severe one.  The stomach upset is one thing.  The hives are another.

I am proactive with elevation sickness and speak with my family physician.  He advises I don’t need anything, I’ll be fine. He was just there and all was good.  He tells me I will be okay. This gives me reassurance.

I admit, on this trip I am not fully proactive in my celiac disease as I should be.  I am still in a learning curve.  This is my first trip as a person living with Celiac disease.  We assume given the Peruvians very large crops of corn and potatoes…there would be very little wheat.

Not so.  Stay tuned.

I’m OKAY!! Really!?

Wedding Cruise5With the exception of the time we dated in high school, my husband Steve is diagnosed with Type 1 spousal diabetes for just under four years.

It may seem silly but I assumed in all this time he knew diabetes like I did.  I can’t even tell you why I thought he would learn 39 years of living with Type 1 diabetes as I have experienced by observing signs, symptoms and random sharing of how I feel in certain situations.  He has never had formal education in the less than 4 years we have been together.

The moment I understood I need to share my life with diabetes more?

We arrived in Lima, Peru.

After settling on the last leg of our journey we decide to head out in search of a few markets and sites for some art pieces.

On the way back, my pump alarms that my sensor is telling me my blood sugars is 4 mmol/L.  My sugar is going down.  Stupidly, I have no sugar on me…Steve is so good he usually does have lifesavers in his pocket…but he has none.

I feel it is lower than 4 mmol/L.  But I am stubborn.  Steve asks if I want him to go into a store and get sugar.  I say it’s OK .

First, when my sugar trends towards low but I feel like I am not in danger, I don’t treat with rapid acting sugar, I set a temporary basal rate.  I think it’s a control thing.  I want to change the stupid system that really works…just to see if I can make it better.  I am so anti-sugar….I really want to take it…mental block.

So…I say to Steve, it’s okay, I’ll set a temp rate.

And we keep walking.

And several minutes later I become dull.  And quiet.  I lack my bubbly, sunshine Type A personality.

Steve knows but doesn’t know.  He hasn’t experienced such an extreme moment like this.

I personify strength.  Knowledge.  Power.  Ability.  I am never the victim.  He trusts that. Even thought his gut tells him different.

DBB Hypo Peru

So he trusts me and my choice.

Until I mumble I want ice cream.  And he asks further questions.  And I am indecisive and vague.

We end up in a grocery store a few blocks away from our hotel.  He asks me several times what I want to get….I don’t know.  In my mind I want to ask him to help me.  Save me from this terrible prison in my mind of wanting to be in control.  Not to ask for help.  I will take care of myself.  I won’t confess I have failed.  I won’t ask.  I refuse.  I won’t.  I have done this since I was a little girl.  My (mis)behaviour trumps my voice.

I am no good to anyone.  I know it.  I am too far gone to say that.

Steve finally suggests and I agree.

We pay out at the cash and I inhale.

Many minutes later Tracy returns.

Later that night we debrief.  He tells me…”I knew, but I didn’t because you know!”, but I did.  And I failed to tell him.  Thankfully he saw it today. Exactly what I just described.

He tells me “…from now when when you say “It’s okay, I’ll set a temporary basal rate.”  I am going to pop into a store and buy some candies.”

And he will tell me.  “You need this candies”.  And I now I will take them.  Regardless of how bad I want to be in control.  Because, we have this consensual contract.

It’s good to share my diabetes.  A liberation.  Enlightening.  It is a relief to give a very small piece of it to someone else.  Even though it is only a very small piece of what my mind thinks of 24-7-365, if feels good. Despite how much control I want.  And how hard it is to let go.

Travelling with My Pharmacy

DBB Huchay Cusco Blog

There will a few posts/Blogs about my travels to and within Peru.

BUT..

I feel this post in particular is a huge one and is pressing upon me to prioritize even though it’s not in order.

We spent Christmas Eve in Agues Calientes. We planned to climb Machu Picchu Christmas Day.

I became very ill with a very high fever and ultimately sinus congestion, sore throat, fatigue among other things.

I am proud of the way the situation turned out as I recovered very quickly compared to most times I experience this. My husband questioned if I should take part in the venture to Machu Picchu but I insisted despite feeling down and out I would not miss such an amazing opportunity. This is a chance in a lifetime!!! And so we did.

With that being said, after we returned to Cusco a few days later we made plans to take part in a two day trek up the Andes mountains, through the Peruvian Tundra. We would then be hosted by a family overnight before descending back down the next day to another town a few hours away from our starting point.

We reach an elevation of 15,100 feet. Understanding that breathing would be a challenge at the best of times, I am overly concerned that with my congestion and swollen throat it would present greater issues.

On our way to the drop off point 1 1/2 hours away by jeep, I ask our guide to stop at a pharmacy to buy cold medication to help keep the symptoms from being too overwhelming throughout the climb.

As I walk into the pharmacy I take note this is the very first lesson I learn.  Never assume I can go away for 2 weeks and be healthy the whole time. I usually pack cold medications, gravol etc for those ‘just in case’ moments.

This is the first time I didn’t take my personal pharmacy with me. Sigh.

Our guide Henry takes me into the pharmacy in Cusco. I tell Henry in English that I need an anti-histamine/anti-inflammatory. I expect something along the lines of Advil Sinus & Cold or Buckley’s.

After the Pharmacist asks Henry a few more questions in Spanish….”Is it altitude sickness?”…”No, I had a very high fever, sore throat and sinus congestion.”…He recommends a product.

I take a ticket to the cash booth/dispensary at the front of the store. She gives me the box of medication. I am so relieved I will have the meds to help with the congestion, I don’t consider that I didn’t tell the pharmacist I have T1 diabetes OR that I took time to read the ingredients.   At this point I don’t make the connection that Dexametasona (in English “Dexamethasone”) is a steroid!!! I mean, come on, I am a Nurse. I should know the 5 R’s!!

AND I can’t buy a steroid over the counter in Canada! For good reason!

I am told to take one pill now (it is 7:30am) and again at supper. I can take it twice a day for a few days.

Within an hour I can feel the relief. I am overjoyed….until…

Fast forward to that evening and into the overnight…AND the next day…my blood sugars begin to climb…and climb…and climb.

I take insulin corrections like drinking water with no change. Not even a flicker in my Continuous Glucose monitor display. My finger pokes confirm all is not right within my diabetes world.

I reflect back on when we arrived in Cusco. Within a day I was setting temporary basal rates on my insulin pump for low blood sugars and now??? I am insulin resistant in the Andes Mountains??

I play scenarios in my mind. Is it the altitude? Is it dehydration? Is it the anaerobic feedback from the intense activity which leads us to experiencing burning leg muscles, shortness of breathe so bad our lungs are burning?

When I work out at the gym and do intense heavy weights my sugars spike. When I do hill training when I run I get the same effect. Is this the same?

At this point I haven’t made the connection yet that the cold meds contain steroids.

I do think that in part, the intensity of the climb did cause an adrenalin surge that did cause my need for more insulin….pair it with an exogenous steroid in my cold meds and here is a recipe for blood sugar disaster.

My key take away?

Bring my own cold meds and pharmacy.

If ever in an emergency that I require medications while in another country, make sure to tell them I have diabetes.

If and when I decide to ascend to 15,100 feet (or higher), take note and act that if it feels anaerobic, increase my insulin rates to accommodate to it.

No doubt it is a tough balance to achieve but I wouldn’t want to throw my hands in the air and not keep playing the game. Next time I want to improve on this experience. I accept my sugars will never be perfect in these situations especially, but, I will do my best.DBB Dexalor

Meaning

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Meaning

If you didn’t live with diabetes would you be the same person you are today? What has changed about you & your family as a result? Has it been a positive change?

Without a doubt I have a passion & a purpose that I believe would have been more difficult to discover had it not been for living with ‘my’ diabetes. Although there are days I wonder how much more energy (many without diabetes say I have more then they could harness so I hesitate to wish that upon anybody! LOL) as well as how much easier & clearer my mind would be to think & process daily thoughts (that again scares people that if I thought & processed more than I do I would be a very overbearing person). Maybe I am just really good at hiding how crappy I feel somedays. BUT, in the end, I have no regrets or misgivings about being handed this lot in life. Especially now that I sit with peeps & their families that live with diabetes & appreciate that I am their coach. I love sharing my experiences of 38 years of living with diabetes, as well as 13 years as a Mom of a child with diabetes to help others.

On the other hand, I do find at this point in time challenging as a parent of a ‘child’/young adult living with diabetes. At time of diagnosis & since he became a teenager I wish it had never happened or that I could keep him at the age I was able to manage him fairly easily. I tell myself that someday I will not feel that way. He too will find his rhythm, as I did, living with T1 diabetes. I don’t think there is a parent out there that can say that their family, them or their child is better off because of having diabetes.

My Mom’s perspective? Now that she knows I take great care of my diabetes & have a career that I love as a result of it she doesn’t worry as she did years ago. With that being said, I know she still has this ‘old’ diabetes mindset that one day I will announce I have kidney failure or I’m going blind. But as each day goes by I know she sees this will not happen…not in this day in age.

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.