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

Eden’s Worst Nightmare

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Eden's Worst Nightmare

Below is a mind-blowing 2 minute read.  Eden’s diagnosis of Type 1 diabetes came at the age of 17. After gaining a lot of weight & feeling she did not have the support from the health care profession she needed to empower herself, Eden set out on her own to learn & discover how to live life with diabetes beyond borders. Eden has a very busy life, finishing her degree at University as well as setting goals to manage her diabetes & lose weight in a healthy way before her graduation in May.

Support Eden as she moves forward daily in her journey to empower herself living with diabetes & successfully meet a weight that is healthy for her body. What she is achieving since being diagnosed 4 years ago is nothing short of amazing!

“Hey Everyone,
Sorry I was away since Thursday with the family for a weekend shopping trip! We had a lot of fun.

So I thought I would write on a mix of things today !

When I was away this weekend I tried to behave the best I could (even though some regular chocolate just happened to work its way in their LOL) I got some diabetic/sugarless candy from my family today ….I had chai tea candies…soooo good! Go to Bulkbarn and get some!

I thought I would share some more personal stuff, since I know everyone grapples with this when trying/thinking about losing weight.

One big deciding factor when trying to lose weight is …why are you losing weight? I do not know about you, but just saying “to be healthy and be slim” can be a very vague reason to start to lose weight….Plus this is a LONG term goal.

A HUGE recommendation I have is to sit down, with a pen and paper and write small term goals to lose weight. For example here are some of mine (some I have already accomplished, some I have not)

1. Be able to do the stair master for longer then 10 minutes (I can do 45 now!)
2. Test my blood sugar 4-5 times a day (I have been good on this lately)
3. Go to the gym 4-5 times a week (finally getting this habit)
4. Get to second goal weight 165 (I hope to be here around May 10th this year)
5. Drink 8 glasses of water a day (very hard to do ….lol and not much fun)
6. Take vitamins every day
7. Be able to feel confident when I am in public
8. Be able to wear clothes that are comfortable and make me look and feel AMAZING
9. Have more self-confidence when doing day-today stuff
10. Be fit and ready trying on wedding dresses.

OK I wrote 10 of my 20 down lol Some of these are going to take a lot of work for me (especially 7 and 9). I have always struggled with self-confidence issues. But one incident that really hurt me I will discuss since I think most have gone through a similar situation.

Two years ago during the summer my boyfriend (who is beyond amazing in every way) and his friends wanted to go to the beach down the street. Now a big girl with confidence issues does not get excited about this! I literally felt my blood sugars go up from stress and I did not want to go. This would involve me being in a bathing suit, wet and in front of people in shape….needless to say WORST NIGHTMARE.

I decided to go since I also did not want to be home alone (which would make me feel worse). So I went…I sat on the beach with jeans, a black hoodie and tank, and running shoes (put in mind it was 30 degrees out!) I was hot, I felt fat and awful and everyone was having a great time in bikinis swimming. I luckily had sun glasses on because I started to cry.

Every time I feel like eating something like a whole cake or a bag of chips, I think of that day. I felt so left out, and awful! Yes everyone cheats once and awhile, but I refuse to ever feel like that again. So I hope you guys push yourself, like walking an extra 5 minutes, or eating popcorn instead of cake, etc etc.

I thought I would share ! Hopefully I keep inspiring you guys: :)”

Saying No.

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Saying No.

How can one word cause so much stress?

Is it the concern of being selfish? Is it the fear that we are not allowing ourselves the opportunity to have new experiences and challenges? Is it the fear of believing there is no one else that can do what you’ve been asked to do? Are we afraid to disappoint? Do we need to prove a point to ourselves or others? Are we afraid of conflict and burning bridges?

In this day and age the pressure we are living under to perform, accept, accomplish, respond to, access and be accountable for is too much, not just as adults but teens and young children are being subjected to this prematurely. Our private lives are jeopardized by the creation of global urbanization and technology with the expectation to keep up at all costs.

Yes is stress. But saying no is too. How do we find balance?

Take a look at how stress can influence our health:

1. Stress hormones raise blood sugars
2. Stress contributes to insulin resistance
3. Stress leads to weight gain
4. Stress can increase blood pressure
5. Stress can suppress the immune system
6. Stress can worsen or create allergies
7. Stress can increase the risk of heart attack and stroke
8. Stress can impair fertility
9. Stress can accelerate the aging process
10. Stress can create psychological imbalances such as anxiety and depression
11. Stress can cause or enhance addictive behaviours such as drugs, alcohol, sex, exercise etc.

Here are some guidelines to assist in determining when it is right to say “No’ and find or keep your balance.

1. When you have a bad feeling and your gut says “this doesn’t feel right”…trust it!!! Be true to yourself!
2. Thinking about saying “Yes” to the request causes you to feel overwhelmed before you have even committed to it.
3. Your principles, ethics and/or beliefs are in jeopardy.
4. The financial expense doesn’t fit your budget.
5. It is not fulfilling the goals and objectives you have set for yourself.

It’s OKAY to say “No”. Words and body language are our most powerful ally. How you respond will empower you and the person who has asked.

“Seek first to understand, then to be understood.” – Stephen Covey

Never Prepared

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Never Prepared

In all the years the kids were in primary and yes, even high school, I only missed one year of their first day of school. In my mind it was a given I would be there. I had to be there so I could take, what would become, the “First Day of School Picture”. It was very important to me and I felt for them, to be there to tell them to ‘have a good day, be safe, I love you’, giving them hugs and kisses before they got on the bus. The picture I took each year measured many things. Growth, happiness, anticipation, excitement, love, memories, health. I wanted to make sure the kids knew that school was a big deal. It was a positive place to be. Learning at school was as important as at home. This is a pic of Cayla, 9, and Kurtis, 7, in September 2000. Today I showed Kurtis the pic. He tells me he doesn’t like the picture, he thinks he looks like a geek. :p

In this photo, Kurtis is less than 2 months away from the day he was diagnosed with Type 1 diabetes.

Not knowing the ‘stats’, from the time my kids were born, I kept an eye on how much they drank, peed and gained weight. It didn’t occur to me to look up the ‘stats’ on being a Type 1 parent and the chances of ‘passing’ it on to my children until after Kurtis’ diagnosis. According to the American Diabetes Association, the stats read like this:

Both parents (neither have Type 1) have inherent risk factors that contribute to a child developing Type 1.

A child with a Dad living with Type 1 has 1 in 17 odds of developing Type 1.

A child with a Mom that had him/her before the age of 25 has a 1 in 25 chance of developing Type 1.

If Mom has her kids after the age of 25, the odds go up to 1 in 100.

A parent diagnosed with Type 1 before the age of 11 provides a risk of double that their child will develop it.

Regardless of the stats, in my gut I knew. I spoke with other parents who live with Type 1 diabetes that have the same worries as me. But is the effect of the diagnosis the same as a parent that has no idea until diagnosis that their child may develop it?

I try to put myself in my parents shoes as neither one of them have Type 1. Now mind you it was 1975, but hear me out. I am imagining myself as a parent living without Type 1 who has a child that is diagnosed with Type 1. The ‘radar’ saying “I will keep an eye out, just in case.” doesn’t exist. When that day comes. When my very sick child is before me and the Doctor tells me that he/she has Type 1, finally, because heaven knows in this modern-day of technology and knowledge it seems the awareness of signs and symptoms among many health care professionals still does not exist. I am told he/she will take injections of insulin to sustain them for the rest of their life. My mind would spin. I envision myself being whisked off to the hospital or clinic with my very sick child where I would be expected to take a crash course on how to keep my child from having lows so severe they could die and highs so high they become very sick with ketones with the risk of developing long-term complications, possibly dying from these complications. I would be expected to learn how to titrate a medication that is life saving but can cause death if not treated with respect. I have to learn how to poke my precious child with a sharp needle not once a day but several times. What are kids most fearful of? Pain. What do glucose tests and needles cause? Pain. What does a parent try to protect their child from at all costs? Pain.

I can’t tell you it was easier for me. If it was, it would be difficult to relate to the feelings of a parent not living with Type 1 prior to their child being diagnosed. I was ‘blessed’ to have more experience and knowledge. That’s all. At the end of the day, I am a parent first.

Kurtis’ ‘road’ to his diagnosis began 2 years earlier. He was 5, the same age when I was diagnosed. On one particular day he seemed to be drinking and peeing more than usual. I don’t know how, as he was my strong willed child, but I convinced him to poke his finger without much fuss. His blood sugar 2 hours after he ate his meal was 8.2 mmol/L (148 mg/dL). My jaw dropped. My stomach flipped. I called the Family Physicians office immediately. The receptionist told me to check his sugar after having him fast 12 hours. Now, I do have to say, this was not funny at the time but as a parent and now that I speak of it, it is. 16 hours later, I finally promised Kurtis I would take him to McDonald’s. I never took my kids to McDonald’s!! I was SO desperate & scared, I promised if he let me poke his finger I would buy him a McHappy Meal. He agreed. It is now 10am!! He must’ve been starving! Kurtis’ sugar was 4.8 mmol/L (86 mg/dl). I called the Physician’s office to report back. I wasn’t convinced that this made it all right. I had that gut feeling a parent gets when they “know” something isn’t right.

Fast forward to September and October 2000. From the time Kurtis was a baby he had a history of ear and sinus infections. He lived with one ear infection after another. From one sinus infection to another. He would finish one round of antibiotics and would be onto the next.

As usual, Kurtis had a healthy summer. On the first day of school, as pictured, he seemed great, looked healthy. Once exposed to the school environment of germs, sneezes and coughs, his health slowly declined to a point I knew he was going to be sick. Dark shadows under the eyes and very pale. I would keep him on a tight schedule of bedtime and keep him fed well with healthy, home cooked meals. It didn’t seem to matter.

But, this time was different. Kurtis had that ‘look’ I was familiar with. I was perplexed, he wasn’t getting sick. At that time, for his age group, track pants were the fad. He was always a big boy. Always in or over the 90th percentile in height and weight for his age. When he had a growth spurt he would get chunky and stretch up. Being 7 years of age, I didn’t weigh him often or become concerned if he thinned out a bit.

October 31, 2000. I had sent Kurtis to school with a plate full of treats for his classes Hallowe’en party. As well as making a point of being there in the morning to put them on the bus, I tried my best to be there to see them come home from school as well. As Cayla and Kurtis walked in the front door, I was excited for them. I looked forward to carving their pumpkins and get dressed up for our night out Trick or Treating. As I prepared and fed the kids their after school snack, in the conversation of asking how their day was, Kurtis’ informs me that he didn’t eat much at his Hallowe’en party because he felt sick to his tummy and peed and drank at the water fountain all day. I wanted to throw up. I knew. I didn’t even have to check him to know. But of course, I did.

After explaining to him my suspicions and what I needed to do to confirm, come hell or high water, Kurtis was not going let me check by finger poke. I did a dipstick of his urine. I wanted to cry. The test strip showed 4+ sugar. It was 4:30pm. I called the Family Physicians office again. In the background I could hear Kurtis crying “I hate diabetes” “I don’t want diabetes”. This time I knew it wasn’t going to be instructions to check his fasting. In my mind at that time, all I could think was, I GAVE my baby diabetes.

I believe my emotions with Kurtis’ diagnosis may be a bit different, but not much then parents who don’t have diabetes. In the end, I have come to terms with the fact, it doesn’t matter. It is what it is. BUT, with that being said, and why I write this post is that there are two things I learned that I want to pass onto you. Whether you are a parent that has ‘passed’ on Type 1 to your child or parents that carry those dreaded inherent genes that we know little about ….

1. I cried to my Mom many times about the fact I ‘gave’ Kurtis diabetes. I felt SO guilty!! Being the amazing Mom she is, do you know what she asked me? “So, if you were to chose whether you had Kurtis or he had diabetes, which would it be?” OH MY!! There is no choice! I would have him a thousand times over!!

2. A year later of Kurtis & I grieving (separately mind you, he never saw me grieve) he would sit on the couch trying to inject himself (he insisted) for a minimum of an hour morning and night. I would listen to him cry and wail about how much it hurt and he can’t do it and he hates diabetes …so painful to watch. I finally realized I was enabling him to be pitied for something he had no control over. I don’t believe in enabling people to be pitied. I then realized I needed to empower him. I told him he had no choice. I told him it sucked living with diabetes BUT he could do whatever he wanted to do! I asked him if he saw me wailing and crying over taking my needles? Did he see me feeling sorry for myself? I told him I would no longer tolerate pity. He could share his feelings but could not use his diabetes for pity.

Our human compassion binds us the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future. Nelson Mandela

Yesterday and Today

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Yesterday and Today

In 1975, I was diagnosed with Type 1 diabetes after months of my Mom telling our family doctor something was really wrong.

He insisted it was a cold & I would recover in time.

Finally, after several months of symptoms such as wetting the bed at night (after having been toilet trained for years), having to pee before we got to the end of the driveway for a walk, weight loss (my Mom says my ribs stuck out, she thought when she picked me up she would break them), extreme thirst & sitting on the toilet crying because it burned so bad when I peed, my Mom felt relieved as she thought she knew what was wrong…. I had a bladder infection.

After the refusal of our family Doctor to see me anymore and upon the firm insistence of my parents, I was finally seen by another Doctor. When they dipped my urine for an infection, instead, they found large amounts of ketones. I was rushed to the hospital. I was also diagnosed with Whooping Cough. I was hospitalized for 10 days. Back then my Mom couldn’t stay with me overnight. I still remember that stay. It was very traumatic. I missed my Mom so much. I hated when she left each night.

I was just weeks shy of my 6th Birthday & weighed a mere 31 lbs (14 kg). I was started on 1 injection in the morning of Lente & Toronto insulin. Both insulins were unpredictable. The needle length went into my muscle instead of my subcutaneous tissue making the unpredictability worse, but there was no one then who was aware that a 13mm needle was too long for anyone, big or small. My Mom tested my sugars by urine through a dipstick. The goal was to have a dipstick with Trace sugar & no ketones. I did not receive my first glucose meter until I was 11 based on the cost which was about $200.

Based on my diagnosis, experiences, changes & the management I have experienced throughout the years, I am thankful for so many things:

1. My parents were told I would never have children. Although at the time I announced my pregnancies there was a lot of worry, I successfully have had two pregnancies (although very challenging) & two beautiful children.

2. I am blessed to have no complications after 37 years, which is rare.

3. I am living in a time where the technology advances in managing diabetes are becoming available faster then we can acquire them but provides the opportunity to get access to & manage it better.

4. We seem to be closer to a technology that allows for less management on our part & the reliance on bio feedback mechanisms that will reliably do most of the work for us.

5. Pharmaceutical companies that create, manufacture & produce insulin, such as Novo Nordisk Inc., are creating programs which offer easier access to children living with Type 1 diabetes living in developing countries that otherwise would not have it and risk dying due to affordability & access. Much still needs to be done about this (one of my passions) but the movement by corporate has started to fill this huge gap.

6. The choices and dissemination of media communication and access is the forum for supporting curiosity, access, acquisition of knowledge and action with regards to living with diabetes. This is essential to empower people living with such a complex disease.

7. I have been blessed to be part of a network with many gifts, experiences & an education that enables me to practically & clinically share with each of you, no matter where you live, what is needed to live with Diabetes Beyond Borders.