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

Reassurances

I am dedicating this to my friend Dee who has concerns that she will develop the mindset of an ‘old Diabetic’.  This mindset consists of being scared to death that having short-term high blood sugars will cause amputation, heart disease, kidney disease and stroke.

As a result of these fears, in the past many ‘old Diabetics’ learned to avoid high blood sugars, purposely running very tight sugars on old insulin such as Lente®, Humulin® L, NPH, Humulin® N, Toronto® and Humulin® R.  As a result the experiences of multiple moderate to severe low blood sugars occurred daily and weekly.  ‘Old Diabetics’ were not taught the mindset that a severe low could kill them or cause damage as well.  I know this all to well because I am one of ‘those’ ‘old Diabetics’.  Sadly, today many still live life like this despite the new technologies and choices we have to manage our diabetes.

I am not supporting anything more than the targets set for you or the A1C you need to achieve to attain a healthy life, but I do believe achieving these go beyond numbers and are associated with the mindset of getting there.

Whether you are an ‘old Diabetic’ or not, being diagnosed and living with diabetes can be empowering AND daunting.  You change your lifestyle to live healthier, a big bonus!  After feeling good about your accomplishments you suddenly experience a setback.  So frustrating!

Do you recall this picture?  Do you see an old hag or a young woman?  Can you change your perception of what you initially see?  It is so hard!

Old hag or young woman

 

It is the same with our diabetes.  What do we see when we look at our lives with diabetes?  How do we change our perception?

Reassurances

Is this picture of a lane a challenge that may be snowy and slippery leading to the unknown, possibly a struggle to walk back up, heart beating fast, muscles burning?  Oh the worry over what could be a beautiful journey if the perception is changed.  Or do you see the pleasure of an enjoyable walk with relaxing views including a beautiful winter blue sky in the horizon?  Do you see it?

How can I reassure you that you can manage your diabetes and avoid the things you fear?  Honestly, I can’t.

What I can reassure you is; YOU are not bad.  You are you as a person first who lives with a chronic disease called diabetes.  Don’t connect the two as to who you are and your accomplishments as a person.

You are not your sugars.  You are not your diabetes.  When I hear the statement “I’ve been bad.”, the next words out of my mouth are; “Hey, do you have diabetes???”.  We both laugh and I say, “That’s why you have high and low blood sugars!, HEY, You have diabetes!!”

So how can I reassure you?  I have changed my view of being an ‘old Diabetic’.

I see the picture differently now.  Do you know why?  Living with diabetes isn’t just about me.  What I understand now is that if I choose to not ‘play the game’.  If I choose to not adhere to the rules, if I choose to keep my perspective as an ‘old Diabetic’ and not learn a new perspective, I am not the only one I am hurting.

Who saves me or helps when I decide to run too tight and too low?  Who is SO scared that they may lose me because I was afraid of a short term high or got crazy keeping my sugars too tight?  It’s not me!

Reassurances

ReassurancesI have given my heart and soul raising my 2 beautiful children into young adulthood, I want to continue doing that.  In particular to my son Kurtis as he begins his life living with diabetes independently.

I want to live life. I want grow old with Steve and be able to fully enjoy our journey together.  I don’t him to worry about me.  He has to deal with my choices I make with my diabetes now and in the future.

 

So, with this, these are my reassurances to you:

You can live with diabetes.

You will change your perspective each day on how that will happen.

Through trial and error you will find your groove.

Do not fear the unknown.  Work with what you have today and change your game plan and perspective as need be.  BUT stick to the rules.

You are not bad no matter what the numbers say, the only change you need to make when you see them is to make it better, for your sake and for those you love.

The Stealth Fighter of Diabetes

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The Stealth Fighter of Diabetes

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

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

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

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

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

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

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

 

Pain: Motivator or Deterrent?

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Pain: Motivator or Deterrent?

We read this sign as we entered S-21, the prison where Pol-Pot & the Khmer Rouge imprisoned, tortured and killed about 1 – 3 million Cambodians, approximately 25% of the total population.

As I read the “Regulations” I try to imagine what would go through my mind if I were a prisoner. I see pictures of what they endured. I ask myself, would these rules motivate me to do what they say, not because I feared the punishment, but with the hope of living and someday escaping? Or would it deter me from abiding by these rules because I felt hopeless and defeated, feeling like I wouldn’t succeed anyway?

Although it may not seem to be life and death, there are many events that occur in our daily lives that should be considered in a similar fashion.

No, it doesn’t appear that we are in a situation where we will experience terrible electric shocks or hang by our hands with our arms behind our backs until we pass out. These things are inhumane and disturbing at best.

BUT, what will the end result be in trying to ignore the things in our life that should be a priority? It certainly is not as acute or terrifying as what the Cambodians experienced but keeping that top of mind we have to decide what motivates us and what deters us if we know the ultimate price may be painful.

Would you read the “Regulations”, whatever those may be in your life and agree that your motivation to stay within those boundaries are worth living a full, satisfying, healthy life? Or are you deterred by the outcomes you have experienced so far and feel hopeless and defeated?

I want to encourage you that no matter where you are in your diabetes management or that of the one you love, there is always a reason to stay motivated. Move past the pain and look forward to what you want in life.

I urge you to start day dreaming. If you need to step away from your situation to do this, go for a walk, sit in a park, go to the library or book store. Visualize the final outcome. Take a piece of paper and write a letter to yourself like you would another person you care very much about. Explain to yourself the pain you are experiencing, the struggles you are feeling. In detail, describe what you want for yourself. List the steps on how you are going to get there and the length of time, short and long term. When you are going to get there? Take an envelope with a stamp and address it to yourself. Drop it in the mailbox. In a few days when you get it, read it, store it somewhere safe where you can pull it out and refer to it and act on it.

I met a man at the S-21 Prison in Cambodia, one of the last survivors. He wrote a book about his experience. I sat down beside this man and wondered how he could be so strong after enduring so much. Here he was, an old man, smiling, sitting in the same place that caused him so much pain. In his hand was the book he wrote. I imagine how difficult it must’ve been for him to write it. Recalling not just the pain he endured, but hearing people screaming and begging for mercy as they too were tortured and killed. Why would he want to write a book, sit at the place that he should never want to see again? Even in his old age it was apparent to me that the pain he endured did not deter him from the motivation to live life and be heard.

How do you want to live your life and what do you want to say? What will motivate you through those moments of pain?

Link

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.

As Exciting As the Discovery of Insulin!

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As Exciting As the Discovery of Insulin!

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

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

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

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

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

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

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

Clinical findings & significance:

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

What is Intensive Management?

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

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

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