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.

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

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?

All I Ever Wanted – My First of Two

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All I Ever Wanted -  My First of Two

Pictured is days after Cayla was born on June 18,1991. She looks abnormally fat, doesn’t she? She is in the Newborn Critical Care Unit. That is the look of a Macrosomic baby. She was SO sick. I was very sick as well, but not related to diabetes.

In 1990 when I found out I was pregnant with Cayla, I lived with diabetes for 15 years.

At that time I found out I was pregnant I was in my 3rd year of Nursing in College. I was only in College because my Mom told me I should get a post-secondary education “just in case”. She told me that as a woman it’s always good to have an education for when I ever needed it. I didn’t see the point at the time & so much so I was initially kicked out of my 1st year of Nursing. I cared so little about having a post secondary education. I was in love & I just wanted to get married & have a family. That’s all I cared. Before re-starting back into the last half of my 1st year, I married. That helped me re-focus on achieving the education I ‘should’ have.

In the second year of Nursing I did a rotation in the Labour & Delivery floor. Ultimately I helped with several deliveries. I ached for a baby. I wanted to be a Mom SO bad.

At that point, I had 2 goals.

1. Finish my Nursing with honours. My goal was a result of being ‘told’ I couldn’t do something. That wasn’t true, but I saw it that way. I saw it as “they kicked me out, I’ll show ‘them'” I would finish it & with pizzaz.

2. Get pregnant.

Anyone who knows me understands that when Tracy wants something, Tracy will do all the right things & take all the roads needed to achieve it. It takes some painful learning, but I get there in time.

What resulted?

1. Tracy became pregnant 2 months into the 3rd year of Nursing.

When my classmates told me it would be near impossible to finish my year out (my due date was the 1st week of July) or ask me how was I going to do it with diabetes….it made me dig in my heels deeper. I would do it all!! I would graduate from Nursing with Honours, have my baby, write my Nursing exams, become a R.N. & be the best Mom ever.

The Diabetes Complications & Control Trial had yet to begin. There were no guidelines for pregnancy. I had not seen a Diabetes Specialist in years. Thankfully I went to my Family Physician within 6 weeks of suspecting I was pregnant. Back then, the home tests to decide pregnancy were not reliant so early. By blood test, the physician confirmed I was. He immediately referred me to an Internal Medicine Physician who specialized in diabetes. It was not an easy pregnancy.

The variables:

1. My long-acting insulin therapy consisted of NPH morning & supper (today all nighttime insulin is injected at bedtime to avoid missing the coverage of the Dawn Phenomenon causing sometimes severe low blood sugars in the hours shortly after midnight).

2. My short-acting insulin therapy consisted of regular insulin, once at breakfast, once at supper. Humalog had not been launched yet. I knew by how sleepy I was after meals that the regular insulin was not covering my needs. Sometimes, I would take very small doses of regular at lunch to see if it would help. I look back & see how incredible it was that I knew if I could coordinate my meal insulin to my meal sugars I would feel better. Unfortunately, it just resulted in severe lows as it stacked throughout the day.

3. I began my Clinical Consolidation shortly after I became pregnant. I worked 40 hours/week on shift in the hospital. As well, on the weekends I wasn’t on shift at the hospital, I was working as a cashier at a grocery store to help pay the bills. Weekly hours I put in between consolidation & work until I was hospitalized at 32 weeks was in excess of 45-50 hours, not including assignments & studying.

I remember the wild swings in blood sugars. I remember panicking every time the meter I used since I was 11 showed a high or low. I knew it would hurt my baby. Even then hypoglycemia protocol was not in place. If was low, I panicked as I always did. I would drink juice & then eat & eat. What resulted was a high so high I had to take regular insulin to correct in fear I would hurt my baby. As time progressed with the pregnancy, I learned how to manage certain issues. A low treatment was a couple of mouthfuls of milk. That seemed to keep my sugars more stable then before. I decreased the amount of carbs I ate. This eliminated the wild swings.

Unfortunately, it was too late, it did not save my first-born from the complications of a poorly controlled pregnancy.

1. As soon as Cayla was born, her blood sugar was tested.  She went from 11 mmol/L (198 mg/dl) to 2 mmol/L (40 mg/dl) in a matter of minutes.

2. Throughout my illness in the hospital, not related to my diabetes, I gained 45 lbs of fluid. Cayla gained fluid as well. Upon birth she weighed 9 pounds 11 ounces because of this. When they tried to insert an IV to bring he sugar up, they had difficulties getting a vein.

3. She was very, very ill with jaundice. Not only was she placed under lights, but her body was wrapped in a specialize blanket that emitted extra phototherapy. My baby was SO yellow. They poked her little heel with a razor blade too many times. I cried as she shook & screamed when they did it. My saving grace was I saw she had spunk!!

What I describe are the behaviours & control that lead to what Cayla was born with…Macrosomia. She & I were so fortunate, she did not have any respiratory problems. She was only in CCU for 1 week. Each day they told me I couldn’t have her in my room (I was too sick to go home too) I cried. I just wanted to be a Mom.

I took mental notes of my experience with my pregnancy with Cayla. I used them to my advantage with Kurtis.

Look for my post tomorrow on my pregnancy & birth of Kurtis.

Cravings

Want tips & tricks on eating well & losing weight? Here is Eden’s next Blog about her Journey. Eden is a busy woman!! She lives with Type 1, at the end of her years in University, about to graduate in May and working hard to lose weight & exercise so she is looking good for her height for graduation.

Help me support Eden in her goals as she moves closer to her goals!! Cheers, Tracy

“Hey Everyone!
Sorry my blogs have been so spaced out! Last week of classes so my blogs will be every other day lol Lots going on! So I thought I would share some of my favorite snacks that I tend to have during the evening. Sometimes in the evening is when I feel like eating the contents of my fridge ha ha! Before I started caring about my weight, I would typically not think twice about eating chips, cookies, 2 granola bars (sometimes more) and god knows what else! So it is hard to not want to eat at night, and I know if I don’t I will be hungry and probably have low blood sugars. So these are some of the things I now LOVE
1. One thing I always have is a drink of water, and a HUGE chai tea with one Truvia (or 2 splenda) and my almond milk. Almond milk takes a month or so to really get used to in beverages, but there is NO SUGAR and VERY LOW FAT! I LOVE IT!
2. Another thing I love having is almonds. I usually buy Blue Diamond Lime and Chili almonds, these are salted, but I only allow myself 11 at night if I choose this. If I choose this, I usually have 1 cup (usually 6) strawberries or a small apple with cinnamon baked for 1 minute in the microwave.
3. My Cheat Night Snacks: Ok so everyone has these, and if you were to tell me I would never have another chip or cookie again, I would die! So I figured out different ways to have things I love, but that are healthier for me. So tonight (for example) I had Special K cracker chips (they have sour cream and BBQ flavors) 18 cracker/chips are 80 calories, 1.5 grams of fat and 14 carbs! Compared to regular chips which are ten times the amount of fat and calories!
For cookies, I make my own which take 20 minutes MAX! I usually put in a bowl 1 cup of oatmeal, ½ cup of egg whites, 1 or 2 splenda, and I use half a scoop of chocolate protein powder (I think cocoa would be fine) I mix it all up and bake them in the oven for 10 minutes at 400 (depending on your oven, keep an eye on them!) I also like adding some natural peanut butter on top for some extra flavor. If you mix it up, and it seems dry add some more egg whites and some water 
Hopefully you like some of my ideas! I always have a chai tea because of its health benefits and it makes you feel full ”

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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.

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.

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.

For most diagno…

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For most diagnoses all that is needed is an ounce of knowledge, an ounce of intelligence, and a pound of thoroughness. – Anonymous

In January, for the second time in two months I arrive in the Emergency Department.  

I have to be in pretty rough shape to go there.  I can count on one hand how often I have gone for myself.  Having worked in the ER, I have seen people’s definition of what an emergency is.   I don’t want to be one of those people.  But, here I am doubled over in pain again.  Just before heading out the door, I stand with my hands shaking, heart pounding, crying…Googling my symptoms one more time, trying to find a diagnosis that I can fix so I don’t have to go.  Then I think to myself…what if I am dying of something and they can treat it?  That would be really stupid!

So off I go.  The Triage Nurse asks what’s happening.  I tell her.  She takes my history.  Takes my blood pressure.  WHOA!!  I guess I am in pain….155/100.  Ok, I feel a little more justified in being there.  They take me right in.  Ok, I’m feeling even more justified.  

The ER Doctor comes into assess me and has already looked up my health history from the past 10 years! That’s a first!!  I describe to him what I have and am presently experiencing.  I tell him my thoughts about it.  I tell him the tests I have had.  He urgently orders a shot of pain medication in my hip.  The nurse comes in and tells me that it will sting a bit as it is going in.  As she injects it, I comment to her that it doesn’t really hurt.  THEN, she pulls the needle out and man, oh, man…talk about a delayed reaction!!  The burn!  But, if it was going to take the pain away, the burn was the least of my discomfort.

The thorough assessment by the Doc gave me some reassurance that this time there would be a diagnosis.  Although I had an Ultrasound and a CT Scan from my earlier ER visit, which showed nothing, the Dr insists I should have another CT Scan.  In my mind, I am thinking MRI! MRI!  But I figure I will humour him.  

Finally the pain med begins to take the edge off.  During the Ultrasound, the Tech is taking the probe across one spot in particular, over and over.  Let me tell you, that was fun…NOT!  A necessary evil.  Finally, she asks if I have a had a different type of Ultrasound.  I have not and feel a sense of relief that she is deciding to do this.  Afterwards, she informs me the ER Dr will talk with us about the results when we go back to Emerg.  She sends us on our way.

Back in the ER, it takes the Dr a bit of time before he comes to speak with us.  I am terrified. Is it, he still doesn’t know or something very serious?

He tells us he has spoken with a Specialist and tells me I have a condition called Adenomyosis.  OK!  I have an answer.  I have a condition.  BUT, what is it, I ask.  He says he doesn’t know, he has never heard of it.  Huh?!?  So is it treatable?  Is it something I have to live with the rest of my life, because pain and diabetes management don’t go well together.  Is it terminal?  He tells us the Specialist wants to see me in a week to discuss treatment options.  In the meantime, he sends me home on Tylenol #3’s and prescription NSAID’s.

I whip out my phone and go to Google.  I guess the Dr doesn’t have Google or a Medical Dictionary at the hospital (insert sarcasm).

After reading about it, a wave of relief washes over me.  I know what the discussion will be with the Specialist now!  It is treatable.  I will need major surgery.  I am excited.  Really, I am!

After researching more, I realize the many issues I am having with my body the past many years, I now know are directly linked to this one condition.  The surgery will fix these things!  

In less then a month I am looking forward to beginning the recovery process.  In the meantime, I have focused on eating well, taking my vitamins and supplements, keeping my blood sugars tight, getting enough sleep and walking.  Ideally, I would like to exercise more intensely to strengthen my muscles but I am not well enough for that.  I remind myself in a few months I will be able to.   I have been reassured by a few friends who have had the surgery that I will wake up one day on week six of the recovery and realize how great I feel, how rough I’ve felt these years.  The countdown is on.

I am looking forward to my new life.