Advocating - Where to start?

My type 1 diabetic daughter recently had a clinic appointment. This appointment consists of a half hour visit with a nurse, dietitian and a paediatrician, respectively. 

I've struggled with this clinic for over a year now, for several reasons. 

First, I have to call them to be seen and there are often very long stretches between appointments. This allows for frustration and higher A1C's because there isn't consistent professional support. The clinic we came from booked us every three months, without my having to chase them.  You also knew when your next appointment was two and a half months in advance. It was great to be able to plan so far in advance. 

The next problem I have with our current clinic is lack of professionalism and knowledge. The nurse we have seen the last few times has asked the most ridiculous questions, leaving me to question -- and trust -- her knowledge of this tricky disease. I'll give you an example of her most recent faux pas:  six months ago, we were struggling with low blood sugars. Changes were recommended (that didn't work and I was left with no support to figure it out). Anyway, she asked me how many changes we made to my daughter's basal (background) insulin rates. Wow. I was flabbergasted. Anyone who deals with this disease knows multiple changes to this rate were made in the last six months. This blatant lack of knowledge certainly does not garner a trusting relationship. 

While we see a paediatrician for these appointments, they don't specialize in endocrinology. The clinic we came from had three. Not only did they specialize, they were also part of a research team for type 1 diabetes. The knowledge base and experience was incredible. If they recommended a change, it worked. 

Our current dietitian is quite helpful, but she's filling a maternity leave. The permanent dietitian is not helpful nor does she seem particularly knowledgeable when questioned. 

Needless to say, we both leave the clinic frustrated, angry and thoroughly disgusted. 

So where does advocacy come into play?  I'd like to see this clinic re-vamped with a paediatric endocrinologist, knowledgeable nurse(s), with one specializing in insulin pumps, and keep the helpful dietitian. I'd like my daughter to be seen every three months and not have to chase anyone for an appointment.  It would be great to be able to call someone -- if only for a second set of eyes -- and have them understand the readings and recommend changes that work. 

We are a growing city that services a large portion of northern Alberta. Our children deserve to have better care -- without having to travel four hours, or more. Many people from our area choose to travel this distance because it is a better clinic. 

But, where to start?  Who are the powers that be who can help see these changes are made?  Is it AHS (Alberta Health Services)?  Who in AHS would I need to speak with?  Or is it someone higher? A provincial health minister? Or maybe the federal health minister?  Maybe it's as simple as contacting someone with the Canadian Diabetes Assiciation?  Anyone out there know?  

I don't know where to start. But I'd sure love to see these changes happen. 

Not Strong; Just Stubborn

One thing I've heard a lot over the years is how strong I am, especially the last three years. I've come to the conclusion inner strength is disguised as pure stubbornness. Now I'll tell you why.

There've been many incidents over the years where people have admired my strength, but none quite so much as when I describe the surface life as the mom of a child with Type 1 Diabetes.  Details are pointless, unless you also have walked a mile in these shoes. 

Tired doesn't describe D-parents. Exhaustion does. Unmitigated, complete exhaustion. Until you feel like you have no soul, nothing to give. Take the last two weeks, for example. There's not been one night where I've gotten a full night's sleep. Highs, lows but nothing in the happy zone.  No numbers I'm willing to sleep through without at least one check. Make adjustments; more highs and lows. I get up every morning, get the kids ready, drop them at school, go to work for six hours and come home to start the afternoon and evening routine. Strength or pure stubbornness?

Stubborn. Why? Only pure determination can keep you doing what needs to be done when you are beyond tired. 

Most of what I know about T1, I've researched myself or learned from other D-parents. The so-called professionals I work with where we live are basically useless to me. When I ask for help, the common response is:  sounds right. Ooookay. Do you have suggestions of changes I should make to smooth out the bumps we are having? Well, you could try this or that and see what works.  Would've never guessed that. Which change should I choose? Please. Give me a little support. So I keep finding new resources, new books to read and learn from others who've been there. Teaching my daughter how to care for herself, without causing long-term side effects is a huge part of a D-mom. Constant sense of failure when her A1C is not in range, even though you worked your tail off. Strength or stubborn?

Stubborn. Again, you gotta keep moving forward. 

Many people are under the impression I'm calm, smart, strong. No one realizes I'm none of those things. I'm just like you. I just don't verbalize my angst because it solidifies the ugliness. No. I'm merely stubborn. 

It's what gets me through. Gets me up in the morning; sometimes with a smile, sometimes not. Keeps me looking after my beautiful girls and husband. Keeps me from "losing it", although I do melt down occasionally for a day or two, pick myself up, dust myself off and keep moving. 

Inner strength is just a nice way of saying you are stubborn as hell. 

Anti-Bullying Awareness Day

A friend of mine made a thought-provoking status wondering how wearing pink prevents bullying.  There were many comments under his status of kids who have been bullied.

Bottom-line?  A colour changes nothing. All it brings is awareness to a growing societal issue.  Unfortunately, I believe we've taken away our children's right to defend themselves with the zero tolerance for physical violence.  The child being bullied gets suspended right alongside the bully if there is a physical altercation.  This is wrong.  There should be no consequences for defending yourself.  Particularly if the school has been made aware of the situation. 

My youngest daughter had an issue in grade 6 that progressed from innocent disagreements to a nasty, little bully hitting the brick wall of this mom, but  later attempted many underhanded ways to get even.

It began with the odd jealous text when my daughter would be hanging out with other friends.  This girl lived in a different neighbourhood and couldn't simply walk over to play.  Finally, after several such texts, each one nastier, my daughter reacted by telling her to quit being a jerk.  That's it.  The truthful comment that started it all.  My daughter ignored her texts for the rest of the day.  Proper thing.

The following morning, this kid begins to "spam" text my girl.  She started with an apology but when Darian didn't reply, she went back to the jealous texts.  Darian brought her phone to me.  I identified myself, asking her to stop.  This child had the gumption -- if not the brains -- to continue her dialogue with me.  I refused to respond and called her mother to request that her child knock it off.  While the child no longer texted my girl, this is not where the story ends.

She continued at school by attempting to draw other kids into her hatred towards my daughter, until her mother accosted me in the hallway after school saying her child was coming home in tears because mine was being mean.  All right.  I told her I'd investigate.  Meanwhile, both of our girls came over to wait for the conversation to finish.  This girl got upset with me, saying she was sorry and didn't understand why Darian no longer wanted to be friends.  Really???

This is a little pearl of wisdom all parents should pass on to their children, and I passed it on to this young lady that day:  Saying you are sorry doesn't erase the hurtful things you have done.  Your actions will.  And your actions have not changed.  It was at this point, her mother hung her head and the conversation ended.

After that, I did my research.  I spoke to kids, teachers and the vice-principal.  NONE of them had seen -- or heard -- anything my child had supposedly done or said.  The next time she lashed out at my child at school, it was dealt with on a higher level until she quit attempting to get at Darian directly.  However, there were a couple other girls who attempted similar stunts because of the original altercation, and they were shut down without involving the school, parent-to-parent.

You know the truly sad part of this story?  This young lady continues these antics with other kids, while her parents sit idly by, assuming it is the other child's fault.  They are completely unwilling to acknowledge their daughter has issues.  They are unwilling to give her discipline.  Ultimately, this girl is the one who will be hurt.  She will become a mean-spirited adult who thinks she can do exactly as she pleases.  That hurting others is okay as long as she gets what she wants.

Bullying begins at home with a lack of consequences and parental awareness.

Parents, please involve yourself with your kids.  Know what's going on.  Sit and watch them in their group when they are unaware of your presence.  Don't assume your child is an angel.  Be aware of their faults, strengths and weaknesses.  

Sometimes kids DO need to solve their own issues.  But don't let them try to handle these types of situations alone with only a school system for back up. After all, schools have limited disciplinary measures.  Don't be afraid to jump in feet first and deal with it parent-to-parent before your child is driven to desperate measures.  Better a little confrontation than a tragedy. 

The Love of Hockey

In Canada, there is one single sport drawing nearly all of us with its brilliant flame -- hockey.  Some of us don't follow it religiously.  Many do.  Some merely follow the NHL play-off games.  Some only pay attention to Olympic hockey.  Any way you look at it, Canadians love their hockey and will get involved on some level to cheer for our players.

The recent Olympic Games are a perfect example of that.  The games we relish the most are against the United States of America -- there were over a million of us watching the Canadian vs. USA games on Thursday and Friday.  At work.  In malls.  In bars.  Home.  Wherever we could get the game.  There's a couple reasons for this intense rivalry.

First and foremost:  it's our game.  The first organized game was played in Montreal in the late 19th century.  We've owned this game for many years -- until USA figured out how to maintain ice in their warmer States and realized it was a multi-million dollar adventure.

Second:  USA is like the oldest sibling who is used to winning.  Used to receiving more accolades.  Used to looking down their noses at the rest of the siblings because they are bigger and stronger.

Third:  Canada is like the youngest sibling, if you will.  We are the nice, little pain in the ass.  The jokester.  The fun country who willingly helps others without causing war and strife -- and for this we are often lauded as a very pleasant people.  In fact, other countries often remark on the fact Canadians are too nice.  My reply has always been they have not pissed us off yet.  We don't fight unless we can back it up, then we will quietly kick your ass -- with a smile.  Yet another tribute to us.  We do just about everything with a smile.  After all, life was meant to be enjoyed.

The other part of hockey we love, is the after-game ribbing.  We good-naturedly tease and torment one another with some vicious slams.  There are crying towels to be "thrown" at our opposition.  There's better luck next time because we know -- at some point -- our favorite team is going to triumph over yours.  We enjoy our verbal tormenting of one another -- win or lose.  We've got the comments worked out in our heads already -- win or lose.  Why?   It's all a part of hockey culture.  Our game.

Unfortunately, Americans take our game far too seriously.  They don't have fun with it -- it's only about the win.  Which is why they hit the brick wall of Canada's hockey team, even though most of their best players are trained here, on Canadian soil, by Canadian coaches.

Both games were absolutely amazing -- particularly the women's.  USA was kicking our asses -- until the last few minutes of the third period where we miraculously tied it up and stole it out from under them in over time.  The US goalie threw her stick off to the side.  You won't see Canadians pull this kind of poor-sport antic.  We may be pissed that we lost, but we will smile and say "good game".  There was also the alleged incident in the 2002 Olympics where the US women were said to have thrown our flag on the locker room floor and stomped on it.  Our reply was "would you like us to sign it for you?"

Humor is Canada's crowning character.

After this amazing game between the women, the men were up to play against USA.  It was a running joke on social media the men needed to play like girls.  And play like the girls, they did.  They held a 1-0 lead for most of the game.  It was a beautiful game.  No matter which side of the border you sit on.

This is where the difference between Canadians and Americans becomes crystal clear.  Canadians were still having fun with this -- in true Canadian style.  We threw insults out there such as:  how do you make an American cry?  Canadians win.  Again!!  And, USA got their heavy metal colours mixed up; forgot which colour was the best one.  Among so many others it's impossible to count.

Unfortunately, Americans sulk when they lose.  They say nothing.  Absolutely nothing.  There were no good-natured rants that came our way.  No replies to any of our ribbing.  No smart-mouth comments.  No "we'll get you next time".  Not even a "good game".  Nothing.  Only silent pouting...  No doubt, their social media is full of insults -- but they don't have the balls to direct them at any Canadians.  Why?  They know we are full of good-natured slams.  They know we taught them this game.  They know it belongs to us.  They know we will win the verbal assault -- just like we did the Olympic hockey game.

To which I say:  that's the game; suck it up, Princess!

Because, after all, it is just a game.  It's not a war that MUST be won.  (By the way, in the war of 1812, Canadians kicked American ass back to the White House and burned it.)

These were two spectacular games with nothing to be ashamed of.  Canadians never forget this.  It's still fun -- win or lose.  That's what games are meant to be.  It's something USA citizens need to learn...

So the next time Canadians kick your asses, don't pout.  Don't go silent.  Step into the circle, face off and learn how to have fun.

"Drop-In" Clinic???

This week, I took my fourteen year old daughter to a "drop-in" clinic because she was suffering from a sinus infection.  Our family doctor is away for several more days so I was unable to take my girl there.

Anyway, we get to the "drop-in" clinic around 3:30, which isn't really late in the day.  The first question we were asked was "do you have an appointment?"  Well, hmm.  Nope.  I was under the impression this is a drop-in clinic.  They claim to be.  They just book appointments and have a cut-off time for accepting more drop-in patients.

In my mind, you are not a "drop-in" clinic if you book appointments.  Appointments defeat the purpose.  If you were actually wondering if we had already checked in, then word your question differently so there's no confusion, frustration or annoyance. I also understand you must have a "cut-off" time for accepting patients or the clinic would be open twenty-four hours.

They directed me to a new drop-in clinic that is only open from 5 p.m. until 9 p.m.  It was approximately an hour till they opened, so my daughter and I cruised by the location.  They had one enormous sign on an office building with multiple offices.  Not ONE sign on the door we needed to go in when the time arrived.  Really???  Are we just supposed to pick one and hope for the best?

Now, I'm beyond annoyed.  I'm just plain ol' pissed.  This is why I rarely do the "right" thing of going to a drop-in clinic and head straight to the emergency room.  We wasted forty-five minutes when we could have been waiting at the hospital.  Forty-five minutes off the over-all treatment time.  Forty-five minutes with no frustration, annoyances or anger.  Forty-five minutes neither of us will ever get back.

We were in the emergency room for approximately two hours.  Start to finish.  They have a "fast-track" area that speeds simple cases through.  The emergency room did a great job.  Thank you.

To all the rest of you so-called "drop-in" clinics:

#1:  Don't advertise yourself as a drop-in clinic if an appointment needs to be booked.

#2:  Put your damned sign on the door so people can find you.

Crazy World

Crazy world?  Just a little. 

Our society has become all about gossip and cruelty.  All you gotta do is hop on the internet to find the latest bit of nastiness about your favorite -- or not so favorite -- celebrity.  You can see updates of your friends -- or not so good friends -- at the click of a button.  Then, you can sit and judge every last single one of them, favorably -- or not.

This morning's topic?  Justin Bieber.  First, there's the petition in at the White House to have him "kicked out" of the U.S. because of his latest stunt.  Personally, they'd be silly to boot him out.  I'm sure he pays several million in taxes each year.

The media -- and every comedian out there -- is having a field day with this.  From photo-shopped pictures making him look like Miley's twin; to smart-ass remarks about making the States keep him 'cause they broke him.  Now, don't get me wrong -- a few of these made me laugh.  I'm not immune to ridiculous comments when they tickle the funny bone.

A local radio station put a question out for a vote to ban his music from it.  Not really that cool.  Why?  Many reasons, but I'll just make three.

#1 -- He's a kid.  Can you honestly sit and look at yourself in the mirror and claim to have done nothing stupid?  EVER???  We've all done stupid stuff, particularly at that age.  Most of us won't admit to it.  However, NONE of us were under the microscope of the paparazzi and media frenzy this kid is.

#2 -- Censorship is a bad thing.  By banning his music, isn't that essentially what we are doing?  We aren't a communist country, last time I looked.  So what difference does it make if we play his music?  Oh, yeah.  None.  We don't have to like him or what he does.  Let's face it.  For every music artist out there who has been a total screw up, we'd have to ban an awful lot of music.  Right back to Elvis Presley.

#3 -- The media constantly gives him free advertising by focusing on his downfalls -- he's probably not even as bad as they make him out to be.  People buy more music.  His name is in the fore-front so no one can forget.  Excellent marketing tactic, I say.

Society has such a cut-throat, judgemental attitude these days, amplified by all social medias.  People feed off of controversy.  If his behaviour "offends" you, then get off the media train.  Ignore it, but for god's sakes, don't feed it if you are against it.

Educate Yourself

Most people know my youngest daughter has Type 1 Diabetes.  Our third anniversary of dealing with this disease is coming up at the end of this month.  Normally, I'm not an over-the-top, in-yo'-face sort of mom.  Especially now that my daughter is at an age where she is more and more capable of caring for herself and her chronic disease.

However, I read a few comments recently from a man named Roger Bezanis who is practicing a paleo diet and scientology.  His comments were spectacularly rude, suggesting Type 1 Diabetes is a figment of the entire medical community's imagination.  That parents were completely gullible and brainwashed; therefore, allowing the medical community to treat, rather than "cure" this chronic disease.  He also claimed that a "de-tox and eating clean food" would cure Type 1.  Normally, I don't allow ridiculous statements such as these to bother me, but the blatant ignorance of his statements led me to believe he needs some serious education as to what this disease actually is.

For those of you who don't know what Type 1 Diabetes is, it's an auto-immune disease that causes your body to kill the cells in the pancreas that produce insulin.  Meaning, without insulin therapy, these people will die because their bodies CANNOT produce insulin.  The sugar gets "stuck" in the blood stream, if you will, without insulin to help it exit the blood stream.

Using a "detoxification" process will not cure my daughter.  The cells that produce insulin are no longer there.  I seriously doubt detoxifying her body will allow those cells to miraculously regenerate.  A "clean diet" won't cure her either.  Even with a "clean diet", there are a certain number of carbohydrates consumed, which your body will turn to glucose (sugar).  Without insulin, glucose will not enter her blood stream essentially starving her while her blood sugar climbs, causing a very serious condition called diabetic-ketoacidosis.  Diabetic-ketoacidosis is a condition where the body begins to break down fat for food.  It causes vomiting, dehydration, odd breathing and finally coma.

It is in this state my daughter was diagnosed.  She didn't have the common "call signs" of diabetes -- excessive thirst and urinating and/or weight loss.  Nope.  The evening before she was diagnosed she chugged two litres of apple juice, claiming to still be dying of thirst.  The following morning, she was throwing up.  As she was nine at the time, I chalked it up to a stomach flu.  By late afternoon, I realized it wasn't your run-of-the-mill flu.  She had literally shrunk before my very eyes -- by approximately ten pounds.  Yes.  Ten pounds.  The dehydration had become so severe, she looked like an eighty-year old woman.  Her eyes were black and sunken into the sockets.  Nothing -- I repeat, nothing -- stayed down.  Not water.  Not gingerale.  Nothing.

At the emergency department, I carried my child in, holding her because she was unable to stand on her own.  There was a woman in front of us, crying as she spoke to the triage nurse.  She was a new mom of a two-month-old baby and suspected she was suffering from post-partum depression.  To my everlasting shame, I remember thinking "Suck it up, Princess.  My baby is really sick and needs help."  In fact, only moments later, I pushed my way through the double doors into the emergency room, explaining my daughter's symptoms as we entered.  Three doctors and multiple nurses grabbed her and took her to a stretcher at the end.  By the time my oldest daughter and I reached her stretcher, one of the doctors asked me how long she'd been diabetic.  I can't describe the absolute shock and devastation I felt.  There are no words.

My husband finished work and broke down when he saw our daughter so ill, lying on that stretcher.  He took our oldest daughter home, who was exceptionally distraught seeing her little sister was so sick.

I spent nearly twenty-four hours in the emergency room with her.  Watching them draw blood from her little arm every hour or two.  Watched them struggle to start another I.V.  Watched a little life come back into her cheeks as her body became hydrated once more.

Life was hell for a few months after her diagnosis.  I'm not going to lie.  I'm not going to make this diagnosis and adjustment period sound nice.  It wasn't.  Heck, we still have days where each and everyone of us hate this damned disease.  It's just that our coping skills have grown and matured.

Unfortunately, this man's blatant ignorance and claims to "cure" this life-long, chronic disease made all of my coping skills hit the floor -- the basement floor, actually.  It belittled every step forward we had gained.  Demeaned the struggle my daughter has had just to live.  Get that?  Just.  To.  Live.  If he had been in the room with me, he would have been well and truly educated.  Just not in a manner to compliment me.

My message to people like this is to educate yourselves.  Don't assume you know everything there is to know about a medical condition or how to "cure" or treat it -- unless you've walked a mile in the disease's shoes.  I'm not saying alternative medicine doesn't have it's place in this world.  But, be careful what you preach when your knowledge base is limited.

And finally, if you must critique, for god's sakes, BE KIND.  There was absolutely, positively, NO EXCUSE for the rudeness Roger Bezanis used.