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.