The Cure Thus Far

Two words that PWDs (Persons with Diabetes), parents of CWDs (Children with Diabetes), and their support networks hope for.

For many, they live, breathe and even die, hoping.

This is The Cure
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We struggle with it every day. We poke our fingers, and some poke their fingers of their children. Pods are installed, infusion sets and sensors are inserted, often with tears, either tears of the children who are having them inserted, or tears of the parents doing the inserting. Yes, it makes sense to want a cure. Who wants this?

I have lived with type 1 diabetes for almost 25 years. It is safe to say I am one of the experienced ones. But it is also enough time to become jaded by "cures" that are just around the corner. In fact, when I hear the words "diabetic mice have been cured…", my heart sinks. I remember I waited 10 years, the latter of the "5 to 10 year" year assurance that my doctor gave me. At the time, I clung to that, for 10 years.

I've seen studies come and go. The latest and greatest seeming to be the DRI's Biohub, quite possibly a remarkable technology and initiative. not without the excitement, and cynicism, that goes along with such an initiative.

But what really bugs me, is that as much as this may me am important step forward, I do not appreciate the emotional plea being made to those of us with diabetes. I watched the video, with a kind of dread - the kind of dread that I would hear those words.

I was not disappointed.

The video started out with - cue the dramatic music and serious looking scientists and doctors - high level info about the BioHub - who what why etc.  I'm sure it would do everything except butter my toast (but it would deliver the appropriate insulin for the carbs in said toast). However, it glossed over challenges and hurdles which are inherent in any new technology. It barely touched on the possibility that antirejection drugs would be needed, and it didn't even mention that it would be appropriate only for certain groups of people with severe diabetes. It did not say that it was a surgical procedure with the inherent surgical risks.

And did you catch it? When the voice over said "scientosts would tie off a veinous sac"? Scientists?? Really, even the script had issues.

Then came the real catch - that with limited available funding drom the government (of course), without MY help, it wouldn't happen. They wantonly threw up fresh faces of hopeful diabetics. Sprinkled throughout was the testimonial of a lady who had islet cell transplant - um, not the same procedure I might add, who couldn't believe how amazing this was.

Then at the end, as in any good funding game, they hit the home run with the beautiful face of a young child. I am left with the impression - this is somehow my responsibility? This young child may not be cured because I haven't opened my wallet yet?! Really???

Are we - those who have diabetes - their first stop? Their only stop? Have they even bothered to petition traditional funding sources? What about the very university they are associated with. What about corporate sponsorships? Partnerships and the pooling of resources? How much have they raised so far? How much do they need?

And who are these researchers from other countries. I saw many countries scrolling across the screen, and even Canada was mentioned, where I live. But Canada is a big place. Who is it they are working with in Canada?

So where are the pie charts?? Where are the charts with pretty colours that show what they have achieved, and what they have tried. Charts that track their successes so far. I saw nothing of the like in this video.

I'm not saying it hasn't happened, however, they also didn't disclose it in this video. Because I think all that real stuff would just wreck the emotional appeal of the video. What this boils down to is a wanton emotional appeal for funds - appealing to those hopeful, who aren't jaded like me, and perhaps the cure can be found on the backs of those of us who want the cure most. Those of us who are hopeful to find The Cure.

I am all for The Cure. I'm all for researching and supporting the Cure. But until I hear more, it's not going to be me.

The Good, Bad and Ugly

This is the time of year everyone is busy reflecting on the past year and making plans for the new one. I look at it as a time of reflection. The new year is the line between reflecting on the years I have lived, and the years I am looking forward to, in particular the weeks ahead of me.

A lot has happened in the past year, and not all of it good, but perhaps more good than bad. I'm here. I'm lucky. And that's a fact. 

But it is the emotional toll that has had the biggest effect on me, and yes, at times this year I have felt angry, disillusioned, and depressed. But mostly angry, and it's been difficult to see the good that has come of this disease. But to move on beyond the anger, I must find the good.  

I've just read a post in which Scott Johnson shared a recent scary experience that got to the heart of why I'm angry. As I read it, I found myself in the back of the ambulance along with him, except for me it was last June. A combination of events, some which may have been very much like Scott's, where I had an unusually stubborn high, and in addition some pump anomalies may have caused my blood sugar to tank, and led to a bad low, while driving. I have come to accept I will never know what happened for sure. A perfect storm, coupled with hypo unawareness, landed me in the back of that ambulance.

Scene from the stretcher

Another view from the stretcher - much nicer view
(BG is approaching normal by this point - immediate crisis averted)

Today, I am still without a drivers license, and waiting for bureaucrats at the Ministry of Transportation in my province to review the report that my endo sent in a few weeks ago. Does this bureaucrat know anything about me? No, not a blessed thing other than those checkboxes and few lines that Dr. K had filled in the report. 

It's easy to get my head stuck in the bad: the worries that my husband, daughter and parents have had about me, the irritation of not being able to drive for 6+ months and living in a town with no public transit, multiple doctors appointments and many more emails with my CDE have taken up a tremendous amount of time, and the rising expenses of an already expensive disease. 

So where's the good that will help me see the light ahead? Well, luckily, the last few years, especially the last few months, have provided me with hindsight. Hindsight is the harsh teacher - the hard teacher that challenged many a student. In the end, the hindsight will shine the light on the months ahead of me. 

Hindsight has given me the gift of learning some lessons that will do me well in the coming years:

• Insulin is to be respected. No matter what. There can be many factors that lead to high blood sugar readings, but be patient. 
• If something doesn't feel right, test. If a test doesn't make sense, test again before you act on it. Don't assume. 
• I will probably think twice before sharing the specifics of any bad lows with my endo. I have also learned that in this province, they can suspend your license, even if you have a low while doing other things, even sleeping in your bed, so yeah, I will think twice. Now before you share with me how that may not the best decision for my health, I do know this, but it's what I've learned, and I'm just putting all my dirty laundry out there for the world to see. 

The Good

• Without question, family and friends (both in real life and the Diabetes Online Community)
• Rosie (my new pump/CGM)

The Bad

Diabetes, specifically:

• Low blood sugars
• Stubborn high blood sugars
• Complications

The Ugly

• Governments meddling in my medical care are a pain in the butt (sorry, that's the best and only way to say it)
• Insurance companies (you need 'em, you hate 'em)

See how easy it is to come up with a list of bad stuff? But you know what? It just doesn't matter how many things are slotted in these sections.  What I have learned is, if you work at it, the Good will always outweigh the Bad and the Ugly. 

Let's Make A Better World

Hug your family and your pets. 

Invite your friends for coffee. 

Tell a knock knock joke. 

Listen to some music to make you feel happy. 

Smile. 

Say a kind word to a stranger to lift their day. 

Remember to say thank you, and really mean it. 

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If we let it, this world can get to us. 

Lives are lost in senseless ways - violence, accidents, disease and hunger. 

We will never understand why, but all is not lost. 

We can honour those who are lost to us.

by giving back to those who are still with us. 

We can give back. 

Just get out there and make a difference. 

Lest We Forget

To honour all those brave souls who gave their lives serving the military, 

"Lest We Forget" is published this 11th hour on the 11th day

I posted this first on 11-11-11 at 11:00 am, and I share it once again with you. 

In Flanders Fields

In Flanders fields, the poppies blow

Between the crosses, row on row,

That mark our place; wait and in the sky

The larks, still bravely singing, fly

Scarce heard amid the guns below.

We are the dead, short days ago,

We lived, felt dawn, saw sunset glow,

Loved, and were loved, and now we lie

In Flanders fields!

Take up our quarrel with the foe:

To you from failing hands, we throw

The torch; be yours to hold it high.

If ye break faith with us who die

We shall not sleep, though poppies grow

In Flanders fields!

~ John McCrae 

In Canada and throughout the Commonwealth, Remembrance Day ceremonies offer veterans the opportunity to remember and salute fallen comrades, and all Canadians an occasion to reflect on the sacrifices made and the tragedies endured in their name.

Lest We Forget is what we say, for we shall not forget. For me, it reminds me of these fallen soldiers who have given the ultimate sacrifice - instead of staying home, safe with their families, attending to their daily lives, they fought in trenches, enduring pain and suffering that most of us can't even imagine. This day was set out so that we do not forget these fallen men and women who gave so selflessly. This day is for them. This post is for them.

The drawing above was done by my nephew Keith in 2002. He was only 10 years old at the time. It is clear that he "got" it. And I hope it serves to help us all "get" it too. 

Lieutenant Colonel John McCrae, physician and poet, served in WWI

in the Canadian Medical Corps and had been artillery veteran of the Boer War