A Solid B+ - Open Letter to My Endo

As part of Diabetes Blog Week, I'm going to do my best to post every day. So what if I'm already a day behind, right? Today's topic is:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

When I come to visit you, I may appear calm, cool, collected, and I even make jokes. This is not the real me. This is a façade. I am a fraud. It's not because I'm hiding anything. I do this because I am really a basket case, just fraying at the edges, ready to come apart at the seams.

I know you are trying to help me, and I know you must be wondering why anyone would be this anxious when you're just trying to help me?

What I want you to know is that I'm trying. Back in the day, I was a solid B+ student who got a good share of As. However, these days I know that I am a C student in your eyes - I am the student that never seems to get it quite right.

I know you never have criticized me directly. I know you want to guide me, to help me overcome the challenges that I have faced and will no doubt face in the future.

But we both know...

I don't exercise like I should.

I often miscalculate the number of carbs and even forget to bolus on occasion, which is obvious when you look at my logs.

Sometimes I even forget to hit the button on my pump that one last time to actually initiate a bolus.

I do mean to test more frequently, but sometimes, well, life just gets busy, and I don't quite get to it. I know my HbA1C may even be less than stellar with a 9 point something. And no, I can't even remember what it is. To me it is nothing more than a measure for you to grade me.

I know that you know that I live with this disease every day. But I also think that the words "every day" might mean something different to me than it does to you.

For example, when you go to work every day, then you go home, leaving the day behind, and enjoy what's left of the day with your family.

When you walk the dog every day, you get out there, play with your dog, come home and perhaps watch an episode of Modern Family or the Amazing Race, or call your mother.

Yes, I do all that too (admittedly I could walk the dog more, and I'd certainly like to have the luxury of sitting in front of the TV), but every day, I am wrestling with this blasted disease that permeates everything that I do.

I sometimes deal with lows that seem to come out of the blue, interrupting conversations with family members, fogging up my mind at work, and then must snack, test and deal with the subsequent roller coasting of blood sugars. I fight stubborn highs, which demand my attention.

I don't get to plan these things. They just jump into my life, and I deal with them.

I would like to share a story with you. Last night I was prodded by the CGM, insisting that I had a low blood sugar. When I got up to test, it turns out that my CGM was playing a stellar game of the Boy Who Cried Wolf - and insisted on playing it - all night long. The dog thought it was pretty exciting too, and thought she might need an excursion to her potty in the backyard.

This is not an unusual story. It is one story of many that interrupt me and demand my attention. This is my "every day".

To look at me, you may not see a B+. You may see something less than your definition of best. But in my eyes I'm still that solid B+; the plus because I am still trying my best.

All I ask is to please see beyond all the numbers and get beyond any assumptions about me. See me for who I am - as someone who is getting by and perhaps just needs a break.

I would like you to know that I know you are here for me. But next time we meet, take a minute to ask me how I'm doing, and then, really listen to my answer.

A Little Help and a Lot of Courage

I'm writing this on Mother's Day, but today's post goes beyond that.

Today I'm visiting my Mom, for the first time in more than a year. But today I have a little bit of my independence back, and we are going on a road trip.

But first, before I get to the point, I would like to review the obvious, and the not-so-obvious things about mothers.

For the more obvious, our mothers:

• Raised us
• Put up with our crap
• Kicked us out of the nest, only to have us return decades later after a crisis (ahem, thank you).
• Patiently listen to us, endlessly going on and on about our daily stuff

They also:

• Drive for miles to pick us up after a bad low blood sugar driving 'incident' and drive us home again.
• Make a CGM (Continuous Glucose Monitor) possible when our health fails us.

Okay, admittedly, those last two are very specific examples, but real nonetheless.

This is a simple celebratory day to say thank you.

The past year was a rocky one for me. It's almost been a year since I had a devastating low blood sugar while driving. It was likely due to multiple factors. My driving license was suspended for 7 months, and after a lot of hard work and a ton of support, even now I'm still being monitored by the Ministry of Transportation, so I'm not out of the woods yet. But the most important lesson that I learned this year was that I test a lot more, and never take anything for granted.

Gone are the days that I say, "I'm fine". I only say that now when I test, get a 6.1 mmol (110 mg), and then I say "I'm fine. For now." See the difference?

In the DOC (Diabetes Online Community), we say, "You Can Do This", and I can do this. But as much as I know I can do this, I haven't done it alone. I've done it with a ton of support from my family - my husband, my daughter (who reminded me today that I'm an awesome mom), my Dad, and on this special day, I am recognizing my Mom.

So now I'm sharing a tribute from one very cool (and Canadian) rapper Abdominal and his Mom. Of course, I don't rap, I can't sing in tune or the right lyrics, and I don't even draw. And neither does my Mom. Just ask her, she'll tell you that too. But this video just makes me smile, just as my Mom can make me smile.


Courage by Abdominal (and his Mom)

Today I'm smarter, I respect diabetes and the impact it can make on my life - good and bad, and today I'm decked out with a CGM (which is still a bit of a love-hate relationship, but I'll get there).

For all you out there with diabetes, and are faced with some life trials, you can indeed do this. We pick up ourselves and have the courage to forge on.

But most importantly, don't be afraid to reach out. To your Mom, Dad, life partners or friends, and of course, to the people online in the DOC.

I'd like to leave you with a little something, because you can do this, with a little help from your friends.

Oh, I get by with a little help from my friends,
Mmm I get high with a little help from my friends,
Oh, I'm gonna try with a little help from my friends.
                                                    Lennon/McCartney

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
Image

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.