Wednesday, December 4, 2013

Pausing to breathe

With holiday time upon us, I am reminded of the type of world that we find ourselves in, and the technology that is part of it. Whether the latest Nintendo, tablet or the handy robot vacuums that wander our houses, something is always competing for our attention.

Actually, I kind of wish my pump looked like this. Pump manufacturers, take note

When you have type 1 diabetes, even more technology makes demands on you everyday, all day. Remember those tamagotchis? Feed me, pet me, play with me now, or you will be sorry. If you treat me well, I might play nicely. For a while.

But there comes a time when it just seems to much. This past summer, this reached a critical level. My pump and CGM seemed to be nagging, demanding, day and night. One in particular went rogue. Rogue because there seemed to be no discernible benefit, because it was wrong much of the time, so after more lost sleep, I wondered what's the point. I put it aside for the time being, but when I upgraded my OS on my Mac, Carelink, which is used to upload boatloads of data, was ill prepared for the upgrade, and was deemed broken; the last straw. My colicky tamagotchi babies were laid to rest.

So I hauled out my Ping out of my trusty Dbox (my treasure box of diabetes supplies and retired equipment), programmed it up, ordered supplies, and I haven't looked back. Mind you, I still don't have a CGM but one day I will do something about that. I have mixed feelings about ramping up the technology again. I am rather enjoying the relative peace that the Ping provides.

I admit, some technology does improve quality of life. But one day, barring a cure (ha!) (sorry that was a cynical slip), I hope to only have to worry about the feeding and watering of a Diabetes Alert Dog. Not only will that dog give me peace of mind, but an occasional appreciative wag of the tail after a long walk, which would be much more than my CGM could ever give me.


Wednesday, October 9, 2013

Bad Word Wednesday: Redacted Edition

Infusion set failures. Let me tell you about them.


For those who pump insulin, you know what that can mean. For those who don't know, it can lead to high BG readings that don't want to budge, not because you had that second brownie and didn't bolus the requisite amount of insulin, but because some [redacted] piece of [redacted] plastic failed to properly insert another piece under my skin properly. But instead of, say, trying to deliver for 5 minutes, and then telling me, "Hey, over here! I'm not working so well!", it lets me carry on with my bedtime routine. Until…

4:30-something [redacted] a.m.

Beep beep beep. 

I roll over to check the phone on my bedside table. Not time to get up yet. I roll over to go back to sleep, knowing my trusty first alarm is scheduled for 5:55 am. 

Beep beep beep.

I reach over to poke my phone, trying not to wake up too much.

Beep beep beep. 

Then I realize that it's my [redacted] pump. I squint in the darkness, and see the dreaded No Delivery alert. 

No this is a perfectly acceptable notification if it is, indeed, out of insulin because I hadn't loaded it up with insulin. However, I inserted the set right before bed. Something had gone wrong with the installation of said set, and I had to do something about it. Now. 

[redacted]

So out of bed. Which means there's a required trip to the bathroom (yeah, because I am of a certain age), and downstairs to the Diabetes Supply Bin, unwrap a new infusion set, find a good spot on my body with my eyes squinting in the [redacted] too bright light of the dining room. 

Next comes a BG test to find out where I'm at.

16.9 mmol (300 mg)

[redacted]

... and a lot more profane words than that were going through my head. And [redacted] that, I'm annoyed and starting to wake up too. This is just a piece of crap. 

Nonetheless, I bolus the suggested amount and crawl back into bed. I think I noticed that it was just after 5 now. Less than an hour before the first alarm. 

Fast forward to breakfast time. 6:20 am. Time to test, and THIS is what I get?! 


[redacted]

BTW 15.9 mmol = 286 mg = not much [redacted] difference from 1-1/2 hours ago.

Ok, moving on....

Tuesday, August 27, 2013

Little Whispers


I am not a jealous person, or even an envious one.

Ok, maybe I'm lying a little bit.

I admit I feel a twinge of envy as my friends dig right into the lukewarm leftover pizza after a meeting, without a care in the world. They don't wonder how many carbs is in a Meat Lover's slice from Pizza Heaven, or how much insulin will cover that for the time being, or how much to extend a bolus over the course of several hours when the Post Pizza High comes back to haunt them.

I know it's childish of me, but I'm envious, just a little.

I wish I could sketch too//envy alert//: Source Unknown

On reflection of my "career" with diabetes, I can't remember ever having a good an in-range HbA1c. Ever. That's almost 25 years of numbers over 8% and sometimes much higher, representing blood sugars 10.2+ mmol (183+ mg). Ideally, we are told, someone with diabetes should an A1c of 7%*, representing blood sugars in range of 8.6 mmol (154 mg).

*Sidenote: This recommended amount is general, and varies depending on your physical condition, age, and a host of other factors. 

I am well versed in the concept that I should have a lower A1c. Really I am. Now it certainly is my endo's job to remind me of this, (although senility has not yet set in - I do recall this fact all by myself). But for some reason, just about every other medical professional seems to have a vested interest in what My Number is, often adding their respective specialty's list of what could go wrong if I don't get That Number down.

Life should be so easy, eh?

Just another side note for anyone about to jump on the lower-number-is-better bandwagon: Just because I have a higher A1c than "recommended", it does NOT mean I haven't been trying. The value of how much I try does not correlate to my A1c level.

So, when I see my fellow diabetes friends share Their Number achievements, I am truly happy, even excited for them. I know how much work goes into even lowering it by just a little.

One could actually argue that I don't know, because I've never got there myself, but I will leave that discussion for those eager to make that point.

But, as I celebrate those successes with my friends, there's a little devil, sitting on my shoulder, whispering in my ear, "Don't you wish that was you?"

However, I am a lucky person. I also have an angel sitting on my other shoulder, reminding me that I can do this, and perhaps one day I will be able count myself among those who celebrate our successes.

Envy is the art of counting the other fellow's blessings instead of your own.
 ~Harold Coffin*~

*See what I did there? Seriously, the author's name is really Coffin!

Sunday, June 16, 2013

Fatherly Reflections

My Dad is my biggest fan here at InkStain'D. He was my very first subscriber, and I know he will get a notification that this post has gone live. So, on this Father's Day, I think it is only right to give a little back to him.

My Dad is the coolest 82 year old that I know.

In addition to putting up with my own nonsense for a lot of years, he frequently would take his grandchildren to the park, accidentally getting one stuck pushing them endlessly on the swings, melted softened their ice-cream in the microwave, supporting lego building marathons, and has spent countless hours job searching for more than one of his children. He would play cribbage with my mother and my grandma, even though he hated cards, with hardly a no complaint. He is a patient listener, offering his advice when we seek it out and sometimes when we don't.

He is smart and knows about just all kinds of things. Technology doesn't phase him. He has used a computer for many years, and he does way more than check email. He's set up devices like Apple TV, and yes, he even tweets. He stalks follows me on Twitter to make sure I'm doing ok, and if I am MIA for a while, he faithfully checks in. And he loves to read, everything from blogs to historical books.

Where was this guy during those Lego marathons?

The one thing he loved, that drove me crazy (yes, I was an ungrateful child!) I under appreciated as I grew up, was his love of the pipes. No, not the kind that Toronto Mayor Rob Ford allegedly has used according to some missing video out there someplace, but yes the bonafide bagpipes. He has a kilt, and suffered through endless questions of what pipers wear under their kilts (think about it, what would you wear under it all if you were wearing a kilt?)

So as a nod to my biggest fan, this Father's Day, I'd love to share a story with him that blends two of his passions - the pipes and history. So just for my Dad on this Father's Day I'd like to share this story about the pipes and D-Day. He might already know it, because he knows just about everything. But I'll share it anyway ;)


And before I start, for clarification, I don't mean D-Day as in Diabetes Day, as is the norm for this blog. Certainly there is no shortage of "D" things mentioned here. I mean D-Day as in the D-Day.


Now, due to stupid copyright laws and such, I'm going to share the story by link, because I'm just very sure the Economist wouldn't give me license to reprint here. I'll start with a question.

What was the last tune they had piped on D-Day in Normandy? 

Read all about it here.

As I reflect on my years since he brought me onto this planet, I see little bits of my Dad in me. But one day, I hope that I can be as smart and cool as him.

Happy Father's Day, Dad!


Thursday, May 16, 2013

Courage, Brains and Heart

Accomplishments Big and Small: Another topic in DBlogWeek's Series:
We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.)

As I've been writing about my diabetes achievements, it struck me that they are much like those that the Scarecrow, the Tin Man and the Cowardly Lion faced in the Wizard of Oz.



The Cowardly Lion


Remember how scared he was? He was afraid of everything. I too was that Cowardly Lion as I faced that stupid orange as a newly-diagnosed 28 year old, during my short stay in the hospital. I can recall each dimple in that orange, and remember the fear that I was, at some point, going to just have to do that to myself. I could not fathom how that was going to "be just like" giving myself a needle. But I did it. That was my first step to finding courage. As it turned out, it was my first courageous step in my diabetes journey. Since then I've found myself in the Cowardly Lion role many times, but I've also found as many opportunities to find courage along the way.

The Tin Man


Diabetes is a sneaky sort. Just when you think you have figured it out, you are humbled and realize that you haven't figured out a thing. Low blood sugars will sneak up on you, and highs can slap you down. A quote comes to mind from a song that has absolutely nothing to do with diabetes, but the words resonate for me:

I get knocked down, but I get up again
Tubthumping

Diabetes is just like that. Just when you think you've figured it out, it will knock you down. I have been humbled many more times than I can count. But through no shortage of strategizing, analyzing and sorting things out, I seem to still come out on top. I am not yet master of this disease, nor do I think that I ever will be. But I'm better at dealing with it than I used to be. As I evolve with this disease - along with diabetes technology, I'm getting better at it. As with the Tin Man, I have discovered that I have the smarts to figure this out, and one day hope to draw back the curtain on that diabetes wizard.

The Scarecrow


By far, I think that discovering the DOC (Diabetes Online Community) is like discovering my own heart and, even better, discovering that I am part of a bigger whole. It wasn't so long ago that I didn't talk much about diabetes. We've come together from different places, cultures, we are employed, unemployed, insured, uninsured, we are cool and we are nerdy. We have brought our talents, our skills, our perspectives and our challenges to the diabetes table. I am part of that community. Somehow we manage to be a big, messy and still, somehow cohesive group, supporting each other through it all. We are a community with heart and what can be better than being part of that?


To read great posts from fellow "Scarecrows", click here.

It's not too late to join in. If you don't have a blog, and would like to have some space to join in, just let me know and I can give you some space, or click on the banner below.


Wednesday, May 15, 2013

Not a Movie, Not a Nightmare - Memories

Today's DBlogWeek Day 3 post is about sharing a memorable diabetes day, taking it anywhere, whether you or a loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

For me this is a very dark subject playing out in my mind as a scene from a very sinister horror movie. I've tried to write about them before and just now, a post sits there in my drafts, unfinished.

To play it out again in my mind - and then writing it as if it were a screenplay brings everything flooding back, and I can't - I won't do it. At least not now. I'm not ready, and not sure if I'll ever be ready.

Think of your worst nightmare that you've ever had. Think of the fear, the darkness, the helplessness. You know it's not real, so the memory eventually fades.

Not so with my diabetes memories. Because they were real.

In the haze of a low blood sugar, on thee edge of consciousness, I can't remember much - just flashes or snippets of memory. But they can play out in my mind as if it were just last night.

I feel anxiety rising, remembering the real fear, and the fog. It starts in the pit of my stomach, but has nowhere to go, and I just want to hide.

But this is real life, and not just some bad dream. The worst part is, there have been some very real consequences. The most disturbing is that I have scared those who love me most.

And for that, there's only one thing I can say, and share with you today.

Damn you, diabetes.



You can find more Memories posts on the Wednesday 5/15 Link List.

And to join in, click below:

Tuesday, May 14, 2013

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 fa├žade. 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.





Sunday, May 12, 2013

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

Saturday, March 9, 2013

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.


Tuesday, January 1, 2013

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.