Off to advocate

I'm on the Airport Express on my way to the San Francisco Terminal en route to the Medtronic/Bayer Advocate Forum in Southern California.

I attended this summit a few years ago.  It seems like a lifetime ago.  I didn't know any of the bloggers that were attending then.  Scratch that.  I never MET any of the bloggers that were attending then.  I knew them.  I read their blogs until my eyes leaked with either exhaustion, empathy, or laughter.  I knew all of their hearts.   But still, I was shy and a bit uncomfortable in my skin.

Fast forward to today...I feel like I'm running into the arms of my family.  These bloggers now feel more like my sisters and brothers more than anything else.  I know their quirky, endearing personalities, I know their sweet hearts...and I love them.

I'll be attending the summit until Saturday, so if you'd like to follow some of my thoughts, or if you want to communicate directly with me, Twitter is your best bet.

I know.  Don't have a heart attack.  I'm actually going to be hanging out on Twitter.  You can find me at @our3Dlife and my posts related to the summit will be hashtagged #MedtronicDAF.  By searching for that hashtag you'll also find all the other bloggers tweets too.

I've gathered a mountain of wishes, complaints and compliments from various different online groups, but if you want to put your two cents in, please let me know what you'd like Medtronic to know.  I'll do my best to relate it!

So before I throw up from car sickness, I'm going to sign off.

Wish me luck!

And to my brothers and sisters...I'm coming!!

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... And Then My Father Died All Over Again

His foot was black and woody; gnarled, like dirt covered ginger. I will never forget the terror in my mother's eyes as she fruitlessly tended to its bandaging, and yelled at him for letting things get to this point. It was a shocking state of affairs. My father was now blind, bedridden, undergoing dialysis, and at the verge of needing his foot amputated.

My old childhood home had changed from whatever it was in my memories and into a hospital. Dad's room was an intensive care unit; my sister's old room was storage for the massive amounts of dialysis fluid boxes he would be needing.

I knew that dad was struggling... but I didn't know the extent. I had been gone from home for far too long, I guess, where at least reality wouldn't have denied me the right to know the truth. My parents, however, were the kind of people that lie by omission -- never telling their youngest daughter whatever might have worried her, or troubled her; never keeping her up to date with issues such as this. It was their way of protecting me... but it was far less protective than the truth. On May 5th, 2003, dad passed away. I only got to spend one last weekend with him the previous March... where he couldn't see me, couldn't go on walks with me, and had the beginning stages of dementia.

For the longest time I was very angry at my dad. To be and feel desperate at the healing of the unhealable is one of the most impotent feelings a loved one can experience. You are overcome with anger at the selfishness of the 'uncompliant' diabetic, not thinking how this would impact family; not thinking of the burdens of family having to be nurses, diaper changers, dialysis providers, and well... at the other end of helplessly watching them rot.

It has taken me years to deal and cope with these feelings; to come to terms with acceptance and forgiveness, and understanding that although complications happen, they are not always due to our choices as people with diabetes. That sometimes, the long ride is just too much -- and the genetic deck is not stacked in our favor.

Except on December 20th, 2013...

A desperate message was posted in a large online community to which I belong by a young man seeking advise about his father's infected wound, how it was not healing, and asking about what all that needed to be done. Someone -- knowing about me and my advocacy -- gave him my name. Then the desperation began anew... this unreasonable feeling of 'how can I save this person's loved one?' What all can I do to turn back the hands of time? I answered as best I could... with all the information I knew.

But information is cold, and stiff. It doesn't change his lack of access to resources, to well educated medical professionals, to the state of the art facilities we enjoy here in the states. It doesn't change that he knew not much about neuropathy, how to care for poor circulation, how to effectively and diligently monitor blood glucose levels, let alone what healthy blood glucose levels were, that Indian food is not exactly diabetic friendly, and that years and years of this status quo would likely not be undone.

Every day, the young man messaged me. "What can be done?" Sometimes, a few times a day. I could see the desperation of his situation -- I could see in my mind's eye, the terror on his face. At some point, I had to say "I am sorry. I am not a medical professional. These are the best guidelines I can give you... and to urge you to seek a wound care specialist." I wish I could have done more. I felt like I was needing to save my own father all over again.

I heard little from the young man, after that... But I had my suspicions. My gut feelings. On December 31st, he wished me a Happy New Year, perhaps in the most somber of ways one could wish it. Just words on a page... not even capitalized. Then by January 5th, he finally mustered the courage to tell me that on the 2nd, his father passed away. And it all came back around, home for me...

I mustered an "I'm so sorry,"  in the best way that I knew how, never once telling him about my own pain. My own loss. "It's fine," he replied.

Perhaps not so, today... and that's just fine, as well.

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Learn from my mistakes.

I’m sure I’ve written this post before…or the spitting image of this post before.  I suppose if you write long enough it is bound to happen.  But in an effort to help others, including myself, I will continue.

Learn from me.   And hopefully I’ll learn the lesson for myself once and for all.

Stephan King once said, “There is no harm hoping for the best, as long as you are prepared for the worst.”

Whoa.  Wise words.  If you can get over the fact that Stephan King said them, yes…very wise words.

We were only traveling 45 minutes from home.  It’s not like we were taking a vacation or anything.  I even made sure all the boys’ reservoirs were full of insulin. 

I packed extra low supplies in my purse, and I made sure there were ample strips to boot.   It wasn’t a big performance or anything.  Just random double checks before we ran out the door.

The story is about B by the way.  The kid is growing in height faster than his hair grows.  He’s 12 and is officially taller than me now.  As a consequence, he’s been sleeping late this Winter Break.  Like until 10.  For a kid that is usually up by 8, this was very unsettling for me at first.  There were many moments in the morning, standing by the door, checking his chest for the rise and fall of life.  But I digress…

This morning we were heading to Emeryville, B slept until 10:30am.  I even had to wake him up because we were planning to leave at 11am.  His blood sugar was 129.  He didn’t eat breakfast, he didn’t have time, when I offered him a banana he said he wasn’t hungry anyway.

When we got to the restaurant at 11:45am B said he wasn’t feeling too well.  I thought, sure…he hadn’t eaten breakfast.  He’ll feel better after he eats.

Sure enough, he ate his entire plate, and then some.  Since we were at a restaurant, and restaurants like to pepper their food with magic carbohydrate seasonings, I had him enter in 110g of carbohydrate.

After lunch we went to Ikea and shared a piece of Chocolate cake.  Another 40g of carbs entered in.  Everyone was smiling.  Everyone was happy.

And then as we were waiting in line to check out, B says he didn’t feel well.

By this time I’m convinced he has the flu.  I have him sit on a bench, and as soon as I pay I check his sugar.

570.

Crap on a cracker.

We checked all the usual suspects, and found he did bolus as he was supposed to.  There were only two options:  He was ill, or his set kinked.  Oops, forgot to tell you his set was changed the night before.  But he woke up 129, right?

After a correction, 10 minutes later another check yielded HIGH.

His stomach hurt so bad I had him pull the set and sure enough, it was kinked in half.

Now with traffic, we were a good 50 minutes from home.

Here is where the lesson comes in:

I had no syringes left in the car.

I had a new set to insert, but no serter to insert it with.  I considered just slapping it in, but B became defiant at the prospect.  And even if I did convince him, would I slap it in without kinking it??

I pulled over and got him a giant bottle of water, and white knuckled it through the traffic home.

We changed his set and checked blood ketones.  They were only at 2.1.  Maybe that cannula wiggled out that morning somehow?  I do not know.

I can guess all the live-long day, but I can’t tell you how long he was without insulin. Although I can definitively say, long enough.

So, please.  Go into your car now.  Make sure you have extra syringes.  Make sure you have extras of everything you can have extras of.  Make sure.

Don’t be me.

I know many families carry a bag everywhere they go with everything they need all the time.  I'm not one of those families.  They are obviously way smarter and way more organized than me.

Learn from me.

I once had everything I needed in my car, and more, but we used those things.  They need to be checked periodically. 

You might only be planning to be away for a few hours, but look at Gilligan…

I rest my case.

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Do You Really Need a New Year's Resolution? Then Drink More Water...

Ask the average person to drink more water, and they'll make a face at you or come up with an excuse: "Water's so boring... it doesn't taste like anything."

I think that we're so used to eating, and overeating, that we don't feel right if we don't have something of 'substance' in our mouths all the time. We use that as an excuse and then it becomes so easy to avoid water, and get carried away drinking things like carbonated sodas, sports drinks, smoothies, teas, and coffee, etc., all throughout the day. We don't notice how these other beverages -- while sometimes possessing some benefits -- may be more detrimental than helpful, when they start replacing water. Some of them are even addictive, so much so, that leaving them may cause headaches or even migraines due to their caffeine content. Others are quite high in calories and sugar.

Now, don't get me wrong -- I don't mean anyone should drink X amount of water a day. The idea that we ought to consume x or y amount of water a day, came from an outdated notion of 'averages.' Today's wisdom is that people are all different, and as such, they should drink to thirst, to better meet their individual needs. It is a silly idea to suddenly make oneself consume so much water a day, as some kind of achievement -- as I have seen many fellow friends give themselves this challenge. Overconsumption of water depletes minerals and electrolytes which are necessary for a well balanced and healthy body, plus... it makes you visit the potty a lot more often than you really want.

Now, all this being said... it is not a bad idea to start adding more water to our days, and to start listening to those physical thirst signals. Here is something to know:  The feeling of thirst is very similar to hunger. If you are not having enough water in your day, and you are overeating -- it very well could be that you are not hungry at all, but simply thirsty. Try having a little bit of water, and wait to see if those 'hunger signals' are still there, or if they subside. 

Drinking a glass of water first thing in the morning will help your body get a kick start. Just like your body has spent the last 8 hours not eating, it has spent the last 8 hours not having water. The body needs to replenish fluids in order to perform its basic bodily functions, such as detoxing your system through urination, cell regeneration, and hormone production (which includes hormones which communicate hunger and satiety signals). 

Once you slowly add more water to your life, you may start to see some of these benefits: 

• A Better Mood. Being dehydrated can make us moody, cranky, even depressed. 
• Less Overeating. When you are well hydrated, there are less chances for you to confuse a thirst signal for a hunger signal, and will also feel your satiety signals more clearly. From personal anecdotal experience, I can say that when I have a diet soda with a meal, I will feel full and bloated on the carbonation, will then stop eating the meal thinking I am full, and then will start eating later out of feelings of hunger and lack of satisfaction. With water, I feel like I can fully enjoy a meal, and stop when satisfied.
• Better Glucose Levels. When we let ourselves get very dehydrated, our blood volume is decreased, and thus the concentration of glucose will increase. This can turn into a dangerous and vicious cycle -- especially if compounded with exercise, and higher blood glucose levels which also dehydrate the body even further. Water can help you sweat properly, release toxins, and keep a stable blood glucose level. 
• Younger Looking Skin. Simply put, when you're dehydrated, you look old and tired. Your cells don't have what they need to regenerate, or to have that healthy glow. Plus... you'll get dark circles under your eyes. Eww.  
• Less Swelling/Bloating. Swelling, bloating, puffiness... of the face, or of ankles, can all be defense mechanisms of the body to try to keep and retain fluids at all costs, because it's dehydrated. 
• Regularity. Water helps prevent constipation, and helps you flush out toxins. 
• Improved Muscle Health. Water can help our muscles and joints be more lubricated during exercise, as well as prevent them from cramping. After all, our muscles are mostly water.
• Less Headaches. One of the most common reasons for a headache is dehydration. Seriously. People just don't realize it. Do you know what a hangover is? DEHYDRATION. 
• Refreshment. When the outside temperature rises, drinking enough water can help our body feel refreshed, by keeping body temperature well regulated, through sweating. Drinking enough water can also help fend off heat stroke. 
• Better Sex!!!!! Yeah. You read it right. You can't perform right, if you're dehydrated. From erectile dysfunction to just losing steam in the middle of the action. 

So... as a baby step for being healthy, why not try having a a glass of water, just on its own, a few times a day? We can slowly wean ourselves from letting other types of beverages rule what we drink -- and soon the true refreshing nature of water becomes what we crave, without needing added flavors or additives, when we are truly thirsty. Trust me. It really does works. :) 

So if you're truly thirsty... put DOWN the diet Coke. Go have some water. You owe it to yourself, and to your health. 

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Overriding. La! La! La!

Turns out, I’m really good at making things harder on myself.

My endo has been telling this to me for years.  The mental tweeks I make in bolus amounts, the carb counting (plus some) add ons/take-aways I’m so keen on compensating with…it all seems to be in the best interest of just “adding work” to my already over-swelled brain.

I’m so against making adjustments to the pump because in some instances, change begets chaos.  And really…

So instead, I manually pad insulin, or override, and instead of letting the pump do all the work for me/us, (because isn’t that why we have it in the first place?) Instead, I let it do the math, and then do some of my own creative math and mash it all together. 

Which, has been quite successful, so successful even, maybe I would have never noticed.  But at the beginning of the school year my two youngest began taking the reigns more often, and well…let me give you an example:

“How many carbs for this plate, Mom?”

“What do you think?”

“I think it’s 65.”

Me, doing a mental scan of the plate think, “Hot damn, he seems to be spot on.  It really is 65.”

But my mouth says, “You are right, it’s 65…but give yourself 80.  You need more at night these days.”

What am I teaching him?

The entire point is to count the carbs correctly and put it in their pump.

Just a month ago my boys were convinced bananas were 10 carbs.  That is because every day at snack, I give them half the true carbs, to counteract all the running around they do at recess.  We had a conversation about this, and now they know that bananas are really 20 carbs…or sometimes even more.  But why don’t I just change the carb ratios between 9:30 and 10:30am so they can count the correct carbs and move on?

Maybe because on the weekends, they need those full amount of carbs.

It’s never just simple. 

Though I'm glad I'm not alone in this.  Last night I had dinner with a dear D Mom friend, and she told me she just downloaded the pump and CGM to her computer for the first time in forever.  Turns out, they've been overriding the pump 90% of the time.

There are so many variables, and really all unnoticeable until we try to explain it to someone else.  And in my case, the someone elses happens to be of the ages of 10 and 12.

To add to the numbers game, every basal rate for every boy has gone up this Winter break.  It’s an annual holiday-only tradition it seems, because as soon as school starts, they all have to go back to where they were before.  (Well, except J’s nights, I never upped his nights.)  I've been explaining why I make the changes that I do, to educate them.  Because they are old enough to know why.  I'm adjusting their insulin, which in turn adjusts their blood sugar numbers, and since it is affecting their bodies it is their right to know.  I think it all seems much more complicated than it really is because I’m thinking for three, and maybe it won’t be so mind boggling to them, because they will be thinking for one.

But then again, it really doesn’t seem overwhelming until I try to explain it all.  Once they have all the information and store it accordingly, won't it all be second nature to them too?  My underlying worry of overwhelming them seems to be fruitless.  The voice in my brain totally agrees.  But then again, the voice in my brain does sound like this...

So what does it know?

When I really think about it though…my boys are smarter than I think they are.  So I’ll continue giving my creative lessons and let the chips fall where they may.

Because diabetes doesn’t always go by the book, or by the pump settings.  At least when you are a growing child anyway.

If it is true information is power, my boys will light up a stadium before we know it.

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Don't Fall for the New Year's Resolution Trap...

Every new year, I rail a little bit against the concept of New Year's resolutions -- that time of the year when everyone is suddenly dieting, ending bad habits, testing every day, taking all their medicines on time, and having a near heart attack after trying to jog for two blocks.

It's not that I don't want to see people succeed, but I feel that this time of the year isn't really ideal for making such changes. For one, our challenge becomes this public stage: all friends and family become aware of these resolutions, and we're expected to 'perform' like a good little child for someone else's praise. Often they might even police our behavior. On top of this, most people don't really have a basic grasp on how to approach these really big changes. People want to eradicate all unwanted behaviors, or install new ones, in one fell swoop. Considering that humans are creatures of habit -- and often, habits which have many emotional underpinnings, this is the stupidest idea that has ever occurred to anyone. And corporations LOVE IT, and feed on it -- and then constantly bombard us with New Year's resolution ads because we're sheep like that. This creates an environment where food, and the pressure to succeed and be perfect, is ever present on the mind: eating certain foods, and avoiding the foods we won't allow ourselves to have, being the size of that one skinny model eating yogurt, living on only cereal or soup, etc. It's a recipe for disappointment, and we really set ourselves up for it. Honestly, I'm surprised major women's groups have not denounced some of these ads as unhealthy, and gotten them off the air. I mean, are these corporations really suggesting I should live on nothing but cereal, or soup, to get skinny in a short amount of time? This is the root of anorexia right here, folks.

Now, do I think we shouldn't reevaluate anything in our lives, ever? No. But my perspective has always been that we ought to do more than just change some 'actions,' and instead change the emotional bonds and attachments behind ingrained behaviors. That we should first tackle the "bigger picture," if you would. For example: If we're having a problem with weight, perhaps we ought to focus for a while on not overeating (and all the reasons and emotions behind that, and what it entails), rather than drastically changing the particular foods we eat; or, if we're having a problem with being inactive, perhaps we ought to focus on finding enjoyment in some physical activity, like taking a walk around the block after a meal, and noticing how our body craves the movement, rather than focusing on meeting certain time limits and endurance levels; etc. Changing how we focus our minds around these challenges will allow us to address the problems at their root causes, and allow us to make further progress in establishing disciplined habits. Once we are focused on just eating the amount of food our bodies need (ie, eating to satiety signals) -- and not more than that -- we can perhaps consider trying new foods. Once we see that we enjoy walking, perhaps we can step up the pace.

So, really, when we look to make changes in our lives, we should be looking to slowly and completely change our state of mind, and not just some actions. Actions are simply the symptom of the deeper problem. The thing is... we can start this at any time of year -- we can start it whenever. And we don't have to let ANYONE know we're doing it. We can freely invite someone over to enjoy an evening walk after dinner, without ever having to let them know what we're doing. It is NOT about keeping ourselves accountable -- it is about finding enjoyment -- enjoying out body, the things it can do, and our lives.

So, in the New Year, resolve to give yourself the freedom to not resolve anything... but to give yourself and your actions, the love, respect, understanding, and attention which they deserve.

Happy New Year.

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Our Diabetic Life 2013: A year in review

My first entire year without Ryan in over 20 years. 

Is it no wonder it began with posts full of memories of him?  It’s been surreal to go back and see this year unfold once again.  Hindsight is a wicked teacher.  It’s been a process, but I’ve learned so much along the way.  I’m stronger now.  I’m so thankful for that.

In January I began my journey into therapy with “The Accidental Patient.”  I have since graduated myself from the group.  The time I spent there was eye-opening as gaging my progress amongst others was interesting, to say the least.  I walked away thankful I wasn’t bitter.  I could have so easily been bitter.  

I’m sure part of the peace came through my process of picking up the pieces.  I explored doing so in “Fixing my Faith.” Ryan’s passing made me come face to face with what I believed.  It was no longer ok to believe in heaven anymore.  I needed to know.  I have no reservations when I say now, I know. 

As I was muddling through the phases of grief, diabetes was still there.  It was the normal diabetes routines that got me through day by day.  Forgetting myself was/is a blessing.  There were the highs in “Anatomy of a high,” and lows in “Dear 42.” 

I started of February doing that “Hope thing again.”  In that post I coined the phrase “Hopers gonna hope.”  I was even braisen enough to say that was going on a tshirt.  Of course, one of my talented graphic designing friends surprised me with a graphic which obviously led to T shirts for everyone!  I sold over a hundred at cost to my facebook friends.  Us hopers have to stick together…

I also posted my PSA about Cancer...specifically Melanoma.  If you haven’t read, “This one’s important.” I implore you to take a minute to read it now.  It could save your life, or a loved one’s life.  Read it.  Please.

In March there were rumors upon rumors upon facebook post upon facebook post about advancements and cures and exciting things coming.  I had to put in my two cents in the “Cure-O-matic.” 

At the end of the month I wrote my most viewed blog post in the history my blogging: “Our Diabetic Life in Drawings.”  I think it speaks for itself.

April 1st began with a bang with “The Bloody Truth,” where I explored the many different ways to dispose of that extra bit of blood left on the finger after testing.  Since then we have discovered Diabetic Dabs, when handy, they prove to be very helpful!

Also explored was “Meter Madness,” and the infuriating moments when we realize we have a thousand meters and only two are useable, and even then…only barely.

In May, in honor of Mothers Day, I wrote, “We are the DMothers.”  It is an anthem for us.  We are so often judged on how we take care of our children, I felt we needed a voice.  We don’t need to apologize for how we live.  We are doing the best we can for our children, and we can’t do better than that.

I ended the month recounting my turning point.  After my third son was diagnosed I slipped into a deep depression for about six months.  Ryan’s words helped me break free of that self pity, and put Our Diabetic Life into perspective. 

In June my blog was hijacked and I received “An Open Letter”from a bent cannula.  I later responded with my own letter, except this one was titled “To the Newbies,” and dedicated to all the parents of newly diagnosed children. 

July.  July was everything Friends For Life.  It is the Children with Diabetes convention in Florida that our family had the honor to attend by scholarship.  I was asked to say a few words in the opening ceremonies about a great friend of our family, Dr. Richard Rubin.  I also blogged about our flying experience as we are able to use the “TSA Cares” program.  Click the link to find out more.  And in true Meri style, I ended the month with a big one, refuting the “Tiger Mom Perception,” when it comes to D Parents.

I started out August “Remembering Ryan.”  Which is a silly statement, because I start every day that way.  But I wanted to write down the things I remember most about him.  From his eyes to the way he walked.  Also in August I took another stab at drawing, this time reflecting on “My trip to the pharmacy.” 

September marked one year after Ryan’s passing.  I posted his “Eulogy,” and then I assured everyone that “It’s ok that I’m not ok.”  Grief is a process, and I was confident I was on the path I needed to be on.  In fact I'm still confident I'm going in the right direction.

In October I wrote, “Free to be you and me.”  It talks about judging other people, especially online.  And how easy it is to think we have them all figured out, when in fact…how can we really know unless we spend a day in their shoes?  What is the harm in being gentle when we want to help someone?

Wow. In November I only wrote two posts.  Facebook was blowing up with things I had to say, but I was so busy getting M ready for his new adventure, my blog took a backseat to life.  One post I was able to squeeze out was “A good problem to have.”  It is a trick I use to see things in a more favorable light.  Even diabetes is a good problem to have…I explain it here.

In December I broke out of my funk and wrote three posts.  Ok.  Maybe I didn’t break out.  But it doesn’t’ make this post any less useful.  “Smile” is a reminder that we can still find joy in life even when things are hard.  I have.  And I’m thankful for the little reminders I get every day that everything is going to be ok. 

I made it through 2013 without Ryan by my side.  If I can do that.  I can do anything.

Have a blessed year friends!  Thanks for taking the ride with me and more than anything, for being my friend.  I feel the winds of change blowing into 2014.  Let's do this thang!

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