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Apr 28, 2013

We had a scary, scary low tonight. Third of the day - no, make that the fourth. It's derailed everything - packing for the tournament, baking muffins, cookies, or preparing the coaches' breakfasts. I'll be up quite awhile, but that's okay. I am, once again, too afraid to sleep.

A good friend and mom of a diabetic child shared an article on facebook tonight. An article from a diabetes advocate and blogger who lost her son to type 1 when he was 13. The article, while more of an announcement and celebration, caught me off guard given the timing. Miss N is 13, and the words lost her 13 year old to type 1 diabetes hold more power to stop me cold than Superman or Popeye with a can of spinach at times.

I dread losing my child to type 1 diabetes at any age. For the most part, neither of us goes there - we go about our business, she attends school, plays hardcore volleyball. I work on building my practice, search for a local RN involved in diabetes care to work with and earn my CDE. It's all good, we tell each other in passing. 

Even when it's not. Even when she hates this disease so much that she eats and kind a sorta but not really forgets to bolus. Even when someone at her school sends her to the healthroom on her own sporting a terrifying 43. And that's just it, my psyche screams at the words just typed. They whoever they happen to be in any given moment, DO NOT GET IT - NOT FOR A SECOND because we can't explain it in a neat, tidy little package or logical excerpt. Diabetes, especially type 1 diabetes where insulin is taken around the clock, 24/7/365 without any breaks or holidays, never at the same exact rate as the day or hour before, never in the same amount for food, affected by colds, and stress, and WHO THE HELL KNOWS WHAT simply does not play by any set of logical rules or algorithms. 

Managing diabetes is an art that we attempt to make a science so that our brains feel better about what we're doing, and how well we're doing it. Sometimes we - make that  I - need a reminder of that fact. 

Enter the second scariest low I've witnessed since her diagnosis - the one that took my breath away and hasn't bothered to return it yet.

This illness is about always being prepared. It's about treating symptoms and not numbers. 74 - typically a fair to partially hey that's great kinda number doesn't mean a hill of beans when she can't stand up, her eyes start to roll back, and she isn't make much sense. It's the nervous flutter of "Do I need to grab glucagon, is 4 oz. of juice enough, where the hell is the cake gel...am I really supposed to figure this out on my own?" It's amazing how two tiny little words can be paralyzing... heart stopping.

What if? 

What if I wasn't there? What if I hadn't heard her, or been mad about the cheetohs? What if my anger at the cheetohs (which is really all about D when we get down to it) got in the way of my noticing? What if she hadn't spoken up? What if she feels like she can't, because of who she's with, or what's going on at the time? What if we couldn't find anything to give her - didn't know we'd run out? 

What if applies to seizures  coma, and yes death. It applies to the fear of loss and the guilt of finding myself unprepared. 

We fight constantly to live life in a way that cries loudly of our intent to support Miss N in living her life how she sees fit - diabetes be damned. We proclaim bravely that she can do everything her peers do, with just a little more work. But, it isn't just a little more work... it's a lot of constant, everyday, hard, time consuming work bordering on hyper vigilance. No matter how hard we try, we can't always predict the low, the high, when the insulin needs to get turned down, turned off (briefly), or cranked up. It's the trade off for tight control and the hope that our children will avoid the complications of diabetes that so rob their treasure chest of its quality of life

So tonight I will bake, pray, and check. A tear or two may escape my eye, and tomorrow she will play - beautifully, while I yearn for sleep and keep an ever watchful eye, ever ready to head off another low brought on by exercise. 

But- oh, does she ever love it. And that makes it worth every sleepless second.

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Posted: Apr 28, 2013 12:08am
Apr 6, 2013

Tonight brings a long anticipated, much needed, blissful sleepover away from home - for Miss N that is. That thought, swirling among my fuzzy neurons, buoys them with a sense of hope much needed. Sleep. Uninterrupted, luxurious sleep. God, I need that.

But wait...

Saturday? Crap, I need to change her site. And her sensor. Okay - move it to the morning. What's slightly more than half a day early going to harm? Outside my pocket book, that is.

Damn. She woke up on the low end and dropping steady. Need to delay infusion site and sensor change. Maybe before lunch, right after her hair appointment. I should be able to help with homework, work on the website, get some laundry in, and clean one bathroom before doing that. Right?

Wrong. A low, a high, feeling nauseous with trace ketones. (What the hell was that about?! A kink? Air bubble?) Troubleshoot all of that successfully - whew, being a pancreas is tough work. Now let's get back to that site...

What do you mean it's lunch time and dex shows you're rising steady? Can't your liver be like your pancreas and skip it's job for a bit? Dumb question. I like the life saving aspect of glycogen dumps - just wish they were timed better.

Deep breath. Lunch over, waited 90 minutes for insulin on board to hit its peak, BG 145 and there's still 1.45u active. Hmmm, it's dicey. My mind goes over all the variables. She's due at her friends in... LESS THAN TWO HOURS!! Ack! How will we know if the site's working? The sensor?

Oh no - I forgot to put the load in the dryer. Rats. (Because, right now - this very minute - is obviously the best time to think of this.)

We come up with a plan. Lukewarm shower, timer set to one minute. If I can insert the site in 2m, the sensor in one and drop her off 30m late, we'll know that it's working. Of course, if it fails, we're sunk. If it kinks... oh the horror. Guess I'll cross that bridge when we get there.

Wonder what the rest of my to do list looks like...

Nothing else is checked off.

And that is a day in the life of a pseudo pancreas. In fact, it's a relatively mellow, not so bad day in the life. Guess I wont' be sleeping uninterrupted tonight after all. Miss N will have to text every two-and-a-half to three hours until we're sure Dex and Lola are working together (CGM), and that her site's flowing nicely. Maybe next time.

I guess I can catch those last two episodes of The Walking Dead. At least I know that will keep me awake, and I might get to enjoy a glass - make that half a glass, of wine.

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Posted: Apr 6, 2013 4:32pm
Mar 16, 2013

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Posted: Mar 16, 2013 4:08pm
Mar 5, 2013
A cure. The end of diabetes. The idea that my child might gain a reprieve from this disease. These symbolize things and ideas I not only refused to believe in - but something I challenged Miss N's endocrine doctor over on Day One. She had it coming - she used those infamous words... right around the corner, and five years. Day one, and I immediately recognized those phrases, and the underlying notion, as a bunch of malarkey. 

Not that I subscribe to a pessimistic viewpoint. I just don't believe doctors have the right to give false hope, or to take a patients hope away. Between my journey towards a degree in Molecular, Cellular Biology and my work as a registered nurse in acute care and hospice, I've seen plenty of both. In the two years and a week since diagnosis I've learned that patients living with type 1 diabetes for 30+ years suffered that refrain from their own Day One, and again and again as the years, then decades, passed by. 

My take on the idea of a cure encompasses supporting research, but not getting too excited; keeping our focus on healthy management and learning to live with D without letting D take over. I don't lack faith in a cure someday, but doubt that one in my child's lifetime proves unlikely. Until yesterday...

I read a post by Diabetes Dad over on his blog. It create some level of curiosity. At 10:08pm last night, while attempting to keep myself awake for the next BG check (unplanned new pump site - at bedtime, a not so great idea), the promised DRI link went live. Of course I jumped on it. 

Wow. I read. I cried. Keep in mind, I'm the quintessential don't talk to me about close loop pump / cgm systems, I'll never trust an implanted machine to do all the thinking / analyzing / work kinda gal. In fact, I pretty much expect that what we're doing now works, for the most part, and I don't expect that to change in her lifetime - at least not before Miss N reaches senior citizen status. Last night? That changed. 

Words like impressive, possible, not that far off swim through my mind. I admit to some level of surprise at the lack of enthusiasm bordering on anger I've encountered within the DOC by this latest we're close to the cure revelation. More so, I'm surprised at my own sense of hope in light of the news release. I truly believe that a cure is now possible, and not necessarily that far off. 

The research scientists at the DRI have proven their sheer genius - and an uncanny but much needed ability to collaborate and work multiple avenues towards a true biological cure - and the BioHub really is just that. A bio-engineered, (perhaps some component of nanotechnology) mini organ with vascular support and the appropriate helper cells to ensure viability. 

See, that's the problem with islet cell transplantation right now. Not only is it cost prohibitive at $250K / transplant, and a life time of anti-rejection therapy - something we can't even begin to contemplate for our youth. The islet cells in transplants don't last - the autoimmune process that attacked our child's pancreas in the first place attacks them, lack of oxygen, inflammation caused by seeding them into the liver - all these things place a finite time on the bio-availability and functionality of islet cells following transplant. Available only to those between 18 and 65 who struggle with the hardest to control cases of type 1, islet cell transplants involve trading one set of problems for another. Kim White does an amazing job of sharing the realities in her own blog

The folks over at DRI address all of that in the various approaches to the biohub - including the possibility of local versus systemic anti-rejection therapy, encapsulation that will protect the islet cells from autoimmune destruction, placement in an area of the body that would provide a rich vascular supply (oxygen and nutrients.) This isn't mere theory, or testing in animals, this is years of work by multiple scientists and research centers coming together and converging in what will likely be a true cure. Imagine implanting a device no larger than a quarter, and no longer needing insulin to manage blood sugars!! 


picture courtesy of DRI
One thing is for sure - everyone in the DOC is talking about this today, regardless of whether they trust this new avenue of research, feel it's another empty promise of 5 years, or share my excitement and enthusiasm. Nearly every DOC advocate and blogger has written about it sometime in the last 18 hours, and more is sure to come. Personally, I like the A Safe House for Islets  article best - especially from an informational standpoint. I find it of great comfort that Dr. Camillo Ricordi and others involved in this project want to avoid raising false hopes or promising timelines they can't meet. Their goal remains developing an accessible cure for millions - not a mere stop-gap management tool or sort of cure for thousands. 

The reality is that the DRI has achieved FDA go ahead for research and development, with human trials only one to two years off. Nothing we've heard about with the mice and other potential cure research avenues has reached this milestone - until now. (Personal disclaimer, I don't regard implanted closed loop pump / cgm systems a cure, but rather a more invasive maintenance system.)  And for once - I feel a genuine sense of hope about the possibility of a cure for type 1 diabetes.

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Posted: Mar 5, 2013 12:08pm
Feb 12, 2013

Brother Bear lives for sports; eats, sleeps and breathes basketball. The amazing amount of work and effort he put into making the freshman high school team forces me to look at my own fitness journey, and wonder at his committment in awe. Already, he is working hard towards developing needed skills for a second attempt next year, for a chance at a spot on the even more difficult sophmore team. His tenacity and committment bring tears of pride to my heart.

Brother Bear fought hard to get here - harder than most realize. The head injury that turned his life upside down and inside out just two years ago inserts itself into his life in insidious ways, but he just keeps getting back up. Read this, write that, memorize this - all taks we've encountered in our own school journeys, but not through the hazy fog that continues to mire cognitive processes like so much pea soup. He never complains, just works harder, longer, quietly for things that once came easily, yet still emerge with a depth of brilliance and understanding. Slower does not equate to less smart. How I wish his teachers could truly grasp that concept. This kid is amazing, and not so much a kid but a young man becoming. Surpassing. Persevering.

He currently plays in a prep development league. Part of his plan to continue developing skills and pursue his passion. Games run every Monday night, right alongside my work with clients, so I've missed nearly every game. I love to watch him play, and worry less when I'm alongside his team. It's silly, I know. I just dread the call, the words. I hit my head again tonight. Which he did - last night. Heart stopping. That's not a phrase - it's a condition, a reaction, a moment of pure fear that immobilzes one's chest as it did mine. I hit my head again. Again.

Breathe. In. Out. Count to five, and breathe again. Listen.

He's okay, I tell myself. They have trainers, assess for concussion these days; pull kids from play until there's no question. He's okay because he believes that to be true. Because he makes it so. Because he's tenacious and accepts no other reality. He has goals, and intends to reach them; to see his vision take shape. My job is simply to trust; act as if, and to be there. Always ready wtih support.

We had a date last night. A date to work on math, which we did. I saw it, heard it - the struggle, the hurculean effort. 2 + 2 = 5, right? No wait, it's not. I got this. We waded through the hall of mirrors, the distorted images and twisting tunnels and tackled pythagorean triples, pythagorean theorem and its converse, geometrical proofs, parallelograms, triangles, area...

Homework often takes double time, even triple. Brother Bear never rests on his laurels. He works hard, and at times still comes up short. His brain heals slowly, and he refuses to cut corners or make it the central thing in his life. He is a teenager, basketball player, himself first - all the rest can get in line. Head injuries, post concussive syndrome? That stuff can sit on the sideline and wait; he gives it its due attention. And, he quickly moves on - to the next bigger, better, more important thing in his life.

Me? I sit back and remind myself. Sometimes, even momentarily, 2 + 2 really does equal 5. Just for the moment it takes to show us the miracle of being. Of persevering. Of quietly rising to the challenge and moving far beyond - not for the recognition of overcoming obstacles, but for the beauty and gift of knowing, intenally, I gave it my everything. Which he did, and always does.

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Posted: Feb 12, 2013 12:08pm
Feb 11, 2013
Say A1C in mixed company, and you're sure to get a few perplexed looks. Say it in a room full of type 1 diabetics and you might catch a few groans, a few questions, or possibly no acknowledgment at all. HbA1C, a lab test known as a hemoglobin A1C looks at average blood glucose over a span of time - typically about 3 months, though I'd personally have to say it's a weighted average, but I digress. Think of it this way, if a blood glucose check with a meter is a snapshot, then an A1C is like a panoramic photo.

The familiarity of this term in the DOC can elicit undertones of dread and resentment, or beams of pride - which is to say we often turn the quarterly A1C into a report card on just how well we're managing diabetes and blood glucose trends. That last is particularly true of us D mamas, even when we try like crazy to avoid doing so.

Miss N, my lovely, days shy of turning 13, full of life (but currently hates D with a passion) daughter just had one of those visits where we could have turned her amazing A1C into a brilliant report card - except we didn't want to. In fact, we both walked away feeling like that fault lies with her care team. And we weren't happy with or impressed by it.

You'd be hard pressed to find someone in the DOC who can't relate to or hasn't heard the phrase look at the patterns, not individual numbers. For us, it's become a mantra these last three or four months. That's how long we've been troubleshooting excessive morning, afternoon, evening, and nighttime highs. What's that you say? Oh, right - excessive highs all ding dang day long - interspersed by random inexplicable lows. Inexplicable because I am absolutely anal about avoiding stacking insulin with corrections.

Yes, I admit it. I fiddle - a lot. Every single week I sit down and look at her glucose patterns, her basal rates. I even created an excel file where I can overlay the two and quickly identify areas where we need to raise or lower basal rates, tweak insulin to carb ratios, and wonder if her ISF is accurate. We're still just shy of two years into this journey, and it's all too easy of late to get frustrated and feel like giving up. Except I can't - because she's my daughter, this is her life, her health and livelihood - if I'm going to get frustrated and give up just two years in, what does that say to Her? What kind of example does that provide? Not a good one, that's for sure, and in the end - I don't have diabetes, my kid does. Simply put, parents DO NOT give up on their kids. Not ever. If she can rock this diabetes thing (and she does), then I can manage the number crunching regardless of the inanity of it all.

For the first time in a long while, we approached her quarterly endo appointment with a mixture of dread and desperate hope. According to the various software programs we use, her predicted A1C this time around kept coming up around 7.9 - one program put it at 8.2, a rather huge jump for Miss N, but not outside the realm of possible or even expected. In the last three months she's experienced her highest highs (500+) and lowest lows ever (39, technically not her lowest, but the 24 was entirely my fault one week into this mess. We won't go there.) Miss N can rock the square and dual bolus, knows how various foods and exercise effect her body and glucose level, but the last 90 days would have tried even the patron saint of patience. So we looked to the center and her care team for answers. As we left for our nearly two hour trek, I sensed we both saw this visit as our last salvation from a never ending nightmare.

How wrong we both were. Miss N's A1C in question. An inexplicable, unwarranted, and truly mind boggling 6.4

WTF?!

Despite the fact that our visit lasted more than two hours, despite the patterns reflected in graphs, the logs, and our desperate plea for help, all we heard - over and over again, was what an incredible job she (and I) are doing in managing her diabetes. Huh?

That A1C makes no sense alongside three months of logs, graphs, and various printouts. I suppose we could have just soaked up all the praise, gone along with everyone treating that stunning (I mean mind blowingly inaccurate) A1C as some sure sign of success. At some point the PA realized we weren't on board with all the celebration surrounding this single, simple number. 6.4 - what does that even mean? How is it possible? Do you not see the never ending string of 300+ values on the two week record sitting in front of you? So the celebration turned to chastisement.

You really need to stop perseverating on a single number. You need to look at the patterns, not the numbers. We're not going to change anything, that A1C is just too good. Ah, hello? Did you not just say - a hundred times over - to look at patterns rather than a single value or number?
That's all 6.4 is - a single number. It could be a lab error, a mix up (there are a handful of other kids being seen simultaneously); heck, it could be accurate, but then please explain to us how that is possible in light of the patterns we've set before you.

By the time we got home, Miss N was in tears. The help we so desperately craved - relied on, expected. It didn't exist.

The message they sent us out the door with appears to be the message our care team need head more than us. It's just a freaking number, and by itself it is meaningless. My child is not a single number - she isn't even just a diabetic. She's a (nearly) teenage girl struggling with feeling miserable, and desperate to achieve glucose trends that don't leave her feeling lethargic, nauseous and unable to see due to blurry vision and headaches. Anything greater than 170, and that's how she feels. It's wretched, and my heart breaks to watch her Herculean effort to contend with that, stay up on homework, and give 110% to volleyball.

At her request, I'm looking for a new endo center - but even that is a bittersweet task. She's seen by an endocrine doc at what is supposed to be the Golden Standard for pediatric diabetes care. I know it's usually us parents of CWDs that need the reminder, but today I'm shouting it from the rooftop and hoping like mad that every endocrine doc can hear it. An A1C is not a report card. It's a single, simple number. It fits into a context, and is but a small part of a much larger picture. Even more than that, it does not and never should define my daughter or her worth.

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Posted: Feb 11, 2013 10:21am
Dec 16, 2012

Brother Bear shared this with me through his facebook account last night.I watched the video just moments after reading this post I am Adam Lanza's Mother by Liza Long.



The video is powerful and inspiring. The article gives a beautifully haunting account of our children within society's fear of and refusal to acknowledge, accept, or treat mental illness. I know the story, and Ms. Long captures the intensity of living with a loved one suffering from mental instability - instability that persists despite a heartfelt desire to change, and something medications fail to address.

Mental health does not, cannot, come from a pill. As a society we continue to ignore the increasing incidence of anxiety, depression, mood disorders, etc. Worse yet, we continue to ignore the stigma that mental illness carries. I know this stigma well. I've struggled with depression most of my life - not pick yourself up by the bootstraps, garden variety depression. Not a simple chemical imbalance, here this pill will fix that. No - debilitating, paralyzing, mind numbing and heart breaking depression that makes life feel... impossible. That makes fear feel insurmountable. Depression that invites soul crushing anxiety, and the illogical white hot anger flash that is both frightening and without logic. Who knows why - maybe I was born with it, maybe it's due in part to assaults I've endured, abusive relationships, or (and I know this to be true) the damage wrought by pills thought to cure this kind of depression. (Hint, they didn't, and instead made it worse.)

For a long time, it felt as though depression robbed me of my livelihood, of my future. And I'm lucky. I managed to meet a few amazing souls who helped me learn and develop tools to manage and maintain my mental health. Tools that help me step out from the paradigm of victim that it is so easy to settle into. It takes work, never ending work and effort to maintain - work that would likely be less burdensome were resources available. That, however, would require that we as a nation talk about Mental Health, acknowledge it as a priority, and begin the hard work of asking what about our lifestyle, health, culture influences that potential to develop or manifest mental dis - ease. My belief, or educated guess, is that there is much within our society, within the rapid paced, multitask oriented, stress filled daily routines - that fails to support mental health or fosters that dis-ease we are so afraid to acknowledge. Which brings us back to the video Brother Bear shared with me.

Our children, particularly our teens and preteens face so much pressure today. Most especially, they face mounting pressure to think about the money, about careers, schools, the increasing level of competition to attend college, rising costs of tuition, the demand that they choose to be something competitive with our world neighbors. Brother Bear entered high school this fall, and for months the conversation about grades, effort, gpa centered on the impact these have on his future. On his desire and ability to attend college, on his ability to enter certain professions, or worse, his ability to make a livable income. Like Brother Bear, most incoming freshman are 14, maybe newly turned 15. Rather than focus on building positive Habits of Mind, a sense of self, and life affirming attitudes / choices, we thrust upon our children the idea that success of failure now has the ability to determine their life's course. I remember facing the same mounting stress, and see it in the faces of the young becoming adults that I work with.

Our teens feel beyond overwhelmed. We've managed to create a sense of fearful anticipation in much of our youth, and it begins long before high school. Miss N can attest to that. What math course, how well you perform, and whether you remain in the advanced track in middle school determines where you land in high school, determines the post secondary school graduation options available to you. On and on it goes.

Yet we regard the increase incidence of Mental Dis- ease with surprise? This doesn't even acknowledge the emotional, mental toll of growing up in single parent households, or homes where parents are forced to work multiple jobs and still fail to cover the bills. It fails to address the influence of high stakes testing environments that serve to gauge our youths ability to withstand stressful situations far better than their academic mastery. We do that to them starting at 8, and as a nation of championed standardized testing as early as kindergarten.

The video Brother Bear shared asks possibly the most important question - What if? What if money didn't matter? What if our nation's youth focused on developing qualities and attributes that truly mattered? Check out the Habits of Mind program, think hard about the value of pursuing that which you are good at, verses the pursuit of a bank statement and assorted material objects. What if we promoted the ideals of balance, emotional, physical and spiritual health? What if we allowed our youth to forge a new path, one free from contrived stress and filled with innovative solutions and approaches to the future?

Yes, as a nation, we do need to hold a conversation about the state of our nation's mental health. Included in that, we need to openly and willingly consider how we foster health and dis-ease. Our children deserve better than we have to offer. In the words of Einstein, the definition of insanity is doing the same thing over and over, expecting different results.

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Posted: Dec 16, 2012 12:08pm
Dec 9, 2012

It's December, and Christmas is - hands down - my favorite holiday. Always has been, and always will be. If not for Christmas, I doubt I could have survived vast stretches of my childhood, or Hell Year for that matter. Hell year referring to the school year in which Brother Bear sustained his head injury, Miss N gave up her appendix (a worthy trade off considering the tumor that decided to claim it as residence), learning she had type one diabetes, and ultimately losing my teaching contract in the face of all that time off.

That Christmas our furrever friend Suki joined our family, now such a permanent and much loved fixture in our lives that none of us remember life without Suki. That Christmas also marked the year that the youngest of my children chose to stop believing in Jolly Ole Saint Nick. My heart broke at the declarative announcement. Religion aside, the greatest gift of the Christmas season is the larger than life sense of hope, of a belief in the miraculous, and the faith that miracles happen to everybody - even you and me.

When my son questioned the existence of the Jolly Old Elf, I shared an experience most adults choose to scoff at - not my Gramama. She was with me, and for years after confided her own adult belief in events that took place when I was only three. My parents moved to Denmark, and Gram had come for the wedding and extended visit. Walking through the shopping mall blossoming with winter decorations, I noticed a smallish man standing under a rather short Christmas tree. Funny looking little guy was dark, dressed in unusual clothing, and winked at me with a shush, then vanished. Call him a Brownie (that's what the Danes said) or an elf, but I saw him - the child still exuberantly alive in me jumps and nods emphatically as I type this. My mom, as all good mother's do, played along with my perceived flight of fancy, but not Gram - every Christmas from then to her 96th and last she quietly acknowledged that special moment we shared. And, it's colored every Christmas since - whether our family could afford gifts, the bare bones, or something in between. Christmas always carries a sense of magic.

Of course Brother Bear thought I was joking or pulling his leg. Our talk led to words and ideas that carry far more power and feeling than most. Words like love, hope, namaste. Sit quietly for a moment, breathe deeply, say a word like one of those and you'll likely sense something, an undercurrent of power. For me, both the words Christmas and Santa - the very ideas, hold the same promise of power, energy and magic. This time, more than any other, the quiet unconditional gifts of life, love, joy and light enter our lives and lift our spirits - so long as we let them. Seven years later that talk continues to hold an undying special place in both my heart and my son's.

Miss N and I had a similar conversation two years ago, though not with the same outcome. Perhaps it was the difficulty of the year we'd only just begun to endure, or her own unique outlook on life. Whatever the reason, her acceptance of my explanation fell flat.

Imagine my surprise the other day when she asked, once again, Mom - do you really believe in Santa? Yes, honey, I really, truly do. I believe in the active, living Spirit of Santa.

I've studied the myth behind the man; the story of the real Santa Clause, and the events that led to our modern day image of a man who delivers toys. Those children then had nothing, not even toys to play with, and the man on which we based the legend gave them everyday objects somehow made magical that created joy, laughter and a sense of hope in their possible futures. No matter what any adult tells me, the spirit of Santa Clause endures. Year after year, Christmas miracles - without any explanation - come to pass. Sometimes in our lives, often in others, but always with a sense of magic, mystery, love, and in a way that fosters a greater sense of hope.

I've thought long about why Miss N asked me this the other day. It's been a rough two years. I'm still navigating my way through the loss of a career for which I carry a great sense of passion, and through my attempts at becoming an entrepreneur and directing that passion toward helping children in another capacity. We've all been forced to exercise faith in a tomorrow that it is sometimes difficult to believe in, and in the months leading up to this Christmas I've had to share difficult news about where things stand for us.

Even so, our hearts are filled with excitement and anticipation. The tree is up and decorated, Christmas tunes fill our home, and we busy time not spent in the mundane but necessary everyday tasks with making gifts for family and friends. There is a pervading sense for each of us that this year the season offers not only peace, but necessary healing. In a way, Santa's already visited our home.

May your holidays be equally filled with Love, Light, and Laughter

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Posted: Dec 9, 2012 10:08pm
Sep 12, 2012

In the lead up to walk season this year, Miss N and I have had countless discussions about which walk to support this year: JDRF Walk for a Cure featuring Team Notorious for a second year, or the ADA Step Out Walk to Stop Diabetes. Initially, the thought was that we'd walk for both and support one with fundraising efforts, but D had other ideas, and suffice it to say, I'm glad she chose to support the ADA since we completely missed the JDRF walk. That's just the way life is sometimes.

Personally, I like the message of the ADA title. I don't want to walk for some obscure, might be here in five, might be here in fifty years cure. I want to do whatever is necessary to stop diabetes in its tracks here and now - whether that's through a cure or better treatment strategies until a cure can be found. And frankly, that's why we walk. No matter how hard we try to manage her numbers, maintain tight control, and not allow diabetes to interrupt daily life it simply does just that.

This week marks Invisible Illness Awareness Week, and I've seen numerous posts talking about diabetes, particularly type 1 and similar variations (type 1.5, LADA, monogenic, etc.) Fact of the matter is, no matter what type of D you struggle with, it's still invisible until you have to do something about it, like prime unwelcome bubbles out of your tubing, give a quick injection of insulin, test your glucose level, or perform mental gymnastics math before consuming a meal. Miss N pointed out that most illnesses are invisible when you really think about it; Autism, cancer, learning difficulties, lupus, heart disease, traumatic brain injuries, and the list goes on. She's not so sure we need an Invisible Illness Awareness week so much as Be a Basic Human and Practice Acceptance Week. I really can't disagree with that statement.

She doesn't mind the times D is invisible, and honestly has times when she wishes they'd hurry up and invent an invisible meter and  test strips already. The way some kids stare! It's unbelievable, and really it isnt just the kids either. Funny thing is, she's not that private about D. If you just ask she'll tell you what she's doing, why, and be incredibly brief about it. I've watched her talk to toddlers on up to elders in the grocery store. Man, in two minutes flat that girl has the basics out and people asking polite questions. No, it isn't the invisibleness, or even visibleness of D that she minds, it's the stares, the unspoken questions, the misconceptions that lead to negative judgements about her character that bother her. So, yeah, I get it.

Diabetes takes more work than anyone not coping with the illness can ever begin to understand. As a parent of a PWD I sometimes lapse into thinking I've got a good understanding, but I get my reprieves, and people don't judge me... well, at least not as often. Diabetets interferes at the most unbelievable and unexpected moments, and contrary to the lay person's belief - no, we can't control that. We certainly try, but it's about as successful as someone claiming they can control the weather. Okay, maybe it's a bit better than that - somedays. Others? D likes to remind us both that it can cause swings and dips in glucose level without warning, rhyme, or reason.

Miss N takes her work managing D very seriously. She plans ahead for school days, gym, volleyball, basketball or swim practice. She adjusts carb consumption, carb ratios, basal rates, and checks in with me when it gets overwhelming, which at 12 can be fairly often. She texts me everyday at lunch with her BG, insulin dose and how she's delivering it, any time she has a low, and when she wants snacks. Both her friends and family get irritated with her for the lack of spontaneity, the time it takes to plan, count carbs, wait out a low - and they don't even see all the behind the scenes stuff we try to take care of ahead of time. She's a sporty kid who'd never, ever carry a purse unless forced to. Oh, wait - D kinda forces that, too. Her school won't allow kids to carry around any sort of pack, not even a mini one - and she has to carry her meter, strips, juice or fast acting glucose, and a couple snacks. She keeps an extra set of tubing and reservoir handy at school, but out on the town she adds those, extra insulin and glucagon to her purse. Her bag is heavy and barely has room for anything else.

So, when people either fail to see and acknowledge D, see but refuse to ask about it with their voices, or assume it's just not that big a deal... When they assume it's something she brought on herself with diet, or dismiss all the work and interrupted sleep... When they get irritated because D's making them have to hang on a quick sec, that's when she sees the need for a week like this one. It has little to do with invisibility, and everything to do with practicing some understanding, some acceptance, some basic human kindness.

And this is why we walk - because the work never, ever stops. Because people look at her and have no idea how hard and constantly she works to be just like everyone else, to enjoy the same quality of life, or at least strive for that. Because, without your knowing or understanding it, the interrupted hours of sleep to treat a low, manage a high; the missed days and time it takes to play catch up in the face of roller coaster glucose levels, all add up and take their toll. And neither she nor any of the countelss diabetics that we know will stop and feel sorry for themselves or complain. (Sure, they have bad days, but they don't take it out on others and are ever wary of using it as an excuse) No, they pick themselves back up and carry on, hoping ferverntly but ever so quietly for a cure, and between now and then, just a little something to make the work easier, better, safer.

This is why we walk,  and we'd love to have you join our team.


Just click on the image to join our team #@%! Diabetes on October 20th.

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Posted: Sep 12, 2012 1:34pm
Jun 28, 2012
(The following quotes come from CNN, located beneath their article on the Supreme Court Decision on the Affordable Care Act.) 
Mitt Romney, presumptive Republican presidential nominee
"What the Court did not do on its last day in session, I will do on my first day if elected president of the United States, and that is, I will act to repeal Obamacare. Let's make clear that we understand what the Court did and did not do. What the Court did today was say that Obamacare does not violate the Constitution. What they did not do was say that Obamacare is good law or that it's good policy." 

Romney fails to acknowledge that it isn’t the supreme courts place to rule on whether the ACA is a good law or good policy. Numerous independent agencies have written pages on the benefits or lack thereof, and anyone can take the time to read, analyze, and come to their own opinion on the matter. Sadly, too many people rely on agencies like CNN, Fox, etc to tell them how to think, often obtaining skewed and inaccurate information on the impact of the ACA on the public.  

 House Speaker John Boehner
"The president's health care law is hurting our economy by driving up health costs and making it harder for small businesses to hire. Today's ruling underscores the urgency of repealing this harmful law in its entirety."

Speaker Boehner goes a step further than Romney, obscuring the fact that a ruling finding the entire law unconstitutional would have done more to drive up costs, and harm businesses or the economy. The fact is that small businesses are largely eligible for waivers for the mandate to provide insurance (it only affects small businesses with 50 employees or more) and the subsidies created by the law help those accountable for providing insurance, or needing to seek individual insurance through the health insurance exchange.

 Senate Minority Leader Mitch McConnell
"Today's decision makes one thing clear: Congress must act to repeal this misguided law. Obamacare has not only limited choices and increased health care costs for American families, it has made it harder for American businesses to hire."

McConnell, like Boehner, makes assertions unproven by fact. The options available to families have increased, and will continue to do so through the full implementation of the law through 2015. The coverage of larger numbers of young adults and families, with improvements in preventative care will actually serve to save our nation unnecessary health care costs. The fact is that the uninsured and underinsured most often wait until their need for care becomes so acute they must seek services via emergency and urgent care departments. At that point of care, the medical interventions, diagnostic tests, and medications needed are far more costly than early detection, treatment, and prevention will ever be. Conservative leaders, including those above, simply refuse to factor that into the anticipated cost of implementing the ACA.


My own family contends with not one but four different chronic and / or autoimmune conditions. I simply don’t seek care for my own, and barely cover my type 1 diabetic daughter’s expenses, even with Medicaid coverage, namely because many of the supplies and tools are simply not covered by Medicaid. I qualify for bankruptcy as a result of the medical debt I’ve carried (and continue to add to) for over 20 years, should I ever be able to afford such an undertaking. (Don’t read this as I want to – it’s a need, but I digress.) For the first time since I received the first significant medical diagnosis of a chronic illness at the age of 17, I am filled with a sense of hope. Hope that I won’t be forced to add to the mounting medical debt, hope that I might gain a greater quality of life through adequate care.


I don’t believe that the Affordable Care Act answers all of our problems, or provides the best solution. That said, it provides the greatest step towards better, more affordable health care seen in our nation’s history – a fight that is not new. (Truman and his wife championed national healthcare, and he signed the International Declaration of Human Rights, which lists access to health care as such a right, in 1938 on behalf of our nation.) Perhaps more helpful to understanding the benefits of the ACA is to read one doctor’s account of what would have happened had the Supreme Court ruled the entire law unconstitutional. Despite the fact was written for doctors, before the decision was handed down, it helps to highlight just a few of the positive changes. Kevin MD’s blog article is located here, and I encourage the unconvinced to read it. http://www.kevinmd.com/blog/2012/04/chaos-doctors-affordable-care-act-struck.html


We are not done with the fight for truly accessible health care, and between now and 2014, those of us contending with pre-existing conditions, underinsurance, and unfair caps on coverage amount face ongoing challenges. Personally, I cannot wait for the creation of the health insurance exchange and the ability to purchase truly adequate coverage for my children and I, or for the opportunity to seek medical interventions I’ve needed for over a decade. I know so many people, friends and past patients or their families in similar situations. Too bad those like Romney, Boehner, and McConnell are too busy with political grandstanding to understand the future harm they’ve promised to unleash on our nation’s citizens. Then again, they have no idea what it’s like – they and their families already benefit from better health insurance than enjoyed by the majority.

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Posted: Jun 28, 2012 1:44pm

 

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Kirsten N.
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