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16 December 2012

Tragedy and Hope - Becoming the Change we Wish to See in the World

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.

09 December 2012

Mommy, do you really believe in Santa Clause?

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

12 September 2012

Why We Walk

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.

28 June 2012

Thoughts on Opposition Responses to the Supreme Court Ruling on the ACA

(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.

08 April 2012

Happy Easter Mom

The video basically speaks for itself. Happy Easter to all who celebrate, and happy Sunday to those of other faiths.

And now, to brag about my kids...(the fact that I recorded myself, and went through with publishing, speaks to the greatness of this brag.)

The kids contributed to each other's baskets this year, and Brother Bear also put together the coolest scavenger hunt for Miss N to find her basket. Seriously, he utilized every level of our town house and most of the rooms. He's brilliant with this stuff! If you ever need a great scavenger hunt for your kids birthday party, you should hire him.

Taking a Plunge & Doing the Unthinkable

     Several things happened over the last week. Miss N's new pump failed in her first week of pumping. Nope, not joking. It didn't record a bolus, but she very clearly receive it, and more. In less than 2 hours from lunch she went low, disconnected for over 2 hours, & only came up to 102. Unbelievable.
There's the sleeping through a night check alarm (far too common lately)I blogged about. I still shudder at finally waking to blaring alarms, a BG of 59 and stone cold, dead weight daughter. Could not budge, wake, get her to drink in her sleep, or even pry her lips open for cake gel. 
     You know how people talk with their hands? I also think with my hands, meaning one hand was in her kit rummaging for glucagon and cell phone in the dark, the other touching and attempting to open her lips. Poor kid, she jerked, squealed in disorientation, and finally grabbed and sucked down two juices without word. Thank. God. 
     After that, I helped troubleshoot another two lows during the short half day, but it's the after school that kills me. Sitting in the car, I just had a feeling. Momtuition, you know? I called her even though volleyball had just started 15 minutes before. N answered on first ring, and sounded down right confuzzled. Why was she sitting on the gym floor, oblivious to careening volleyballs and shrieking sixth grade friends? Probably the 58 on her meter, followed by juice, fruit strips and... dog nab it, another 59. When I say out of it, I mean walking in circles, repeating half sentences, and the teacher turned full time pancreas (me) suggesting we leave her backpack and homework at school. 
I promptly emailed her PA at the endo center, but apparently her numbers look grand - no changes. Are you kidding me?! I've suspended her pump multiple times to deal with lows. They persist, proving hard to treat. How is this grand? 
So despite the hate mail I continue to receive for my apparent audacity at fund raising for medical expenses, we're getting the CGM, and we're getting it now. Fund raiser is only half way there, but I'd rather not eat in addition to not sleeping myself than risk the unthinkable. That's 36 lows in the first week and two days of pumping. They haven't been the lowest of the lows, but they've proved the most symptomatic and scary. 
Now to figure out how we're going to hear those darn alarms. It's no longer possible to purchase a stand alone Guardian. If we want a stand alone, it's MySentry or nothing. That's a bittersweet note.  Guess I need to up that fund raising goal, or figure out how to work multiple jobs at one time. 

05 April 2012

Misty Eyed Muse

     Last night I was up more than half of the night. I'd slept through an  alarm and woke at 2:30, angry at myself for oversleeping the first night alarm by an hour. I tested and found N's glucose level at 59. It was nearly impossible to wake her and get her to drink juice - scary in an of itself. I waited the requisite 15 minutes, retested, and she was still low so we retreated. We repeated this process over the next 90+ minutes. Juice, chocolate milk, more juice... I'm surprised she doesn't vomit on me when this happens. Each time she would go back to sleep, while I tried to keep my eyes open with facebook and cleaning - never moving far from her side. Finally, at 4:30 we got a reading of 111, and while lower than I'd like for a night time reading, acceptable considering my realization that wake up time was only 2 hours away. Of course, I slept through that, waking the kids with 20 minutes to ready themselves for the day.
     This could not have occurred on a worse day. It's only our second day back from Spring Break. Yesterday the kids arrived late because we had to change the insertion site for her pump. It had started peeling off, crazy since we'd just hooked Miss N up to the replacement pump we received the day before. She finished it off by day's end accidentally ripping the site out with her arm tangled  in tubing. The day before that, the original pump failed to record a bolus but clearly gave that insulin and more. Miss N kept dropping low, then lower, and still lower until I called it in.
     Meanwhile, Brother Bear appears sullen, angry, left out, unhappy. He routinely caves himself in his room, expressing distaste for the healthy food varieties that adorn our plates and trigger sensory overload nightmares for his taste buds. I know, internally, that it's normal for him to resent the time suck D represents in our lives at the moment, and even though it won't always be that way, right now (for whatever reason) it is. Yes saline start and pump start consumed spring break. Yes, 26 lows in four days is a lot, and it's not fair that activities were rescheduled then ultimately cancelled due to the perseverance of low blood sugars and potential for more if we'd gone through with our plans.
     It's understandable. That doesn't make being raged at bearable. It doesn't make him feel any better, and more often than not, it makes her feel worse. As if her brother blames her and not this disease.
     I want to rage at the world, scream out loud that I hate diabetes. Four, five months ago, it wasn't this hard, but since then she's been growing, maturing. I hit my sleep deprivation limit, and simultaneously hit the bottom of my wallet. I'm not the first parent to lose a job when my kids were sick or injured, and I'm certainly not going to be the last D Momma to lose her job, only to later think it's the best that could have happened at the time. All I know right now is that I want to scream, cry, take a break, and then reality hits me - some day, I can do just that. But not Miss N, not anyone with type one.
     I know what we need to help us through this difficult time. I just don't know how to make it happen. Not any of it. I need sleep (good luck with that.) We need the CGM (we halted at 46% two weeks ago an haven't budged since.) I need a new outlook, perspective, attitude - whatever you want to call it. (That's the hardest, yet. This disease can take my daughter's life in a heartbeat - just one really low low, combined with me sleeping through that stupid alarm, and she's gone. For some, it seems a remote possibility, but with all her night time lows that do not wake her up? I can't live with that. (Note to endos, not that they're reading or ever will read this - pleases stop telling us new parents that night time lows will wake our children - they do not!)
     Yes, I need to build a new perspective. I want to celebrate all that my children are and have overcome. They are truly amazing, inspiring, incredible young adults in training. I love them with all of my heart, and my heart aches over all the hurt that fills our home today. But I can't scream - the torrent held back by the choke hold on my throat won't allow it. So I move forward, act as if, misty eyed.
  The muse of inspiration, always at my side, once again helps me process and begin the work of letting go. Perhaps sleep will reset this poor outlook. Oh, and a muse of fundraising - I could use her too.



24 March 2012

CGM & Miss N, revisited

I once posted on this blog about the importance of access to CGM (continuous glucose monitoring) for all type 1 diabetics. I shared the frightening string of lows she experiences at night, and how little sleep I manage as a result. Since then, we've been fund raising for this much needed (and very expensive technology). For those of you who know me, you know how far outside my comfort zone this whole idea takes me. Then again, the idea of losing my daughter to a hypoglycemic seizure or coma sits so much further outside that comfort zone, it belongs to another universe entirely. I'll do whatever I need to to ensure that doesn't happen.

Before diabetes, a term Brother Bear both loves and resents in one breath, I mostly blogged about health care in our country. Most of my friends know I've long been a proponent of nationalized health care, and resent the fact that the size of one's pocket book determines their right to quality health, pain relief, and routine care of chronic conditions. My first trip down the road of cancer came at a mere 21 years of age, largely because of the negative effects of poorly managed hemorrhagic cycles resulting in a stroke at the age of 17. My pocket book never really had a chance at growth having started out on the runt end of all things medical. I've worked as a volunteer advocate, as registered nurse, as a teacher in title I schools, and have come to recognize first hand how the barriers to basic care, prevention, or treatment of chronic illness serves as the foundation of so many other problems in our society. Heck, as a single mom, I've lived it. All three of my children have autoimmune illnesses, and I still struggle with my untreated back injury from five years ago.

I've lived with the consequences of not being able to treat illness, but diabetes presents a consequence with which I cannot live. Untreated, diabetes means death. Sure, insulin is the life saving part of that equation, as is knowledge about eating a healthy, balanced diet, and how to count carbs, etc. That said, there are important tools that factor into know how much insulin to give - because insulin is an incredibly dangerous drug. Tools like blood glucose meters, insulin pumps, and yes - a continuous glucose monitor which works by reading interstitial (the space between cells) glucose levels and converts that to a blood glucose reading, every five minutes. Therein lies the beauty of this system - every five minutes. Any lab taken at your doctor's office, the hospital, a health fair, one reading on a glucose meter, is but a snapshot of that moment in time. Science has developed all sorts of tools to try and give us more of a panoramic view - a look at what happens over time. The hemoglobin A1C test, used to gauge diabetic health and management, indirectly looks at blood sugar values over a three month span of time. We like panoramic views because they give us more of the whole picture, let us see patterns, allow us to be more informed so the choices we make and the actions we take are more likely to succeed.


That is exactly what the CGM does, gives readings every five minutes so the diabetic can see trends in glucose levels and know, "Oh, I'm at 180 and going higher from the looks of things, I better correct." More importantly, we can tell it when to alert us. If 70 is considered low, I want to know when Miss N is 80, and whether that's on its way down, flat, or trending upward. If I receive an alarm that she's 80 and the graph predicts her BG will fall lower, she can eat a healthy snack. No need for juice or pure glucose, no unfortunate loss of neurons because we failed to catch it until she was in the 50s or 60s. Amazing, right? Now think about having that tool at night, when she doesn't feel or wake up from her lows, when - without a single soul the wiser, her BG drops low enough for her to have a seizure or lapse into a coma. That's what I give up sleep to avoid, but I do it imperfectly because I'm shooting in the dark. When do I test, how often, which way is it trending, how do I know?!

I can't for the life of me understand why this of all tools in the diabetic's arsenal is least often covered. This is a crazy important tool (at least in my opinion, and many other parents of type 1 diabetics.) So, outside my comfort zone I go. I've been working at it like crazy, in fact, and thanks to the support of friends, family, and perfect strangers, we're getting there. As of today, we've raised $1590 - 32% of our goal!!

Curious about how we're doing that? You can visit out donation page N's New Lease on Life or go to our facebook community page CGM & Miss N: Raising Hope Please feel free to share these pages, we're trying to get them out there, and are so, so close.

13 March 2012

Truly Mixed Up Musings

     The roller coaster we call our life continues to take amazingly swift turns, upside downs, and even inside outs that catch my breath - far longer than my comfort zone says I can handle. It mirrors the inner, spiraling jumble of emotions, thoughts, to do lists, and worries creating a cacophony I struggle to separate into a series of coherent thoughts. I'm losing that battle, and needing to write down baby steps that I struggle to follow each day. I'm learning so much about myself, perseverance, the desire to perceive Good and the tenacity of fear. 
    Miss N starts pumping in 11 days - saline only to start, but the doubts and worries grow wilder as the days continue to dwindle. Miss N, sick and tired of swift swings in BG, up down , up down, hold on tightly, this is going to be a bumpy ride.... calls softly through silent tears, "Stop the ride, I just want to get off for a minute - catch my breath, you know?" But, we can't.
     I've avoided the blog, facebook, email, even texts - I don't know how to take the myriad emotions and force them into words. Doubt that any can or will do this maelstrom justice. So many What Ifs demand my attention, force me to second and triple guess our decision to pump. I read horror stories about insulin pump starts, little reassurance that we could preserve an ounce of sanity in our start - no, only that the first month or two are much like diagnosis all over again. I'm not certain we're ready. I too want off this ride - just long enough to take a deep, empowering, energizing, calming breath... to ground myself in certainty that We Can Do This, but it feels like the universe stopped listening. 
     I sleep through alarms more than I hear them lately. After a five day hiatus from all things online, I return to the news that four more dear souls left us far too early - all due to complications of severe hypoglycemia. The biggest, darkest, deepest fear raises its ugly head, maw poised ready to strike, toxic doubt and worry dripping from steal sharp fangs ready to slice through my mind... What If?
     I steady myself, try to gain purchase on firm ground - I can't allow myself to go there. Images of high BG induced DKA coma, hospital beds, those first days of diagnosis run rampant behind closed lids, refusing to settle. That's not going to happen, I promise myself, my daughter. 
     Brother Bear exudes irritation at the time this illness consumes, at lost moments for idle conversation during our pre meal preparations - now consumed by math, ratios, permutations. "When will this get easier?!" he demands. Not now, not next week, I think quietly to myself. Miss N hides tears that spring ready in response to her brother's irritation. 
     School doubts the truth of rampant illness scurrying through our collectively diminished immune systems. With unbelieving eyes that dismiss the emotional and physical toll of chronic illness on our family unit, teachers and administrators ridicule their perceived lack of effort, and I silently scream in protest. Damn them - these children work hard for the outer appearance of normalcy, the string of high B to A marks decorating their papers, the less than stellar attendance sheet full of tardies and absences due to circumstances outside their control. This is not for lack of trying, and only as a result of the invisibility of their nemeses do these Educators in positions of Power get away with judging and demeaning my children. But the anger only serves to fuel the fear, and I try hard to let it go. 
     I thought we'd have collected the funds for a continuous glucose monitor by now, but no. My family has worked insanely hard to put together funds to help, and we're closer, 10% of the goal achieved, but not close enough - not hardly. The insanity of pumping insulin without the aid of a CGM confuses me endlessly, and back I circle to the What Ifs - what if I can't get back to waking every 2 to 3 hours? What if I sleep through the alarms like I have been - on the pump, that could be disastrous!! 
     Close my eyes, breathe. A picture of others who should be helping pops up, unbidden, and the tears course down the tiny rivulets ingrained in my cheeks. The lack of understanding, belief, the failure of participation in a child's life - the emotions elicited twist my gut, deepen the sensation of deprived air, causing me to grasp for tiny breaths. 
     Close eyes, calm myself, slow breaths, be easy - trust. So simple, yet difficult to manage. I repeat the mantra, nearly a desperate plea for help by now:
      The Universe is Honorable. The Universe is Honorable.
          an attempt to restore my sense of faith, my belief that our needs will be met, my desperation for assurance that Miss N will not become yet another statistic, that Brother Bear will escape the trials of becoming a forgotten soul, that our family will survive this challenge. We've overcome so many, what's one more? I want to believe that, to believe in Us ...
     I need to remember, to slow the ride down if I cannot make it stop. Worry is nothing more than a prayer for what I fear most; The Universe is Honorable. 

03 March 2012

On the Lighter Side

As the kids & I look forward to a day filled with laughter, I am reminded of a deep seated belief. Laughter truly  is the best medicine. Before I veered towards nursing, much of my undergrad track was spent preparing for a life of medical research. (Yes, I really do like research that much.) I actually wrote a lengthy paper on the power of the human mind and uncovered mounds of supportive research detailing the power of both prayer, positive thinking, and especially laughter in improving our health. Though I don't think we need the scientific jargon and hours of research data to tell us what we intuitively know - it just feels good to laugh, to smile even. Force yourself to smile, right now, and pay attention to how your body reacts. Chances are, you felt a change, even if a subtle one. 

Countless moments in my life transformed from potentially painful to miraculously wonderful thanks to power of laughter - no joke. My first kiddo wasn't simply breach, labor was a nightmare, and then a Bob Hope special hit the airwaves and filled my hospital room. Holy Cow, but his guests that night - including Sammy Davis, Jr. made me laugh so hard I nearly.... well never mind that. The point is, laughter, when we leave room for it in our lives, can transform just about everything. That's part of what I loved about hospice nursing - the incredible moments of laughter shared with family and loved ones of which I was blessed to be a part. 

Life with D causes a fair amount of stress at times, and lately we've allowed this to drag us down. So, today  Big Sis (aka Honey Bees) and her husband Monster are taking the kids, their dad, and I to see the Harlem Globe Trotters. I simply can't wait, not just to be marveled at the amazing feats of Basketball Wizardry, but at the chance to spend an entire day with family simply Laughing. For a moment, I nearly got caught up in the drama of what the event center will and won't allow, the fight to get in with all of Miss N's D supplies intact. But I made a promise to the kids and myself - today we give ourselves over to the beauty of humor and laughter in our lives. Everything else? I trust the universe is honorable, enjoys a good laugh, and all will fall into place. 

Is there room for laughter in your life today? 

02 March 2012

The Good, The Bad, The Ugly & Down Right Bizarre

This is what happens when illness hits our home - I forget I write for three blogs. Thankfully the ones I am paid to write for had a mountain of pre-written copy since I love to commit ideas to paper the moment they strike. (Thank you Muse for sending so many wonderful education and health ideas my way these last few months.) Our personal blog, however, does not fare so well. It's a long known truth, the quieter this page remains, the more chaotic our home, thus my new commitment to daily blogging. Perhaps I can simply write the bugs out

Pssst, Ms. Funke, I could use some tips on this. Could you please send Meggie my way?

The Ugly - Miss N started it, I swear she did. Cough, sniffle, hack, wheeze. A rather large bout of pneumonia if you please. Four weeks and counting she's been sick, now down to the occasional cough, though it sounds as deep as the Nautilus still. I'm positive the outbreak of Whooping Cough at school spread to her lungs, and the doc who disbelieved us and proclaimed it merely viral guaranteed our month of sheer hell. Pneumonia and D simply don't mix, and we experienced our first foray into the 400s followed by swings into the 40s. Lots of missed school, long nights all interspersed with previously blogged fights between insurance and a sleep deprived, angry MommaKat. My claws extended more than a time or two, and the energy required for mental combat landed my lungs in a hot steaming mess next. I've never been so sick, and even stooped to the point of calling in the cavalry - shocking since I never ask for help. Sadly, I learned just how completely alone Miss N and I are in managing her diabetes. I've set a new goal for educating extended family after the three day nightmare of managing D, night checks, and ineffective breathing under a temp of 104.6 ~

The Bad - Between roller coaster blood sugars that rival the ups and downs of NJ's Kingda Ka, the ongoing hate triangle between myself, insurance, and our pharm, and feeling worse than death itself, I managed to miss vital appointments necessary for our continued survival and basic well being. Of course the only time available for reschedule fell on Brother Bears birthday - Happy 14th to my tall, lanky, and amazingly handsome guy! Despite our best intentions, Miss N and I rather disastrously applied the gift of sharing in All the wrong ways. You guessed it, Brother Bear quite literally sounds like a rather grumpy old bear in hibernation; even our neighbors complained at the noise, and no one wants to stand within a three foot radius of him or his cough. Turns out cranky (sick) grizzlies have claws, too.  

The Good - Amidst all the craziness, illness, and last minute band-aid attempts on holding our lives together, we somehow arrived at Miss N's first diaversary without realizing it. Good, even great, things really do come in threes! First, an email card acknowledging her day from a stranger turned friend, followed by a loan to subsidize my newest entrepreneurial adventure, and finally the unexpected call that brightened our future horizon - Miss N's Medtronic Paradigm Revel received approval. In fact, I'm waiting for it to arrive at my door any moment, pen in hand ready to sign. One down, one to go in needed tools for safer, healthier management of D. Many thanks to all who championed and joined in our fight. With that battle won, we're on to the next...

The Downright Bizarre - Despite the sensible decision to approve insulin pump therapy, and in light of the absolute refusal to even consider coverage of a continuous glucose monitoring system, insurance somehow thought it a good idea to limit test strips to 100 per month? Not kidding. What makes it all the more twilight zone-ish, the day before our incredible pump news I received paperwork indicating a second pump denial and approval of the needed 350 test strips per month, 200 pen needles per month (though truly, we need 240...) What happened?! I still don't know, and to be honest, I'm waiting until we have pump in hand to engage in the next battle. Those of you who know D understand that logic proves the minds behind PAR approvals to be half cracked and woefully out of touch. And for those readers who know me, well you're already wondering just how colorfully and creatively I plan to inform said brains of this fact. I should rather like to call today and pay homage to Dr.  Seuss.

One strip, two strips, test strips three. 
Test in the morning, test at night.
Test before breakfast, check it's just right.
Four strips, five strips, six strips see.
Test after breakfast, before lunch, before PE.
Seven strips, eight strips, test strips nine
Test after lunch, make sure you're fine.
Test if you're low, test when you're high.
Test before dinner, after, and at night.
10 strips, test strips, check your BG
Before meals, after meals, when you go Zzzzz.
11 strips, 12 strips, get em without a fight.
When you feel low, when you don't feel right.
We need test strips to keep BG just right.


08 February 2012

Open Letter to the Colorado Departments of Public Health & Environment, Medicaid, and Children with Special Health Care Needs Unit

To Whom it May Concern,

I am writing to you as the parent of a type 1 diabetic child, and as a registered nurse in the state of Colorado. Over the past year, my daughter and I have encountered numerous road blocks to accessing tools recognized as the standard of care for type 1 diabetic children and adults. Initially, upon nonrenewal of my contract with a local school district as a result of time missed when my daughter was first diagnosed, we found ourselves confronted with barriers to obtaining a sufficient numbers of test strips. Shortly after diagnosis, we continued to have problems with test strips as well as with obtaining supplies to keep at her school. While I would willingly have my daughter's kit travel back and forth, the school understandably felt uncomfortable with that scenario lest our daughter forget needed supplies at home. Still, both CHP+ and Colorado Medicaid raised challenges to filling enough supplies to have a separate, semi-stocked kit at her school both  last spring and this year. Ultimately, even though our family continues to qualify for various assistance programs while I look for full time employment, I purchased the needed items out of pocket, to the absolute dismay of the school nurse and American Diabetes Association Advocate assisting us at the time.

My daughter experiences nocturnal hypoglycemia on a fairly regular basis, and as a result now contends with hypoglycemic unawareness. I set an alarm and wake up every two to three hours every night to check her blood glucose levels. I do so to prevent a severe hypoglycemic episode which would certainly pose serious negative consequences for my daughter, and unduly tax the public health care system with the resulting, necessary emergency care. As a single mom, I find that I am unable to continue to meet this burden of care giving without support, and as a result, began the process to acquire both an insulin pump and continuous glucose monitoring system. Over the ensuing months, I have listened to countless health care providers inform me that we will have no trouble with Medicaid covering an insulin pump, but are unlikely to gain partial CGMS coverage. In order to avoid severe nocturnal episodes of hypoglycemia, we send our daughter to bed well above what constitutes a healthy blood glucose range for a child her age, have altered her basal insulin regimen multiple times to try to decrease the substantial drop in blood sugar levels, and found ourselves faced with worsening insulin resistance and an elevated A1C value as a result.

At Christmas time, we  completely ran out of test strips, though not for a lack of trying to avoid this. Having caught an upper respiratory infection at the beginning of winter break, we followed her endocrinologist's instructions and tested her blood sugar every 1 to 2 hours as instructed by the sick care algorithm. I realized that we would run out at noon on Christmas day, and tried to fill her test strips four days early to avoid problems over the holiday. Sadly, Medicaid failed multiple times to return urgent requests for help from myself and pharmacy staff. The Medicaid customer service representative who finally answered one of the pharmacy tech’s phone calls did so from her home – clearly accessing my daughter’s protected health information from her home computer in front of friends and family. Despite the life sustaining necessity of test strips for blood glucose checks, she refused to fill the prescription, stating we would have to wait until the Tuesday following Christmas. We again had to pay for strips out of pocket. Even though numerous programs exist to help defray the high cost of test strips, recipients of Medicaid are disallowed participation, and we paid over $65 for a four day supply of test strips, and had to limit how often our daughter could test at a time when that practice posed clear dangers for her health both long and short term. 

In January, the number of injections my daughter received daily increased to 7 per day due to attempts to mitigate night time lows by splitting the basal insulin dose, and the necessity of covering snacks or providing correction doses due to worsening insulin resistance. Her A1C increased again (having gone from 6.3 to 7.1, and now to 7.3 ), and 3 hourpost prandial blood sugar levels often remained well over 250. The elevated blood sugars, continued hypoglycemic events, and wide swings resulted in our daughter suffering from a weakened immune system. (Research documents a decreased immune response with blood glucose values over 250, and the body's inability to heal with blood glucose values greater than 300.) In the last 6 weeks she has been ill with an upper respiratory infection for at least 4 weeks, and a gastrointestinal illness over the first week and a half of January. Just this week we again sought help from her regular doctor only to discover that she now has pneumonia. Her insulin needs have more than quadrupled, and blood glucose levels seemed stuck in the low to mid 300s for the better part of this last week. We again could not fill test strips, nor were we able to fill her new pen needle prescription of 200+ pen needles per month, receiving only 100 which is not enough to cover two weeks’ worth of insulin. Instead, we had to rely on the generous support of other parents of type 1 children while we hold our breath and wait for insulin pump therapy approval and training.

Imagine my surprise today when I learned that Colorado Medicaid denied coverage of insulin pump therapy despite her diagnosis of type 1 diabetes – uncontrolled, a  7 day blood glucose average of 235, and the fact that she now receives 8 injections per day and has produced trace to small ketones consistently for the last  week. After hours of phone inquiries I have yet to reach a live person to discuss the specific reason insulin pump therapy was denied. (CGM was as well, though I expected that narrow minded response to a treatment modality that promises to protect my daughter’s health and save the state of Colorado countless dollars in avoided complications caused by persistent low and persistently high blood glucose values.) Now that the antibiotics have begun to do their work, her blood glucose levels are again trending down, and she has suffered three episodes of hypoglycemia today. Last night I had to maintain her blood sugar close to 250 in order to avoid dipping into the 50s or 40s, and I will need to do so again tonight, something a parent should never have to do, and a CGM would make it possible to avoid this negative practice.

I keep meticulous records of blood sugar values, insulin administration, adjust her insulin to carbohydrate levels cautiously and conscientiously, ensure she eats a healthy balanced diet, wake every two to three hours every night to test and treat as necessary, and despite this careful attention, I continue to borrow against her future health in order to minimize her risk today due to the narrow sighted decision of the Colorado Medicaid program to deny coverage of life sustaining treatments consistent with the recognized standard of care. I often wonder at the negative outcomes she might face if I did not possess training and experience in pediatric nursing, and at the health care decisions on the part of the state public health insurance program that will (not might) lead to catastrophic medical care needs and expenses down the road.

I worked in hospice and palliative care nursing prior to hurting my back in 2006. I understand the importance of utilization control measures, cost containment, and just how well consistent treatment aligned with accepted standard of care aligns with that goal. While it might seem like a large output of resources up front, the truth is that coverage of insulin pump therapy and CGM is an investment in the future well being of Colorado citizens, in this case its diabetic youth, that will prevent over utilization of system resources for negative, acute outcomes in the future, and simultaneously supports parents like myself in gaining the ability to return to the workforce full time as a result of the provision of that needed support. I urge you to examine and reassess the decisions made at the state level with regard to diabetes self management and access to therapies aligned with the recommended standard of care for type 1 diabetics.

Sincerely,
Kirsten Nelson, RN BSN, MA Ed Psych

On health, well being, and the need for sleep

Miss N now has pneumonia, and whatever bug caused this less than fun trip down sickascanbe road has me lagging not too far behind. It's amazing the effect disrupted sleep cycles have on the proper functioning of our immune system and our overall mood. Bottom line - we need sleep, preferably sooner than later.

With that in mind, I finally bit the bullet and created a page I've waffled on putting together. Who does this?! I've asked myself repeatedly. Tonight the answer rang loud and clear - people desperate for a return to some semblance of normalcy, but unable to gather the resources to do so on their own, that's who. In fact, that is me,  right now. Watching our children struggle with health concerns outside their realm of control proves a humbling process, one I've been through previously, just not to the same, never ending extent. Humbling. Eye opening. Particularly adept at shining a spot light on false pride and the tendency to 'go it alone'.

Unhappy with the panoramic view created by this piercing light, I now bring to you a work of art in progress - our own little medical fundraiser, and way of asking for help and support. This is a new adventure for us, and the path may well still need cut - but now we've set out in search of our destination, I feel committed getting there, and invite you to come along with us, right on into the land of CGM and insulin pump therapy.

You can read more here on Miss N's New Lease on Life Fundraiser and we hope to see you along the way!!

21 January 2012

On Being Stuck

Fair Warning, this is one of those long, introspective, Oh My God I had no idea kinds of posts begun at 3:00 AM. The type I deliberate posting at all - but this is about sharing the journey, openly and honestly. For the last year plus, the roles of single mom, teen boy, tween girl, chronically ill, and chaos driven intertwined to create this reality. I'm all about creating a new one, but in order to do so, I have look at where I'm at, accept, then let go and move forward. I've never shared N's diagnosis story, and realize I couldn't as it wasn't an isolated event - it was a part a more than year long period of hell in our lives, and I - we - feel ready to move on.


     I got up 21 hours ago. Before that I struggled to pull the veil of foggy sleep from my brain enough to test N’s blood sugar, only to find I’d wasted 2 precious hours in the task. Lord but I am so tired lately. Which makes the fact that I couldn’t return to sleep then, or get to bed tonight that much weirder.
       It’s just that I suddenly became aware of the dark, heavy weight pressing on my chest since the previous New Year remains stead fast in its perch. It shines a gray faced mirror in my face, one into which I dare not gaze. I have not yet forgiven myself, I haven’t released the ball of sadness and anger that constantly threatens to overwhelm my very essence. I know that I need to, but I just …don’t know how to release the tether that binds me to the sense of unfairness, the wrongness in all that transpired.
     We started the 10/11 school year off more frazzled than intended. Between my surgery, recovery, looking for a new teaching position, completing my Master’s degree, swim team, etc. I never managed to reset the house to a state of peaceful calm. The kids and I jetted off as soon as swim team ended for our first vacation since the dreadful back injury that ended my tour of nursing 4 years before. Jus t a quick 3 day trip up to Colorado Springs and back, but it was more than we’d done with each other in forever, and reminded me of just how much I missed spending quality time with family.
     Returning home proved hard, as it should at the end of a vacation, but harder still given that I now had to return to the classroom two weeks earlier than planned. Why? I accepted both a kinder position, AND agreed to teach the extra JumpStart portion. Oh wow! My second year of teaching and I somehow believed I could transition from 5th to K and stay sane!! Honestly, I didn’t fair so badly – I adored my kinder kids…
     … and then it all changed. A 5th grade position opened up in our building; would I move up, they asked? I struggled with the decision, shared concerns with my principal, checked in with family, and ultimately agreed. Sometimes, I wish I hadn’t. Sometimes, I wish I’d never returned to the school I loved so dearly. I might have avoided working alongside teammates who despised my very existence, believing I’d robbed their friend of her rightful place on the 5th grade team. Of course, I’d have to give up the year I shared with my fifth graders, a year that proved particularly special in forming a community of caring and sharing. With the year that transpired, that’s not surprising – the bond formed with students one of the few things in the year that I don’t regret.
       A week into my new assignment, I broke my foot when a damaged computer monitor decided to fall on it. Not a week later, Brother Bear suffered a serious head injury. We’re talking traumatic brain injury with loss of consciousness, dislocated collarbone, broken ribs, injuries to shoulder, arm and neck. In two weeks time, I quickly lost three days of work. We shook it off, and promised ourselves it could only get better.
       Not according to the dental and oral surgeries that followed, as teeth tend to fail following the summer of healing I’d just encountered. Still I pushed through, until the day came when I received a text that changed my eternity. You see, I made the wrong choice. I should have dropped everything; taken the offered leave of absence, and simply shown up – for however long necessary. Instead, I reacted. Again and again, and in the process failed the child who repeatedly called out to me for help in any way possible. In fear, I reacted to the threat of a job lost, a reputation tarnished, and allowed our world to crumble.
       In the absence of needed help, he became more ill. Mornings turned to nightmares, and nights grew longer, until soon I didn’t return from work until close to bedtime, fearing what I might find upon my return home. His dad enabled him, the school failed in providing sought after help, interruptions by phone peppered my instructional day, and the caustic, toxic environment I knew as my grade level team grew worse. I fought with my children, my ex, their school, and myself. Nothing fit together well. Viruses hit our household, one after another, and still we pressed on; still my child acted out, silently screaming for help to an (unwittingly) unhearing parent, until it spiraled out of control.
       Both A and N became ill yet again, but this early December morning, my heart recognized it as serious. Fearing growing reprisals at work, now devoid of the caring mentor I’d discovered in my original principal, I begged their dad to come care for them  in our home, and went to work. I went to work and immersed myself in caring for other families’ children, unaware of the hell my own endured, until finally he called to confirm what I’d known early on. Appendicitis. N was having surgery that night. Crap.
       And so I left, despite the grumblings of my colleagues that followed me out the door. I left to care for my youngest, to hold her hand through the hospital door. To hug my son, and realize how incredibly sick and alone he felt. Tears coursed down my cheeks as I soaked in the disarray of my clan. We had grown so far apart, so bereft of each other. I tried over the next five days to make amends, to care for all that I’d ignored in my inattention. Then the second scare hit – not only had Brother Bear removed himself from participation in life, enduring soul crushing pain of migraines in isolation, he’d become so ill that his platelet and white blood cell count suggested possible leukemia. WTF?! And so I took another day, another two, and waited while holding him, so far outgrown from my lap.
       I believe the closeness, the bonding, the outpouring of hurt and sharing of things too long left unsaid brought healing. His labs reversed, he regained some energy, but still the effects of the traumatic brain injury held sway over his life, and I recognized how badly he needed us to help and support. We somehow muddled through the two short weeks separating us from winter break. We found a counselor, stepped onto the path toward healing, unaware of the long journey ahead.
       While we reconnected, rejuvenated, and healed in togetherness, problems at work festered. I returned from break, and once again faced a summons to the office. My job, as I’d feared, sat in jeopardy. No more missed days allowed outside of death or hospitalization. Inwardly I wondered at the lack of compassion, and railed at the injustice. Outwardly, I meekly agreed and complied, tail tucked in submission. I’m convinced, as I look back, that I returned home that night a broken person. And in true zombie fashion, I missed every warning signal that announced impending danger.
       A stopped attending school, made a second real attempt at ending it all. He shut down, and I simply let him disintegrate while dashing around like a Mad Hatter trying to pick up the pieces of my career in place of the home I knew not how to fix. N drank like a fish, literally melted before my eyes, and we didn’t see it – not me, not her dad, no one took notice, and 20 pounds vanished silently before our eyes, in the span of weeks. Neither child had willingly spent the night at their Dad’s since winter break. We muddled through celebrations of their birthdays, and I turned my focus and attention to report cards, insisting they finally spend one freaking night with the other parent. Even though N complained of feeling sick, and stated that something was just wrong.
       By 11 that fateful Friday night, her tear choked pleas pulled me back to reality, forcing me to key into the message writhing underneath. She came home, I held her until she fell asleep in my lap, and then I kept working. In the middle of the night, she unleashed a torrent of vomit unparalleled by any seen in the entirety of my nursing career. I cleaned her up, scrubbed the bathroom, rocked her back to a fretful sleep, and again went back to work. Again!! By mid Saturday, I anxiously told her sister that N’s breathing reminded me of patients in metabolic acidosis. Still, she was drinking, peeing, occasionally waking up, and talking. Everyone has asked at one time or another if I am not guilty of incessant, unnecessary worrying, so once again I convinced myself it was okay and went back to work. Sunday morning she actually seemed better. Got up, ate, drank some more, still voiding, watched tv, etc.; but by night that horrid breathing returned, and I – end of trimester grading sheets piled all around, grew more fearful. I called her dad, shared my fears, and asked him to come over the next morning. We had a plan. He would take her to the doctor’s; I would go to work and fend for my life. I honestly believed this the best course of action. Or so I told myself. It's amazing the depth of self deception that paralyzing fear can drive us to. 
       9:30 am Monday, February 28th my classroom phone rang during a grade level meeting, and I somehow knew to rush out and answer it. Her dad, frantic, rambling about her eye’s rolling back, N incapable of standing up. I yelled for him to call the EMTs. They came and thought it merely the flu. The lead even came on the phone to talk to me, insisting she was dehydrated. “You don’t understand,” I yelled, “she’s been drinking and peeing like crazy!!” He reiterated, it's probably just the flu. I doubted it, and the only flew I could think of was the manner in which I left work. Principal nowhere in sight, 3rd grade teacher angrily demanding my time, J.G. once again looking irritated, and a new mantra coursing through my veins, “I simply don’t give a shit anymore. I am Out.”
       I walked into Good Sam’s ER, found her room, and a nurse I’d shared shifts with before said simply, “Oh, hi! You know she’s in DKA, right?” No, I didn't, but I should have. What. The. Hell?!? I still feel that deep sense of utter despair envelope and crush my heart at the mere memory of hearing that line. I said the damn words – metabolic acidosis. I am, or was, a flipping nurse. I ALLOWED this - DKA- to happen. The doc struggled with the decision on whether or not to transfer her to their adult ICU or down to Children’s. After they hung the 3rb bag of IV fluids, pushed oral fluids, oral potassium and failed to notice her lagging level of consciousness, I demanded they send us to Children’s.  It took another hour for air transport to arrive – the flight for life jumpers completely freaked me out at first, but it turned out we were going by bus. Only if things went south, would we travel the rest by chopper. God, it was worse than I thought.
       Just how much worse, I realized when we arrived at Children’s. I knew what the picture that greeted us meant. This was a trauma response team, emergency code, all hands on deck response. It is Not the kind you feel relieved to see greeting your child, not when you have medical experience and understand at a gut level the magnitude of Critical necessary to set that domino chain into action. The endocrinologist confirmed these inner thoughts. “Your daughter’s blood sugar levels aren’t that high, but her acidosis is significantly high that we are very concerned. The next 12 hours are critical, and you need to prepare for the fact that she might not wake up.”
       I have to face it, and I have such a hard time doing so. I failed to respond to my son’s cries for help, to get him the support and rehabilitation he needed. And then this – I had the background necessary to recognize what was going on with N. I said the damn words and let my adult daughter talk me out of going to the hospital. She wasn’t there, didn’t know and couldn't see the extent of illness' toll on her sister's body, but I did! I failed to act, and nearly lost N as a result.
       The rest of it all is still so fresh, vivid, stark in my memory. Sitting at her bedside, entering grades on my school laptop – still intent on complying with a job I knew was already dead. I held my breath waiting for her to wake up. I think I’ve been holding my breath ever since. It beats through my chest demanding to escape, but I lock it down tight and chant over and over. Just make it through the night. Just make it through the arrogant nurse who proclaimed he knew better than the docs, rushing to bring her blood glucose down, ketone levels be damned. 
       Just make it through discharge. Just make it through education at the center. Just make it through the ex calling the police for a well check our first night home from ICU. Just make it through the next day, and the next, until finally my termination is official and I no longer have an income. Just make it through the next app, the next interview until it’s clear my former principal refuses to see me teaching again. Just make it through the first week, the first month, the first semester of middle school where it seems the challenges they each face might never end. Fluctuating blood sugars, migraines, joint pain, puncture wounds, under educated health aides, teachers' failure to accommodate. I’m barely working, yet always busy, and the house remains in disarray. 
       14 months from the beginning of this post, one month shy of N’s first diaversarry, I’m still holding that breath in tight, so scared it’s not done falling all apart. I’m scared – of the future, of the loss, of where to go from here. I utterly failed my children, and I don’t know how to forgive myself. Somehow, I’ve got to let go, move on, up and out from this year of torment and hell. I want to grow, lift up, taking my children with me far, far away from this space in time, until looking back brings but the faintest memory of the shit we’ve left behind. I want to find the moment when my son no longer resents me for all that I wasn’t and still haven’t become.
      I’m reaching out towards … I don’t have a clue, but it’s certainly somewhere and some when better than this. They deserve that much at the very freaking least. And I think, having released a fraction of that pent up, fear choked  breath, that I sense a glimmer of hope ahead.

20 January 2012

Oatmeal & Spike

My daughter just loves to invite Oatmeal for breakfast, but whenever she does Spike insists he come along. Spike is the kind who doesn't wait for an invitation, and definitely over stays his welcome regardless of how many clues we give that we're really quite done with his visit. Invite Oatmeal for breakfast, and Spike generally hangs around through mid morning, which is also N's school lunch time.

Today took the cake though. There's simply overstaying one's welcome, and then there's the truly obnoxious. I guess Spike decided it was his turn to play the part of exceedingly obnoxious as he hung around through lunch, on into Science, and straight through to basket ball practice. Spike's not exactly quiet about his presence. He pretty much shouts I'm Here! with abundant irritation, elicits short tempers, and many snide remarks. I guess it's just attention seeking, but he caused N a lot of upset, triggered a crazy bad headache, and even tied her stomach up in knots.

I'm just glad he's gone and won't be there when I pick her up from practice, especially after our last conversation. N, nearly in tears, begged to understand why Spike wouldn't just Go Away. We brainstormed through some ideas to evict her unwanted guest, and I'm thinking he must have been eavesdropping 'cuz half way through practice he just up and left, without even saying goodbye. Oh, maybe that's for the best.

I do have to tell her we can't invite Pizza for dinner like we planned. I know Brother Bear has a game tonight, but if we invite Pizza, Spike's gonna want to come back. And if Spike show's up for dinner, he'll likely end up spending the night!!

19 January 2012

All Health Insurance Companies Need to Approve CGM's

     My type 1 diabetic child meets the criteria for coverage of a continuous blood glucose monitoring system, otherwise known as CGM. She experiences nocturnal hypoglycemia, or low blood sugar during sleep, several times a week. These do not wake her, contrary to the endocrinologist's reassurances to they definitely would. The only means of catching them is for me to get up every 3 hours and test her blood sugar. Part of the time, Miss N can sleep through those tests, but when she's low she has to wake up, drink and eat something, then wait ten / fifteen minutes to ensure her blood glucose level came up enough. 
     This isn't good for any of us, and her lowest lows tend to occur over night. If I don't get up, and sometimes I'm so short on sleep I wouldn't wake to a sonic boom, she could go low enough that she suffers seizures, or God forbid, death from severe hypoglycemia. So far, so good. I wake up most nights, and the nights I've managed to sleep through the cacophony that likely irritates my neighbors to the point of wishing we'd move (or worse), some profound 6th sense has woken me in time to catch a 40 on its way down. (Note, blood glucose truly should remain above 70!!) 
     As a result of this night time struggle, N now finds herself dealing with hypoglycemic unawareness - her body's inability to feel a low blood sugar,  fasting BG greater than 150, usually from treating night time lows,  but bad all the same. Nearly nightly, we see a drop of more than 100pt in blood glucose, so she has to go to bed in an unhealthy range if we want to avoid night time lows. For her overall and long term health, that is not a viable option. These all represent aspects of diabetes that pose serious risk to her health, from damage to blood vessels  and organs, to damage to her neurological system, etc. Untreated hypoglycemia ends in seizure or death, ergo the fear of sleeping through alarms, and yet our insurance continues to refuse coverage of a CGM. 
     In an effort to achieve better control, we're switching to an insulin pump, a device that continuously injects small amounts of insulin into her system. Of course, this makes us both much more nervous about night time blood glucose levels. I find it odd that an insurance company will cover, at least in part, an insulin pump but not continuous glucose monitoring. In fact, the pump N chose has an integrated CGM system, so her blood glucose values show up on the insulin pump, and the pump takes these trends into consideration when suggesting the amount of insulin to inject. So, seriously, it's a no brainer - you cover both devices simultaneously to prevent severe hypoglycemic episodes that lead to more costly interventions, hospitalizations, and at its worse, loss of life. 
     Of course, a number of insurance companies simply don't see it this way, nor do the employers that provide insurance through insurance providers more likely to cover CGM. I've shared before how I lost my teaching contract, and it still irks me to no end that I was informed, point blank, I faced non-renewal as a result of my child's illness, and the time I missed from work during her ICU stay. I know, logically speaking, that those involved in decisions regarding budget cuts, and contract non-renewals, faced enormously difficult decisions. In the effort to cut millions from the district budget, and further tighten  the insurance benefits provided teachers, they targeted staff  contending with their own chronic illness, or with chronically ill family members. Again, I get it. We pose a cost that employers both want and need to rid themselves of. Sadly, in education, they have the means to do so legally if you're in your first three years of teaching. Frankly, access to health care in our country sucks, but that's for another post. This is about CGM, and insurance covering a necessary and life saving device.  
     The truth is that criteria regarding coverage of CGM exists at a national / federal level. My child, along with countless others, qualifies for coverage of CGM according to that criteria. The trick, however, is that in the context of the documents outlining that criteria, three tiny letters appear, allowing state medicaid programs and insurance agencies to decide for themselves whether or not they cover CGMS. LCD - local coverage determination. Three letters, combined, that confer the power and ability of insurance companies and state medicaid programs to ignore the research, ignore standards of care recognized for the treatment of diabetes, and result in denial of CGM for many. This is a very important issue for ALL diabetics receiving insulin. So, I'm asking. Please join, and ask others to join, this important cause!