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.