Acronyms: T1D and AYFKM

“Are you f-ing kidding me (AYFKM)?” Jasper suggests this is my new mantra since Charlotte was diagnosed with type 1 diabetes (T1D) five months ago. And he’s right.

Two UPS packages arrived yesterday. Charlotte and her good friend Harper were excited to know what they contained. AYFKM: not the Lands End messenger bag Ms. C ordered on my debit card unbenownst to me; not the Patagonia retro swing jacket I covet deeply but can’t afford because chronic autoimmune disease management costs money even with insurance; not the publishers clearing house stack of dough that would make our life so flamboyant we could take Ms. C to Europe for T1D management that is ahead of the US and satisfy my desire to share and experience the world with my children; not not not.

Instead I opened the boxes with a sigh of resign and relief. Here are a portion of Charlotte’s life saving paraphernalia for the next three months: a heady army of needles and 750 blood glucose test strips. My daughter unflinchingly goes through an average of six strips a day – that’s six finger pricks a day folks, 6×30=180 a month, 180×12=2,160 a year, baby. Our endocrinologist says we only really need maybe five a day, but AYFKM, we’re new to this and every bite, sip, new experience for Charlo means we check.

This s*&^ is scary. If my girl nonchalantly drinks a glass of lemonade at a friend’s house as she innocently did recently, she needs a boost of insulin as her blood sugar (BG) will rise due to the carbs in the juice. AYFKM? A high BG today adds up over her lifetime and makes her predisposed to eye and kidney degeneration, loss of limbs, difficulty with pregnancy, and a host of other things.

AYFKM and hip hip hooray we are Charlotte’s pancreas! There’ve been many a moment in my life when I’ve questioned my value, my role (especially in unemployment). No longer! I am a vital organ working tirelessly to keep a little girl alive and well. I mean really, being a parent is simple compared to this. Oh, I’m that too. AYFKM? One thing at a time, please.

But  despite the current trial, I am supremely lucky to have two superb, magical, resilient kids – with and without functioning pancreases. And no, I’m not f-ing kidding you . . . INFKY . . . I really am lucky.

Dizzy with It

Wow, what a summer. Charlotte has had some grand adventures with T1D on board thanks to incredible people who, perhaps hesitated, but ultimately felt that Ms. C needed and deserved adventure and empowerment. We all wish these things for our kids (or should), but having a chronic autoimmune disease that sets your child forever apart, dependent, and vulnerable is something most parents never consider. I am undeniably envious.

I’ve never been a worrisome mother; kind of astonishing since my elder brother died when I was 11. Rather, I’m a bit lackadaisical, eager for Max and Charlo to experience and learn from what comes their way. Yes, the good and ugly. I love spontaneity, but T1D has changed my ridiculous embrace of non-planning, non-focus, non-whatever-I-believed before. This is new territory for me. There is so much to consider now, it’s dizzying.

From stocking Charlo’s ever-present T1D kit daily with adequate needles, lancets, alcohol wipes, blood glucose meter, test strips, glucagon, and fast acting sugar for potential lows; to writing a 504 plan for school – a plan that designates her as a child with a disability (kick me now); to educating new teachers about Charlo’s imperative, life-saving T1D management (a clear source of annoyance to our principal); to buying not only school supplies but the juice and snacks that need to be stocked in Charlotte’s classroom in case of a low; to researching insulin pumps and continuous glucose monitors; to remembering all the things I need to keep going for Max; these things and so much more weigh on me. Whew.

Oh, and I need a job.

For this moment right now, I am going to be quiet and breathe. No, I’m turning on P!nk’s Raise a Glass, a feisty tribute to individuality and difference, and shaking my booty. This moment is mine.

Anything but Normal, Thank You

Tuesday I returned from taking Charlotte to a spectacular horse camp, Ekone, in Goldendale, WA. It’s a 2.5 hour drive from Portland – not usually significant, but it’s a ‘normal’ camp, not one dedicated to kids with T1d. And I left her there. With only cursory instructions for the staff who are responsible for 20 other kids as well as my newly-burdened girl.

Charlo and dear friend, Olivia, at Ekone

Charlo first went to Ekone last year with her best friend, Olivia, and loved it. She and O talked about it longingly all year and were excited to go back. But that was before disease. Everything is different now: every excursion, new teacher, new friend, experience, laden with the need for preparation and explanation. Tainted. It’s exhausting and damning, yet necessary and oddly empowering.

Ekone agreed to have Charlotte on the condition that I spend a couple days on the compound to acclimate Charlo and educate the staff about her medical condition and needs. Very wise. I tried to give my girl space with the exception of meal times, but she gravitated to me complaining of stomach aches. I made her check her blood glucose, worried that her sugars might be high, but she was in range. I knew what was going on, she was anxious about me leaving and considering coming home with me. Damn T1d, it made me cry and furious. It’s unrelenting and cruel.

So her incredible counselor, Caitlin, and Molly, a mom volunteer extraordinaire, assured Charlo they would be her team. I fervently told her I knew she could handle the camp and her diabetes and that everyone feels weird when they first get to camp. She cried, “But, mom, I have something no-one else does. It’s harder.” She was right. Right to be worried, fearful, anxious. Right that her life will likely be harder than most of her peers. And always in jeopardy.

Ms. C mulled over her decision while riding horses that morning with the knowledge that we would support her no matter what. At lunch after Caitlin figured out her carbs and insulin dose, Charlo was relaxed and looking forward to staying – without me. I was jubilant.

Art-in-nature that Charlotte’s group created sums up my feelings about Ekone and the fabulous women who run it

I am in awe of the incredible Ekone women who were not only unintimidated with T1d and the rigors of its management, but enthusiastic and willing to learn and accomodate Charlo’s special needs. They are heroes and amazing role models.

As I headed out in my car, I saw Charlotte and Olivia clad in bathing suits by the enormous rope swing, animated and smiling. Charlotte was shaking her booty – a sure sign she was finally feeling herself and at ease.

‘I can curry and ride a horse with my ever-present and heavy T1d fanny pack!’ You rock, my girl!

Optimism and Benchmarks

Past heartbreaks made me who I am – a deep-hearted, sometimes wallowing soul, giving and always yearning for compassion, understanding, and completion. This T1D heartbreak is making me a fighter, a learner, an advocate, the best mom possible, and more alone than I could ever have imagined. And I’m no stranger to lonely.

But, I’ll try to be optimistic today.

Benchmark: Charlotte had her first visit with her endocrinologist, Dr. Snyder, since her T1d diagnoses four crazy, long months ago. It was stellar. Thanks to a rigorous insulin (Novolog and Lantus) regime, she has regained the weight she lost due to her disease, grew two inches, and has a very good A1Cof 7.7. (Her A1C at the hospital was more than 12 which means her blood sugars had been running well into the 300s for a long time without us knowing – ‘normal’ is somewhere around 4-5.) Our Doc thinks we’re doing really well and has approved Charlotte’s desire to get an insulin pump at only six months into the disease. We’re moving fast at the Hand house.

We have narrowed our insulin pump choices to two, the Animas Ping and OmniPod. Of course, Jasper and I differ on which ones we like. But really, it’s Charlo’s choice. She’s been wearing an empty, demo OmniPod for two days to get the feel of something attached to her body 24/7. It’s an external pancreas, really. Her lack of self-consciousness about the bulge that shows through her bathing suit astonishes me. She is at once damn strong, smart, mature beyond her years, and still the zany, booty-shaking wonder that makes me smile (and furious!).

I’ve contacted a family therapist with special experience dealing with people and families struggling with T1d since our collective stress has increased exponentially, especially mine. We are all effected and need support. Charlo has yet to demonstrate any emotion about her disease and I’m pretty sure it will come. Max (almost 12) has cried several times about Charlo’s T1d, which infuriates her. She can’t seem to tolerate any emotion around her disease. Which I get – only sort of. I suppose it’s hers to own and she’s like her Dad, very private. Needless to say, Jasper and I could use some interference from a professional as well; I am wrought with emotion, anger, and impatience. Not good.

Charlotte is still enjoying her T1d honeymoon, which means her pancreas is still producing some insulin making her insulin doses small. But it devastates me knowing that it will cease to work completely sometime soon. How weird is it to have a major organ in your body without function? Ugh, I said I wouldn’t got there today.

So, I’ll stop here. Optimism when dealing with a chronic disease can be tough, but the alternative is just damn ugly.

Alaska Respite

This week I’m happily home alone with my sweetie, Jasper, as Max and Charlotte cruise Alaska with their cousin, Cecelia, and their amazing grandparents, Papa and Tati. This is monumental. Four months into T1D, my parents (both nearing 80) kept their promise to our children and set sail on an enormous ship and adventure – with minimal T1D training and experience.

Charlotte and Cecilia

 

From the moment I tearily told them about Charlo’s diagnosis, my parents have been stellar. My Dad (super athletic and incredulously diagnosed as pre-diabetic . . . type 2, of course . . . several years ago) immersed himself in T1D knowledge. My Mom, offered heartfelt support from her own experience with a child battling a devastating, life threatening, chronic disease (my elder brother died at 16 of cancer, non-hodgkins lymphoma).

Amazing grandparents!

I can only imagine their incredulity that horror has struck our family again. I’m dumbfounded. It’s thankfully not cancer this time, but T1D has a hell all its own. Imagine your child being hospitalized and told they have a debilitating chronic disease, then released to you to manage said disease for four months without seeing the new doctor, an endocrinologist. Holy shit.

There aren’t many other diseases where people must take rigorous care of themselves. T1D places harsh demands on its victims. No nurse and doctor, administers Charlo’s insulin, monitors her blood sugar levels, rushes in when a low comes, or increases doses when there is a high. We do that on our own, multiple times a day. Every bite and sip my girl takes, need to be carefully considered and compensated for. Her damn pancreas doesn’t work. Never will.

Whose pancreas doesn’t work?

We ruminated about canceling once Charlo’s diagnosis came through, but we all felt it would be devastating to Ms. C and send a terrible message to her brother, Max, and cousin, Ceci. Disease won’t stop this clan! So my parents took on T1D with three days of training to give our children an extraordinary adventure, despite the hardship and obvious connection to my brother’s disease and demise.

Ceci and Max

My parents are superstars. Not only have they given their grandchildren a gift, but they have given me and Jasper a much needed, deserved T1D respite. The strong tentacles of disease have loosened their grip allowing us to appreciate all that we have dealt with and done these past months. I will greedily take what I can this week, as T1D emersion will come too quickly. For now, I will breathe.

 

Our Arsenal

Charlotte’s first sharps container is full after two months with Type 1 Diabetes (T1D). Overflowing with used needles, alcohol swipes, test strips, and lancets. My daughter’s biohazards. It’s a fraction of what we really use to maintain her life as these damn artifacts inhabit her bedroom desk and floor, our car, and are strewn about the house. Underfoot. They defy enclosure which pisses me off. They demand acknowledgement as if I’m not aware every second of their new imperative for Charlo’s survival. I know these allies are everywhere, inextricably a part of our life now. But I wish they would disappear. Wish we could go back.

Part of our army: pen needles, insulin, and lancets.

Sigh. Lots of them these days. Navigating the health insurance world is harrowing, frustrating, and a time suck. I just learned after five years with the same insurance provider that ‘pharmaceutical’ insurance is different from ‘medical’ insurance. And that my mail order for Charlotte’s test strips and lancets (we use an average of six a day) and pen needles (four a day if we’re lucky) was cancelled. With no phone call to let me know that what keeps her alive is being held hostage. I’m frantic – we’re running out of supplies.

Drawer dedicated to our T1D arsenal

So I take a deep breath, get my fire up, and reach for the phone to figure out this new conundrum. I think of Charlotte and her courage when I get overwhelmed. And I’m thankful for hilarity, compassion, and love. They are more than armor, they are lifeblood.

Embracing T1D, Sort of

Type 1 Diabetes sucks. Period. It is exhausting, nerve wracking, anger-inducing, humbling, and unnecessary. It sends me on a daily wild goose chase, trying to catch the illusive ‘good’ blood glucose level of my daughter, Charlotte. It forces me to sleuth out the often random causes of her high or low sugars. And obliges me to wake her up at 2:00 a.m. to prick her finger. I rarely get back to sleep, my mind awhirl with T1D. This little devil never leaves me.

But I embrace it; there is no other choice. And so, oddly, I am thankful.

Thankful that Charlo has the benefit of improved T1D management that rests on the care of so many people with diabetes before her. Thankful for technological advances like her insulin pen that uses a tiny needle to administer the crystalline drops of life rather than an ominous syringe. Thankful for the insulin that has stabilized her and enables her to be a happy, confident, zany kid. Thankful that we caught the disease before it damaged or killed Charlotte. And thankful that her spirit is undaunted.

We are fortunate in all of this to have terrific endocrinologists and T1D educators on our side; people with whom we connect on a daily basis to discuss Charlo’s numbers and walk us through the heady process of insulin adjustment. Our health insurance is a boon as the dollars of disease are dizzying. I can’t imagine having to decide whether to forgo food or insulin, a cruelly ironic predicament. And I have met incredibly strong women, fellow T1D mothers, who have generously embraced me though their lives are full and chaotic as well.

There are days when T1D overwhelms me. But then I look at Charlotte, only nine and a half, carrying this disease with grace, courage, and spunk. And I am thankful.

Prick. Squeeze. Measure. Inject.

Salacious title, eh?  At least to my oft-in-the-gutter mind. A bawdy romp broken down into crass elements devoid of steam and emotion. I wish. Rather, this is my nine and a half year old daughter, Charlotte’s, routine at least five times a day (including 2:00 a.m.) since being diagnosed with Type 1 Diabetes (T1D) three weeks ago. That would be March 22, 2012. Ridiculously amusing that there are so many twos in this date, as my last post was all about the auspiciousness of ‘2012’ the number and year. Instead we got angst and chaos: a chronic autoimmune disease for which there is no cure. Harrumph and holy hell.

Charlotte tests her blood glucose level by pricking a finger, any finger (hooray! she has ten), squeezing a salty drop of blood (heaven forbid she’s got a cold finger), and feeding it into a meter that discharges a number within five seconds. Her blood glucose number dictates everything and how we react. Low (anything below 80)? Chug some juice, Charlotte, because a low might make  you lose consciousness and have a life-threatening seizure. Sit tight, don’t exercise, and check your level again in 15 minutes, maybe again in another 15, and have a snack – if your level goes above 80. High (anything above 180)? Correct with an insulin injection. Normal? Non-existant.

And that sums it up. No normal. Charlotte’s insulin injections change multiple times a day based on what she eats, her stress, ever-present exuberance, hormones, exercise. Pretty much everything. Imagine your child shooting themselves up with anything multiple times a day. I almost can’t bear to watch her insert the little needle into the “fat” on her tiny arm. It’s absurd. Here is a being whose body is killing what enables the rest of us to eat and make energy – insulin making cells. They won’t revive, come back to assert themselves, dance a happy jig. Give major blessings to your pancreas; my girl and countless others with T1D have a pivotal organ that doesn’t work. They are dependent on expensive medicine and rigorous self-management. Forever.

While I have found strength and purpose that waned since losing my job, I’m furious and bereft. Incredulous. I suppose what I always imagined as a blog about my experience as a surviving sibling of a brother lost to cancer will now be one about the survival of my daughter and our family, our growing new T1D community, our stresses and triumphs.

F#** and a new call to action. Pricks, measurement, and injecting always were about partners. Measurement was and will be about me. And the survival of my daughter.