What to Say?

We currently have more than one family in our lives with a recently diagnosed blood-sugar-challenged person. While we're hoping this isn't becoming a trend, I'm working on my own initial reaction conversation, and reflecting on some I had 15 or so years ago.

We were fortunate to be hooked up with a local group of diabetes parents shortly after my daughter's diagnosis. When I called for details about their meetings, the group's facilitator - both a CDE and a diabetes mom herself - stayed on the phone for almost an hour, offering support and encouragement, with lots of, "slowly but surely it'll get easier," and "it sounds like you're doing well, considering how little she is and all you've been through," and "I'll bring you some resources when you come to support group." She then asked if she could have a member of the group call me since this member's daughter had been diagnosed at about the same age as mine. The phone rang a few days later.

"Oh... I'm so sorry this is happening to you," the well-meaning mom began, "Having diabetes is terrible. It's the hardest thing we've ever done."

We had other conversations with fellow diabetes families over those first few months, some from that support group and some from other parts of our lives, but I think those two interactions mark the extreme opposite answers to the question, "What should I say to the newly diagnosed?" Should I assume they're in a place of despair, or should I begin with hope?

Talking with the "diabetes is terrible" mom wasn't all bad. Simply chatting with someone with similar experiences was helpful. But I was left wondering why, 3 weeks in, I seemed to have a better level of acceptance of my new normal than she did after a few years.

So in my interactions, even on days when I'm feeling like diabetes is particularly terrible, I've decided to aim for encouragement: offering and answering questions, listening, and providing information or resources if I can.  If the conversation flows towards the terrible parts, I'm not opposed to supportive commiserating, but want the end message to be, "but we survived those first months, we're surviving now, and you will to."

I don't think there's anything much more helpful than a real live person saying, "I've been in your shoes. I'm still standing, and even thriving. It's going to be okay, and I'm here to help."

A Mother's Day Gift

A poem written especially for moms of young kids with diabetes:

Not flowers, nor chocolate - not even fine tea!
What I want is a break from the numbers, you see.

For three sixty four they've been swirling around
'Til I fear on some days that my brains will be drowned.

So this Sunday for Mothers, I ask for a rest
From basal and bolus, from 'What are you- test!'

From site change and carb counts, from dexcoms that blare,
Insurance and phone calls and 'the juice boxes are there.'

So Sunday at lunch and the walk by the lake,
I ask that from d-stuff I get a quick break.

I'll be back on Monday, raring to go,
To support my sweet hero in her diabetes show.

Nurse Perks

Happy National Nurse's Week!

My daughter has, for over 10 years, almost always enjoyed going to the nurse's office.

The minutes she was late for lunch in elementary and middle school were hard, and she never enjoys being low or needing a site change. But there are upsides to those nurse visits:

There's often something interesting going on in the office. An overheard phone call to a parent who doesn't want to pick up a sick kid. Or a bizarre gym injury. Or an update on the current plague, be it flu or lice or a lingering cold.

There's a kind, interested adult there. When the office is quiet, there's conversation. Our school nurses have known more about my daughter than most of her teachers and even some of her friends. And vice-versa. While killing the time it takes for a low blood sugar to come up they talk about family, vacations, restaurants, afterschool activities and more.

Teachers and other staff stop by. My daughter has overheard, and often been included in, conversations amongst school staff. It's pretty interesting to hear the 'grown-ups' talk. Some nurse's offices are adjacent to the main office, providing yet another interesting source of conversation and information.

There's air conditioning. This is no small plus in September or June around here. On elementary school field day, or as an escape from the south-facing third floor middle school classroom, a low-ish blood sugar was a free ticket to relief.

I'm incredibly grateful for the nurses who've sat in those offices over the years. Being concerned about and dealing with my child's medical needs are line items in their job descriptions. The relationships they've built with her, and the extra kindnesses along the way have been above and beyond.

Thank you, this Nurse's Week, to all the school nurses who make their offices a safe, pleasant and even desirable place for their kids with diabetes.

Ye Olde Pharmacy Days

Fifteen years ago, when my daughter was first diagnosed with diabetes, we were given a handful of paper prescriptions. I drove to the local pharmacy near our house which, conveniently, doubled as a Hallmark store. I handed over the prescriptions and went home with two kinds of insulin, including one which had been diluted to make her baby-sized doses possible. I also went home with test strips, lancets, syringes and glucagon. At regular intervals I returned to the pharmacy, paid a reasonable copay, and received more supplies. Sometimes I was also able to pick up a birthday card or a baby gift while I was there.

It sounds like a fairy tale now. The only thing I still obtain at a brick-and-mortar pharmacy is insulin, and I fear those days are numbered.

I fail to understand how the current system could possibly be more cost-effective...or better in any other way for that matter.

The layers of bureaucracy which have been added in the interests of keeping costs down can't really be doing so, can they?

Our endocrinology office now has staff members who answer the office's 'prescription hotline,' speaking, emailing and faxing all day with patients, pharmacies and insurers.

Our health insurer now pays a third party case management company to manage our prescription and durable medical equipment (pump, dexcom, etc.) supply needs. That company then contacts the people at supply distribution companies who then process our order. Both the prescription case management company and the supply shipping company call, email and snail mail us, our insurer, and the aforementioned 'prescription hotline' people regularly with questions, updates and statements.

Then FedEx, UPS or the USPS is paid to deliver our supplies. They're also paid to return wrong orders, or malfunctioning equipment.

How does any bulk purchasing discount not get balanced out by all of these additional expenses?

It's also definitely less efficient, taking days if not weeks to fill prescriptions when it used to be possible to pick it all up on the way home. Or, at worst, kill the 20 minute wait picking out a birthday card or browsing the toy department.

And the room for error has increased exponentially. When I pick up a prescription from CVS, I peek in the bag before I walk away from the counter. If there's a problem it's fixed immediately. Meanwhile, our initial order from Edgepark, containing 2 wrong items, required 3 phone calls, a 48 hour wait for a replacement items, a 2 week wait for a return label, and a trip to the post office. And I'm not sure the billing is straightened out yet.

There's so much wrong with the current healthcare marketplace that this is just the tip of the iceberg. At the same time it serves as a lens through which to view the layers of bureaucracy which are adding expense and frustration for all of the players in the healthcare system.

While it wasn't always convenient to go to the pharmacy, especially with a toddler in tow, it was most certainly better than the rigmarole we go through now.

The Owl Bag is in the Orange Toolbox

"The owl bag is in the orange toolbox," the text read.

Nope. This isn't where I reveal that we're part of an intriguing spy ring.

The owl bag is, in fact, a small insulated cosmetic bag which currently holds a glucagon kit, one-touch mini meter, strips, a lancet and a pouch of glucose gel.

The orange tool box is a standard-sized portable toolbox which holds a vast array of items useful for repairing band instruments. Screwdrivers of all sizes with screws to fit everything from a piccolo to a marimba, pliers and wires, glue and assorted tape, reeds, mouthpieces and so much more are all housed in this very heavy toolbox which travels to the field for every rehearsal and with the band for every game, competition and concert.

We turned over the owl bag before summer band rehearsals began for freshman year. Over the course of that first year, it could be found in the director's desk drawer, in his messenger bag and on the sidelines of the football field. Last summer, at the start of summer rehearsals, I received the above cryptic text from my daughter. The band director, wisely we think, decided that if the owl bag was always in the orange toolbox, then it would always be in close proximity to the band.

We removed the owl bag from the toolbox and handed it over to the nurse who went on the recent overnight music department trip. It held just the right collection of things the nurse needed to carry. The day the kids returned to school post-trip, I was reassured by a mid-day text from my daughter:

"The owl bag is back in the orange toolbox."

Mission accomplished.

It Shouldn't Be This Hard

I'm a good 4 weeks into my effort to secure my daughter's Dexcom sensors, test strips and lancets through our new insurance provider. I'm only a little closer than when I began.

I called the insurance company. Who said I had to use their home care case management company, Carecentrix. I talked with Carecentrix a few times more than should have been necessary. I did the job they assigned me: to ask my daughter's doctor's office send them prescriptions with very specific specifications. I was told that Carecentrix would then send my daughter's order to a company through which the supplies would be covered by my insurance. That assigned company would call me to make arrangements.

I received a call the next day from a supply company. The conversation ended with the very nice representative saying this:

"Well, ma'am, I understand you'd rather not switch to a new brand of meter. If you want to continue using the one touch strips...and it sounds like you do...I'm going to suggest you call Carecentrix back and ask for them to assign you a new supply company. I'm sorry I couldn't be of more help to you today."

A couple more phone conversations with Carecentrix, and I was told our supplies would be coming from Edgepark. "They'll call you in the next couple of days." Which they didn't.

When I called Edgepark they had my daughter's name in the system and the list of items requested which was more than I had hoped for. They did not have the correct insurance company, and they had my 16 year old daughter as the primary policy holder. Once that was settled, my phone call was transferred to someone else to 'confirm that the order was underway.'

"Next," I was told, "we have to verify your benefits, and then we will reach out to your provider for the prescriptions." Apparently neither the referral from Carecentrix nor the prescriptions that came along with it were good enough. "We have to fax your doctor paperwork and they have to fax it back with very specific information. It all has to be done on Edgepark letterhead, ma'am."

I asked, in as many ways as I could think of, if there was anything else they needed from me. No, I was told. New orders take up to 10 days to ship, and ours should be on the way within that timeframe.

A recorded telephone call the next day told me that Edgepark needed additional information to process my order. They needed me to call them as soon as possible. After 20 minutes on hold I was told they needed a 'valid method of payment,' which I provided. I was told, once again, that there was nothing else they needed from me.

I received two recorded updates, one that the order had been processed, and then an exciting one that the order would arrive "within one business day."

The next afternoon there was a box on my doorstep!

It contained Dexcom sensors, test strips and lancets:

On the plus side, the Dexcom sensors are exactly what we needed. And, if there's a silver lining, the item we needed most urgently. The test strips and lancets, on the other hand, are being returned. Edgepark, I was told when I called to complain, doesn't carry the variety of lancets my daughter uses. The correct test strips are, allegedly, in the mail.

Thankful

Unlike last year's expedition, which could have been subtitled, 'airplane flight to 5 days of walking in chaotic environments,' this year's music department trip seemed like a manageable adventure. It was a four hour bus trip to spend 3 days and 2 nights in and around an interesting city. Because of the presence of a great school nurse, concerned chaperones and staff, and friends who have my daughter's back, we decided, with my daughter, that she'd travel without a parent. Here's the note [with awkward edits for privacy] I sent to the band director on the Monday after this year's trip:

Just a note to say thanks for a great music trip.

 

What a nice opportunity it was for the kids to attend Thursday's concert.  [My daughter] was especially excited to see such an incredible piano concerto performed. 

 

Between the concert, the chance for feedback and work on the concert band's competition pieces, and a fun and interesting collection of places to explore with friends, [my daughter] had a terrific time.

 

We're always happy to be involved in the life of the band, including chaperoning. But we're also grateful for the steps you and [the high school] as a whole have taken to allow [my daughter] to participate fully and safely without us present, encouraging her growing independence both diabetes-wise and beyond.

 

Looking forward to hearing tomorrow night's performance!

I mailed a similarly thankful note to the nurse who accompanied the kids on the trip. My daughter was in touch with her regularly via text, and they always knew where the other was. The nurse carried a little bag (within her giant 'nurse bag') with glucagon, glucose gel, and a spare meter set. Her assistance was never needed.

These notes reflected my acute awareness that my child was fortunate to have such a fun and positive trip.  There are other kids who are allowed to have these kinds of experiences but with much less quality support. And there are kids who are told (illegally but indisputably) that they can't participate at all. For three days Dexcom Share was my most-used app. The texts about the frosted flakes for breakfast and the bus full of rice crispy treats were cringe-worthy. But mostly, I'm thankful.