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.

Another Opening, Another Low

It's been a couple of years, and we forgot. Performing in musicals makes my kid low.

Except for an occasional adrenaline-induced high, especially on opening night. For which insulin should be dosed sparingly, not aggressively.

Exercise is the most obvious cause. This year's show was particularly dance intensive. At two and a half hours long and involving at least five quick costume changes, every performance resembled a marathon. Saturday's double-header was made possible by a giant between-shows order of Thai pineapple fried rice.

Being in a show also puts her off schedule. Diabetes likes to eat, move, sit still and sleep within the confines of a predictable routine. Dinner at 4:30 on show nights, 8:30 on dress rehearsal nights? Both unusual. Dancing and performing in the evening instead of sedentary homework? Unusual. Diner pancakes or cast party food post-show? Her insulin to carb ratios are set pretty accurately for regular mealtimes, not so well for midnight. There was lots of overnight juice.

Exhaustion is another probable contributor to the show lows. The weeks leading up to opening night involved long rehearsal days followed by late homework nights. Schoolwork didn't stop. Regularly scheduled music rehearsals didn't stop. She burned more energy than usual just to keep up with the long hours.

It's absolutely true that kids with diabetes can do the same things others do. They can even make it look effortless. Waking a couple of times per night for juice, calculated intermission snacks to improve the odds of stable second act blood sugar, checking and double-checking the backstage bag of supplies, and maintaining an overall high level of diabetes vigilance are invisible tasks, even to most of her cast-mates.  To her all those tasks are totally worth it to be able to participate in her high school's musical.

Wouldn't it be nice, though, if she could just do the same things other kids did without all of the extra effort?