Frozen

"Do you have diabetes?"

"Wha - What? No, no I don't" I say, looking up at the doctor's face— trying to breathe through the pain.

"Now, lie still and try to relax your arm," he says, taking hold of my right hand once again — then lifting my arm straight up toward the ceiling.

And again I try to breathe, as this time the doc moves my arm slowly back toward my head.

Only he can't get it anywhere near my head.

Like there's some large invisible wedge between my arm and the exam table.

"Well, this is a classic case," he says, bringing my arm back down by my side and then turning to the resident sitting in a chair next to the exam table — a young dark-haired woman wearing large white-framed eyeglasses. "No history of trauma, several months of rapid loss of motion... let's turn the arm inward."

Taking hold of my wrist and elbow, he bends my arm at a right angle and attempts to twist it down toward my stomach.

I cry out— because that tiny motion feels like he's just stabbed the top and front of my shoulder with a knife.

Breathe... breathe...

"Range of motion is lost in all directions," he says, with a note of finality that makes me queasy.

Placing my arm by my side, he turns once again to the resident. They continue talking about my symptoms, my history— while I stare at the ceiling, tears sliding down into my hair.

No, it's not just what they're saying, it's the damn pain still reverberating from the top of my shoulder down to my elbow.

Please just stop.

"... so we have a severe loss of motion in all directions, high level of pain... we're dealing with only one of two things, aren't we?"

"Yes," the resident responds tentatively.

"And what tests would you order?"

"X-ray."

"Yes— which was already done, showing healthy bones with some calcification on an otherwise healthy rotator cuff, meaning we can rule out... what?

"Arthritis," the resident says, sounding more confident.

"Correct. So what is the only other thing this could be?

"Adhesive capsulitis."

"Exactly!"

They smile at each other, clearly pleased that this resident gave the right answer.

I clear my throat.

Both turn toward me.

"Yes," the doc begins, "I'm very sorry, but what you have is adhesive capsulitis — a "frozen shoulder." It's a painful condition- "

"Yes, I know."

"... one with a very long recovery period. First, understand that you didn't do anything wrong. There's nothing you could have done to stop this. No one is really sure why this happens or how. We do believe that there is an autoimmune component to it— partly because the majority of those who suffer from the condition have diabetes."

"My son has type 1 diabetes," I say, distractedly, pulling myself up so that I'm seated on the table, legs dangling over the edge like a little kid's.

The doctor tells me I'll need physical therapy for as long as a year or more. He tells me about the three stages — "freezing, frozen and thawing" — and that to minimize range of motion and muscle loss, I'll need to do a lot of work. A lot of painful work.

"What about a cortisone shot?" I ask, hopefully.

"A steroid shot won't cure this, and we see mixed results when using it to treat frozen shoulder symptoms, but it might relieve some of the pain for a short time."

"Could you give me a ball park percentage of people who present like me and actually experience pain relief from the shot?"

"I'd say it's about 50%."

"Oh."

"It's always something we can try," he tells me, "if the pain becomes unbearable."

Three hours ago, when I arrived for my appointment with this specialist — this orthopedist who deals only with shoulders — I'd been so ready to plead for a steroid shot...

But now.

"Well, it's pretty bad at night and if I challenge it in any way..." my voice fades and then, "I think I'll hold off on the shot today."

So that's it.

I've heard about this thing, but could never really appreciate how bad it was until now.

Until I couldn't go to bed without waking repeatedly in crushing pain, simply because I rolled onto my shoulder.

Until I couldn't get my coat off without a struggle.

Until I couldn't reach my back pocket.

Until there was no sledding.

(Not even on the backyard hill)

No hugging my children without pain...

I don't think I've stopped shaking since yesterday's appointment.

Growing Pain

Over the last four years I've received messages from readers telling me how we're doing a "beautiful job" helping Joseph manage his diabetes and that I'm an "amazing" mom.

Well at the beginning of last month, I felt about as far from amazing as any mom could get — and even now, I'm still a little shaky.

You see, Joseph was sneaking food, treats mostly — but worse, he wasn't bolusing for them.

When I first found out that he wasn't being truthful with us, it hurt.

A lot.

But the not bolusing, well that just froze me in my tracks.

For several days and nights after I realized what was going on, I couldn't think of anything but what this might do to him in the long run — not just the effects of the high blood sugars, but the habit he seemed to be falling into.

And desperately, I wondered why?

We'd always worked together on this stuff, but now...

It started with small things, a candy wrapper in his room, a number of unexpected high blood sugars... coming to a head just after Halloween — when we left a bright red plastic bag filled with nearly 4 lbs of candy sitting on our kitchen counter.

(Stupid to have left this out, I know.)

Within a few days the bag weighed considerably less.

I discovered this after yet another argument with Joseph about him having eaten a snack without bolusing — this time, a chocolate chip granola bar.

His blood sugar was 404.

I asked him why he hadn't bolused.

"I don't know," he said turning away from me.

I got upset, choking out that I didn't want him to hurt himself. That if he gets in the habit of eating without insulin, he could set himself up for other health problems — serious health problems...

And when it seemed like he was tuning me out, "... some people have lost their sight because they ignored their diabetes, because they didn't take care of themselves."

Immediately, I wanted to take it back.

"Wait, Bud- "

But he was already halfway up the stairs, heading to his room.

Shaken, I returned to the kitchen to start making dinner. To calm down. That's when I noticed that red bag on the counter next to the stove, and — looking at it closely for the first time in a few days — saw the empty wrappers sticking out of the top of it. I opened it wider, and there were piles of them.

Oh no.

"Joseph," I called up the stairs, "was that granola bar the only thing you ate?"

No answer.

"Joseph— please, come downstairs."

A moment later he walked slowly into the kitchen wearing an inscrutable expression, then his eyes traveled to the red bag on the counter.

"No, I had a mini Snickers too."

"But why, Bud? It can't feel good to be high... if you eat something, please, you have to bolus for it."

"Yeah, I know." That's all he said.

The next afternoon, when he arrived home from school, I asked Joseph to sit down with me on the couch in our lower level. To talk.

"What's really going on, Bud?"

"I don't know... it's just hard having diabetes... I mean, no one else has to think about this stuff, they just eat what they want when they want. You know what B told me on the phone last night? He has his Halloween bag under his bed, his parents have no idea it's there... "

"But Honey- "

" ... and when I see your face when I have a high blood sugar, I just feel bad."

"Bud, I- I'm sorry. I don't know what to say... If I look upset when you're high, it's not you... I'm not angry or disappointed in you, I'm just worried about the high. I'm sorry that I made you feel like that. No matter what we do, there are always gonna be highs, lows — we can't make this perfect. Nothing is perfect."

"I know, I just hate having this," he said, his voice catching — and then he looked down at his hands for a few seconds before going on, "and please Mom, please don't say I'm gonna go blind."

Looking up at me, eyes wet with tears, he suddenly looked very young.

I put my arms around him— my own tears dripping down onto his shoulder as I held him close.

"I'm sorry, Bud — that was a horrible thing to say. I was so desperate to get through to you. I don't want to scare you, I just want you to take care of yourself. Listen, we are going to figure this out, I promise."

For a moment, we just sat there and said nothing.

Finally, we both stood up. "Hey, I'm hungry," he said. Then, without missing a beat, he pulled out his meter and pricked a heavily calloused finger.

"189... I can wait until dinner."

"No, Bud - go eat something now if you're hungry, just bolus for it."

"Okay," he said, "I'll have a banana," and he ran up the stairs taking two at a time.

Later, with the rich smell of ratatouille filling the kitchen, I called upstairs to the kids, telling them dinner will be ready soon, giving them the 10-minute warning. Evan clomped heavily down the stairs, shuffled into the kitchen and grudgingly agreed to try the ratatouille, but insisted that she "hates" polenta.

Shaking my head, I handed her some utensils to put on the table.

"Bud, can you do a check?" I said to Joseph, while pulling four white plates out of the cupboard.

He's 249.

"Hey, did you bolus for that banana?"

"Yes," he said, "two units." Then he filled several glasses with lime fizzy water, placed them on the table, and headed back up to his room.

A few minutes later, while standing next to Ryan at the stove, I noticed something on the floor in a corner of the kitchen— a large, empty, silver can.

And immediately I knew. Because Ryan's mom had called me earlier that day to ask if she should bring more cookies when she comes down in a couple of weeks. I'd checked that can and told her "yes" — because there was one cookie left.

I walked upstairs, knocked on Joseph's bedroom door and just asked him.

"Yeah, I had one," he said without looking up.

"When you had the banana?"

"Yeah."

"And you didn't bolus for it."

"No, I didn't," he said quietly.

"But, why?" I asked, desperate for an answer.

"Because I knew you wouldn't want me to have one. That you'd rather I made a healthy choice."

"Bud, even if you didn't have diabetes, I'd encourage you to eat healthy — that's what Mom's do — it's the not bolusing that really scares me."

Then I turned around, and walked back down the stairs, a massive lump sticking at the back of my throat.

I don't understand — he can have treats . . . when we have dessert, he has dessert; when he wants to go get ice cream with his friends, I let him...

His last A1c was 8.7

It's been creeping up again, thanks to many unexplained highs— highs I thought were due to the hormones of a growing teen (and maybe that's at least partly true), but now I don't know.

Joseph and I have always been able to talk about things, about almost anything, really. But lately, we've been arguing a ton.

I don't know what to do.

********************************************************

I wrote much of this post about three weeks ago — since then, I've done a good deal of crying and a lot of thinking. I've also gone online and — among other things — read this thread on tudiabetes.org. I discovered that what we've been going through is fairly common.

Just knowing we weren't alone gave me strength — and made me believe that we could get through this.

It took a lot more talking — and far more listening — before it finally hit me:

Joseph's sneaking food and not bolusing for it may have had less to do with deprivation than it did with him needing more independence.

(Yes, I realize to some this may sound counterintuitive, but hear me out.)

I honestly believe that by making choices he knew I wouldn't like, by not bolusing, he was struggling with us — with me — to "take the wheel." To show us that if we continue to drive this thing and not trust him to do it, we are going to crash.

He's going to crash.

(Does this make any sense?)

Joseph knows more about nutrition than most people and eats healthy food at home; he knows how to count carbs and how to bolus for food better than we do.

He has a good foundation.

Now, while we've let him eat like a kid and, more recently, like a teenager, he's always asked or sent a text to one of us when he's going to eat a snack, with carbs and a bolus calculation — and for a long while now, 99.9% of the time we text or say "go for it."

And I think it's that routine that needed to change.

Sooo...

Two weeks ago, I went up to his room, sat down next to him on the edge of his bed and took a deep breath.

"Bud, how would you feel about eating snacks and not calling or texting me about them? About coming home from school and getting something out of the pantry without checking with me or Dad first?

Still checking your blood sugar and bolusing, but not checking with us?"

His face lights up.

"Really?"

"Yes, really. Bud, I've been stupid. I should have done this a long time ago. You know, when I was your age I used to eat these things called "Hot Fries"... Andy Capp's Hot Fries. Never asked my mom, I just walked down to Prevites Market, bought a bag and ate them. And I loved Nestle Crunch bars, too. Now don't get me wrong," I add quickly, "I didn't sit down and eat masses of them, but I ate treats when I was a teenager. And I didn't ask for anyone's permission to do it... I want you to be able to do that too."

I'm about to say more, but I can't — because Joseph has me in a bear hug.

"Mom, I love you," he says, holding me tight, "and I'm sorry about not bolusing. I'm really, really sorry."

Then he pulls away from me, suddenly looking much older.

"I can do this, Mom."

And for the first time in weeks, I feel like I've done the right thing.