Spring Thaw

Wow... three months. I can't believe it's been that long.

Well, we're still here -- and it looks like we've made it through yet another Wisconsin winter. The sun is shining, it's 60 degrees, and (Hallelujah!) I can move my arm again -- still limited, but way, way better than when I last posted to the blog.

Look how high I can reach with that arm... Hurray!

This, despite one major setback in early January.

When my insurance company decided that because I wasn't making "significant progress" with each and every visit to physical therapy, these visits now fell under the category of "maintenance" -- and as such, would no longer be covered by our plan.

No. Way.

So this is what went down: I called my case manager, and within two minutes discovered she was clueless about adhesive capsulitis (aka "frozen shoulder"). I'd barely hung up the phone when I was back on with my orthopedic specialist and PT.

Both wrote letters educating her about the condition; explaining that progress is slow and physical therapy, crucial.

And then I waited.

Four weeks.

During which time I experienced much regression (i.e., more pain, less motion).

Until finally, I called my case manager yet again:

"Have you received the letters from my doctor and physical therapist?" I ask her.

"No, I don't believe we've received any letters... but let me take a look."

"Wait a minute-- these were sent over three weeks ago."

The sound of paper shuffling on the other end.

"Oh yes, here they are.... hmmm... we'll have to review these and get back to you."

"Get back to me!? It's been FOUR WEEKS! And this thing is getting worse-- again! I'm back to waking up every night in pain... "

And then I just lose it.

"... I can't reach my back pocket! I can barely dress myself... this is INSANE! I've had this thing since early fall, finally get the right diagnosis, finally start making progress... and now because of some arbitrary decision -- a decision my DOCTOR does NOT agree with -- I'm back to where I was in November." I pause, tears now streaming into the receiver.

Silence. No response.

So I continue.

"What is your FULL name? I want to know exactly who is responsible for this decision."

"I-I... well... um... I will walk your file down for review right now," the case manager says. "I'll write 'priority' on it."

And then she pauses for maybe a second before saying, "I'm so sorry."

The next morning I get a call from my PT.

"Sandra, your insurance company just faxed approval for another 12 visits. We're back in business!"

So there you have it.

Six weeks later, I'm still doing my exercises, still going to PT-- which continues to be ridiculously painful (but I get back a little range of motion with each visit, so it's unbelievably worth it), and according to my doc, I am now in the third and final stage of this thing-- the thawing phase.

Hurray, indeed.

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.