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Diabetes: When Being “No Worse” Means Progress

“Everything looks good.  No progress is good, actually.  Means your eyes haven’t deteriorated any further in the last five months.”  Dr S, my eye doctor at the Joslin Clinic, ran her fingers across the keyboard, typing notes into my online file.

“So it’s the same as back in November?  When I moved from mild to moderate retinopathy?”

“Right.  Still non-proliferative, but the same.  Not worse, by any stretch.  We’re working with a few spots, a very small bit of leakage, but nothing I’d recommend treatment for, other than watching it closely.”

I let out the breath I didn’t realize I was holding.  The fluorescent bulbs in the room were bright and ricocheting off the white walls, making me feel like I was in an avalanche of light.

“We do want to check on one thing, though.”  She turned her chair towards me.  “There appears to be some swelling of the optic nerve.  And I’d like to have that checked more precisely with the OCT test.”

I looked over at the eye chart on the far wall.  When I had first come into the room, I wanted to go over to the teeniest line and commit it to memory, so I could recite it at will.  “SNDRZ,” I’d say, and they’d cancel all other tests that day, in recognition of my clever eyeballs.

“Okay.  Was there swelling last time?”  I couldn’t remember it being mentioned.

“Yes, it’s here in your chart.  And from what I can tell, it’s still present.  But my measurements are subjective, and I’d like to run a more precise test, so we know exactly where we’re at with this.  The test is really just another picture of your eye; it’s not painful.”

“I can’t argue with that.  So sure, let’s do that test.”

I went back into the dilation waiting room to be called in for the OCT test.  The lights were dim and a large television displayed HD images of starfish regenerating lost limbs as they crept along the ocean floor.

“The starfish reaches out with the limb that is still growing back.  It remembers what was once there and what will be there again,” Leonard Nimoy narrated.  I pictured my eyeball, crawling across the ocean floor, trailing its optic nerve in the sand.

“Kerri Sparling?”  The eye photographer (what is his official title?) brought me into a room.  “Just rest your chin here, and stare straight ahead at the X.  I’ll tell you when you can blink, and we’ll grab a few images of those eyes, okay?”

“Just look at the Space Invader thing in there?”

He laughed.  “Yup, right at him.” The OCT test was completed in a matter of quick clicks, and I returned to the waiting room to wait patiently for my doctor to review the results with me.

“Kerri?  Come on back,” Dr. S said, holding computer print outs in her hand.  The office door shut with a snap, and we stood in the middle of the room, crowding around these papers like kids with a treasure map.

“This?  Is your optic nerve.  See how it’s thick on both sides and has that dip in the middle?”  She pointed, and I panicked.

“Should it have that!?”

“Yes, it’s exactly what it should have.  There isn’t much swelling at all.  Actually, there’s barely any, which is why I wanted you to have this test in the first place, so we were measuring precisely and not panicking preemptively.”  She smiled warmly.  “Everything looks good.  Let’s get together again in four months, okay?”

Flowers are good for these kinds of posts, because pictures of eyeballs are nasty.

“Sounds great.”  I went to get the door, but turned back to her.  “So my eyes are okay?  I mean, not perfect and they still have the moderate retinopathy and all that crap, but there’s nothing to panic about, right?  I can hold steady and relax about this a little?  You said no progress is a good thing, right?  I tend to freak out.  Does it show?  I bet it shows.”  The incessant questions spilling from my mouth and my freakishly-dilated eyes probably painted me a bit … off.

“You are fine.  Go home and enjoy that first birthday party.  I’ll see you in four months.”

These appointments are hard for me to follow through on, for a dozen different reasons.  But one of the big reasons is fear.  Sometimes I want to go full-on ostrich about this whole disease and pretend it’s not happening.  Weird thing is, I always feel better after I know where things stand.  Even if the news isn’t always the best news.  I’m learning to roll with it.

And that’s progress.

*This blog post was originally published at Six Until Me.*

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2 Responses to “Diabetes: When Being “No Worse” Means Progress”

  1. Josh says:

    😉 You and I are in the same boat. ( I follow your posts on Facebook sometimes) Reading this felt like you reached into my mind and pulled out my exact thoughts. I go to Beetham as well, and have Moderate BDR and worry like hell all the time about progression. I have had Type 1 for 32 years and I guess even though I need to get the a1c under 7 ( tough to do as a brittle Diabetic) It is my hope I never progress to PDR. I wish you luck and thanks for the red.

    Warm wishes,

  2. Josh says:

    Of course I meant to say thanks for the READ 😉 . I may have retinopathy, but can still type.

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