« Be Your Own Advocate. | Main | From Abby: SugarStats. »

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.

Comments

I'm glad to hear it, Kerri! Sounds like you have a great eye doctor. I used to be a lot more "head in the sand" when it comes to this stuff, but I'm slowly coming to realize how true the statement "knowledge is power" REALLY is!

Oh this is so great, Kerri! I am so happy that things are better/not worse. I know this is a huge relief for you. Hopefully now you can relax a little bit and enjoy BSparl's first birthday party. Yay, smiles all around! =D

Glad everything is okay, Kerri. :-) You are brave to be living this, braver to be sharing it so honestly. One more invisible terror of diabetes... One more victory for the PWDs

I had swelling/fluid in my optic nerve a few years ago that's not there anymore. I hope yours is nothing to fret over, too. *hug*

YAY!! Don't you just love that emotional high you get as you leave a doctor's office after getting great news?!?! Those are some of the "best feeling smiles" out there! (well of course #2 behind anything related to our babies)

Glad to hear the good news!

Woo Hoo! So happy for you...

Yeah for progress. Yeah for good news and a YEAH for you for following through the hard times too.

Congrats. Aren't those OCT tests kind of cool, and a lot less painful than those darn eyeball photos.

I am glad to hear there is no progress. I LOL when you mentioned the dilated pupil pose, spilling questions out at your Doc. Take care and thanks for sharing.

As for the exact title of the eye photographer, I used to be the tech that took the OCT pictures when I worked for an opthalmologist. My official title was "OCT Bitch." haha!

last time i went to my retinal screening, they said i had a few more burst capillaries, but that i shouldn't worry... it's tough not too though!

Hooray! What a sense of RELIEF!
I still have to thank you for your earlier post (about making the appointment) as it got me to FINALLY go in for a dialated eye exam.

Thank you!

Oh yeah! And THAT is how an appointment is supposed to go! Great job!

What a great appointment! I'm like you, not wanting to go but better after knowing where I stand.

Awesome!! Sprinkles is putting magic on you!!

It's a beautiful thing & I'm so happy for you!

That is great to hear. You are doing a great job.

Oh those appointments are so nerve wracking - I want to reach through the computer and give you a huge hug!!!! But I'm so glad things are holding steady. And you are right, knowing where you stand is much better than letting a fearful imagination run wild.

My optometrist said that raised ridges and a depression in the middle of the optic nerve are called "cupping" and can be a sign of normal-pressure glaucoma, so he always does a visual field test on me. I've always passed it with flying colors, but I wonder if they're doing that test on you?

So glad things are looking good Kerri. The eye stuff can be scary. Let me know if you ever want to chat about retinopathy with someone who understands. It sounds like you're in good hands, which is always comforting.

Kerri,

I risk sounding like a broken record, but your description of your state of mind in this instance was like seeing my thoughts pulled and placed on paper. I have some non clinically significant DME and Moderate NPDR and have been this way for a while. I think about it quite a bit, and do struggle with the fear of affected vision. I always hope with better control I can reverse it even to Mild NPDR. ;-) I have however started taking Pycnogenol which is something eye Drs in Europe have been using to treat Retinopathy for years with some interesting results. Look it up and if you want to try it, the best I have found is at GNC. Get the 50mg 120 count bottle, as that is the best deal since you need to take 150mg a day for it to work. Hey anything that might help. I hope some day to bump into in the halls of Joslin. It would be good to talk to another T1. It occurred to me, I have had it since 1980 and, forget to pat myself on the back that I have done this well so far. Good luck and do keep us posted on your eyes.

Post a comment

(All comments are moderated. Thanks for your patience!)