Friday, June 20, 2014

The R Word

Dr. Eyes was almost done with my annual exam and had pronounced my right eye clear. She was almost done with my left when she saw them. More dots. More MAs (micro aneurysms) creeping toward the center of my macula.

She leaned to her assistant and rattled off a few acronyms and shorthand ophthalmology phrases. NPDR, I heard her say.

"NPDR?" I interrupted. "R? So this is R? This is what retinopathy is?"

"It's been retinopathy for the last year and a half. I called it trace before. Now I'm calling it mild. There is also moderate and severe. This is mild," she explained.

Wow. The last year and a half? And I didn't even realize that's what I was up against. Retroactive retinopathy. Heh. I didn't know that's what this has been. It was just pinholes to me. Cobwebs, we'd called them the first time. It seemed so manageable, so non-aggressive, just a facet of having had diabetes for over two decades. She had explained precisely what we were dealing with and I felt I had known where we stood.

The R word changes everything...if I let it.

It would be easy to be frustrated with her decision not to describe it to me as such, but instead I'm fascinated. It is completely true that the problem seemed manageable to me before it had a giant and scary COMPLICATION word stamped across it. As soon as the R word wedged itself in my head, so too did words like failure and futility and massive and scary and blindness.

Then I realized that nothing had changed from a few moments before. Nothing had changed from the year before when Dr. Ben had held my hand and said "This is nothing you did. This is diabetes." Nothing had changed from the first time Dr. Eyes pointed up into the far corner of the dilation room and said "cobwebs." I was fine then. I'm fine now. And I'll be fine. Right?

"It's time to hand you off to a retinal specialist," she said. "I will still see you for vision checks and annuals, but I want to hand you off to someone who has the tools to follow this. Let's see. Where are you living now? Okay, I want someone that is in the Plano office then. Dr. Retinas is really smart. And he's young, too. He can be with you for the long haul."

The long haul.

90% of people who've had this disease as long as I have experience some degree of retinopathy, of macular edema, of either NPDR or it's vicious big sister PDR.

It's nothing I did. Or didn't do.

Jesus, how hard it is to believe that. I can say it, I can type it, I can fucking PREACH it to others, but in a disease where you expend every last ounce of energy trying to control wiggling little variables and outcomes from one hour to the next, it's hard to accept that there may be rounds that you will lose no matter what you do. Futility.

My visit to Dr. Retinas the next week was a tough one on several counts.

I had a very negative, painful reaction to the first attempt to inject dye into my delicate little veins for the fluorescein angiogram. The vein in my arm refused to accept the dye, began to bulge, and spilled the dye into the surrounding tissues. What is usually a slight stinging with mild nausea for patients during this procedure was me crumpled in the floor crying, needing to vomit, an oscillating fan positioned toward my face, an ice pack on my swollen arm.

Honestly? It was fucking terrifying.

And then we had to try again.

The second time we went in through my hand and it took. I fought back nausea and tears with the needle in my hand as I pinned my teary eyes open, staring forward into the bright lights thinking, "So this is my future. This is what eye appointments will be now. This is what a complication feels like. It feels like pain and loneliness and too many questions and nausea." Oh, the nausea. I was sick for over an hour.

By the time I got back to Dr. Retinas to review the photos, I didn't even care anymore. Seriously. I just kind of blinked silently, trying to ask questions that mostly consisted of "Do we ever have to do that angiogram again?"

"No," he lied.

He showed me that both eyes have MAs on the macula. Pinholes, perhaps, but not cobwebs anymore. These itsy bitsy spiders were crawling all over my maculas, taking up residence center stage. And he showed me where the left one was bleeding out. You could see the little fluorescent spillage on the black and white photo.

Since I don't have any swelling (edema) or vision loss, no fluid on my optic nerve, etc, all we do is watch. Wait. Come back in 6 months. Watch and wait. Watch and wait.

We're in this for the long haul.

I won't be beaten by a word.

"The precision of naming takes away from the uniqueness of seeing."
---Pierre Bonnard, French painter (1867-1947)


  1. Oh, Melissa, the "we'll just have to wait and see" is horrible. I've been there, done it, with many of my complications. How can we continue to live a purposeful, joyful, life when there's a sword of Damocles hanging over our heads? People just don't get it. weren't rushed into the laser room, and you don't have to go back for 6 months, and you are getting stellar care.
    Keep marching on, my friend. I will keep you in my thoughts.

  2. I love you my friend and I can't wait to give you a hug. XOXO

  3. Sending you all my love, and hugs, lots of hugs.

  4. I soooo understand, after 47 years of the D word, last year I was given the R word and also the, well after so many years....... late in going to my check up, scheduled end of July should of been April, but floaters as well

  5. I have nothing to say, but I read this and thank you.

  6. Hugs to you. You and your family are awesome. #dblogcheck