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)

Monster

On the outside, a woman approaching her medical team asking questions about pregnancy with pre-existing diabetes seems to be a confident woman, merely doing her due diligence in preparing for the toughest role in her future - asking the right questions, gathering facts, paving the way.

But on the inside, that woman is panicked. She has heard from some older relative about how she shouldn't "risk it." She has been told by some medical professional at some point that she'll have to have "perfect" blood sugars (really? perfect?). Dr. Google has thrown her hundreds of scenarios and "facts" and concerns.

What she needs from you, Doctor, is a careful and compassionate hand.

I had my kids at ages 30 and 32, but my journey toward getting pregnant started long before that. Long before that. When I was 24 and constantly butting heads with my endocrinologist, my friend Janet told me about her new doctor - a woman - who was very supportive of her desire to get pregnant. She said she'd switched from our endo (who had said "never gonna happen") and I jumped ship right along with her. I wasn't dating anyone, I hadn't yet met my husband, and my A1c was 8.6% - the lowest I'd seen in my lifetime - finally in the single digits.

Dr. M promised me that we would get there if that was what I wanted. And we started working.

Shortly after I was married at age 28, I saw my first A1c under 7 and I cried. Oh, how I cried. "I can do it," I told myself with magnetic poetry as I posted it on the fridge, July 2008.

I let my amazing endo guide me in all my steps. She told me which OBGYNs she had sent patients to, she moved me to the resident CDE in charge of the preggos, she called me personally to greenlight me when I hit the magic number of 6.1%, and she was this lucid, brilliant, strong voice of reason when others on my OB team demanded numbers and targets that were unrealistic.

She was the one on my team who told me that no one could isolate whether my ketones one evening were from dehydration, starvation, a bad vial, a bad site, or whatever and assured me that my baby would be fine. She was the eyerolling smartmouth who said that if I never went over 120 an hour after a meal (as my perinatalogist was demanding), I'd be "on the floor" by the end of my insulin action.

This is the kind of team you want on your side during a pregnancy and you have every right to that kind of care.

Care. Not scare.

On August 8, I saw what the alternative would have been and I have spent the last few weeks disgusted. Incensed. With an anger roiling in my stomach until it bubbles up into this post. I thought I'd wait until I calmed a bit, but I am more angry today listening to the archived video again than I was the moment I heard it live.

Easy on the Eyes

At the Friends for Life conference this year, Dr. Ben Szirth and a team of eye care specialists from the Institute of Ophthalmology and Visual Science from the New Jersey Medical School provided free retinal screenings for people with type 1 diabetes for the seventh year in a row. But this was my first time being screened at the conference.

I saw quite a few different people who all looked at my eyes at various stations and with various impressive pieces of equipment. It felt a bit like speed dating, going from chair to chair and talking congenially with pleasant strangers.

The first technician performed some basic eye chart style vision checks, having me stand at a distance and read the eye chart covering one eye, then the other. Pretty standard.

The second technician took some pictures of my retinas for the doctor to review. He showed me the photos and explained what he was photographing.

My third station included an autorefractor that I've seen at my usual checkups - you're asked to focus on an image of a hot air balloon while the machine measures your specific vision correction needs.

My next stop was to measure my eye pressure. I believe it's actually called a tonometer, but I have always thought of it in my head as "the air puffer thingy." I've often seen my eye pressure in the borderline high range (normal is 12-22 mm Hg). I'm usually 18, 19, 20. I don't know that I've ever seen above 21. The day of this retinal screening? I was clocking in 24s, 25s. WTH? We measured it again. Same. Hmm. Not pleased.

It had been a rough night. I'd had a pod malfunction that had sent my overnight blood sugar into the 400s. I had taken a correction injection around 3am and decided to deal with changing out the pod the next morning. By breakfast, I was down into the high 200s, and by my retinal screening at 10:20am, I was still floating in the 200s well above my target range.

I was then directed to the machine that measures the thickness of your retina. I've been going to the ophthalmologist for 17 years and I had never encountered this piece of equipment before.

Dr. Ben stood nearby to review the results and explained to me that this was a $50,000 piece of equipment that many of his contemporaries told him was unnecessary to bring to a screening like this...but I am so glad we had it.

289.

My right eye has always been my well-behaved eye. My right eye has always had clearer vision, fewer hemorrhages, lower pressure. But my retinal thickness on the left measured normal (between 250 and 280) and it was my right eye that was cause for concern. 289. Let's check that again. 287. Damn.

So what does that thickness mean? That's what this machine was able to tell us. He studied the image, focusing on the big black bulge in the middle.

Complication

Complication.

That's such a gentle word in normal parlance. A hiccup. A head scratcher. A riddle.

How will we fit an extra chair at the table? Oh dear, that's a complication I hadn't considered. How do you solve for X in this equation? Well, that's a little complicated. Let me think. What's going on between you and your ex? Eh, it's kind of complicated.

To people with diabetes, the word complication is code for "quietly life-shattering." It's a code word for failure.

The list of possible complications from diabetes is ridiculously depressing. I'd list them here, but between direct and indirect correlation, the list would be so long that I couldn't be sure to exhaust the possibilities. Essentially, if a system or organ requires nerves, blood, or oxygen, it's fair game. Eyes, kidneys, heart, lungs, reproductive organs, skin, bones, stomach. I can't think of a system that's off-limits. It's awful to think about. So we don't. Most of us online, I mean. We choke it down and push it back and we don't dwell on it.

Dr. Bill Polonsky (love him) likes to say, however, that well-controlled diabetes is the leading cause of NOTHING. That reassurance always bolstered me when I'd let my thoughts wander to darkened corners.

But then when I wander into the many parent forums where I lurk and see parents reassure one another with "but all of these people with complications, they don't have the tools that we do. They didn't take care of themselves like our kids will..."

It makes me stop and grieve for the parent whose child passes away while sleeping - the parent who was not to blame and was doing everything "right." It makes me think of my friends with retinal problems or nervous system problems or tingling in their toes, regardless of whether or not they have managed their diabetes well.

And it makes me righteously angry.