Funky Eye Syndrome

Nearly two years.

That is how long it's been since my last visit to Dr. Funky Eye, the trusted optical consultant who works at the Indiana Eye Clinic a couple miles from my home.

It was in August 2009, just about the time I've always visited my eye doctor through the years (start of school time, even though I've been out of school for a decade). Anyhow, I had planned a visit about the same time in 2010 but insurance changes took Dr. Funky Eye out of my network - so that he couldn't do my advanced eye exam, only my regular vision testing. We decided to find a new person, but that took longer than planned and eventually our vision insurance was elevated to a higher level so that Dr. Funky Eye was back in the network.

This was late last year, and I just hadn't gotten around to making a new appointment. One was scheduled for early February, but the Indy Icepocalypse shut everything down for a couple days and so my appointment was rescheduled. For now. It was time to get my Eye Funk on.

Insurance coverage all checked out, at least that's what I was led to believe, and the appointment was underway. I'm not a fan of doctor's office paperwork, but didn't object because of the 19-month lapse in visit and basically filled out all my medical information as I'd done in the past. Just on new forms.

Those traditional vision test routines began and I noticed that the Eye Pressure Tester had big blue circle lights shining in my eyes - they reminded me of the World Diabetes Day logo. More vision tests ensued, and I was made to feel stupid by not being able to read the lowest line - you know, the letters in a row that all seem to resemble a 2 or Z, a 5 or S, or maybe a C or G. Then the guessing game of what lens looks better, 1 or 2? I'm always guessing, because I'm as blind as a bat and they all look the same to me. Red Shirt Eye Assistant asked me what my last blood sugar was this morning, and seemed surprised that I'd done one just before my appointment began at 2 p.m. She seemed concerned that I responded with a 76 mg/dL, but took my word that was all OK. I also sensed some judgement when telling her my last A1c in December was 7.5, even though that was much lower than the last time I'd been there to visit. But, she wrote both down and left the room.

The wait began for the dialation drops to cloud my vision, so I sat alone in the room with the big vision machines hanging from the ceiling and chart on the wall detailing the basics of diabetic retinopathy. Fortunately, the DOC Twitter-verse kept me company and helped pass the time.

Dr. Funky Eye arrived in the room, we exchanged pleasantries about how long it'd been and that I hadn't noticed any changes vision-wise. He shined "brighter than the sun" lights into my eye, and we went through the process that I told him felt like "Eyeball Gymnastics." That brought a laugh, and he finished up.

"Well, your retinas look good..." Dr. Funky Eye said.

I smiled, as the breath I'd been holding for forever was finally released.

"... so far," he quipped.

My relief went away, and the anxiety returned.

A few more matches of Eyeball Gymnastics gave him some insight behind said eyeballs, and he sat back and scribbled some notes in my file. Even though it was mere seconds, the anticipation was killing me. Finally, Dr. Funky Eye spoke.

"There's some retinopathy building up in both eyes." He flipped through my chart to notes about the August 2009 visit. "A little more than the last time."

My heart caved in, and I felt the tears building up behind closed doors, ready to spring.

For the record, this isn't the first mention of retinopathy I've had. Dr. Funky Eye mentioned it for the first time a few years ago (2007, I believe) and it was the earliest, most minimal signs. I got my BGs under better control and did better with D-Management and a later visit found the retinopathy had basically reversed itself, and all appeared good in the eye world once again. My last visit in 2009 showed it had returned slightly, and despite my better control, this is the follow-up to that.

Dr. Funky Eye interjected, "But it's still mild. And just like before, the best thing you can do is just make sure your blood sugars stay as good as possible. Your A1C is a little high, so we need to work on that."

There was no use in arguing, defending how I've been trying to lower my BG averages and push for a lower A1c. That my A1c had dropped from the 8s to the 7s since the last time I'd seen him, or that I'm trial-testing a CGM to help get a better handle on trends. He didn't need to know all of that, because he was correct in making the point: My A1c is still too high. So that needs to be addressed.

One thing that's pertinent is that the glucoastering with Lows and Highs could be playing games with my retinas and optical nerves and stressing them out, and so working on leveling out my BGs is a priority. This was a thought in my mind at the moment as he was talking, one I didn't share because it's really more of a discussion point for my upcoming Endo visit.

I just nodded in understanding of what he was saying.

Dr Funky Eye continued, adding something about some protein was still building up. Nothing big there, just a note about not wearing my contacts as much. Maybe some eye drops. And then there was the Vision Pressure Test (that resembles WDD logos).

"Your eye pressure is a little higher than it should be, and that means you're above the Glaucoma Risk level," he said. "We don't know what that means or if there's glaucoma, but we'll have to do some more tests and see."

Basically, the channels that drain the fluid from inside my eyes are blocked or not draining properly, and more of that said fluid builds up and raises the pressure. This can damage the nerves and eye vessels, already tapped thanks to the retinopathy. This could be caused in part by diabetes, or have nothing at all to do with it, Dr. Funky Eye said. The tests a month or so out will determine where we are, and whether some special eye drops or anything else might be needed - or whether even more improved BGs might whip the inner eye workings into better control.

"Oh. Great," I said. "So what's the bad news?"
Dr. Funky Eye wrote an Rx for eye glasses and contact lenses changes, and we talked about a new visit in about four weeks. So, that's where we stand. With 27 years of Living With Diabetes, this is where we are at. I can see all the wonderful things in life, and the wonder and awesomeness of that can't be appreciated enough.

So, at this point, there's a whole bunch to be positive about. Sure, there's some negative that goes with it all, but you can't live your life being confined or paralyzed by the negative. A good friend and fellow D-Blogger who experienced a "one in a million" thing (totally unconnected to diabetes) has taught me what strength and positive attitude is all about, so I try to take some guidance fom that.

So I move on. Living at the moment with Funky Eye Syndrome.

And, for better or worse, I'm able to see the wonderous insurance paperwork on this Funky Eye visit that I'm sure will bless my mailbox before long... On second though, maybe it'd be better to be blind. Geez.


Unknown said…
These posts are the hardest for me as Joe's "Type 3" to read. I appreciate them...and...I know the reality of why we all work so hard to "control" (term used loosely) "D".

Thinking of you and I support you in all you do to take great care of yourself. It is bothersome that so many do not understand the work and effort that goes into managing type 1. I wish there was a bit more tact AND AN ADEQUATE KNOWLEDGE BASE used and drawn from by health care professionals when speaking with patients about "control" and lowering A1Cs.
Jeff said…
Why is it that ophthalmologists' staff members seem to be the most judgmental of all health care providers? They're the only ones who try to lecture me about A1c after asking the most stupid "What was your last BG?" question.

And for what it's worth, glaucoma's pretty easily managed: an eye drop two or three times a day. I've been doing it for years. Easy.
Meri said…
Eye appts are no fun. My 13 year old was spoken to like he was a 80 year old type 2 woman. They really don't get that he is a type 1 child, not a type 2 elderly adult. :(

Keep up the amazing work you are day at a time, baby steps. :)
Anonymous said…
Well done on lowering your A1c, you should be proud of all the hard work you've done to achieve it :)
Natalie said…
In no way telling you what to do, but relating my own experience -- I've found that lowering carbs has stabilized my BGs much more than they used to be. That means fewer highs, but also, fewer lows.

I really hope the retinopathy and possible glaucoma don't progress -- I know how frightening it must have been to have that conversation. I will be keeping you in my thoughts!
Jess said…
i'm sorry you're having to deal with all of this, mike. i hold my breath every time i go to the eye dr.

baby steps together, ok? hugs!
k2 said…
Mike -
It sucks that you have to deal with with "Funky Eye Syndrome" and all the judgement that goes with it!
Hang in there and continue to do the best you can.
Your working hard regarding your diabetes and don't let anyone tell you your not.
Simon said…
Hey Mike
Another excellent post.
For what it is worth, from someone who has been through the horrors of advanced diabetic eye problems (proliferative retinopathy, vitreous bleeds, bi-lateral cataracts multiple surgeries) i wouldn't think too far ahead. All you can do is what you can do. Don't get caught up thinking or worrying about what might be.
Keep up the great work
Robin said…
I always get judged at my early eye dialation appointment. And when they ask me what my blood sugar is today, I am always tempted to say "When? wake up? Before breakfast? 2 hours post breakfast? Lunch? Post lunch? Right before this appt? Which number do you want?" Never get any advice, just "lower that A1C." Uh, thanks Doc.

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