Since the hysterectomy from hell, I’ve had all sorts of health problems. Related or no, life took a huge dive after that surgery, with all the ensuing complications, physical, emotional and mental.
One of the very obvious problems is my left eye. The vision in my left eye is now always blurry, and I can’t see clearly ever, no matter how hard I try to focus.
I was able to ignore it, cos hey, I have another eye. And the aforementioned complications of said surgery have given me White Coat Syndrome, level Nuclear Armageddon, meaning I don’t want to see a doctor, ever, unless I’m dying or really darn close.
Understandable, I think. If not exactly reasonable.
Before this whole autoimmune adventure began I had excellent vision – as in 6/5 vision. That means I used to be able to see things at 6 metres that the average person can see at 5 metres. So basically, better than average vision, better than 20/20 (6/6 is metric, 20/20 is imperial). Damn fine place to start from.
After I started taking regular prednisone, my vision started to deteriorate a little, due to cataracts, and the ongoing inflammation that severe inflammatory arthritis can cause. But my vision was still good…no doctor was concerned because they’re all about absolutes. They see it as ‘This is the cut-off number and if you’re over the cut-off number, you’re fine. Please go away and don’t waste my time’.
For me though, and all good doctors (I believe), it’s about the trend. And the individual. I started from above average, and five months ago was just below average. That represents a change, it represents the impact of my disease and/or medications on my vision.
Which is completely different to the person sitting next to me who has always had just below average vision. Yet average-to-poor doctors treat us both as all the same. Fail.
Individualised medicine is coming, but it’s slow…oh so slow. But that’s just another one of my soap boxes, and really not relevant to this little story. But I do like to rant. Now back to the point…
My vision represented a very slow decline, over around 6 years or so. The last test about five months ago was still 6/6 and 6/5. Nothing at all to worry about. I knew my vision was slowly deteriorating, but hey, so is everyone’s. Maybe mine’s going a little faster, but not that much. So I didn’t really worry about it much. Watch and wait.
So, despite my left eye being pretty poorly since the-surgery-we-do-not-speak-of (cos there might be a legal case pending), my right eye was doing the job just fine. I could ignore my blurred vision quite easily and indulge my doctorphobia.
And then my right eye got all inflamed.
It was red and swollen and inflamed and bloodshot and yes, my vision was blurred, but as those of us with severe inflammatory arthritis know, this is a thing. Just another thing, that happens pretty regularly…and it’s a pest.
But honestly, it needs to be checked out. Like, not on the first day, cos mostly it will just take care of itself, and I’m not MADE OF MONEY. But if it goes on for a week, it needs looking at. (NOTE: Probably sooner than a week for normal people, but I leave things much too long and far too late. Do as I say, not as I do.)
It needs to be looked at cos it could be uveitis, or something worse, and you could actually go blind. That’s extremely unlikely, but who wants to be that 1 in 20,000 patient?
Wait. I am regularly that 1 in 20,000 patient.
And still, ignoring it seemed the right way to go. For over a week, cos I’m like that. But then it did have a significant impact on my bracelet making (new obsessive behaviour to combat PTSD caused by almost dying after the aforementioned hysterectomy from hell. Also known as ‘my happy place’) And we can’t have THAT, now can we? Bracelets MATTER!
So today I went to the ophthalmologist. As luck would have it, my right eye did in fact clear up over the weekend. It’s still a bit sore and light sensitive, but it’s mostly normal.
That’s another reason I don’t make doctor’s appointments quickly…I really HATE showing up and saying ‘well, last week it was all red and blood shot and I had to stay in a darkened room and stuff, but then on the weekend it just got better…’
We’ve all been there. We’ve gotten the t-shirt. More importantly we’ve gotten the eye-roll. Way too many times.
But my ophthalmologist is awesome. She checked me out and discovered my left eye is really quite bad. I didn’t notice how bad until the right eye went la-las, because the right eye was doing the lion’s share. But I’ve gone from almost 6/6 (20/20) to 6/18 (20/60) in my left eye. Over the course of a few weeks.
6/18 (20/60) vision is not terrible, it means in my left eye what normal people can see from 18 metres away I would need to be 6 metres away to see.
It IS considered visually impaired, however. If both my eyes were 6/18 I would not be allowed to have a driver’s license. So now we’re talking serious impediment to a happy, functional life.
But again, I have another eye that’s doing OK, so I’m OK. But if my right eye goes the same way as my left, I won’t be legally allowed to drive.
That’s starting to be a big hassle.
Best part? She doesn’t know why. Or rather, she has a theory but she’s not telling. You know when doctors do that. They say “I’m not sure. Try this and come back in a week”.
They’re guinea pigging you, testing their theory. When you come back in a week better, or otherwise, they are always far more forthcoming. Don’t fight it, life’s too short.
So, bottom line, I’m good cos my right eye is good. But I’m bad cos my left eye is losing visual acuity fast. I’m also bad because she can’t find anything majorly wrong – my cataracts are stable, my eye pressure is high, but it’s always high, so its stable for me (trends, remember?) and its not the plaquenil.
So I have steroid drops to hopefully clear up whatever is going on that she can’t see or won’t tell, and hope that it improves. And I go back in a week to be checked again.
And that’s the OTHER reason I hate seeing doctors. When you’re a chronic chick, one appointment always, and I mean ALWAYS leads to another appointment. This time it’s a follow up with her. Good. I like her. But often it’s a referral, a test, a scan…there is always more to look for, something else to investigate. And it’s NOT fun. Because it means your 46 year old body is falling apart all over the place. Because it means that some people think you’re a hypochondriac. But in truth, its just because that’s chronic life.