[moon]

First - no, I don't have retinopathy, at least 'nothing obvious.'

Sunday morning my right eye went blurry. Since I have macular degeneration, every change freaks me out. I didn't think this was macular related because that's not how a bleed manifests, but still...

Made an appt with a retinologist here in CA (I saw one in NC just a few months ago) who was highly recommended and has an impressive CV. I was there 3 hours. Lots of testing.

The good news is it was not a bleed, the bad news is that I have yet another eye condition - Vitreomacular Adhesion - in both eyes, that's distorting my vision. I'm feeling very scared and overwhelmed, and him observing "you're a worrier, aren't you?" wasn't helpful. Well, yes Sir, I am. I don't have your resources for when I lose independence, I need to figure out how I'm going to manage my life. The fact it's not an issue right now, this week, this year, does not take the concern off the table. What the hell?

I found this definition which said there is an association with diabetic retinopathy and with macular degeneration. Makes sense it'd knock on my door.

Anyway - he also said I have hardening of the arteries beyond my years, and that the one place they can see this is through the eyes. I didn't know that - and wish I didn't know it now. My cholesterol is high (I know, I know) and now I find out my arteries have passed their youth and even middle-age, and he wants me to get a cardiac workup. "I'm not going to take statins" was the wrong thing to say.

He said I need to get my cholesterol under control no matter how I do it - if it takes statins to do it, yada yada. I haven't decided if I'll go to a cardiologist because first I have to be prepared to do something with the information.

I know, I've followed the links about cholesterol, but the fact is I'm not a scientist, not a doc, not a researcher, and not able to be an expert on the issue. It scares me, but I still won't take statins because the truth is, I'm far more afraid of losing my eyes than the possibility of my heart giving out. That's sad but the truth.

 

[Shanny]

Dangitall, Moon . . . that WAS a bad day. I'm right in there with you on the eyes vs. heart—I'd be a complete loss if my vision goes. I wonder if a second opinion would be worth the trouble & expense? I'd be thinking about it if I were you . . . :hug:

 

[d33na]

*nods* same here *hugz* It's difficult when you're not an expert in biology (my worst subject area) and the research is not only baffling it's in a language that may as well be foreign...and researchers disagree ...but yeah I'd want my eyes too...

 

[Patdart]

Ouch, Moon. Hope you are feeling better today and have made a plan of attack. That WAS a bad day. I'm so sorry about it. If that were me, I'd seek a second opinion. I feel like you about statins, but mine dropped like a rock when I went to 20 carbs or less per day. Could you try that? Or have you already? Also, what about niacin?

In any case, I agree with you, my vision is very important to me.

Hugs all around,

 

[moon]

Thanks guys. I admit to being a dark shade of blue yesterday. Today I’m better, focusing more on the present and trying not to live in a place of fear.

I'm giving a lot of thought to a visual bucket list - crazy ideas of tossing all resources at world travel while I can still see. I travelled a lot when I was younger, before fibromyalgia, lived abroad, and there’s so much more I want to do and see. Can't do this until my mom dies because I need to be there for her, but afterwards ... Maybe this could be a blessing like diabetes, enriching my life beyond measure by forcing me to plow into it, seizing every visual moment. Lots of people don't get these life warnings, they just get slammed. I've lost several of my closest friends in the last year.

I'll be losing my independence, it's a question of when not if. But I could have 5 years or more of being able to drive. Nobody knows. I need to focus on how best to use that time.

The good news about the adhesion in my right eye is that it spontaenously ‘let go’ so the blurriness is mostly gone. My left eye has a lot of distortion, has been getting worse the last year or two, but the right eye compensates nicely. That’s why I was so freaked when my right eye had an issue – I’m right-eyed!

I hear you on the second opinion, but I saw the photos of my eyes with the adhesion craters, and all the info I’ve gotten from both retinologists makes sense with everything I read in general online and in my macular mailing list. The important thing is to be vigilant, do a quick visual test with my eyes a couple times/wk, and go in to the retinologist if there are any sudden changes. Until then, it’s steady as she goes.

Thanks for listening and for the verbal hugs – it really helps.