Hi everybody,
I can't wait for the day when I can come here and *help* people instead of asking so many questions (,but I guess this is the first part: learn from others and experience and then give back by sharing.) So thanks in advice for understanding
I'm having a heck of a time with photosensitivity...still. A little background: I have Rx glasses that I've been trying to get a new rx for for the last 4 of the last 6 years (I haven't been able to buy any b/c everything's been like looking through funhouse mirrors, truly lousy. Clip-on sunglasses just don't work either. I know my Rx has changed a lot in addition to the severe Sjorgren's, but the doc says I have to wait a couple more months to see how the Restasis pans out.) I've tried on Wileys and Panoptix at a store, but they're so heavy they hurt my nose and ears, they haven't been anywhere dark enough and they don't enclose my eyes enough (yes, I'm sorry, that sounds too picky, but I haven't given up trying) Even the all-around type found at places like Solumbra would just be *way* too heavy. Right now I have *serious* dark-glasses-envy for Annie Sullivan and welders (I wish it were lol.) Additionally, I'm buying a 6" brimmed sun-protective hat tomorrow (black seems like it would be easier for my eyes than a light color,) but I really need to figure out this dark glasses thing.
Sometimes I can go a few days and live normally, where indoor lights aren't too bad and overhead lights aren't pure murder (what *is* it about overhead light that's so incredibly painful? I *never* leave the house without those cheap-o eye-dialating temporary shades--outdoors, the sun here, is *always* too much.) But days like today I spend as much time in dark rooms as possible, maximum amout of light a t.v. about 10" away, a 60 watt reading lamp or all the blinds pulled with just one cracked for a hint of light. I've kind of come to a place of peace regarding needing to wear super-dark glasses, I'm just having trouble finding them--both, but most esp. the temporary sort until I can have new glasses made. Something like glasses for looking at an eclipse (o.k., that's a tinge extreme, but so, so close...) dark tinted glassed could look cool and let my eyes relax and be (could I hope) a bit more pain-free. Family resents having to live with kind of a "mole woman" like me, well, they just get really snippy about being asked not to turn on extra lights, *esp* overheads (is there some reason why those things are so murderously painful?) I just want to go back to "normal"...normalish, like this...
So, in short...Welding helmets are about the perfect darkness, but are hard to pull off with an outfit (unless I'm trying to look like a storm trooper. lol) and I seriously don't know where else to look to find the darkness I need (the only other thing I can think of is asking Eyemasters, where I got this pair of glasses over 6 years ago, if I can have these glasses tinted *really* darkly--although they have a slightly worn-off scratch coating. Wait, do you think that, for a price, of course, someplace like Eyemasters would do something like that? Otherwise, I *really* need the help of people who absolutely know what it's like--you--please?
I'm not entirely sure the etiology of the severe photophobia (the pain, I'm guessing, is Sjorgren's and needing new glasses?) The only other leads I have are I have mod.-severe RA and the rheumatologist keeps saying he won't rule out Lupus yet (but he hasn't done the bloods for it yet.) I have a few other indicators for Lupus, which would make sense...nevertheless, I'm just trying to find something that'll work
Thank you so much (for both the help and your time reading this, lol)--you're all kind of like the Elders of this site, so you have all my respect
Thanks, with heart!
achyeyes
I can't wait for the day when I can come here and *help* people instead of asking so many questions (,but I guess this is the first part: learn from others and experience and then give back by sharing.) So thanks in advice for understanding
I'm having a heck of a time with photosensitivity...still. A little background: I have Rx glasses that I've been trying to get a new rx for for the last 4 of the last 6 years (I haven't been able to buy any b/c everything's been like looking through funhouse mirrors, truly lousy. Clip-on sunglasses just don't work either. I know my Rx has changed a lot in addition to the severe Sjorgren's, but the doc says I have to wait a couple more months to see how the Restasis pans out.) I've tried on Wileys and Panoptix at a store, but they're so heavy they hurt my nose and ears, they haven't been anywhere dark enough and they don't enclose my eyes enough (yes, I'm sorry, that sounds too picky, but I haven't given up trying) Even the all-around type found at places like Solumbra would just be *way* too heavy. Right now I have *serious* dark-glasses-envy for Annie Sullivan and welders (I wish it were lol.) Additionally, I'm buying a 6" brimmed sun-protective hat tomorrow (black seems like it would be easier for my eyes than a light color,) but I really need to figure out this dark glasses thing.
Sometimes I can go a few days and live normally, where indoor lights aren't too bad and overhead lights aren't pure murder (what *is* it about overhead light that's so incredibly painful? I *never* leave the house without those cheap-o eye-dialating temporary shades--outdoors, the sun here, is *always* too much.) But days like today I spend as much time in dark rooms as possible, maximum amout of light a t.v. about 10" away, a 60 watt reading lamp or all the blinds pulled with just one cracked for a hint of light. I've kind of come to a place of peace regarding needing to wear super-dark glasses, I'm just having trouble finding them--both, but most esp. the temporary sort until I can have new glasses made. Something like glasses for looking at an eclipse (o.k., that's a tinge extreme, but so, so close...) dark tinted glassed could look cool and let my eyes relax and be (could I hope) a bit more pain-free. Family resents having to live with kind of a "mole woman" like me, well, they just get really snippy about being asked not to turn on extra lights, *esp* overheads (is there some reason why those things are so murderously painful?) I just want to go back to "normal"...normalish, like this...
So, in short...Welding helmets are about the perfect darkness, but are hard to pull off with an outfit (unless I'm trying to look like a storm trooper. lol) and I seriously don't know where else to look to find the darkness I need (the only other thing I can think of is asking Eyemasters, where I got this pair of glasses over 6 years ago, if I can have these glasses tinted *really* darkly--although they have a slightly worn-off scratch coating. Wait, do you think that, for a price, of course, someplace like Eyemasters would do something like that? Otherwise, I *really* need the help of people who absolutely know what it's like--you--please?
I'm not entirely sure the etiology of the severe photophobia (the pain, I'm guessing, is Sjorgren's and needing new glasses?) The only other leads I have are I have mod.-severe RA and the rheumatologist keeps saying he won't rule out Lupus yet (but he hasn't done the bloods for it yet.) I have a few other indicators for Lupus, which would make sense...nevertheless, I'm just trying to find something that'll work
Thank you so much (for both the help and your time reading this, lol)--you're all kind of like the Elders of this site, so you have all my respect
Thanks, with heart!
achyeyes
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