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Just venting. Not ready for progression this fast. Stargardts (self.Blind)
submitted by faerylin
So I have stargardts that was diagnosed a few months ago after months of docs basically telling me I was lying when I kept telling them everything looked smeared.
Well my visions been getting worse but last night my bearded dragon was sleeping on me and I was trying to take a pic and I kept clicking on the screen and I was getting frustrated because it just looked like one big pixelated blob and so kept clicking and clicking harder and harder. Until it clicked it in my head the problem wasn’t my phone. I have to move things around to certain spots to be able to see them best. I really hate this disease. I wasn’t ready for it to move this fast. I really wasn’t. Appointment made with retina for to tomorrow.
UPDATE:
retina appointment today was a mess; she said my retinas have changed' but not sure what that means. she emailed her colleague about it. but shes never had a stargardts patient before so she really doesn't know what to look for or anything. She told me I'm "a puzzle piece that she just cant figure out" my vision is now 20/120 from 20/40 in november which is very scary. i didnt realize it had gotten that bad. she called and got me scheduled tomorrow with low vision. insurance only pays for the retina photos every 6 months so will get more photos in august to see how much more damage is done to the retinas but by the loss of vision and what she can see with the naked eye we know there is more. oh and the erg was inconclusive, so that sucks. so what a day. :(
Well my visions been getting worse but last night my bearded dragon was sleeping on me and I was trying to take a pic and I kept clicking on the screen and I was getting frustrated because it just looked like one big pixelated blob and so kept clicking and clicking harder and harder. Until it clicked it in my head the problem wasn’t my phone. I have to move things around to certain spots to be able to see them best. I really hate this disease. I wasn’t ready for it to move this fast. I really wasn’t. Appointment made with retina for to tomorrow.
UPDATE:
retina appointment today was a mess; she said my retinas have changed' but not sure what that means. she emailed her colleague about it. but shes never had a stargardts patient before so she really doesn't know what to look for or anything. She told me I'm "a puzzle piece that she just cant figure out" my vision is now 20/120 from 20/40 in november which is very scary. i didnt realize it had gotten that bad. she called and got me scheduled tomorrow with low vision. insurance only pays for the retina photos every 6 months so will get more photos in august to see how much more damage is done to the retinas but by the loss of vision and what she can see with the naked eye we know there is more. oh and the erg was inconclusive, so that sucks. so what a day. :(
SpikeTheCookie 16 points 4y ago
Venting and anger are totally appropriate. :-)
​
Someone told me long ago that anger was good. It moved you into action. It's time to get all warrior and kick some stargardt ass.
​
PS Taking my own advice, as I'm pissed at the constant adjusting, between jobs, and probably need some training. Also still pass as totally sighted, and I just want to grab people's hands and say, "Where the heck are you pointing?!"
​
Someone told me long ago that anger was good. It moved you into action. It's time to get all warrior and kick some stargardt ass.
​
PS Taking my own advice, as I'm pissed at the constant adjusting, between jobs, and probably need some training. Also still pass as totally sighted, and I just want to grab people's hands and say, "Where the heck are you pointing?!"
faerylin [OP] 2 points 4y ago
Thanks, yes I run into so many doors and people just think I’m high or something.
SpikeTheCookie 1 points 4y ago
Or just clumsy and rude! Sign. Like grocery shopping. ;-) Frankly, I'd settle for high, as it would make me a lot more interesting than clumsy does. LOL
OutWestTexas 6 points 4y ago
You have a right to vent.
faerylin [OP] 1 points 4y ago
Thanks
SkelemanJames 4 points 4y ago
I’ve had stargardts for a few years. Luckily my optometrist knew what it was from some previous genetics work, but my retina specialist didn’t know much. From what I’ve experienced and read online, vision drops in the beginning and then usually stays the same for a long time for most people. Hope this helps. Good luck man
faerylin [OP] 1 points 4y ago
Thanks so much.
sarahluvsjoy 3 points 4y ago
I work for a low vision specialist and he works with Stargardt's patients all the time - It's good that you have an appointment with a low vision specialist because there are options out there that general optometry practitioners do not know about; they can help ease the stress and provide resources to help with maintaining independence.
Depending on where you are located, in the US for example, (and each state is different) but even if insurance doesn't cover certain things, there are state services that will compensate for the rest.
Our office is looking at ways to connect visually impaired individuals online with similar conditions so they can share advice and provide communal support for each other. It might help to talk with someone who has or is going through a similar situation. And keep posting on reddit because it helps to vent and this subreddit community is growing and an awesome support system!
Depending on where you are located, in the US for example, (and each state is different) but even if insurance doesn't cover certain things, there are state services that will compensate for the rest.
Our office is looking at ways to connect visually impaired individuals online with similar conditions so they can share advice and provide communal support for each other. It might help to talk with someone who has or is going through a similar situation. And keep posting on reddit because it helps to vent and this subreddit community is growing and an awesome support system!
faerylin [OP] 2 points 4y ago
Thanks she connected me with our state service but said that the only reason I quilfiy for them is because I a student because if you don’t work or over 55, in Ohio they don’t help you. Which is very sad. She said that it’s because of budget cuts. She also said that they are no longer providing equipment or anything just showing you different things that will help you. Over all the appointment was a huge let down. She wouldn’t write a script for anything stating insurance doesn’t cover it. I called insurance afterwards and they said they do with a prior authorization so emailed her and hopefully she will write up something but she’s only in the office one day a week. So we will see.
Otherwise_Computer79 2 points 1y ago
Couldn't glasses help u in the begging
faerylin [OP] 1 points 1y ago
No they have tried glasses and they do not help because it issue is in the retina. Glasses can’t help blind spots, sadly.
Otherwise_Computer79 2 points 1y ago
I meant when u first noticed your loss of vision before the blind spot or did u always wear glasses...i am asking if it made u become short sighted or normal vision with just blind spot..thank u for replying by the way
faerylin [OP] 1 points 1y ago
I had glasses starting at 2. As a teen I did without because I hated contacts and went back to glasses as an adult. I have since been diagnosed with IIH. They said that having two “rare” eye conditions is what could have effected my eyes so quickly.
Anya_3 2 points 4y ago
You are not alone! I have been diagnosed with Stargardts for 15 years. I know it is terrifying not knowing, but I have been able to manage my condition fairly easily once the right support was in place! Let me know if there is anything I can share about my experience, happy to coonect.
faerylin [OP] 3 points 4y ago
Thank you so much. I just didn’t expect it get so much worse this fast. I went from 20/40 to 20/120 in a matter of months. I thought I had at least a year before I had to worry about it getting this bad. Thankfully I have an iPhone so it has the accessibility built in. Besides sending me to low vision is there anything else she should do?
Anya_3 1 points 4y ago
I totally understand! It can be really overwhelming. Keep in mind to there's is a big difference between what we have and being totally blind!
A few tips I would suggest. If you can, I would recommend seeing a specialist. There is a LOT of research being done and several gene therapy trials occuring. You may qualify for one.
In terms of day to day accommodations, I actually use my phone camera to enlarge and read small text or far away signs/menus. There are several apps available, but personally I think the camera works just as well. Also not sure if you are Mac or PC user, but similar to the phone accessability setting there are settings on the computer for low vision. I personally at work use Zoomtext, which is an external program. Mostly because it is what I learned to use first not necessarily because it is the best tool.
Feel free to message me if you want any specific recommendations or just want to chat! It can feel really isolating going through something like this, but know you are not alone :)
A few tips I would suggest. If you can, I would recommend seeing a specialist. There is a LOT of research being done and several gene therapy trials occuring. You may qualify for one.
In terms of day to day accommodations, I actually use my phone camera to enlarge and read small text or far away signs/menus. There are several apps available, but personally I think the camera works just as well. Also not sure if you are Mac or PC user, but similar to the phone accessability setting there are settings on the computer for low vision. I personally at work use Zoomtext, which is an external program. Mostly because it is what I learned to use first not necessarily because it is the best tool.
Feel free to message me if you want any specific recommendations or just want to chat! It can feel really isolating going through something like this, but know you are not alone :)
faerylin [OP] 2 points 4y ago
UPDATE:
retina appointment today was a mess; she said my retinas have changed' but not sure what that means. she emailed her colleague about it. but shes never had a stargardts patient before so she really doesn't know what to look for or anything. She told me I'm "a puzzle piece that she just cant figure out" my vision is now 20/120 from 20/40 in november which is very scary. i didnt realize it had gotten that bad. she called and got me scheduled tomorrow with low vision. insurance only pays for the retina photos every 6 months so will get more photos in august to see how much more damage is done to the retinas but by the loss of vision and what she can see with the naked eye we know there is more. oh and the erg was inconclusive, so that sucks. so what a day. :(
retina appointment today was a mess; she said my retinas have changed' but not sure what that means. she emailed her colleague about it. but shes never had a stargardts patient before so she really doesn't know what to look for or anything. She told me I'm "a puzzle piece that she just cant figure out" my vision is now 20/120 from 20/40 in november which is very scary. i didnt realize it had gotten that bad. she called and got me scheduled tomorrow with low vision. insurance only pays for the retina photos every 6 months so will get more photos in august to see how much more damage is done to the retinas but by the loss of vision and what she can see with the naked eye we know there is more. oh and the erg was inconclusive, so that sucks. so what a day. :(
ImamBaksh 1 points 4y ago
I'm in a similar position and I've never been able to shake that feeling of betrayal and unfairness.
I've been able to move beyond to practicalities like what I'm going to do, making changes to how I live etc, but I'm not at peace with it. especially since it never goes away or ever really stops, just pauses with the threat of coming back.
I've been able to move beyond to practicalities like what I'm going to do, making changes to how I live etc, but I'm not at peace with it. especially since it never goes away or ever really stops, just pauses with the threat of coming back.
cookieinaloop 1 points 4y ago
I'm sorry, I really am. My RP was stagnant for 15+ years but then it started going off full speed last year. I went from devices with maximum brightness only to devices with maximum font size, maximum font size and 300% zoom, walking with a cane and not recognizing people's faces. Having to adapt all the time to conditions that change so fast is incredibly exhausting.
Also, bearded dragons <3
Also, bearded dragons <3
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