Blind and Visually Impaired Community
↑
6
↓
I'm losing my eyesight, the doctors don't know why and I'm scared (self.Blind)
submitted by goingblindandscared
I am 49 years old, a mother of two girls ages 7 and 11 and wife to a military soldier.
We live in Canada (ontario).
I have crohns disease which has caused inflammation for the past 20 years in my eyes (on and off but a lot of the time).
I have been on prednisone eye drops a lot and a year and a half ago it caused cloudy vision most likely the start of a cataract.
About a year ago I got new glasses and I had very blurry, double vision when I put them on. I always thought they screwed up the glasses as it was a new eye doctor who wasn't really that good.
As a result of the poor eyesight I stopped driving at night, and have been worried at what point do I stop driving.
A year later and it turns out my glasses are fine, it's my eyesight. At my eye test on Tuesday even when they drastically changed the prescription in the machine I couldn't see much if any difference.
They don't know whats wrong.
There is a slight cataract but its not to the point it should affect my eyesight. They are sending me to my specialist (that I see for the Uveitis (inflammation in my eyes) to do some more tests.
It's unnerving that they don't know whats wrong, and I'm scared, not only of losing my eyesight but that it could be something to do with the optical nerve and my SIL's dad died from that.
I'm not sure what I'm asking, maybe nothing. I just need to share that I'm really scared and I don't know what to do. I have asked the eye doctor to refer me to the CNIB to see what I can do should I have to stop driving because I can't afford a taxi especially if it's cross town ($40 each way!!) but my daughters have activities I would feel terrible if they had to stop going to because of my eyesight.
​
We live in Canada (ontario).
I have crohns disease which has caused inflammation for the past 20 years in my eyes (on and off but a lot of the time).
I have been on prednisone eye drops a lot and a year and a half ago it caused cloudy vision most likely the start of a cataract.
About a year ago I got new glasses and I had very blurry, double vision when I put them on. I always thought they screwed up the glasses as it was a new eye doctor who wasn't really that good.
As a result of the poor eyesight I stopped driving at night, and have been worried at what point do I stop driving.
A year later and it turns out my glasses are fine, it's my eyesight. At my eye test on Tuesday even when they drastically changed the prescription in the machine I couldn't see much if any difference.
They don't know whats wrong.
There is a slight cataract but its not to the point it should affect my eyesight. They are sending me to my specialist (that I see for the Uveitis (inflammation in my eyes) to do some more tests.
It's unnerving that they don't know whats wrong, and I'm scared, not only of losing my eyesight but that it could be something to do with the optical nerve and my SIL's dad died from that.
I'm not sure what I'm asking, maybe nothing. I just need to share that I'm really scared and I don't know what to do. I have asked the eye doctor to refer me to the CNIB to see what I can do should I have to stop driving because I can't afford a taxi especially if it's cross town ($40 each way!!) but my daughters have activities I would feel terrible if they had to stop going to because of my eyesight.
​
iletthedogsout234 10 points 4y ago
Hey! I’m going blind too and it can be scary but you will find yourself adapting and finding ways around. I’m in the states and we have a division for blind services but if you have something similar it would be a good idea to get in touch with them.
Ours helps with everything from mobility training, independent living, accessibility software, etc.
Feel free to message me if you want, it can be scary but you aren’t alone. If you’re on Facebook there’s a Facebook group for women losing their vision and it’s really great if you’re interested.
Ours helps with everything from mobility training, independent living, accessibility software, etc.
Feel free to message me if you want, it can be scary but you aren’t alone. If you’re on Facebook there’s a Facebook group for women losing their vision and it’s really great if you’re interested.
goingblindandscared [OP] 3 points 4y ago
Thank you so much for replying. I just found out Tuesday that my vision problems are not because of a poorly made set of (newer) glasses, so I’m still in shock.
I would love the link to the Facebook group please.
Thank you so much!
I would love the link to the Facebook group please.
Thank you so much!
iletthedogsout234 1 points 4y ago
Messaged you! Are you on anything for the uveitis? I’ve had that before, but I have like 6 eye diseases but the uveitis cleared up with a steroid ointment
goingblindandscared [OP] 1 points 4y ago
I've had Uveitis for about 20 years. My crohn's is the cause of the Uveitis, so when my crohns flares up typically my Uveitis flares. I've been on prednisone (steroid) eye drops so many times, and a few times the ointment at night. I had cloudy vision about 18 months ago from using the prednisone eye drops every hour which I'm sure was a cataract, but the cloudiness went away after I tapered off the eye drops.
estj317 3 points 4y ago
I am hear to tell you losing your vision is not perhaps good or ideal, but it’s also not the end of the world. YOu lose a sense, yeah, but you can still be successful. Very successful and unstopable blind person here. I have been blind about 18 out of my 26 years of life. If you tell me that vision loss is the end of my world and I can’t do anything, I’d tell you to get out of my way and I will do what I need to do. I am very independent, mostly live a very productive life and usually a master of it. So yeah.
Learn how to do orientation and mobility, learn some independent living skills, learn to use a screen reader. Stuff of that nature. Get use to being blind so when you do finally become that way you are good. You can absolutely raise kids, work if you like, travel the world, whatever you want. Who’s to stop you? Only yourself.
Learn how to do orientation and mobility, learn some independent living skills, learn to use a screen reader. Stuff of that nature. Get use to being blind so when you do finally become that way you are good. You can absolutely raise kids, work if you like, travel the world, whatever you want. Who’s to stop you? Only yourself.
KillerLag 3 points 4y ago
If you need training, here is the link for the Ontario page of CNIB.
https://cnib.ca/en/programs-and-services?region=on
Orientation and Mobility, Independent Living Skills and Low Vision Services should be available pretty much everywhere, while the technology services are a bit more localized.
https://cnib.ca/en/office-locations?field_region_target_id=All®ion=gta
you can also search for your local office by the specific region (They are done by province, but Ontario is split into 4 parts due to the density). You can then contact the local office for training. Usually, they request an updated eye report from your doctor to start (if you just saw your doctor yesterday, you can ask them to fax in the report).
https://cnib.ca/en/programs-and-services?region=on
Orientation and Mobility, Independent Living Skills and Low Vision Services should be available pretty much everywhere, while the technology services are a bit more localized.
https://cnib.ca/en/office-locations?field_region_target_id=All®ion=gta
you can also search for your local office by the specific region (They are done by province, but Ontario is split into 4 parts due to the density). You can then contact the local office for training. Usually, they request an updated eye report from your doctor to start (if you just saw your doctor yesterday, you can ask them to fax in the report).
goingblindandscared [OP] 2 points 4y ago
Thank you! I contacted CNIB and they said they would email me the form they need the eye doctor to complete but I never received it. I have a feeling they typed my email address i wrong, but I was able to google search and find it. I've emailed my eye doctors office asking them to complete the form - hopefully they will get it done soon so I can become a CNIB client.
For now, I'm still sighted, I can still drive but they will most likely be taking away my licence soon. This scares me the most because I can't afford taxi's, and the accessible bus where I live is nearly impossible to book unless you know at least two weeks in advance you need the bus. And I can't take the regular bus due to my crohns disease. I'm hoping there's an option I'm not aware of, since my kids need to get to their activities and I a taxi across town here is $30 one way, so $60 for a taxi trip. I can't afford that, and I have no family close by and my husband works away often (military). I feel upset with myself because I feel so vulnerable and almost useless if I can't drive. I don't want my kids to have to give up their activities because of my eyesight.
For now, I'm still sighted, I can still drive but they will most likely be taking away my licence soon. This scares me the most because I can't afford taxi's, and the accessible bus where I live is nearly impossible to book unless you know at least two weeks in advance you need the bus. And I can't take the regular bus due to my crohns disease. I'm hoping there's an option I'm not aware of, since my kids need to get to their activities and I a taxi across town here is $30 one way, so $60 for a taxi trip. I can't afford that, and I have no family close by and my husband works away often (military). I feel upset with myself because I feel so vulnerable and almost useless if I can't drive. I don't want my kids to have to give up their activities because of my eyesight.
KillerLag 1 points 4y ago
Depending on where you are in Ontario, there may be other options. I am more familiar with Toronto, but not as much for other areas.
SunnyLego 1 points 4y ago
Have you done anything for Uveitis other than eye drops? I've had it for 8 years so far, and have been on way more medications and procedures!
goingblindandscared [OP] 1 points 4y ago
The uveitis flares up when my Crohns flares, do they are trying various medications to see what works best. Right now I go for Remicade infusions every eight weeks and it seems to be helping. It’s only been a few months though so I’m a bit anxious if it will help long term.
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.