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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

worried and overwhelmed

I have been diagnosed with pseudotumor cerebri also know as intracranical hypertension caused by producing too much spinal fluid since october 2003. This week I had surgery for optic nerve decompression. I was told my optic nerve and surrounding nerves were dead from the pressure being there too long. I have had alot of vision loss in both eyes but now I think my right is gone totally. I just feel overwhelmed and worried. Any advice on how to cope, because therapist haven't been much help. I don't know how to get full sight people to understand.

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Re:worried and overwhelmed



I to grew into being blind, you have already started on a some times hard, some times funny, trust me humor is the best medicine. back to that step, asking for help, you would be amaized at the result, what did that guy say? oh yeah, the dumbest question is the one never asked. If any one here might be interested in assistive technology, JAWS, for example, this is the program that I am using right now, it is my eyes into the world in more ways than I could describe here. You know what I did last night? I was filling a bowl with cream for my cats, when I placed the bowl on the floor the cats jumped on the counter, I missed the bowl, come on that is funny.


Re:worried and overwhelmed



Hey, my name is Paulina i'm 16 and i also have ROP and i cant see as well as some people i see lights and shadows but i think that if you keep a positive attitude and i think that you should look in to those resorces that others have mentioned look for me here maybe on teen connect or here good luck Paulina


Re:worried and overwhelmed



Oh my...reading your post sounds like I am feeling right now!!! I am rapidly losing my vision & the change has been very sudden. I always knew I would eventually lose my vision but I am only 51 & never thought it would be this soon. My left eye is 20/200 with my glasses on & my right eye is catching up with it much too rapidly. I am an RN & I do telephone triage, so most of my work is on the phone, computer, & paper. I am getting to the point I know I will not be able to drive much longer & my vision loss is completely interfering with my work at this point. My heart goes out to you; feel free to email me: yourshrink4u@hotmail.com; it sounds like we have a lot of the same issues right now. I am desperately trying to find resources--have you found anything yet??


Re:worried and overwhelmed



Hi!
Music is nice, but you're going to need A LOT more support than that! I recently lost a lot of vision and am legally blind. I received a TON of help, resources, and even computer technology for low vision from my local Services for the Blind. You should have something like this through your state as well. They can provide you with vocational rehab, daily living aids, counselors and so much more! The longer I live this way, the more I find out about new resources for transportation, resources etc. Just to throw out a few - there is the National Library for the Blind which provides auido books and magazines free of charge shipped to your home. Also, many phone companies will give free operater assistance to obtain phone mumbers to people who are legally blind. Just hang in there, life will still be good for you. I won't lie, it's a tough adjustment, but once you figure things out you'll see that you can still enjoy life.


Re:worried and overwhelmed



Hi!
Music is nice, but you're going to need A LOT more support than that! I recently lost a lot of vision and am legally blind. I received a TON of help, resources, and even computer technology for low vision from my local Services for the Blind. You should have something like this through your state as well. They can provide you with vocational rehab, daily living aids, counselors and so much more! The longer I live this way, the more I find out about new resources for transportation, resources etc. Just to throw out a few - there is the National Library for the Blind which provides auido books and magazines free of charge shipped to your home. Also, many phone companies will give free operater assistance to obtain phone mumbers to people who are legally blind. Just hang in there, life will still be good for you. I won't lie, it's a tough adjustment, but once you figure things out you'll see that you can still enjoy life.


Re:worried and overwhelmed



Hello. My name is Sarah and I'm 17. I have ROP. Listening to music helps so much. And so does having a best friend you can talk to. I know what it's like to have anxiety, I have depression.


Re:worried and overwhelmed



i understand how you feel! i have ROP and just had four surgeries and lost alot of vision, i have found that music helps, just turn it up loud and get lost in it :) and having friends that understand is a big help too :) if you wanna talk more i have an email, if you would like to keep in touch that way. stay strong and never give up! hope to hear from you soon!
Jillian


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