So here is my latest. I do not have Angioid streaks. I get shots now every 6 weeks. They tried going longer. I think once I made it to about 9 weeks ut had another hemorrhage so at that point the go into shortest protocol. which is 4 weeks.When they stabilize that one we start getting a bit further apart. I then got to 7 weeks had another one so they went back to 4 and now we are at 6. I was thinking of asking how my Dr feels about going to 7. I am afraid to go longer. My first hemorrahage was really bad, but they brought it all the way back. I have not been so fortunate with the others. What they did not tell me at first was even when they stop the bleed the scars can stretch so even after I think it has gotten a bit better the scar stretches and I see less. I went to my second low vision exam and my high yye which is my good one has lost more vision than before. He could get me another 4 inches so I can see clearer. This is a strange one after my last bleed in my right eye. I now when taking the eye test have the center letter really clear but all the ones on the other side are blurry until they disappear. It's super weird. I went to a new group my low vision specialist has put together ( this was the first meeting) with eople who are losing their vision or have lost their vision completely. Everyone had a different reason. Some people are dealing with it well but, others like me are having a hard time oming to terms with it. Seeing different things out of both eyes gives me migraines Does anyoe else have that? My left eye is down to a finger test. I was very resident to going ot the group but am glad that I did. As an artist I have been so frustrated and just can't figure out how to paint what I did or stil want to do. But, the speaker said he knew other artists that have lost or are loosing their vision. So, I am going to set up an appointment to talk to some of them and see how they are dealing with this and figuring out how to keep painting at a level where they are able to sell their work. Right now I feel like my work is something your child would bring home and your Mom would put it on the fridge saying this is so good. NOT LOL. I'll keep you up to date on meeting the artists.
Update on where I am.: So here is my latest... - Macular Society
Update on where I am.
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ColWi
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I guess the retina hemorrhages are different that I have because I have a condition called Angoid Streaks. It is like cracks all through your retina. I have ha 6 hemoradeges in the past 4 years. What I am let not seeing through are those scars. THat is what is taking my vision. But, those scars can streatch which there is no treatment for nor can the tell if the will streatch or where or how bad. Thank you for asking. If you have any other questions please ask. My condition is diffeent but we all are going blind in some way. So this site has welcomed me, and I am grateful.
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