Angioid streaks

[ColWi]

I'm not sure I'm on the right board. I am completely new and thought i would reach out for support. It has been a roller coaster ride for me for about 6 years. I was diagnosed with another crazy rare decease called Superior Canal Dehiscence. Had surgery and about 2 years after that I began t get hemorrhages in my eyes. The first on was crazy weird. I was so caught up in what I was seeing I never freaked out at all. I was in the grocery store when I had a massive hemorrhage. Everything looked like it was falling off all of the shelves. I just kept saying to people do you see that. Then people looked like they had really tiny heads and great big bodies. It was like being in a fun house. I got into to see a retinoligist within 24 hours. And they gave me injections. They actually brought that eye back to 20/20. I wish I could say that has been the case for the other 5. I have about lost vision in my left eye and my right is now 20/220. Not good for an artist. Every time I think I can grieve and be done with it I get another hemorrhaged and start all over again. I have been so depressed at times and am not having a good time of it right now. I have been crying for days as I try and draw and paint. I'm so frustrated that I can't see anything. But, I am keeping going. It's like starting grade school over and over with each hemorrhage, and a bit more sight loss. I'm so sorry for all I have read here. It is so scary to think of a future and where one might fit in. To excel in things you found so easy all of your life. I go for injections tomorrow.

[springcross]

Hi CoIWi. I am so sorry to read about your awful experiences - what a nightmare. I am not surprised you are feeling so down, it's bad enough having wet AMD and losing central vision, but your condition sounds dreadful. I hope the injections improve things for you and wish you all the best. Take care. x

[ColWi in reply to springcross]

Thank you so much for your words of encouragement. It's really is great to have found this sight. To know others really understand what is going on in my head. Yes, I believe eye site is one of the worst to loose. When I was first diagnosed in my 20's, I walked aroud my appartment and closed my eyes for 2 days and said I could totally do this. What did I know. Now that it is happening years later, I feel like my world is slowly going dim. I now have 2 of my 3 balance sources severly damaged. The superior canal dehisance, just on its own. It was only found as a desiese in 1998, before that they thought people were making it up or crazy. It really is crazy. These little holes and I mean little. It is only now that they have a CT machine they can slice thin enough to even see them. They open in the superior canal of your ear and all the sound goes straight up into your brain. I could hear my eyes move and every and I mean every like typing on my phone made my eyes jump. So I stopped talking and really interacting. The noise was unbearable and I had terrible vertigo. Again though was blessed to find a Dr. that could diagnose it let alone know what it was. Being in Nashville by Vanderbuilt has been a blessing. They have amazing dr's. It's a teaching hospital like John Hopkins so they stay on the cutting edge. So I had intercaranial surgery where they plugged up that ear. The surgery went well but I have never been the same. Now this thing with my eyes.. So now I walk with a cane when I'm out of the house for balance. Over stimulation makes me even more off balance. My eyes are not helping my cause with that. Thanks again for just for reaching out it is great to know people are also struggling. I did find this amazing app its called SeeingAI it does all sorts of great things. One I can use now is if I go into a resterant and can't see the menu which I can't I can take a picture of it and it will read it. It also can do bar codes. It's just super cool. And best of all it's free.

[Eyerecovery1]

So sorry to hear about everything you've been through! Sounds like you have had such a hellish time.

Feeling depressed and down is definitely to be expected try not to beat yourself up too much about it. It must be horrible to be in the position of losing your eyesight when your an artist. I know it isn't the same but just take your time getting back into things and try different styles of painting/drawing than what you might be used to. Focus more on what it feels like painting and creating something rather than what it looks like. Think more abstract and just go with the flow. Try not to put too much pressure on yourself and compare your art to the way things used to be (I know this is going to be a hard process)

Wish you all the best and hope things pick up for you!

[ColWi in reply to Eyerecovery1]

Thank you so much. Having people reply that can truly understand and sympathise really has picked me up. To know I don't have to keep explaining how bad this is. People are always asking me so what do you see. It's hard to explain, as you know. It's not like I have lost all of the vission in the middle of my eye and there is a black dot. It's like someone swirled the persons face till it is kind of scarry. It's weird I can definately say that. The other one has some dead spots but not in the center. Both have warps but in different places. So it is so bizarre. One of the reasons it's so hard to really figure out objects I am wanting to paint. I am trying to look for new ways to do things. But old habits die hard. I was so detail orented. Now I have to just look for shapes. It's going to take time.

[Eyerecovery1 in reply to ColWi]

I think that's such a big thing having people that can sympathize with you. Although alot of us are lucky to not have worse medical issues it doesn't always feel that way!

It can be very hard to explain what you see as everyone seems to be different! I have no central vision in one eye just a big blurry grey blob my other eye has good vision though which I am very thankful for!

Don't give up on your painting even though it will take time if it's something you've always enjoyed it's definitely worth pursuing. It's always hard finding a new way of doing something these things take time.

[2468G]

Hello ColWi

So sorry to hear you are struggling with your vision. It's such a cruel blow. I think vision loss is just the hardest thing to deal with. It takes our zest for life away from us at times so we have to learn to adapt. The fear that your vision can get worse is always at the back of your mind. The experience at the Grocery store must have been mind blowing. I have CNV in one eye and before I had treatment I experienced the tiny head/big body thing when looking at people. Very strange.

I wish you luck with today's injection and hope it helps stabilise things for you.

I haven't any words of wisdom but I like many people on this site can sympathise and understand a little about how you feel. You are not alone. All the best to you.

2468G

[rosyG]

I'm very sorry you are having such a bad time and hoe you can find treatment to help you. Do come and talk on here- it's good to let off steam!!

[Jihm]

I am very sorry to learn of your very serious vision problems. I am not an artist. My wife is the artist in the family. I suspect you are a painter of the traditional (realism) style. But, I have read that Van Gogh essentially painted what he saw with his own rather poor vision. Instead of correcting the work to show what he knew to be really there, he painted the world the way it appeared to him. Perhaps that is true, perhaps not. But, maybe if you were to give that approach a try, the result would be something new, different, and beautiful. Just a humble suggestion.

[ColWi in reply to Jihm]

Thank you , yes I am a painter. I am wotking to find my new style. I have gone back to funimentials to really get it in my head. So I begin with somethings I knew but need to see in a new way and other things I am trying to find my way. I am finding stuff that really helps, getting organized. To put my paints one by one hanging on a board and using my see it app to read stickers I am putting with the color on it. That is going to really help. Eventually I will move to acrilic but right now I am still working in oil but really painting in layers. I want to thank you all so much for the encouragement right now. I can't wait to hear all of your stories and how you are dealing with your new challenges. I wnt formy injection a few days ago. I'm being refered to a new low vision specialist. For a second opnion and they have made strides, so maybe he can come up with something new.

[Hidden]

Sending you a hug X I feel lucky not to have the amount of sight loss of many on here but I do get the way the rollercoaster drags us down and fuels fears for the future. Jihm has suggested what I was going to - let your creativity be guided by your body. It is a fact that everyone experiences the world in their own way ( vision problems or not) so try and go with the flow, you may be pleasantly surprised!

I wonder if the macular society have an " art" section for their members to share ideas and output?

Good luck going forwards x

[ColWi in reply to Hidden]

THank you so much for your encouragement and taking the time to write.