Thursday, January 26, 2012

Struggles

This has been quite a hard week, and it's only Thursday! I have noticed how Stargardt's is starting to affect me more at work, making me more focused on the problems I am having. I have found that I have made mistakes due to misreading things. In particular names and numbers. As I work in a hospital, everything revolves around a patient's number, and I find I have to look at something 2 or 3 times before I can figure out what it says (while entering it on the computer wrong and getting frustrated). This is even when I use my Zoomtext software. I guess I could make my font even larger, but I don't think I could accept that it needs to be bigger. I also get enough comments about how big my text is.

When I've come home, my eyes are so sore and tired that they feel constricted. I use my 'sore eyes' drops but they give me relief for about 20 minutes only. I feel like I need to soak my eyes in icy water because they are hot and irritated. I've come to realise that I need to seriously consider other careers that put less strain on my eyes. The hard question though is what can I do? I'm very much a perfectionist and need a challenging job that is different every day. I also love Working in health. It's a hard question but I seriously need to do some thinking.

7 comments:

  1. Thank you for your blog. My husband is right where you are right now and because you are a much better communicator, it helps me understand what he is going through. He is a musician and pastor. Lots of computer work and eyestrain some days. My heart is broken for him. I would love to hear your perspective on what people do to help or hinder you as you experience changes and struggles. I want to support him and help, but not disable him. Praying you find answers for work.

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  2. Sorry to hear about your husband :( I know how hard it can be to express the way you feel, especially when you don't want to accept what is happening. Although there is always a way, we just need to find what the way is for us.

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  3. I was just diagnosed with Stargardt's disease about a week and a half ago. My mom stumbled across your blog while Google-ing information about the disease. I am still not completely comprehending that I have this disease and that I am the one who needs to be taken care of when I spent 4 years in school learning how to take care of other people. Like you, I work in healthcare and (I'm an RN) and to know that I may have to change my career when I just started is killing me. I get so frustrated at work, constantly reading and re-reading the same things. Sometimes I just want to throw in the towel. How do you get past where I am and learn to be blind?

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  4. The hardest part is when you find out and there is such little information on it and you think it can't be happening to you. It takes time to get your head around it specially since it is so new for you. I know when I found out I was thinking all sorts of crazy ideas about changing my whole life. Im not sure how bad your eyes are at present but from what I've been told they can deteriorate quite slowly, if they ever do. So I think the most important thing is to not give up and keep doing what you love. You'll find ways to get around things. Where abouts are you from?

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    1. they are pretty bad. It's hard to read just about anything. I'm not sure what form I have yet (I'll find out on Thrusday). I constantly have a cluster of tiny white dots in front of my eyes so everything i look at and especially try to read is extremely distorted if I look straight on. I am at the stage where I am having the crazy thoughts. I am trying to stick to my routines and live life but it is constantly on my mind. I am from New Jersey USA right outside of New York City.I have access to so many doctors between my hospital and the ony my mom works at that I am rackingg everyone's brain to see what they know. Did you ever go to a genetic counselor?

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    2. I am 28 years old. My Stargardt's has fully progressed. I am legally blind. I can not drive. I work in television. I am a news producer, I write and put together the local newscasts for an ABC affiliate in Colorado. Don't think that you can not have the career or life you want, because you can. There are tools you can use to overcome the obstacles you have at work and at home. It's not always easy. There are struggles, but you don't have to give up on the things you love to do,. Instead learn how to do them differently. I also had to learn how to think of my independence differently. I learned it is okay to ask for help. I learned I had Stargardt's when I was in college, but I already knew what kind of career i wanted and I'm glad I stuck with it. I know how hard it is to adjust. My best advice would be to talk to a low vision specialist. They can help you find the tools that will work best for you.

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  5. I am a recent college graduate from the New York area and am having a terribly hard time coping with my disease and the limitations it puts on my career opportunities. I no longer drive so my options are limited to working in the city (1 and 1/2 hours from my house) which not only costs a fortune but is also highly competitive. I have a degree in Marketing and have found that most positions rely very heavily on computer or database work which puts a strain on my eyes. After completing two internships I am at a loss for finding a full time position at a company that is willing to hire someone with my handicap. If you have any advice on how to go about presenting our disease to potential employers or how to cope with this disease in general please let me know. Thanks!

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