Avatar universal

Can you please help with my intense fear of going blind soon?

I have always been very careful with my eye. I say eye and not eyes because I only have one good eye. The right eye is milky and lost its pigment, while the left eye is perfectly normal on the outside. I have about 20/70 in my left eye. I was born at just 23 weeks and had ROP (retinopathy of prematurity.) I had about a 90% chance of going blind. Although my left eye was saved through a vitrectomy and laser surgery, I recently had this fear of suddenly going blind. I have blocked myself from looking at WebMD since they talk about sudeen glaucoma all the time. I have told my parents (I’m 15) but the eye doctor is an hour away. I had my exam about three months ago, and they said I was normal. I have been really nervous for a month and a half now. Please help! Thanks.
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Avatar universal
Since you are normal in one eye, that one is not a worry today. Worrying is unproductive and it also leads to stress which is a health risk in itself. So you should focus on other things since there is nothing that can you can do to affect the good eye. It is a very good idea to remain blocked from that site because you do not have a problem and you likely have a long life ahead of you so live it to the fullest as best you can.
Helpful - 0
Thank you so much. I just get anxious over every little thing (I.e when I get a headache, I think it’s sonething more) kind of like hypochondria. I’ll try to distract myself and if I notice any real symptoms I’ll head to the eye doctor. Thanks.
You are already tested so don't bother checking for any symptoms again. There are too many diseases and body parts for a person to spend time checking for them all day.
Avatar universal
With the eye you have a reason to be concerned, as you've had eye problems.  But you also appear to state it's not just about the eye, that it's also about other things too, even a common headache.  If I've got this right, that this is something more than the eye, it might not be a bad idea to see a therapist about it.  I would guess that you might be reacting to the things you've gone through, which would be a common thing but not one you'd want to live with forever.  When something happens to you and it seems to be causing phobias or fear that gets in your way, it can be very productive to talk it out with a professional.  It's harder when you have no idea where the concern is coming from.  There are things you can do prophylactically for the good idea, by the way -- there are foods that are high in the antioxidants that protect the eye.  There are supplements that contain those substances as well, though you're pretty young for that.  My wife is in her sixties now, but she had eye problems in her youth and surgery and it took away a lot of her peripheral vision.  She doesn't sit around and worry about it or other aspects of her health, she's almost abnormally sane, but she has always had a phobia about driving because of it.  She can drive, she's just too fearful she might not be seeing everything.  I've tried to teach her how to drive in a way that will work for her because, really, you most need to see only large things when you drive, you really don't need to see the small things she might have trouble with -- it's not going to be a problem if she runs into a fly -- but this is something that has lingered.  Because she is so sane she just gets around in other ways but in your case you're worrying about it.  This can become a bad habit and get in your way.  That's why I say, if it's spread beyond the completely understandable eye concern, get over it now when you're young and adaptable.  If it's just the eye, really, we all have something we worry about too much.  As far as the protection for you good eye, you can research this.  Glutathione, found in wheat grass, is the most important antioxidant protecting the eye (also the liver).  Lutein, found in green veggies, protects the eye.  So there are things you can do that might help.  
Helpful - 0
"abnormally sane".  Love that phrase!! :>)
It's a bit hard for me, though, because I'm abnormally not sane and she doesn't have a clue as to what that feels like.  Empathy has never been her strong suit because she doesn't think in any way that bothers her.  Maybe it's better for how we treat others if we are a little not sane?
Good point!  I listened to a pod cast and it said some people like your wife have 'sympathy' as in they feel sorry for you but can't connect with your feelings.  Others have 'empathy' which is relating to how another feels and that is when true connection can occur.  

I had some things happen in my life especially in teens and twenties that I'd describe as tragic (not broken up teeny bop relationships but dealing with some life time hard stuff) . . .  and I always say it was a gift because of the wisdom and insight it gave me.  

I like a little not sane better although I envy the sane a bit too. :>)
973741 tn?1342342773
I have a dear friend whose son was born at 23 weeks too!  Wow!  He's a teen now as well and he has had constant monitoring of his eyes.  He's had two surgeries as well and is checked every year for changes that would indicate more intervention being necessary.  Extreme preemies do often have eye trouble.  My friend's son is seen by a specialist once every single year to monitor for changes which is pretty common for preemies such as yourself.  Is this what the eye appointment was for 3 months ago?  Most children's hospitals have someone that is excellent at this and it is good to be followed consistently over time by the same eye doctor.  But regardless, you were just checked and all is fine.  There's no indication that this has changed other than your own anxiety.
Your fear is not totally baseless with all you have been through and the issues with eyes in extremely premature babies.  But it is usually correctible. So, keep that in mind! But you don't want to live in a well of worry!  Are there other things that you are anxious about? How is school going?  Any other repercussions from your early birth story such as learning differences?  That's also pretty common and in the teen years at 15 it probably can all feel a little overwhelming.  It's important to ask for help.  A therapist can talk about coping strategies with you.  

So, hang in there.  You've had a long road and sound like you are an intelligent kid doing awesome!
Helpful - 0
Yes thank you so much. That’s so coincidental that he was born at 23 weeks too.
I also notice, because I have looked up symptoms of eye diseases, my brain tries to recreate the symptoms making me more anxious. When I see a shadow (a real one) I think of seeing many floaters. Although it is only my brain, because when I think about something else it stops, I still get really nervous and am thinking about going to my eye doctor. I don’t notice any change in vision, but am still nervous since if I lose this eye, I’m totally blind. Thanks though, I’ll try to stop this before it consumes me.
Yes, I thought it was ironic as well and he had his annual eye exam with the specialist just last week.  

It is amazing how the mind works!  I do the same with some things.  If I am worried about my blood pressure, I get a sensation of feeling my heart pounding.  Which you know . . . it's not.  Sigh.  Perhaps you can try a system of actively changing your thought pattern.  Wear a rubber band on your wrist and if your thought start to drift to this, snap it. Then have GO TO things you can think about.  Vacation you liked, sports you like, books or movies you've enjoyed . . . whatever you feel comforting.  Just try to stop the thought.  Worth a try.  :>)  I know my friend's son has to work a little harder in school.  Do you have an IEP or 504 plan?
No I am in a regular classroom setting, I do however have some accommodations for my vision. I can’t read the board so I take pictures of it, and some tests are enlarged.

That is a good idea to have that rubber band. Before now I was thinking about peripheral vision loss...and what do you know, I started sensing it, and then looked to the side and it was normal. I need to stop thinking about this. Thank you though.
It's the brain, yeah, but the theory behind anxiety treatment in therapy is that you're creating the thoughts, they're not appearing spontaneously.  Now, to me, it's always felt like it's spontaneous, but the most recommended therapy for anxiety, CBT, teaches that we create the thoughts and we can learn to stop doing that.  Since some people do overcome their anxiety this way, it's worth trying.  It's a pretty profound question, where do our thoughts really come from?  But again, psychology posits that we are more in control of them than we perceive we are.  And let me tell you a bit more about my wife -- she doesn't see a ton of things I can, she bumps into things, she's lived her whole life this way.  She also served in the Marines, graduated college in two and a half years with all As, earned her PhD while working full time and is now writing a book.  Ray Charles and Stevie Wonder were blind.  Don't think for a minute this problem will stop you, but anxiety might, so again, if you think you're getting an anxiety disorder, you're young and can get past it a lot more easily than us old folks.  
Try the rubber band.  It's great if you can get your parents on board for some help with your anxiety and perhaps you can try therapy at that point!  I recommend it.  Even talking to your school counselor could be helpful.  

I'm glad you do not have other major issues from your birth story!  Try not to look for things to worry about.  Have you ever learned some breathing exercises for calming yourself.  You can do either birthday candles which is you hold out four fingers--- or just visualize four birthday candles and blow hard on each one. Take air in and blow it out like you would a candle.  Another breathing technique is square breathing, breath in for 3, hold for 3 breath out for 3 repeat.  Do it several times. This helps clear our head, calm us down.  But do talk to your parents less about the eyes and more about the anxiety!  
I don’t know if I can do the therapy yet but I’ll try the breathing exercises. I’m also thinking about contacting my eye doctor just to see if she thinks I should come in for a quick exam just to rule everything out.
You had an exam 3 months ago. Didn't she give you a date for your next one?
If you're really interested in breathing exercises, they all rely on something called abdominal breathing.  There are a million of them.  They mostly come from the same Asian practices that includes yoga and meditation, which all involve abdominal breathing.  A true anxiety therapist can teach you some of them, but you can also learn this stuff for free and better by finding someone who teaches Buddhism or Hindu or Taoist practices -- it's really where these techniques originate.  The current star in the West seems to be Mindfulness meditation, which comes from the Zen tradition, so if you want to, find someone who can teach it to you and they will also know how to teach abdominal breathing techniques.  Most of us breath from the chest, which is shallow breathing, especially those of us who are anxious.  Breathing from the abdomen is much deeper and that's what the breathing exercises are designed to get to.  I'd bet you'd find it pretty interesting.
They teach the birthday candle breathing thing on Sesame Street and we learned square breathing in occupational therapy for my son when learning self coping strategies to slow down the nervous system and self soothe.   You can look into it deeply and that definitely is very interesting but the important thing is to just do it.  It's really beneficial when anxious!
Thank you so much. I have been taking online tests lately when I get anxious, such as the macular degeneration text and the visual field test, and they came as normal. I just do it to ease my fear. However, I still can’t fall asleep at night because I think “What if it will happen tomorrow?” If I get shampoo in my eye, I get very scared too. Maybe I can start some meditation?
I’ve also noticed that when I do things I enjoy, like video games, all of my panic goes away.
My appointment is scheduled for June 2019
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