Dear Keratoconus, This is how I feel about you.



Dear Keratoconus,

This is how I feel about you.

Every day I have to deal with you. You made me look stupid at work. I don't smoke, drink or use drugs, but I'm addicted to my vision. I love to see the beauty of nature, the stars at night, the smile my son is giving me, reading a book.


Every day you change my eyes. And the only thing that you offer is wearing the contacts that I can't wear, because my eyes can't take it. Even with high medication it is not possible to use them constantly. After wearing 1 year scleral lenses and using steroids, the inside of my eyes became a war zone. I tried different types of lenses, but unfortunately the only lens that will improve my vision is scleral. Life without lenses: my vision is 20/200 right eye and 20/400 left eye.

So there goes you again. You progress slowly like an animal sneaks up on its victim. You shake every vision I have and you cause a shadow behind every letter that I write. You left me misunderstood by people and took my freedom of driving my car.

Let's not forget about the lights that give me a sharp pain like my eyes are on fire. The headaches, because I squeeze my eyes to make a sharper vision to read. And why do you want to create light into a huge halo? What is that about? Isn't it enough that I can't see in the dark? I do understand the song 'Halo' from Beyonce now.

Did I mention the worries about my future as a single mom? How will I be able to work and take care of my son? After months of crying myself to sleep, I'm in the next stage which is being mad at you. Mad, because you make it difficult for me. I have to accept that I don't have control over you.



I have to learn to let people talk if they judge me for looking at my iPhone and ask me why I can't read a book but I do read a text on my phone.. Sometimes I want to punch them in their face. Especially if they say: Why don't you try laser or glasses? Breath..... 1, 2, 3...

Dear Keratoconus, I'm a fighter. And since you are trying to progress some more in my left eye I have to fight back. Cross linking! Will you promise me to behave after that?

Check out my new blog post:

Charlie Polak (Facebook)

37 comments:

  1. well said. you're not alone and you described it perfectly.

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  2. Crosslinking is a great option for early stages of keratoconus to prevent further damage or if the corneas is constantly changing. However Crosslinking will not reverse the damage, and in many cases an option like PVR PROSE Treatment or EyePrint Pro is needed after the procedure.

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  3. Crosslinking is a great option for early stages of keratoconus to prevent further damage or if the corneas is constantly changing. However Crosslinking will not reverse the damage, and in many cases an option like PVR PROSE Treatment or EyePrint Pro is needed after the procedure.

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  4. Wow so can relate to your story....I'm 18 and just a month ago I had my cornea transplant in my left eye because there was no other option....the changes have not started yet but I can't wait to experience life with a different view than what I'm used to.

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  5. You are not alone, take care.

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  6. GOD will see you through, and you are definitely not alone. Everything you described was what I experienced to a T. I had the exact vision 20/200 right eye, and 20/400 left eye, so I know what you're going through. I had an AMAZING doctor perform what's called a DSAEK (Partial Thickness Corneal Transplant Endothelial Keratoplasty) 20/400 became 20/40 the day after surgery! #thereishope

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    1. Thank you for your comment. Can you provide your doctor's name. How you see and feel now, a few months after the surgery?

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  7. GOD will see you through, and you are definitely not alone. Everything you described was what I experienced to a T. I had the exact vision 20/200 right eye, and 20/400 left eye, so I know what you're going through. I had an AMAZING doctor perform what's called a DSAEK (Partial Thickness Corneal Transplant Endothelial Keratoplasty) 20/400 became 20/40 the day after surgery! #thereishope

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  8. This comment has been removed by the author.

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  9. This morning as I drove my car and my right eye had this burning sensation which hasn't stopped in the last 3 months, i started crying and couldn't stop... I was crying because I was upset.. upset at this disease that seems to be taking over my life and making me feel insecure about my life and the future that is ahead... More than relating to your pain, I feel it...

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    1. Hi Maria, I hope you feel a little better. Sometimes it's good to let all the emotions out. You have every reason to be upset. KC can be a #***🤐

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    2. Maria, I had the experience. Your seem to be extremely inflamed. You must mositurerise. I also try looking candle flame through pinhole glasses, that really help to produce your own tears.

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  10. i feel your pain and i understand perfectly what you are going through because i went through it as well until i had a corneal transplant in my left eye first than my right eye one year after.
    i hope you will be able to find a donor as I did. You will have your life back and it will be easier for you to do your daily activities.
    be able to read

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  11. Well written! I have been working with eyes for a very long time, 18 years ago we could not offer anything and now see fabulous results with Cross Linking. It is not for all patients and needs to be caught early enough. One of the biggest frustrations that I see all the time is patients not be referred early enough before loss of best corrected vision has made its way up the chart and the patient has spent a fortune on various aids.

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  12. I am suffering from KC since 10 years, very frustrating, tried RGP, Rose K , piggy backing. Sceral and back to piggy bag with lot of pain . People who have not experienced this will not understand what your going through and I work 12 hours a day in hotel with this pain. Got almost adapted to the pain and irritation. What can we do, no life without lenses for us.
    Thinking of planning for a transplant, but now on peak of my career not able to take a call.

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  13. I indeed understand your pain and frustration. I feel it everyday at home and at work. The worst time of the day is when I put those RGPs in my eyes. The best time is when I take them off. I have told my wife that if I died, to make sure someone takes my contacts out before the funeral (LOL). Right know I'm expecting my first pair of semischleral lenses. I can only hope for the best since after 31 years of RGPs my eyes are getting too irritated to wear them. I can honestly and truly tell you that I only hate 2 or 3 things in life, and Keratoconus is number 1. I will add you to my prayers.

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  14. I indeed understand your pain and frustration. I feel it everyday at home and at work. The worst time of the day is when I put those RGPs in my eyes. The best time is when I take them off. I have told my wife that if I died, to make sure someone takes my contacts out before the funeral (LOL). Right know I'm expecting my first pair of semischleral lenses. I can only hope for the best since after 31 years of RGPs my eyes are getting too irritated to wear them. I can honestly and truly tell you that I only hate 2 or 3 things in life, and Keratoconus is number 1. I will add you to my prayers.

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    1. Lol @ take your contacts out before your funeral.

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  15. The breath 1, 2, 3 part is so true. People should think before they ask foolish questions. It's easier to read words on a phone because of the lighting and zoom feature. Also we can put the phone closer to our face. Sometimes I think people try to be funny or act dumb, but I learn to stay calm.

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  16. I feel for you ... Been there, done that ... have tried all sort of lenses and luckily been able to find the right type which works for me.Recently started practicing Yoga eye excersizes which seemed to help with stabilization of KC progression after fairly short period of time and also resulting in some improvements, which i wasnt able to see previously. Can only advice to all KC patients to have a go with these excersizes and not to give in but keep on trusting yourself in overcoming all nasty side effects this tiresome KC brings into our lives. Worth trying, you have nothing to loose.
    In my case after CR surgery on right eye, Synergyes contact lense with combination of soft lense (so called piggyback) is working after 5 years of searching right type of lense, as i wasn't willing to give up easily and kept on searching. Good luck!

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  17. Common feel among all the Kerataconus :( I will add you to my prayers

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  18. Common feel among all the Kerataconus :( I will add you to my prayers

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  19. Did you know that there is another new medicine comming out in the uk right now it's in animal testing, but is soon to test for humans where it basically reverts the eyes back to an embryonic state and it reverses the damage and corrects the eyes. Once testing starts it will be available for those who are on the verge of corneal transplant but there is hope out there and I for one am saying bye bye to KC and hello near or perfect vision. Cross your fingers that it will come out in our life time as for the United States we are super behind them. Germany has been doing CXL's since the 90's with huge success rate and we are JUST now getting on board for that so I would day we are almost 30 years behind them but it will come. Never lose hope in it.

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  20. You explained the frustration of this disease very well. It has been almost exactly as you have described in my life, too. My son is an adult now, but the struggle continues. I also worry that he will present with KC at some point. I will share this post as it may help people who don't understand.

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  21. So relatable.Totally feeling your pain.I loved the phone part.It hurts,people never spare us...

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  22. Why not go for glasses or laser ... I often face the same question. Just shows people's ignorance. Take care. U r not alone

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  23. im so depressed i am so tired of this disease beating me every damn day

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