Some updates: I have figured out a way to avoid pain. This mostly involves wearing moisture chamber glasses all the time, and a bunch of other things to go to sleep that I'm not going to detail here (if you want to know, DM me). The glasses are uncomfortable and fog up, but they work to keep my eyes moist. I still need to put in eyedrops even with the glasses, which shows you how insanely dry my eyes are, but the important thing is that the pain has stopped.
I've decided that even though my life really sucks now, it's still preferable to death. I now have to live with a really horrible chronic disability. But.... any blind person would give their right arm to have my eyes. So I'm grateful that I can still see and that I can now walk around outside (uncomfortably) while wearing these glasses. In the past I thought I'd rather be paralyzed from the waist down than have my condition, but now I am not so sure. So I'm also grateful that I can still use the rest of my body with few problems.
I wouldn't wish this life on my worst enemy, but it's a life. Life is precious, and you only get one shot at it. Even when it totally sucks, you can always choose to make the best of it. And that's what I'll try to do. It won't be easy, but I'll try.
As I decided that I didn't want to CTB anymore, I became sad. CTB is easy, figuring out how to life your best life with a horrible chronic disability that's poorly understood is hard. I had a really easy life before this happened, a charmed life, overcoming a poor and abusive childhood. And now I will have a really hard life, despite all my material wealth that I worked so hard to earn. Oh well.
I'm getting autologous serum tears soon. Hopefully they will help. People with my type of condition have reported that it helps, but some people have reported that it doesn't. So hopefully I'll be one of the people it helps. But with my TBUT=0, I am not super hopeful that it will return me to normal. Ideally I just want to be able to sit indoors without wearing moisture chamber glasses. If I can do that, I will be a lot happier.
I've decided that even though my life really sucks now, it's still preferable to death. I now have to live with a really horrible chronic disability. But.... any blind person would give their right arm to have my eyes. So I'm grateful that I can still see and that I can now walk around outside (uncomfortably) while wearing these glasses. In the past I thought I'd rather be paralyzed from the waist down than have my condition, but now I am not so sure. So I'm also grateful that I can still use the rest of my body with few problems.
I wouldn't wish this life on my worst enemy, but it's a life. Life is precious, and you only get one shot at it. Even when it totally sucks, you can always choose to make the best of it. And that's what I'll try to do. It won't be easy, but I'll try.
As I decided that I didn't want to CTB anymore, I became sad. CTB is easy, figuring out how to life your best life with a horrible chronic disability that's poorly understood is hard. I had a really easy life before this happened, a charmed life, overcoming a poor and abusive childhood. And now I will have a really hard life, despite all my material wealth that I worked so hard to earn. Oh well.
I'm getting autologous serum tears soon. Hopefully they will help. People with my type of condition have reported that it helps, but some people have reported that it doesn't. So hopefully I'll be one of the people it helps. But with my TBUT=0, I am not super hopeful that it will return me to normal. Ideally I just want to be able to sit indoors without wearing moisture chamber glasses. If I can do that, I will be a lot happier.
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YourEarthRoommate
New Member
- Jun 29, 2024
- 3
I have a smile on my face after reading this. Speaking as someone who's experienced disability, life will get easier. You'll learn and adapt to this challenge, but more importantly, you'll grow leaps and bounds as a person. You have beautiful days ahead of you, and you deserve to live them <3
One of the main ways I cope with depression is through music. It helps me process my emotions. Albums like Deathconciousness and Spiderland make me realize I'm not alone. This is a playlist I made on Spotify for thinking:
You might hate every song on it, but who knows. Let me know if I can help in any way. I live in CO if you ever want to grab lunch sometime.
One of the main ways I cope with depression is through music. It helps me process my emotions. Albums like Deathconciousness and Spiderland make me realize I'm not alone. This is a playlist I made on Spotify for thinking:
You might hate every song on it, but who knows. Let me know if I can help in any way. I live in CO if you ever want to grab lunch sometime.
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I'm in the same boat minus the LASIK. I have a gun but I wanted a peaceful death more than a anything. Can't seem to source SN though:(
Oh no, that's horrible. What treatments have you tried? I think if I had a gun, I would have been dead already. SN doesn't seem that peaceful to me, as you have to take anti-emetics, which means it causes nausea. From what I understand, it's not that pleasant of a death. For the most peaceful death, inert gas is the way to go, I think. But I don't think suicide is the answer, at least not until you've tried EVERY treatment.
Some updates about my situation:
- I went on Prednisolone 1%, 4x/day. While I was on it 4x/day, or at least 3x/day, along with cequa and autologous serum tears, I was able to live a normal-ish life as long as I wore moisture chamber glasses constantly, and not even have to put in OTC eyedrops much. My TBUT went up to 7. Multiple doctors said everything looked fine and I shouldn't need to wear moisture chamber glasses constantly (but I did, still. Because if I didn't, I felt like my eyes would dry up). And I had to get off of prednisolone, because otherwise I'd develop cataracts and/or glaucoma.
- Once I tapered Prednisolone to 2x/day, things got bad. My lower left eyelid really started to hurt. Then it got better.
- After I tapered to 1x/day, things seemed fine.
- A few days after I stopped Prednisolone, everything went to shit. My left eyelid really started to hurt, and I had to put in lots of eye drops all the time.
- I went to a doctor, an ophthamologist, recommended to me by a dry eye sufferer. This doctor seemed to care, but he was really crazy (he was talking about how he got "trespassed by cops" at a show, I still don't know what that means despite me asking him). He said that my tears were evaporating instantly now, and he showed me a video he took of my meibomian glands. They were red and swollen and had yellow bumps on them. He did IPL/RF/manual expression and the manual expression hurt A LOT.
- I felt a lot worse in the days after the manual expression, with a lot of pain. I've been reading up about it and it turns out that manual expression can damage your meibomian glands, although some people say that it can be very painful yet beneficial. But of course, I am very scared that the doctor damaged my glands, maybe because I don't trust him. WHY DID I DO THIS, YET ANOTHER MEDICAL PROCEDURE THAT MADE ME WORSE INSTEAD OF BETTER???
I'm in pain now. It feels like someone is stabbing me, constantly, in the eye. And overall my eyes feel dry and gritty. I don't know how much longer I can tolerate this.
Even if the pain subsides, I'm still shocked by my poor decision-making. Why did I let this guy do painful things to my eyes? He's a nutcase. What the hell is wrong with me.
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I'm sorry you are going through this. It sounds horrible. I have always been too scared to have lasik even though I've worn glasses since I was five. But I can relate a bit as I once had a tear on my cornea and it was hell for months and to this I still have to put ointment in 10 years later. This is why I dream of CTB one day- just when you think life can't get worse it does. I don't want to see what horrible things life has in store for me. That makes me even more miserable.
needthebus
Student
- Apr 29, 2024
- 112
It's so hard to know what to do in these situations, wait it out or just try something, this isn't poor decision making. You couldn't know and did as well you could in a hard situation with limited information.
Sometimes pain and injuries improve slowly but it takes many months.
I am so sorry u r in pain. you seem like a nice person
I'm so sorry. I can empathize with this so much. It's not your fault. Medical stuff has ruined me so that now, I have to commit suicide to end my torture. I've been harmed before in years past and knew better than to go back but it's permanent this time. They finally got me. The shame, guilt and regret is immense.
Hopefully, things are just flared up for you and will settle back down. I'm so sorry. You did it because you wanted to get better.... It's what most people do but some of us are just extremely unfortunate.
Eysuvis didn't help. The only thing that helped was prednisolone. I'm on loteprednol now and it isn't helping as much, but maybe that's just because I did that IPL treatment.
uglyugly
Student
- Aug 24, 2024
- 147
I am so sorry this happened to you and I can understand the fear of being disabled. I do want to thank you for sharing your experience, though, as it has cemented my decision to NEVER have lasik.
Please don't blame yourself for what happened. You were trying to improve your life and something out of your control screwed that up. I hope you can find a solution and find peace.
Please don't blame yourself for what happened. You were trying to improve your life and something out of your control screwed that up. I hope you can find a solution and find peace.
I'm so sorry you know this hell also.
You name it, I've tried it. I've had 13+ IPL in 2 years, iLux, Xiidra, autologous serum, scleral lenses, warm compresses twice a day, doxy, blah blah fucking blah. All of it.
I was in a stable place for a couple of months. It doesn't last. Changed pretty much overnight back into misery. I was compliant with every treatment, closely followed by the doctor. They have no idea why I tanked.
I'm over it. I don't want to try anymore.
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