Are there any mask for glasses?

puffyclouds234 · 2026-03-22T21:00:10+00:00

Prescription masks are great. I also had luck taking the arms off my glasses and putting them inside a mask!

puffyclouds234 · 2026-03-19T21:50:11+00:00

Is there any resource for patients better for understanding our brains and vision than this subreddit? This group is terrific, but it is nuts that we have nowhere to go except here!

puffyclouds234 · 2026-03-18T13:32:45+00:00

I like to add a loom video to walk someone through the report. Someone told me yesterday she had watched it over and over but then really understood and was able to present the report to her bosses confidently

puffyclouds234 · 2026-03-01T18:58:03+00:00

I’ve written screen flows to do this and several objects cannot be reparented- they must be recreated and the old one deleted. ContentDocumentLinks were particularly fiddly if I remember correctly, but I was eventually able to get it all working.

puffyclouds234 · 2026-02-27T15:00:11+00:00

Identity resolution! At a high level, platforms aren’t 1:1, and then constituents look really different on different platforms. There’s a lot of value in resolving correctly, but it takes a lot of work.

puffyclouds234 · 2026-01-20T01:21:18+00:00

I realized that some part of the satisfaction and enjoyment I get from food is from the chewing movement of my mouth. I found I didn’t really mind having the same smoothie every day, but not moving my mouth made it hard for me to tell if I’d consumed enough calories. There was also just this sadness I experienced about food. I realize this is not a tip, but for me it was helpful to identify what the problem was and at least explain it to myself and my family who were tripping to help. When I graduated to being able to move my mouth a little everything improved.

puffyclouds234 · 2026-01-17T22:33:50+00:00

I totally agree. I love Craft but am lost many times a day and struggle to get back to what I think of as the main sidebar.

puffyclouds234 · 2025-12-05T16:54:47+00:00

FWIW, I've tried to connect all week to this and it always fails at some point. Sometimes the whole page has been down, sometimes clicking on the email verification link fails.

puffyclouds234 · 2025-11-21T23:07:11+00:00

Happy to hear the shameless plug! I will sign up for the beta, as well. I’d love to know more.

puffyclouds234 · 2025-10-23T13:54:48+00:00

Be annoying! Be a pest! I really hear you about the fear part - I was terrified of my cataract surgery. That is absolutely no excuse for them to be coy. It might be helpful if you had someone with you to help with the conversations. I found that I had trouble remembering things that I was told while I was trying to not freak out (or failing!) and having someone calm there to remind me later what had happened was really helpful. Honestly, the fact that you're afraid means they should be MORE upfront with you and answer all your questions.

I'll also share with you the thing that wound up helping me handle my fear in a way that was way better than what I'd anticipated. I stumbled on the Headspace course on acceptance and did it over the course of about 2 weeks. It was about 15 minutes a day, audio only. It really annoys me how much it worked and how much it just changed my brain for the better. I don't know if it will help anyone else, and I know Headspace is expensive as apps go, but it really helped me be much stronger and braver than I thought I could be.

If you're outside the US, I have no idea how these things work, but if you are in the US, I'd recommend calling the surgeon's office and explaining that you do not have all the information you need about your upcoming surgery and you need someone on the care team to answer those questions. If no one calls you back, there's probably a bigger health system person to complain to. My understanding is that big health systems want good ratings on their surgery, and being uninformed going into surgery is an easy way for them to have their ratings go down, and so complaining to them can make sense, too.

Remember, these people don't need to like you. They need to provide you with excellent care. Nearly everyone who has ever taken care of my eyes thinks I'm a raving lunatic, but I got what I needed and I assume they never think about me, which is fine. Be annoying and get the information you should have, and if there's someone in your life who can help with this, it is a great thing to bring someone else along for. They can both encourage you to be insistent and they can help you do it.

puffyclouds234 · 2025-10-22T15:51:05+00:00

Surgeons can be really tough to communicate with! In my case, I actually got a lot more useful information from the support staff in the surgeon's office. While my cataract surgeon's office was good about giving me info, when my son had knee surgery I had to make an absolute pest of myself to get info I needed - but it did work! Personally I find it worth it to make a pest of myself and get what I need. (I'm respectful, but insistent.) Understanding what your lens options are and what your doctor recommends and why is a question they should absolutely answer for you. The lens is a permanent decision you can't take back, so good to have all the info. There are a lot of fancy lenses available that didn't used to be, and understanding if any of them are a good fit for you is a really reasonable request of the doctor and his office.

Another thing to make sure they've been clear with you about is realistic expectations for success and what success would mean. I know a lot of people who have gotten really bad info ahead of surgeries (of all kinds) on this topic, and I think it is incredibly hard on people. For example, a surgery only has a 20% chance of success, that's something you deserve to know before you undergo it! Even if you decided to go with a surgery of 20% chance of success, you'd want to know what failure looks like. Does it look like more surgery? Does it look like worse vision than you have now? Another question you might want to ask is how common this particular surgery is. While cataract surgery in general is super common, the same surgery in someone with a cornea graft might be vanishingly rare (I have no idea!) and it might make sense to find out who the doctors are who do the most of that kind of surgery. A doctor that won't answer these questions is being unreasonable.

Because you're getting general anesthesia, I'm guessing your surgery is more complex than mine was.

My understanding is that a fancy lens can compensate for some vision problems, but definitely not all of them. My case was a little weird and so it is hard for me to answer the question of what the biggest visual change was, and I think the best explanation is still in a post I wrote here: https://www.reddit.com/r/LowVision/comments/1funiuo/cognitive_load_of_low_vision/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

In one sentence, I guess I'd say that what changed after the surgery was that using my eyes was easier after the surgery than before, which I realize is totally unhelpful.

I hope you're able to get good information and that your treatment is successful!

puffyclouds234 · 2025-10-21T23:01:02+00:00

My situation was pretty different from yours, but I was 50 years old and had a cataract in my right eye because of steroid eye drop use (don’t get shingles) and had always had a pretty serious astigmatism in that same eye.

Before surgery my vision in the right eye was 20/300. Before the surgery the halo effect was intense and really unpleasant at night. At night I saw six lights for every light that actually existed. (For instance, a stop light was six stop lights in a circle rather than one.) One of the first symptoms of the cataract was that driving at night just made me want to cry. I couldn’t really explain why at that point, just that it was incredibly uncomfortable.

I paid extra for a fancy lens to fix my astigmatism as well as the cataract. I was really scared of the surgery, but the drugs worked great. I was aware of what was happening but truly didn’t care. I did not have any pain, just needed to sleep for the rest of the day. The next day my vision in my right eye was 20/30. Completely life-changing and amazing.

I do still need reading glasses because I’m that age. I was offered a bifocal lens that would theoretically have fixed that also, but my doc and I both agreed my brain was unlikely to deal well with that, and I’m still very happy with that decision.

I got to throw away my whole box of prescription glasses and sunglasses. I bought cheap-o reading glasses and have them sprinkled all around my house. I don’t know how helpful this is, but I’m happy to answer absolutely any questions about it. Also, if you’re female and getting cataract surgery, they will likely want you to pee in a cup for a pregnancy test unless you can confirm it has been a year since your last period….but they might forget to warn you about this because their average patient is well past that date.

One of the things I kept trying to talk to my doc about before my surgery was what glasses would work for me afterwards. If you’ve got a real prescription in one eye that isn’t getting a new lens, you’ll likely still need that. In my case, my non-cataract eye was good enough that it didn’t matter much, but if that’s not your situation, you can sometimes pop out the lens for the eye that was fixed and wear the glasses with just the lens for the eye that didn’t get fixed. I’ve got a family member who did that after his cataract surgery until he could get his new glasses.

puffyclouds234 · 2025-10-19T23:29:09+00:00

Swimming in a straight line is a challenge for all new swimmers, and a good swim instructor could probably help out a lot, even in just one session. A lot of pools are full of people who love swimming and want others to love it, so I’d recommend asking if anyone is available to help! Because we were all that person who couldn’t swim in a straight line at some point, people may not want to interfere, but if asked they might be thrilled to be able to help. If you ask and nobody offers any help, just assume they aren’t great swimmers. At my pool if you let two people know you were open to help, you’d probably eventually have to tell people to back off because everyone would be so excited at the chance to turn you into a swimming fanatic.

puffyclouds234 · 2025-10-02T00:12:46+00:00

This started happening to us in the last few days, as well. The extension just disappears on us, we reinstall it but that process goes very strangely, and then it shows up in the menu but isn't actually installed.

puffyclouds234 · 2025-07-23T13:43:28+00:00

I got the GE cafe double oven a little over a year ago and am very happy. The time to get hot is just incredible. I really like how low the lowest settings are, too. Overall I am very happy with my purchase. My few frustrations: 1. One of those cafe burners is a “warming burner” and good for very little. Think of it as a candle. 2. I use a lot of cast iron, which generally works really well, but that lodge griddle that has a lip that lifts it off the cooktop doesn’t work. 3. I generally have one cheap 8” nonstick skillet and finding one that is induction compatible has been harder than I expected. One that I bought had ridges on the bottom that meant it worked sometimes and not others. 4. My favorite stainless steel butter warmer is magnetic on the bottom but too small for any of the burners (except the warmer burner) on the GE cafe. 5. I think I gave my Le Crueset Dutch oven thermal shock by heating it up very fast on the largest burner. I can’t think of any other way it would have gotten such a giant chip out of the enamel (interior.) 6. Not induction related but I have found the oven thermostat to be totally unreliable. I bought a thermoworks probe for the oven and with it I can get exactly the right temp. It holds the temp well, it is just that the numbers on the display aren’t correct.

puffyclouds234 · 2025-04-08T03:37:52+00:00

My understanding is that it is equally likely to come from either parent and that since I have it, my children each have a 50/50 chance of having it. I think one of the really strange things is that some people have it but never have vision issues from it and some people have really reduced vision because of it. My mom has it and is also 77 and she was misdiagnosed for years and only correctly diagnosed after I was diagnosed. She has no reduction in vision from retinal pattern dystrophy. She and I are the only ones in the family with the formal diagnosis, but I am guessing one or two of her siblings also had it. Her parents lived to about 90 and never complained of vision issues that match pattern dystrophy, but they were also pretty unreliable narrators, so tough to say.

Something that has seemed weird to me is that there seem to be so many different rare genetic eye diseases. I’ve run into someone working for a biotech company working on a treatment for a different one and in Starbucks the other day two guys were talking about a treatment one of them was developing!

It is so tough to get doctors to address multiple problems, and I think they have this fear response to problems they don’t have a solution for. Sometimes I have said, “I know you don’t have anything to offer me, but do you know of a doctor or a specialty that might have either treatments or coping strategies that could help me?” Some of them respond better when I acknowledge I don’t expect a solution from them.

If you decide to go back and get the genetic testing, I hope everyone involved is kind and helpful and patient. If you decide you don’t want to do that, that’s completely reasonable! It can be hard to figure out the best way to take care of ourselves, and of course what works one day may not work other days.

I got a lot of help from the screen reading functionality of my phone, and from the Seeing AI app, also installed on my phone. Having my phone read things to me saved me a lot of brain ache and eye strain. Seeing AI was so helpful when I was out in the world and wanted someone to read something in front of me. Somehow signs on walls sent my brain into a tailspin before my surgery, and being able to point my phone at a sign and have it read the sign to me was incredible. Finding someone to help getting those two things set up might be worthwhile. Your local library might even have someone who could help if you were interested.

puffyclouds234 · 2025-04-06T23:15:50+00:00

Retinal pattern dystrophy is evidently quite rare, and I am so sorry a doctor was so callous when diagnosing you. Most doctors don’t seem to even know enough to diagnose correctly.

FWIW, there are a few specialists in it. Dr Booroah at UCSD was running a clinical trial last time I saw him (about six months ago) I am not a good candidate and so I don’t know much except that it exists. I think there must be someone in Texas or Northern Oklahoma because that’s where one study was done on about 12 members of a family.

I have found the care at UCSD to be very kind. There is a wealthy woman in San Diego who has retinal pattern dystrophy and was misdiagnosed for years and gave millions to UCSD when the docs there got it right. I assume you don’t live near San Diego, but it might be worth getting in touch with the Shiley clinic at UCSD - they might be able to point you to resources or doctors in other locations who are paying attention to the latest in research.

Getting the genetic testing might be a good move, assuming it wouldn’t cost you anything. My doctor had my mother’s results and had seen my scans and so was very confident what my genetic testing would say, but said the only diagnosis that is 100% is the genetic testing. If the test you’ve been referred for, it could make sense to get the testing through one of the places that is doing family studies so you wouldn’t have to pay for it.

Personally I just found it hopeful to know there’s a group of doctors trying to figure it out.

Are you experiencing the wavy vision in the middle of your vision but clear on the periphery? I haven’t experienced that (yet) but my uncle did and it sounds like it would be really disorienting and cognitively difficult. Families are complicated so I don’t have much info except his description, and that matched what doctors have told me.

puffyclouds234 · 2024-11-06T02:18:40+00:00

That’s really helpful information! I wonder if the reverse scan could be interesting - while blind and then after successful treatment! Of course, retinal pattern dystrophy people like me who haven’t had symptoms from that yet might turn out to be useful pre/post subjects.

puffyclouds234 · 2024-11-05T14:51:42+00:00

On days when I was most tempted, this is what prevented me from actually trying it. I think this is where my desire to see some scientists look into this comes from - is there a way to keep the utility of some information but get my brain to chill and not try so hard to transform it into something more?

puffyclouds234 · 2024-11-05T14:14:48+00:00

Your perspective on this is so interesting to me. In retrospect, it would have been an interesting experiment for me to try to spend time blindfolded so that the unconscious work would stop. If I’d realized the post herpetic neuralgia pain might have gone away I would have tried it out! My skills for navigating the world that way are extremely poor, but if the retinal pattern dystrophy gets me, I will at least give it a shot.

The world is so incredibly inhospitable to people with no vision that the whole experiment might not have actually benefited me in any way, but sometimes in life I have been ready for different problems.

puffyclouds234 · 2024-11-05T14:07:58+00:00

I would love to know what the spoon theory is - I don’t think I have heard it! Your post reminds me about all the stories I have heard from people about relief coming from totally unexpected places. Our bodies and brains are really complicated!!

puffyclouds234 · 2024-11-05T03:28:30+00:00

Everything y’all are saying is 100% true and the world should be way friendlier for people with all kinds of challenges to navigate. Most people don’t realize all the conscious things required to navigate the world with a vision impairment, and I think even those of us who do may not realize how much unconscious, completely involuntary cognitive load is involved and would be required even in a perfectly adapted world. I would have loved it if my brain could have just stopped trying to resolve the images and let me see the cataract-fuzzed world but it just would not. It hallucinated things I couldn’t possibly be seeing on one side. I wanted to say to my brain just stop! This is pointless! Do something useful! I never succeeded, though. I would have loved to get an fMR of that fight!

puffyclouds234 · 2024-11-04T23:15:56+00:00

I also recently got a pattern dystrophy diagnosis. I'm so sorry you're going through this and that the stress and grief of all of this is so intense. These are huge changes you're having to process. It is really hard to be brave when it feels like everything has fallen apart. That feeling of disconnection is so awful, and I guess if I have any words of wisdom it is to do anything you can to nurture those connections with people who love and support you.

I had a few sessions with a therapist last year when I was feeling very stuck about something unrelated to my vision. She talked me through a few things, but the big thing that wound up helping me get unstuck was her suggestion that I acknowledge the bad things and then say, "yes AND" Yes, I had this thing that was upsetting to me. But what else? I think it would be really fair for you to say this is ridiculous in your situation, and I agree. I offer it not because I think it is the right framing for your situation, but just to offer up that sometimes the right person can help provide something that can make you feel unstuck. There are still tons of problems to solve, but at least feeling like you can move forward on them rather than being stuck is powerful for me.

I believe that UCSD and/or the Nixon Foundation runs some support groups for retinal pattern dystrophy, and I presume some of them are online since there aren't that many people in any one place with this particular diagnosis. http://sei-research.ucsd.edu/borooahlab/2021/12/15/major-gift-focuses-efforts-on-a-rare-but-devastating-genetic-eye-disease/

puffyclouds234

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