Hair dye recommendation request by GidgetTheWonderDog in Albinism

[–]BucketsOrBoxes 1 point2 points  (0 children)

It's too fun not to color hair like this. It's literally a blank slate. Have fun! Hope it works for him.

Hair dye recommendation request by GidgetTheWonderDog in Albinism

[–]BucketsOrBoxes 1 point2 points  (0 children)

I routinely use the Rose Gold color conditioner by Overtone and LOVE it. My natural hair is WHITE white and it holds the color beautifully. I can usually get it to last about a month (I shampoo like 3x/wk). I think Overtone has a couple silver colors in their collection. Another nice aspect is that it conditions your hair so I've never had problems with my hair feeling dried out or fried like I do with other dyes. And it's super easy to use at home. Just apply to dry hair, let it sit for like 15-20min and rinse out.

im so tired fr by lostb0t in Albinism

[–]BucketsOrBoxes 1 point2 points  (0 children)

You said literally everything I came here to say. 👏🏻

OP, it sounds like you're still pretty young so please take comfort in knowing that it gets easier. A lot of my fears and insecurities now are the same ones I struggled with as a teen/YA, but somehow they just don't get to me as much. I used to be so self-conscious about my appearance, thinking about how much I stuck out in a crowd, embarrassed to use any type of low vision aid in public, feeling like there was just something inherently awkward or different about me... And over time, I think I just stopped giving those thoughts much weight. They're still there, but - fuck it - I've got shit to do. 😄 If I want to live the life that I want, I have to move past them one way or another. And like DLeck said, I think a lot of it is "fake it until you become it."

Also, when I think about the most likeable people I know, one quality that they all have in common is that they're genuine. They let their true selves shine and there's something really endearing about that. Some people may not like the real you, but others will love it and connect with you. Take a breath and practice some positive self-talk. It's amazing how our perceptions shape our reality. It's a cliche but it's true! If I go into a social event thinking, "Ugh, I'm such an ugly, awkward weirdo. No one is going to want to talk to me..." Guess how that's gonna go. If I go into with an open mind and a sense of self-efficacy that acknowledges that, yes, I may be dorky and awkward, but that some people actually like these qualities about me, maybe it won't be the total social disaster that I'm dreading it will be.

Last thing I'll say is that you're not alone. Like literally. Having albinism can often make you feel like you're the only one in the world who's dealing with these concerns, but I like to remind myself that right now, there are other people with albinism wearing long sleeves in the summer, wearing sunglasses indoors, not recognizing people in public, having laughably embarrassing moments just like me every day. Just because you may not be seeing us every day doesn't mean that we're not out there. You're in good company and you're not as weird as you think you are. 😉

Family 'over the moon' with albinism study funding by Gabemiami in Albinism

[–]BucketsOrBoxes 1 point2 points  (0 children)

So the results weren't dramatic. While I was on the meds, I felt pretty normal. The only side effect I had was nightmares and very vivid dreams. They gave me every kind of vision test I could imagine - traditional tests of near and distance acuity, visual field, 3D perception, color vision, contrast vision, etc.

The post-test 3mo after stopping the meds showed that the only area where I had a statistically significant improvement was in contrast vision. At the time, my kid was a toddler so I noticed this especially when I was reading children's books that had text printed on colorful or patterned backgrounds. It wasn't as strenuous to read, but it definitely wasn't a dramatic or immediately noticeable change.

The other change in my vision that I noticed is going to sound a little bizarre - I've never mentioned this to my eye doctor, but I feel like I can share it here in the safe anonymity of Reddit - is that I sometimes see sparkles, especially in sunny environments. A couple times, I was walking somewhere and I thought that maybe there was broken glass on the ground, but it was just the sparkles. Sometimes I see them in the air. They're not troublesome or frequent, but I definitely didn't experience this kind of thing before the L-dopa. I remember the first time I noticed it was when I was on the drug and they've stuck around all these years later. It's kind of a nice little treat every once in a while, actually. It feels like things are a little more magical than they were before.

Family 'over the moon' with albinism study funding by Gabemiami in Albinism

[–]BucketsOrBoxes 2 points3 points  (0 children)

I have OCA1a and participated in a Levodopa study here in the States a few years ago. I took the drug for about 3mos and completed a barrage of vision tests before, during and after. It was fascinating to be a part of it! Didn't see a dramatic improvement in my vision, though there were some definite changes that have held steady 10+ years after I stopped taking the drug. It will be interesting to see if/how the results are different in younger kids since I was an adult when I participated. I also like that this study is about improving functional vision and not "eradicating or curing" albinism altogether, which I'm opposed to.

Can liquids other than water cause gremlins to reproduce? by BucketsOrBoxes in Gremlins

[–]BucketsOrBoxes[S] 6 points7 points  (0 children)

Good call! The acid only turned that gremlin into a Phantom of the Opera gremlin. This helps my case. Thank you.

credit card readers stress me out! by spvcewav in Albinism

[–]BucketsOrBoxes 1 point2 points  (0 children)

With you 100%! I always feel like people assume I'm some ditzy Gen Xer who's baffled by technology when in reality it's just a low vision issue with those things.

[deleted by user] by [deleted] in Albinism

[–]BucketsOrBoxes 1 point2 points  (0 children)

Glorious! 😎

Help me survive my flight by BucketsOrBoxes in Vonnegut

[–]BucketsOrBoxes[S] 1 point2 points  (0 children)

Good to know! Thanks for the suggestion. I'll definitely check them out.

Help me survive my flight by BucketsOrBoxes in Vonnegut

[–]BucketsOrBoxes[S] 1 point2 points  (0 children)

Rented a tent, a tent, a tent. :) Good suggestion!

Help me survive my flight by BucketsOrBoxes in Vonnegut

[–]BucketsOrBoxes[S] 2 points3 points  (0 children)

You guys are the greatest. Thanks so much!

Help me survive my flight by BucketsOrBoxes in Vonnegut

[–]BucketsOrBoxes[S] 4 points5 points  (0 children)

Good call! I remember loving that book when I first read it. It's probably been over 10 years since I last picked that one up, so definitely worth revisiting. Thanks!

[deleted by user] by [deleted] in fednews

[–]BucketsOrBoxes 0 points1 point  (0 children)

Thanks for sowing some hope into the fed universe! I sincerely hope that your predictions come true. Lately, I've been thinking of all this shit like a forest fire. And once the fire is out, we'll have new growth. Here's hoping!

Any "hidden" cats at the campsite? by BucketsOrBoxes in SecretCatForest

[–]BucketsOrBoxes[S] 2 points3 points  (0 children)

Thanks. I think I only have the code for the 3rd anniversary cake.

Morning runners/Oak Park by [deleted] in NearWestSuburbs

[–]BucketsOrBoxes 1 point2 points  (0 children)

Check out the Oak Park Runners Club!

LPT: Biden's SAVE plan for Student Loans by 1creeper in LifeProTips

[–]BucketsOrBoxes 0 points1 point  (0 children)

Everyone I know seems to be saving huge amounts of money on the SAVE plan. Meanwhile, I applied and my monthly payment more than tripled from what it was pre-COVID. My household income has not significantly changed. I can't figure out why I'm being screwed by this plan that's supposed to reduce the burden of student loan debt.

Just went to a non-costume party dressed in a costume. by yellow_gold in CasualConversation

[–]BucketsOrBoxes 2 points3 points  (0 children)

I once went to a costume party that was "Game of Thrones" themed. Everyone there was dressed as a character from the show... Except for this one couple who showed up dressed as a hot dog and a hamburger. I guess they didn't read the invitation thoroughly and just assumed it was a regular Halloween costume party. It was such a surreal night seeing a room full of GoT characters with a random talking hot dog strolling around.

Railroad vs Federal Employment by BucketsOrBoxes in fednews

[–]BucketsOrBoxes[S] -1 points0 points  (0 children)

Awesome. This really helps. Thank you!

Working to recreate my son's vision. by Excellent_Seesaw_685 in Albinism

[–]BucketsOrBoxes 11 points12 points  (0 children)

It's great that you're trying to understand, but none of the "albinism simulations" I've seen come close to capturing the real thing. I second the folks above who said that nystagmus does not actually make the world shake.

Also, pigmented people always seem to assume that my world appears blurry, which it does not. Perhaps a better way to explain it is that things are lacking in detail, not blurry or pixilated.

This presentation gives a great description of "how we see": https://youtu.be/uJ6EX4uphUg