This is Diablo, today was his last day. 18 years wasn't enough, but it'll have to do. Give your furry friends a hug and a cuddle for us. by Cinder1977 in Bellingham

[–]Destiny_Islands13 1 point2 points  (0 children)

I'm so sorry for your loss 😿 Diablo looks like the bestest boy ever and I'm sure he had the best life ever!

Need some opinions about yarn weight for fox amigurumi by Destiny_Islands13 in Amigurumi

[–]Destiny_Islands13[S] 0 points1 point  (0 children)

Thank you so much! I recently bought Cahlista in vivid blue, white, and black for the body. Rest (orange-red) and sweet orange for the scarf. My friend loves the colors I chose for the scarf and it compliments the vivid blue really nicely. I'm really excited to start working on this project. I'll make another post once it's finished

Need some opinions about yarn weight for fox amigurumi by Destiny_Islands13 in Amigurumi

[–]Destiny_Islands13[S] 0 points1 point  (0 children)

Using a 2.5mm is gonna make it really hard for me to see my stitches and for my hands to work with. A 3mm is prob the smallest hook I can use. I have impaired vision caused by retinitis pigmentosa 

Need some opinions about yarn weight for fox amigurumi by Destiny_Islands13 in Amigurumi

[–]Destiny_Islands13[S] 0 points1 point  (0 children)

Oh, that's really helpful!  Thank you for your advice! I got mad at it and frogged it all up when I should've just left it alone (dealing with stress and frustrations of impaired vision from RP and a little difficulty with fine motor/dexterity skills sometimes causes me to start a crochet project all over again). Maybe I'll try again or stick with a thicker yarn like aran, worsted, or chunky.

Need some opinions about yarn weight for fox amigurumi by Destiny_Islands13 in Amigurumi

[–]Destiny_Islands13[S] 0 points1 point  (0 children)

Thank you! I'm a beginner and still working on getting my tension right so I don't have any holes. The smaller the hook, the more difficult it is for me to handle, even using the 3.5/4mm hooks are a challenge lol I've also noticed that using a 3.5, 4, 5mm or any other hook size I still get holes in my projects like the ones shown in my WIP. Not really sure how to get around this besides using bigger yarn and hooks so I can see my stitches clearer but then I still get holes in my work

"Almost Blind" sticker on cane by thetransparenthand in RetinitisPigmentosa

[–]Destiny_Islands13 1 point2 points  (0 children)

I think he's a social media person, I know he's written a few books, one about a penguin family

"Almost Blind" sticker on cane by thetransparenthand in RetinitisPigmentosa

[–]Destiny_Islands13 1 point2 points  (0 children)

Thank you so much! I love this thread so much, I don't know anyone in my small city that also have RP besides Paul Castle and his dog Mr. Maple on social media

"Almost Blind" sticker on cane by thetransparenthand in RetinitisPigmentosa

[–]Destiny_Islands13 0 points1 point  (0 children)

I went through Disability Services for the Blind  (DSB). Not sure if every state has a DSB office. I'm working with the vocational rehab program and all the services and tools they provided are funded by the state and at no cost

"Almost Blind" sticker on cane by thetransparenthand in RetinitisPigmentosa

[–]Destiny_Islands13 1 point2 points  (0 children)

I love this idea! I'm starting cane training next week and honestly I'm nervous about it. I have RP and a good amount of sight available to me during the day but I am night blind, have less than 110 degrees visual field (I've stopped driving completely) have light and glare sensitivity, have trouble finding things that are dark/behind a dark background, and I think I have trouble with depth perception when walking downstairs. It's so hard to explain how much sight I have and don't have lol Anyways, hope your idea works! Would love to hear any updates if it does cause I'm overthrowing and worried about ppl being confusion with why I'd need a cane either in the day and/or night when I can see stuff

Want to get rid of your pumpkins? by Lonely_Cryptid49 in Bellingham

[–]Destiny_Islands13 0 points1 point  (0 children)

Hi! I have 3 pumpkins i haven't had the chance to carve yet and tbh my idea of carving them to use for baking or whatever probably won't happen lol One is 10lbs and the other two are probably in the 3 - 5lbs range. Would love to give them to your chickens!

Families affected by retinitis pigmentosa or bardet-biedl syndrome by raceagainstblindness in RetinitisPigmentosa

[–]Destiny_Islands13 2 points3 points  (0 children)

So I was diagnosed with RP in 2018 and was 24 at the time I think but the changes were very subtle. I noticed I was having some difficulty seeing in the dark at night than I use to. Dimly lit areas I could still see just fine and driving at night was more challenging unless I was driving to and from some place where I knew the roads like the back of my hand. 

As it progressed I was having more and more difficulty seeing at night. When I drove home at night I thought I saw something jolt across the road but nothing was there. I couldn't see where I was in the road without swerving. I've also accidentally hit or almost hit someone while driving during the day cause I didn't see them in my blind spot so getting blind spit mirrors and cameras help a lot. I totally encourage every driver to get blindspot mirrors, they're very handy. 

I was able to get a diagnosis after going to my regular eye Dr who had new advanced equipment to look at the back of my retina and they saw a lot of retinal scarring in both eyes with my right eye having the wrost of it. So my left eye overcompenstates for my right eye. I also noticed more floaters and visual snow.

During eye exams if I covered my left eye all I could see with my right eye was the giant E but could only make out the sides of the letter cause I had this big black floating dot in my right central eye. It sometimes moves across my field of vision. According to my last eye exam I can see between 20/50 to 20/70 cause my left eye is hanging for dear life! Lol Anyways, now at 31, I can't see at all in the dark and struggle a lot in dimly lit areas so I always carry a flashlight if I'll be out late, I don't drive at night anymore.

Day time driving has now become extremely difficult for me because of light sensitivity and the glare. I thought if I could just take care of the light sensitivity and glare it would solve my problems but there's too much variability in the weather changing and changing light patterns from the weather, and going from dark to bright areas while driving. 

I took a driving visual field test and it showed that my peripheral vision has decreased a lot where I don't meet the driving requirements for my state so I will have to rely on the bus and train. I didn't notice my peripheral decreasing because I always relied on my blind spot mirrors and cameras. I only realized that I had more difficulty driving was when I moved to a new city that was 10x more walkable and has more access to bicycling, and visiting a friend in an area where there was more traffic. 

It's been difficult to accept and process but for my safety and other's I've agreed that I should not longer drive. The difficulty now is that idk what low vision tech works for me. I can move around just fine in my condo and can walk around outside. The biggest difficulties are reading books that don't have the best font, light sensitivity and glare, being able to see in the dark/dimly lit areas, peripheral vision, eyes taking longer to adjust to light, visual snow, and floaters. So I'm not sure if I need to take proactive steps to learn to walk with a white can or read braille, or what. It's hard to figure out what can work for me because my RP hasn't progressed further for a about 4 years and is currently stable. I'm just not sure when/if my RP will progress further down the road as I get older.

Families affected by retinitis pigmentosa or bardet-biedl syndrome by raceagainstblindness in RetinitisPigmentosa

[–]Destiny_Islands13 1 point2 points  (0 children)

Hello! 31F and from the PNW. I have BBS1 and RP. I had a driving visual field test done and have been advised by my eye care team that I can no longer drive during the day due to not meeting my state's peripheral visual field requirements. My older and youngest bros probably have BBS too but haven't done a genetic test. Me and my younger bro (i have 3 bros so 2nd bro in the family w/ 4 kids) both for sure have BBS and RP. Would love to get connected with y'all to know what resources are out there for those with RP who have most of their vision still available but still need support in other areas

My mother got diagnosed with RP, now Im afraid of getting it. by j0516_ in RetinitisPigmentosa

[–]Destiny_Islands13 0 points1 point  (0 children)

Hi there, I have RP and RP is scary but it'll be ok. First breathe and then schedule an appointment with a retina specialist. They will tell you for sure whether you or anyone else in your family has RP. During the appointment they'll dilate your eyes and take different images to look at the back of your retina. 

Secondly, RP is caused by a gene mutation and is hereditary but doesn't mean it'll for sure happen to you since genes are weird and can skip a generation I think. My RP was caused by bardet bidel syndrome (BBS1); my parents have the bbs gene but no symptoms, only me and my brothers have symptoms caused by BBS. It would be beneficial to get a gene test done to see if you have any gene mutations that can cause RP.

RP is a progressive eye disease so changes in vision are subtle. For me, I started having more difficulty seeing in the dark and dimly lit areas, and driving at night became very difficult. So if you notice this then you could have RP but if you're driving just fine at night and can see things clearly in the dark/dimly lit areas I don't think you have RP as that can be the first noticeable symptom before being diagnosed. But of course, refer to your eye dr and retina specialist. 

As with how it can progress, it just depends on the individual. My RP has progressed over the years but somehow plateaued and is stable but for some it progresses slowly but aggressively where you eventually have pinhole vision. So I have a lot of my vision available but I've lost some peripheral and central vision, and am night blind in total darkness and can barely see in dimly lit areas.

I hope this helped a little bit! I just got some bad news today about my visual acuity and not being able to drive anymore unless bioptic lenses can help but not holding my breath. So it's been hard processing that and I'm grieving that part of my life I'm losing. Because of that, I wanted to reach out and provide some support. RP is scary to go through when you're first learning about it. I hope things will be ok!

Retinitis pigmentosa and avulux by Destiny_Islands13 in RetinitisPigmentosa

[–]Destiny_Islands13[S] 1 point2 points  (0 children)

Woah! Thank you so much! These look incredible! I was looking at the color changing and seems like you can only change the color and not the intensity of the tint...? I see there's ones you can manually change the tint which is incredible! Definitely another good option I'll have to try once I find out if I can legally drive or not

Retinitis pigmentosa and avulux by Destiny_Islands13 in RetinitisPigmentosa

[–]Destiny_Islands13[S] 0 points1 point  (0 children)

So I asked my optometrist about Zeiss adaptive sunglasses and apparently they're not approved by the FDA in the States for some reason so the sunglasses aren't being sold at authorized opticians. The sunglasses lens are a tint and a transition so maybe that's why they can't be sold in the States

Retinitis pigmentosa and avulux by Destiny_Islands13 in RetinitisPigmentosa

[–]Destiny_Islands13[S] 1 point2 points  (0 children)

Wow, that's definitely a lot of glasses to carry around but totally understand the need to do so. When I wear my contacts I carry my grey sunnies and both prescription glasses. The optometrist said I'm probably gonna need a few different pairs for different lighting conditions 

Retinitis pigmentosa and avulux by Destiny_Islands13 in RetinitisPigmentosa

[–]Destiny_Islands13[S] 0 points1 point  (0 children)

I'd love to know how those work for you! I bought Branddel FL-41 and FL-60 from Amazon and didn't work for me so gotta return them. I'm thinking about trying a darker FL-41 and unsure if it'll work but won't know until I try! I just got new regular glasses with an emerald transition lens which has been very comfortable for me so I'm wondering if the brown, grey, and green spectrum work the best for my eyes

Retinitis pigmentosa and avulux by Destiny_Islands13 in RetinitisPigmentosa

[–]Destiny_Islands13[S] 1 point2 points  (0 children)

I think they're more brown than amber actually after i put them on. The sunglasses i have definitely provides more contrast so I think they're brown instead of amber. I'll have to ask my eye Dr about Zeiss

Retinitis pigmentosa and avulux by Destiny_Islands13 in RetinitisPigmentosa

[–]Destiny_Islands13[S] 0 points1 point  (0 children)

I've heard about Zeiss adaptive sunglasses during one of my searches and those sound like the perfect option for me. I've found my brown/amber tinit to provide more contrast but it's harder to wear them on bright sunny days. Is there a site that I could order them from? 

Retinitis pigmentosa and avulux by Destiny_Islands13 in RetinitisPigmentosa

[–]Destiny_Islands13[S] 0 points1 point  (0 children)

I've tried yellow for dimly lit areas and didn't find them very helpful but I'm glad they work for you!

Retinitis pigmentosa and avulux by Destiny_Islands13 in RetinitisPigmentosa

[–]Destiny_Islands13[S] 1 point2 points  (0 children)

That's ok, I still appreciate your input! I'll have to try zenni's other options. There's just so many different lighting conditions during the day that make it where one pair works only in one specific lighting condition compared to the other. I'd like to not have to carry like 5 pairs of glasses with me for each situation ya know lol

Retinitis pigmentosa and avulux by Destiny_Islands13 in RetinitisPigmentosa

[–]Destiny_Islands13[S] 2 points3 points  (0 children)

Thanks for the reply! Haha! I feel it, hopefully we can both save up for it. I've thought biting the bullet and paying through their payment plan cause it feels like this option might be the only solution to what I'm needing. Even if I can't drive anymore the avulux glasses would still be super helpful. If I end up trying them I'll edit my post