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Blind and Visually Impaired Community

Full History - 2019 - 01 - 30 - ID#alf6p1
16
Yesterday I was registered severly sight impaired without a diagnosis. (self.Blind)
submitted by Disney-Roo
I feel so relieved that I have actually been acknowledged, listened too. But it's all very anticlimactic as there is still no diagnosis for my sight loss. I've been hit with this depression that yes, this is really me now. I have this guilt and pressure to still be the person I was before my sight loss. To be the mum I was. And I have family calling me a liar and that I'm just milking the system.
No one understands how I feel, no one understands that yes I may use my phone but no I can't see the floor.
Instant my guide dog training on Monday and have even been met with negativity towards that from the same family members. I'm putting on this brave face, I lost my sight march 2018 and then more severely September 2018 and I've not once broke down, crumbled, complained. I've been laughed at and mocked by consultants and still just try and power through, and now I've been strong for so long I feel like I'm not entitled to that breakdown.
Sorry for rambling there really isn't a purpose to this post I just needed to talk to someone, anyone who may understand or even know what to say to people. Unfortunately those family members are my husbands direct family.
angelcake 6 points 4y ago
Sometimes a diagnosis is more of a challenge. My partner has been losing his vision for over 20 years [it started in his 30s] and it looks like glaucoma but it’s not. His optic nerve is basically disintegrating and he’s losing the same cells the glaucoma suffers do but the treatment for glaucoma barely slows it down. He’s actually had surgery to lower his IO pressure because the drops were no longer working.

So sorry you’re going through this and I know it’s not terribly helpful but we are fortunate to live in a time where assistive technology for low vision and blind people is a lot better than it was 20 years ago. There are a lot of good posts in this forum that may be useful to you going forward
PractisingPoetry 4 points 4y ago
Its worth noting that the medicine for glaucoma doesn't work at all for some subset of glaucoma patients.
Disney-Roo [OP] 1 points 4y ago
Yes I've found in the small 5 months I've had to rely on help, technology has been huge for me, I have however also received abuse for using my phone and my symbol cane. The ignorance of people can be so damaging.

I hope your husband finds answers too.
AlliCRD34 5 points 4y ago
I also have CRD. I'm waiting for my genetic test to find out which type. I'm also a mom. People have also treated me badly. Brushed me off like glasses will fix it. Personally, I find ways to keep my independence. My kids and husband are my everything. I do all I can still and find new ways to learn. I go through the grieving process for everything I lose as I lose it, and move on. I don't live in that depression or it'll consume me. I've lost a lot of friends and family. People are either uncomfortable or they're jerks. I have learned that the people who genuinely care and want to stay will stay. I'm sorry that you're going through this. It's not fair and it's not easy.
Disney-Roo [OP] 3 points 4y ago
CRD? Sorry I'm still so new to all this.
And yes my sister in law is diabetic and has understood a lot of my challenges especially with family and friends, she's been told what she can and can't eat etc and I'm being told what I can and can't do, all from people who know nothing about either disability.

I just feel this need to prove people wrong, and I'm struggling to let it go. I have this one friend, I've only known her since December but instead of challenging everything i say, she's instead asking questions and doing research herself, she's shone a light against the others who fall short and make me feel uncomfortable to be myself.
ratadeacero 3 points 4y ago
My wife started losing her vision at 30. The first thing to go was color. Greens looked purple and her vision slowly started worsening. Some of her friends suggested she needed a psychiatrist. The vision doctors eventually acknowledged her vision was getting worse but couldn't come up with a reason. Eventually, a specialist found that it was a genetic condition called Progressive Cone Dystrophy. I read your post to my wife and she says that's how it happened with her. No one believed her.
.
If they can't find any reason for your vision loss, look at this as a possibility.

https://rarediseases.org/rare-diseases/cone-dystrophy/
OutWestTexas 5 points 4y ago
Have the same thing as your wife, no one believed me for years.
ratadeacero 3 points 4y ago
It took forever to diagnose.
Disney-Roo [OP] 1 points 4y ago
"During an ERG, eye drops are used to numb the eye before placing a special contact lens-electrode on the eye. The patient then watches a set of flashing lights in order to stimulate the retina. Doctors can then measure the electrical signals made by the cone and rod cells. A weak or absent signal of cone cells indicates cone dystrophy. An ERG test is performed twice – once in a bright room and once in a dark room. The test can determine whether cone and rod cells are functioning properly."


I've had this... came back normal.
ratadeacero 1 points 4y ago
Well, it's one more thing eliminated. : )
Disney-Roo [OP] 1 points 4y ago
Thank you I will do.

So far they've done ct scans, mri scans, lumbar punctures, temple biopsy, a million blood tests, an electrode test of the eyes, a million visual fields too. They believe there's nothing else to try. Xxx
GinAndBitterLemon 2 points 4y ago
Your family are arseholes. They should be there to support you and not berate you. Do you have supportive friends?
Disney-Roo [OP] 2 points 4y ago
I have one supportive friend, she's only been a friend since December but instead of challenging everything i say she's asking the right questions and doing research to help me.
rose_moons 1 points 4y ago
I’m soo sorry you’ve been treated this way, I hope your family comes to realise that you aren’t milking anything and I am here if you want to message me! ❤️
estj317 1 points 4y ago
Just know that you can rise above your challenges, overcome your blindness. A lot of people just consider me another person. Not a blind person. Sometimes people forget that I am blind because I don’t act blind. And it’s like oh right. And we both laugh a little. I’ve never had much vision, I lost it all when I was eight years old. I’ve accomplished quite a bit in my life. I am quite well known in my community, steped up to leadership a handful of times. Represented a time or too. My accomplishments are quite numerous.I am not saying this to brag but saying this to say so what? I am blind. So what? You are blind. So who’s to say you can’t? Who’s to stop you? Being blind isn’t the end of the world. It isn’t goodbye. It isn’t you can’t do anything anymore. For a lot of things there is an adaptation. If there is a will there is a way.. You can still be the awesome mum you’ve always been. I hang out in the non-blind communities more and no one would no the difference if I didn’t carry around a cane and couldn’t actually see things..

If you have determination and the resilience to find the truth and to keep going to keep finding a road forward it is absolutely possible. If I can do it why can’t you?

Ask questions, I am absolutely a open book. Get some independent living training. Get some blind job training and tech training and there you go no different then you were, maybe more awesome than you ever were. I suggest you try to be very pragmatic at this.
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