Post AAd7fRcMJFf6BPSKxM by asparagi@hax0rbana.social
(DIR) More posts by asparagi@hax0rbana.social
(DIR) Post #AAd7fDSyvJqIIGxeOe by asparagi@hax0rbana.social
2021-08-23T14:03:34Z
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I'm gradually going #Blind, with some expected pauses here in #LowVision.I haven't talked about it much, publicly anyway. Like most of anyone's life, it's nobody's business but mine. But, today I spent a few hours searching for information on what to expect during this process, and didn't find much. So, I thought I'd write my experience up as it happens, for the next person who needs it.(pinned thread)
(DIR) Post #AAd7fE2QnWCO4DXxeS by asparagi@hax0rbana.social
2021-08-23T14:35:58Z
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For comparison purposes, I was diagnosed with #LowPressure #OpenAngle #Glaucoma in my early thirties, over a decade ago. This was early in the progression of the disease, and I have followed my treatment plan better than average according to my doctors.
(DIR) Post #AAd7fEa6mJ8ZkfIr8y by asparagi@hax0rbana.social
2021-08-23T14:36:26Z
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If you have just received a diagnosis of #Glaucoma and are freaking out, know that these days, most people with glaucoma do not go #Blind, especially if they caught it early and you follow your treatment plan consistently. You can find information on the relevant statistics, the available treatments, et cetera, by searching online, reading books by glaucoma specialists, and asking your doctors.
(DIR) Post #AAd7fF6MqMwRMiOcQS by asparagi@hax0rbana.social
2021-08-23T15:02:16Z
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Regardless of your diagnosis and prognosis, know that #LowVision, #VisionLoss, and going #Blind, are challenging sometimes, but also OK. This is a normal life transition that some people go through. I can do it. You can do it. Hang in there.And, if you're reading this because someone you know is losing their sight: Your friend is still the same person. They didn't suddenly turn into your project or become pitiful, and they don't suddenly exist to inspire you or anyone else.
(DIR) Post #AAd7fGWHZVGVlNWpSS by asparagi@hax0rbana.social
2021-08-23T15:32:42Z
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Here is a 2014 study about how #Glaucoma patients describe their #VisionLoss. Unfortunately, this was the only copy I could find, and the actual data seems to be in screenshots of tables, with the rightmost column or two truncated.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4206382/
(DIR) Post #AAd7fHz285rEIpzIuW by asparagi@hax0rbana.social
2021-08-23T15:43:36Z
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Even with the same diagnosis, you may experience different #VisionLoss from others.The study in my previous toot says most people with #Glaucoma want more light, but I became more and more #LightSensitive, to the point of wearing sunglasses indoors, turning the brightness of all my screens down to the minimum possible value (which was still far too bright on iOS devices), and getting additional darker coatings on my glasses. Post #XenGelStents about 6 months ago, this trend may be reversing.
(DIR) Post #AAd7fJtR1sZGE3NrSi by asparagi@hax0rbana.social
2021-08-23T16:00:38Z
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Subjective #VisionLoss can be very different from what shows up in a doctor's office.For example, my brain seamlessly fills in what it thinks is in my missing vision. I sold my van and stopped driving during the day after I realized that my left side mirror showed me what was to my left rear *the last time I looked at the mirror with my central vision*. Fortunately other drivers avoided the accidents I almost caused during the few weeks it took me to figure this out.
(DIR) Post #AAd7fLr1jnpWJAGxzE by asparagi@hax0rbana.social
2021-08-23T16:10:12Z
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I was still willing to drive at night for about a decade after I stopped #Driving during the day, because car headlights effectively extend the length of the vehicle. Some light always reached my working vision, and my brain filled in a car instead of empty roadway.More recently, I've had enough trouble seeing as a pedestrian that I let my drivers' license lapse entirely.#VisionLoss #Glaucoma
(DIR) Post #AAd7fOoIkOQrTa1Kee by asparagi@hax0rbana.social
2021-08-23T16:25:29Z
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A particularly frustrating experience I suspect happens to many people with degenerative #VisionLoss is when a doctor says your vision is 20/20, or is otherwise pleased with your medical condition, but in practice, you cannot see well enough to accomplish your daily activities, at least the way you are used to doing them.Keeping notes on how specific vision defects affect specific activities, and insisting the doctor comment on the practical issues you encounter, may improve your treatment.
(DIR) Post #AAd7fRcMJFf6BPSKxM by asparagi@hax0rbana.social
2021-08-23T16:38:18Z
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But, in the end, when you are going through #VisionLoss, doctors are not going to help you adapt to the vision problems they cannot correct.Sometimes they will even push medical solutions that can have negative practical impact for you. They may not mention or even realize this because they are so focused on the medical outcomes that they had just as much trouble hearing past patients' practical feedback as they do hearing yours.
(DIR) Post #AAd7fV1ddifKkgJ4HA by asparagi@hax0rbana.social
2021-08-23T17:10:26Z
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When you read my #VisionLoss experience, realize that I have a lot of healthcare #Privilege, and this is not my first (or second) #ChronicHealth condition. Yet I had to level up my skills to get satisfactory healthcare from my providers.I have good insurance. I am white, middle-aged, and historically middle class. I can (and at eye doctors' offices, usually choose to) pass as a "respectable", able-bodied, "fit", cis het white woman.If you don't have these privileges, I see you.