Blindness

Yesterday, Monday May the 4th, I was chatting with a friend who has Retinitis Pigmentosa. Since it’s probably my condition too, still investigating that, we were talking about how RP is degenerative and he asked me “given the nature of our disease, are you ready to accept you’ll go blind” - remember I’m legally blind so there’s still a considerable amount of vision to lose - I told him there’s no way to be emotionally ready for blindness, that I can do my best to be prepared and technically speaking, I am pretty much ready to the nothingness creeping on top of my retina. But truly, I don’t know and don’t think I can figure out before it happens, the amount of emotional toll it will be for me, and sometimes I honestly try not to think about it.

I found the following satire article to be great! Their whole site is worth checking out.

Social Security Administration Introduces a Form to Request ...

Enjoy!

#Disability #Humor #Blindness #MadeMeLaugh

I want to post something that’s light compared to the last one, and just to perhaps have some fun on this kinda internal joke I have. I say “I won the gene lottery” for the worst genes!
It’s not very sad to live with it for me, perhaps because I grew up in an environment so bad I had to learn to adapt fast, which makes me going blind not suffer so much though after 5 years actively dealing with constant spurts of vision loss, I finally feel some grief.
But really if I would list… disabilities? Well, ASD and blindness are together. Very likely to have won the ADHD gene too but I didn’t get to test yet because of money and because the overall test checks for ASD, ADHD and “being Gifted” and I’m already proven to have ASD and a “Gifted Brain” so I don’t want to pay a lot of money right now just to check if ADHD is here too. Now eyes? Congenital cataracts with retinal dystrophy followed by partial ophthalmoplegia, partial lagophthalmos, nocturnal lagophthalmos, light strabism and an amblyopic eye that never worked until some weeks ago and activated because my dominant eye got to the useless bar. Also was lucky to win the myopia and astigmatism genes but those are common in society. Then there’s the very specific genes from each of my parents… heart disease and hypertension weren’t on my bingo card until I actually got to a point where I apparently earned it from my dad. Then a very aggressive gastritis from my mum, and also coming from her… loose ligaments and double joint.
Aside from my effed mental health that is more mine than anyone else’s, I basically won the gene pool. I try laughing about it because if I’d cry for all of it I’d be even more miserable, but what most of that brings me isn’t the grief really, it’s a free ticket for being constantly annoyed and tired, always in fatigue and although my patience is almost endless, I do get frustrated and annoyed by having to go doctor after doctor trying to solve my issues, adjust medications, and overall, trying to find an ophthalmologist who actually will effing listen to me on testing for Retinitis Pigmentosa Sine Pigmento because I have all the symptoms, but nothing is visible on my retina, and that’s why this kind of RP I mentioned, is called “Sine Pigmento” (If you didn’t understand the term, it’s Latin for “without pigment”)

Hi, my name is CuteKoala8175.

#MightyTogether #Migraine #RheumatoidArthritis #Blindness #Glaucoma #RareDisease #MitochondrialDisease #Gastroparesis #Fibromyalgia #MultipleSclerosis

IIH and exotropia:
Idiopathic Intracranial Hypertension (IIH) causes elevated brain pressure that can trigger sixth nerve (abducens) palsy, resulting in horizontal double vision or, in some cases, exotropia (outward eye turning). While inward turning (esotropia) is more common with this nerve palsy, IIH can lead to various ocular motor disturbances.

IIH and optic nerve atrophy:
Idiopathic Intracranial Hypertension (IIH) causes chronic, elevated pressure that leads to papilledema (optic disc swelling), which, if untreated, can cause permanent optic nerve atrophy and severe visual impairment or blindness in about 10% of patients. It primarily affects young, obese females, with symptoms including headaches, pulsatile tinnitus, and transient vision loss. Early detection, weight loss, and medication (e.g., acetazolamide) are crucial to prevent irreversible optic nerve damage.

IIH and optic chiasm narrowing:
Idiopathic Intracranial Hypertension (IIH) is characterized by elevated cerebrospinal fluid (CSF) pressure, with a strong, well-documented association with transverse sinus stenosis (narrowing of the brain's venous drainage channels). This narrowing is frequently found in 30% to 90% of IIH patients and is believed to contribute to, or be a consequence of, the elevated pressure. While often a secondary effect, this stenosis is thought to act as a "disease amplifier," playing a major role in the pathophysiology and potential treatment (e.g., via stenting) of the condition.

#IdiopathicIntracranialHypertension

Ok so… I don’t really want to avoid saying stuff in a place meant to be safe but I am tired to the bone.

It’s February 26th, that means the year had only 57 days so far, and it’s effing crazy! I do something, I think I can stop and breathe then no, the gods hate me and throw something new at me.
My retina is dying, I’m exhausted, I’m depressed. I just can’t take having so much medical appointments and phone calls to do, and yet I have to do them. Trying to get as much as I can through WhatsApp from the clinics I attend, but some are only phone or basically having to go in person. And I have some points to make about this ordeal.

Also, accessibility is being ignored basically, and I’m not like in the USA where they’re actively harming ADA and DEI, I’m in effing Brazil but due to a lot of international relations stuff to be done, if you don’t know Brazil is basically on the leadership of the movement for the independence of the World’s South. But then the things I and many other citizenships have to face daily are basically abandoned, and it’s even more crappy when it comes to my State, that is with a disgusting governor that is basically screwing all the progress we had from education to social morals so far. It’s just exhausting. And this year are presidential elections over here so yay, let’s have another fierce fight against extreme right facists, anyway,

I think I finally can with more agency understand my mum, because when I was a baby and she discovered I had congenital cataracts, absolutely nobody was there to support her, she was my age with a me baby, going everywhere just to get me to have surgery and be able to live a sighted life. And now I’m basically facing the same, with the exception that I have some support from, you guessed, my mum. But she can only go so far as to help financially mostly because I’m an adult, so I have to make the phone calls, look for resources, adapt my day-to-day life and basically deal with it and kind of suck it up. Because acconrding with my grandma I have no motive to cry, when I was crying out of despair because I’m getting blind and I held composure for too much time and I just broke when I was home.

Is anyone actively invested on my life? Well, only the surface stuff and expectations I’ve always had to deal with. Be the perfect student, be the perfect adult, study my ass off to be able to get a job, etc. my grandma can’t even grasp that I’m only in university because of the effing paper/degree, because it teaches me nothing actually useful, everything I have to learn I have to do it by myself, and she can’t understand it, and look, she’s not an old senile stereotyped grandma, she’s tough as a rock and stubborn as a mule. If I’m at an external course, she always asks if it’s with uni, and when I say no for the hundredth of time she asks “what about uni?” And I’m like “I don’t give an eff about uni, I only do what’s required, get a good grade and forget about it for the rest of the semester” .

Anyway again.

I’m so frustrated honestly, not only because my blindness, my difficulty with being autistic in a society that’s not empathetic. But basically society in general! I’ve been to a wonderful place in January and met wonderful people, when it was over i came back to real world, and it sucks! People have no empathy, people disguise empathy on fundraisers for public image, and I was able to see it behind the curtains. People have no interest on important stuff, people are basically choosing ignorance and that make them stupid. People have no more critical thinking. And that’s frustrating. For me the world feels like having to play dull because rarely will I find someone I can have a conversation on topics I’m more interested in, and a very ungrateful place to be in, because I invest emotionally on people just for them to not be reciprocal and it’s not a “oh my date turned me down”, it’s basically being the one reaching out to no avail, or being reached out by others only when they need my help.

I am tired.