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