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So… It went kinda fine? #Blindness #RetinitisPigmentosa #MentalHealth #ChronicFatigue
So I went to that doctor’s appointment, most of the process was very ok-ish. I was trying to get myself ready for as many barriers as I could think for yesterday.
Because it was Saturday, I did have to expend with an uber in my way there, because the bus would be too late and I wouldn’t be able to get to my appointment. Busses here are already horrible and on Saturday they make the fleet even more reduced… so I got the Uber there, and talking to the receptionist she checked where in that hospital would be my appointment, so it was across the street, it’s an ophthalmology hospital and had more than one address. Arriving on the other reception, it was a bit uncomfortable with that receptionist, she didn’t seem to be the most patient of people, and she told me where to go without considering that a. I never even went there and b. I am blind. But I told her I needed help and she asked one of the people going into the lift to help me.
The receptionist from the floor I would have my appointment was a sweet heart, she asked me how much I can see and then asked the nurses that would make the triage to help me, they did, they were amazing. And they helped me to the doctor’s office.
So the appointment itself was something that almost got me a nervous meltdown there, because he asked my reason to be there and I told him that my ophthalmologic history was very extensive and he asked me to summarise it, and here is where it got me into this happy-nervous state. After I gave most of my summary on my ophthalmologic history, he asked me “have anyone ever told you about retinitis pigmentosa?” and that was enough, I started semi laughing and venting to him that that’s what I also suspect to be, that no doctor really wanted to investigate and that I’ve been dismissed with the claim that “it would be seeable” even if I asked “what about Sine Pigmento?” which is a form of RP that doesn’t present with the traditional bone spicules, so it’s not really seeable.
The doctor examined me, got how much I can see, asked about peripheral and I said that I have no peripheral vision at all - which is another characteristic of RP that nobody cared to notice so far - and looked at my eyes through that annoying machine with a light, but didn’t dilate my pupils which is fine considering it was first appointment and I wasn’t there for a glasses prescription.
He told me he would refer me to the retina department, told me that it’s a delicate matter, so even if we get a diagnosis, the prognosis might not me good, to which I responded with “I don’t care about a cure or a treatment, the only thing I want is to have the peace of having a name and know what am I expecting to happen”, and he asked the nurse to see with the reception if it was possible to mark the appointment with that department.
I thanked him, and good news is that we already have a date for the retina appointment to august 4th, for those who don’t use or have an universal healthcare, getting fast appointments through the system usually takes a lot of time and bureaucracy, so just having an appointment date makes it like, turbo fast. And I finally am able to have at least some amount of hope that I can get a name for my condition, and be able to live my life knowing what to expect. Because I know I will go functionally blind, and that perhaps my only remain will be light and shadow, but I want to know how much to expect and how to recognise my symptoms. Again, I don’t care about a cure or a treatment, I already live my life as a legally blind person, and before getting legally blind, I was low vision, so I don’t know what a 20/20 vision looks like.
But I’m really glad I now have some hope.
Also there’s an irony behind all this, yesterday at night I discovered that one of the Sine Pigmento characteristics that can be used for diagnosis, is the thinning of the retina tissue, and all those doctors who told me they would be able to see even if it was sine pigmento, pointed out to me that my retina looks just like a high myopia case, it’s very thin and stretched. Which means… they have seen that detail all along and still decided to dismiss it. Great.
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