Blindness

I’ve had chronic pain for the past 18 years, and I’m finally learning how to speak up for myself and use accommodations so that my pain doesn’t have to flare every single day.

My mobility scooter was purchased a week ago. Reminder: I’m 28. 😂 So naturally, the number one thing I wanted to do was figure out how to make my scooter look a little less like it was made for an elderly person and a little more like it belongs to someone my age.

I got a stroller caddy that holds my phone, my Stanley, disinfectant wipes, extra medications, etc. I also upgraded the basket to a bigger one because when I use my scooter at work, I need it to hold my laptop—and the baskets that come with mobility scooters can barely hold a folder. 😂

Today, I already went on a less-than-quarter-mile, VERY slow walk to get my dog outside. Before the walk, my foot was at about a 7/10 pain. So, following my doctors’ instructions, I sprayed the crap out of my entire foot with lidocaine.
Mind you, the lidocaine spray only numbs my foot for maybe 10 minutes. So by the time my walk was over, I was back up to an 8/10.

I really need to go to the grocery store today to pick up some things I’m out of. I’m also visually impaired and don’t drive, so I usually walk to the store. I was thinking about trying to use my mobility scooter for the first time.

And I am SO nervous.

I know the doors at the store aren’t automatic, and I haven’t had any practice opening doors while navigating a mobility scooter. The store also ALWAYS has boxes in the aisles, so navigating around them could be challenging.

I also live alone, so I don’t have a partner who can come with me and help me figure out the challenges of using the scooter for the first time.

And, honestly, the last thing I want to mentally deal with today is someone making an unnecessary comment about how “young” I am to be using a mobility scooter.

So… any suggestions? Words of wisdom? Tips for navigating a grocery store on a mobility scooter? Or, most importantly, any witty responses you’ve used when people make comments about your age?

#MentalHealth #Anxiety #Depression #ChronicPain #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #Uveitis #Blindness #Glaucoma

In relationships, I’ve been told many times that I check off all the boxes (kind, compassionate, family-oriented, loyal, and so on). But the one box they never wanted in their life was chronic illness.

I’ve been thinking about this a lot recently. I feel like the world we live in needs to understand that literally anyone can develop a chronic illness at any point in their life.

For me, my chronic illnesses started showing up in childhood. So, in some ways, I’ve had a lot of time to learn how to cope, adapt, and figure out what life looks like for me and of course I’m still working on it.

But I don’t think people always understand that chronic illness isn’t something that only happens to certain people. Mental health conditions can appear at any point in someone’s life. Accidents happen. Injuries happen. Illnesses happen. Bodies change. Life changes. Someone can wake up one day and suddenly find themselves navigating a reality they never imagined for themselves.

Not all chronic illnesses are the same, but the emotions that come with receiving a diagnosis and knowing it’s lifelong can be surprisingly similar: grief, fear, anger, uncertainty, loneliness, and the feeling that you have somehow become a burden to the people around you.

But you are not a burden.

You and your chronic illness are not baggage.

Your chronic illness is a bouquet you get to carry every day. Sometimes we carry it gracefully. Sometimes our flowers are blooming. Sometimes they’re wilting, and we’re just trying to make it through the day.

And when they wilt, we don’t throw the bouquet away. We refresh the water. We tend to the flowers. We give ourselves the care we need and try again tomorrow.

Your chronic illness does not make you less worthy of love. It does not make you less deserving of a relationship, a career, friendships, adventures, or a beautiful life.

It is a part of your story, but it is not the entirety of who you are.

And maybe, with time, we can stop seeing chronic illness as baggage someone else has to carry and start seeing it for what it really is: a bouquet we’ve learned how to carry.

Sometimes with grace. Sometimes with both hands. Sometimes with a little help from a friend.

But we carry it.

#MentalHealth #Depression #Fibromyalgia #Lupus #Uveitis #Blindness #Glaucoma #ChronicPain #Anxiety #AnkylosingSpondylitis #Arthritis #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis

So… I operated on Thursday! But my procedure was way more complex than expected, they had to reattach the retina but also fix a tear. There was a lot of detail, they took away my vitreous humour, put a silicone oil bubble in place so it can help the attachment.
But that complexity meant I had to stay under anaesthesia for longer than expected, so they made me stay overnight just to be safe and I came home yesterday. Today morning we had a scare, looked like it had detached again, and we went to the ER, perhaps it was just a scare because my eye is swollen, very swollen, if you like anime, think of Goku after being beaten swollen, and perhaps this swelling was what caused my field of view to get blocked similarly as if a retina detachment happened. So we will be back there on Monday to check it out just to be safe, and main instructions is to keep my head lowered and use eye drops. It will be ok!

So… I still didn’t have my surgery! On Saturday they texted us to tell us it’s postponed for Thursday. At least this time we didn’t go to the hospital and did all the process for the hospitalisation just for them to come and say it’s postponed, so I give them that!

My birthday is tomorrow, which was something I was laughing about because I was expecting I’d be in post-op recovery during it. It’s a bit ironic and comedic that it got postponed to the day after it, like if they knew and decided to allow me to have and enjoy my birthday without an operated eye, so I will enjoy indeed!

As for how I’m feeling about this surgery, that isn’t close to funny, I kinda feel that the doctors disregard how this situation affects my mental health. My mum said “but that’s how human medicine works, they put each category into a certain specialty and don’t touch it”, which is kinda true, they are only considering my eye, not my person.
But it really messes with my mind, I touch my eyes and my left eye is strong and firm, while my right eye is smaller, and squishy, due to the lack of intraocular pressure. I close my left eye, and all I can see is a tiny area of my central vision that still receives light and isn’t detached. And worse is that it has changed, so the retina, even if slowly, is detaching more.
Even if I try to be rational, it’s hard to not just feel this withdrawing feeling that I need to accept that I will lose that eye. Perhaps not the physical structure itself, but the vision. And I always say I don’t care about losing my vision, and look, I usually don’t. But I had a kind of comfort when I would think that being a Retina Dystrophy, I could retain light perception, now that comfort is gone, because being a retina detachment, if detached, I wouldn’t even have light to see. And that’s honestly not cool, and not so nice. As much as blindness doesn’t scare me, not retaining the light perception messes a lot with my mind, takes away that comfort of the possibility to turn on some light if I need a certain closure.
And another thing is that my retina has a lot of scar tissue already, they will need to cut off that scar tissue in the hopes they can reattach it, but they already said it will likely detach again. For the time being, I retain my left eye’s very limited vision, but it’s hard to be optimistic, even more considering my left eye was the one we expected to have more complications as it is a longer eye because of high myopia, both have it but the left is higher, and a captured IOL from my cataracts surgeries. So in the end… I have to always observe the early signs of a detachment, but it’s very likely the left retina to also detach, and my retina is still atrophying by some condition we weren’t able to figure out yet, and it’s going towards the need for a genetic panel, that likely costs over 10k BRL.

I went to the hospital, we made all the hospitalisation steps, and I didn't get the surgery because I take a medication ozempic style. I didn't take it for two weeks but the anaestheologist said he prefers that we wait another week so there's not much risk for reflux and bronchoaspiration. So I don't risk dying.
I was frustrated and stressed out about it but later it got fine, mostly the hardships of exhaustion and autistic burnout mixing there.
Funny thing tho, the ophthalmology doctor who'll operate my eye has the name Glauco, and I can't help but find it hilarious. Anyway, next Monday I'll be leaving my house at 5:00 AM to arrive the hospital at 7:00 AM and the surgery is scheduled for 9:00 AM.
Thanks everyone for the support and prayers, unfortunately it wasn't today, but let's hope it will be alright on Monday so we get this retina reattached.

I don't hope for vision, I just hope for not feeling pain, and for not losing this eye. I like my eyes and I honestly would feel very sad if I needed to switch this eye for a prosthesis. But I don't mind the vision loss in a practical sense, I just hate all the social deficits I face because of it, but that's on society, not me, and I play my part on trying to advocate for a more inclusive and accessible world.

So after being failed so much by the healthcare system to the point I almost lost my right eye beyond repair, I am finally getting some results. No diagnosis as to why I'm losing my vision though, but the alarming situation of having a retinal detachment. And I'll be getting the surgery to try to save my right eye tomorrow and gods I'm nervous.

I absolutely hate the idea of anyone beside myself to be touching my eyes, but if there's something I don't like even more is eye pain, I'm someone with chronic pain, but eye pain is the worst. And if this detachment wasn't found out, my eye would collapse, and my retina is hanging by literally a thread on the top of my eye, the eye pressure is dangerously low, and it's scary.

I don't hope for a better sight to be restored, I honestly don't care about my vision, I already live at least 90% of my life without using vision, so it only matters for things like gaming non-accessible games. So I already told the doctors that what matters is that they save the eye so I don't have to endure eye pain.

My birthday is on the 26th and the dark humour part of that is that I will have to spend my birthday looking at the floor. Wish me luck tomorrow!

I post somewhat rarely nowadays because I am mostly too tired to do more than trying to survive the day. But life seems to have other plans, as it never fails to get me with my guard down.

So the entire backstory in this so it makes a bit more sense the reason I post so much about this subject… I’ve been born with congenital cataracts, had surgery at 3yo. My left eye has the IOL captured which means that the lens got through my pupil and is kind of transverse. And my right eye was my dominant eye, which also meant my left eye, that is already amblyopic, wasn’t used by my brain.
And another thing is that I’ve been low vision my entire life, and I didn’t know it because first I never had a reference to what normal, 20/20, vision looks like, and second because I had no contact with other visually impaired people. So I found out I am visually impaired in 2021, about 5 months before I became legally blind because of a retinal dystrophy. And since 2021 I’m trying to discover what the hell is going on.

Emotionally wise, I’d say I started feeling more grief now in 2026, I’m someone who copes a lot with humour, and also I have a lot of mental health issues that made going blind not the greatest issue to think about. But now the most emotional part is the exhaustion I feel from going to doctor after doctor and not getting a diagnosis, and I know, I tagged RP, because my biggest guess is that my retinal dystrophy is a form of RP called RP Sine Pigmento, but many doctors just dismiss my concerns, and here’s where it gets a bit absurd, because I was with this thought that they might be too proud and arrogant to not admit they don’t know what RP Sine Pigmento is, because they would claim “if it was RP, we would see it” when Sine Pigmento is a tricky form of RP that doesn’t present the traditional bone spicules, and later I found out that its main characteristic is to have the retina tissue get more and more thin, because it’s atrophying, and what the doctors would always tell me? “Your retina is just like a high myopia case, thin and stretched”, cue the facepalm.
But now I’m not thinking the doctors that saw me were incompetent because I’m angry, but because of what happened recently in this year.

In February a black stain started creeping in my FOV, and I got more floaters than usual. I asked a friend who lost her vision due to retina detachment what it looked like, because the google definition “closing curtain” made no sense to me, and I described to her what was happening and she said “go to the doctor now” and I expressed I wasn’t much comfortable on asking my grandparents to take me to the ophthalmologic ER because they are jerks to be short. And indeed they were jerks, downplayed my concerns and accused me of “messing with them” because it was about 9 PM and I asked them to get me to the ER because I thought I was having a retina detachment.

And now for the worst part: the doctor said it was fine, there was no detachment. That was in February, since then I’ve been to about 8 doctors, around 6 of them were retina specialists, and I’ve been to the ophthalmologic ER 2 more times. And everybody said it looked fine, the only of those who admitted they weren’t able to 100% tell me the issue, was a student doctor who told me he couldn’t see my entire retina due to my pupils being partially rigid. And then I exhausted my insurance coverage on my issue, and now I’m following up with the universal healthcare around here, and the first good part was me telling the general clinician ophthalmologist about my ophthalmologic history and he brought up Retinitis Pigmentosa before I even thought to suggest, and referred me to the retina department. So with all that, here’s the stupid part:

My right eye’s retina is detached, and it is an old detachment, so I’m 100% certain it was back in February. No doctor before him caught that detachment, that’s what makes me question their competence and interest even more. He will investigate what is my retina issue, I explicitly asked him, but he wants to first focus on getting that retina reattached because a retina detachment is an emergency! And so I am trying to get the pre-op tests done all of a sudden because I didn’t even get an option. I left the appointment with paperwork for the tests, because it’s not my choice if I want to have surgery, I WILL have surgery. And emotionally it doesn’t really give me any sadness or grief, just the sheer disbelief at how didn’t ANYONE in SIX MONTHS not catch a retina detachment?!

Good Lord.

I won't and can't elaborate much. I'll just say that although I'm suicidal and feeling like self harming, I won't do that so in that sense I'm safe. But today was the straw that broke the camel's back. I am in so much physical pain, so much eye pain, so much fatigue and the health system is failing me. I am so sick, I'd say, that taking a shower makes my body ache. I wish I had a shower bench but it's absurdly expensive. And I just broke. I'll end up sleeping I think, the fact I broke is making me really tired by typing that's why I'm not gonna elaborate much. And I am in so much emotional and physical pain that I'm not being able to try to eat something solid, and I only had breakfast today at like 7AM and it's almost 9PM here. So yay.

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.