Glaucoma

Hi, my name is CuteKoala8175.

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

I’m in my second week of attending daily 30-minute meditation classes, and I already feel like I’ve learned so much. One major theme my class has been focusing on is “surrender.” To surrender is to let go of the ego and allow yourself to be fully present with the moment as it is.

I keep returning to the question: What does it mean for me to surrender?

When I experience a neurocardiogenic syncope episode, surrendering means accepting and acknowledging what’s happening, without letting it define me.

When I go to a routine eye appointment for pressure checks, surrendering means trusting that I’m doing my part: taking my medication, using my eye drops, and allowing my medical providers to make the best decisions for my care.
I could go on and on.

Surrendering is hard. Our ego loves to get in the way. But for the first time, I truly feel like I’m re-wiring my brain.
#MentalHealth #Anxiety #Glaucoma #Uveitis #Blindness #NeurocardiogenicSyncope #HypothyroidismUnderactiveThyroidDisease

This morning was filled with anxiety. I had an eye doctor appointment and I always have bad anxiety because of a traumatic experience I had 5 years ago. So I usually go to my appointments with a family member to help distract me. Butttt today I had to go alone and take an Uber to and from the appointment.

On the car ride to the appointment I was on the verge of an anxiety attack. My mind kept racing, heart was racing, and I started sweating like a pig. But I recognized what was happening. I practiced my breathing techniques and pinched my fingers as I counted and got back to feeling calm.

Did I have to work on breathing the whole appt? Yes. But I did it. And I did it by myself. I just need to keep putting one foot in front of the other
#Blindness #Glaucoma #MentalHealth #Anxiety

General health appointments: 5

Specialist appointments: 12 (rhuemotology, ophthalmology, podiatry, endocrinology)

Allergy: 20 appointments, 76 allergy shots

Infusion: 13 appointments, 32.5 hours sitting in the infusion center

Imaging/testing (not labs): 2 MRIs, 2 1-week long heart monitors, 1 stress test, 1 tilt table test, 1 heart ultrasound

Mobility aids: 2 mobility aids added to my daily routine

- - - - -

Pre syncope episodes: 3

Vertigo episodes: 5

Anxiety Attacks: 2

I’m proud of myself for speaking up to my doctors about a symptom I’ve experienced my whole life but no one has ever looked into. I’m proud of all the ground techniques I’ve learned this year. I’m happy I found 2 apps that help me with mental health and health record keeping. I’m also very proud of my mom who started her chronic health journey with Parkinson’s this year. She is going to speech classes and sharing information with us (family). Her new diagnosis is frustrating and exhausting but she’s learning and still doing things she loves. 2026, please be gentle to us.

#Uveitis #Glaucoma #ParkinsonsDisease #MentalHealth #Anxiety #ChronicPain #Presyncope #NeurocardiogenicSyncope #AutoimmuneDiseases

Have you ever expressed you’re a level 2 support autistic person and people would invalidate you because “you came to this appointment by yourself”?

People think of autistic people as two sides of a coin, like it’s black and white, but the “scientific” name already says ‘spectrum’. And that spectrum isn’t only on some classic functional tasks, not only that, but autism usually comes with other comorbidities, like me who has a personality disorder, probably undiagnosed ADHD, and many body structural differences that might be related, such as dispraxia. And my luck is just right for me to also be born with congenital cataracts, an eye disease that also loves to come with something else, such as glaucoma (not my case) or in my case, retinal dystrophy, that might be retinitis pigmentosa, I still don’t know which type of dystrophy I have.

So even trying to put autism into three categories, you still have a whole spectrum on each, the only way I see that makes this classification possible is the wording:
1. Support Needs
2. Substantial Support Needs
3, Constant Substantial Support Needs

This wording makes it vague enough to make a classification possible, and due to people viewing autism as black and white, the support needs level 2 ends up being the one people often forget, invalidate and misunderstand.

I’m a type of person who’ve been through forced independence, I started catching busses by myself at 10 when I started going to school by bus after having gone through very aggressive bullying on the school van that would get me to school. Autism wasn’t so spoken about, much less autism on females assigned people, so I had to learn a lot of social cues, communication, non-verbal communication skills (tho I’m still terrible at them), social norms, expressiveness and knowing how to pick my words when talking. It’s exhausting, I suffer from autistic burnout for years, and one of the causes is the constant task of knowing how to articulate my needs, or bend myself to be flexible, despite having cognitive rigidity, because others wouldn’t do it, even being neurotypicals. So at first glance people can’t realise I’m on the level 2 category, because my adapting skills are very sharp and I adapt fast to new situations. That’s why I pointed this to blindness, because I got blind, and I adapted. I had no one to teach me how to use a cane so I taught myself. I’m still waiting for the daily activities rehab part from the blind foundation but I just can’t stop my life to sit and wait. I want to learn how to make my own make up, and I basically started making my own make up already, I need to learn the techniques for that, but while I wait, I just do my best to be able to do something.

I might not show so much support needs on socialising, learning communication skills and articulation, because I adapted. But if I get to a meltdown, there’s nothing that will make myself snap out of it, I need intervention from people to help me and avoid that I put myself at risk. Usually after a meltdown I have a shutdown too, so I just fall asleep without much control over it.
To catch the tube by myself I need to listen to music so I keep calm, and nowadays there’s a musical I listen to absolutely every time I need to go out, that helps me self regulate. I stim a lot and often get censored by people close to me, and I have to remind them that I need to make constant and repetitive movements when I’m overwhelmed. But this is not where it ends.
When it comes to my body, I don’t know when I need to pee unless I’m urgently needing it, so UTIs are basically my daily companions. I can’t feel satisfied after eating, so sometimes I need someone to give me a hint that I’m not eating in a healthy way. I don’t like most of the stuff that can make you gain weight but I’m obese because other factors. I have insanely high tolerance to pain, I might break a bone, and it happened before, and not know it, because well it might hurt but it’s too little to actually give me some concern. At the same time I am extremely sensible to my internal organs, so I know EXACTLY where I feel what I feel. If I feel chest pain I won’t jump to conclusions that I might be having a heart attack because I know if it’s a pain on the boobs, the lungs, the heart, the esophagus, etc. it even got me confused lately because I’m feeling a pain on a place I don’t know which organ could even be there to ache, other than my intestines, but the pain doesn’t give the vibe of intestinal cramps. So all that already show how much substantial support I need just for functioning a bit. But I also need support when it comes to daily tasks.

I hashed depression in here too because of this. Me getting depressed makes me not take care of my house and myself, and I do have very severe depression, that can be very crippling sometimes. And also have to deal with PDA. So trying to humiliate me, or repeat many times to me that my house needs cleaning actually makes me not clean it. My mum had to find the right words and empathy to make me start reacting and taking care of myself and everything. But I still need this support. Sometimes if I try giving myself rules, I don’t really follow them, I just feel frustrated when I do something out of the pattern I usually follow and then the repercussion is that I don’t know where I left something. And this is why I hashed blindness too. Because being blind means I have to be even more strict with organising routines so I know where everything is, and can find it later. But without clear instructions of what I have to do… I just don’t know how to. Yes I adapt, yes I try my best, yes I do without waiting, but I’m still not able to find directions without someone to direct me. It might sound silly, but my support needs actually makes me need direction from a third person. So I want so bad to get to the daily activities habilitation so I can learn how to organise stuff properly.

This is a bit frustrating for me to express, because I don’t want to use my depression, autism or blindness as crutches to justify a messy house. But I know that I need someone to direct me on some tasks, or I just can’t do it myself. And I wish people could understand how that is a need, and not me talking BS. Even if it’s not a classic need from a person with substantial support needs, it still is my need, just like there are people with ASD that can’t cross a street by themselves. It’s a need, and instead of invalidation and ableism, the world would be better if only everyone’s needs would be respected.

Hi, my name is WickettsMom.

#MightyTogether #Glaucoma

Hi, my name is PinkPachederm. I'm here because I have several autoimmune issues: Reynards, Sjogrens, Fibromyalgia, CAD, Arthritis, Migraines, Chronic Fatigue - as we know is a symptom of all the aforementioned diseases. Then for some extra fun I have Neuropathy in my hands & feet, carpal tunnel in both hands, something else in my thumbs - can't remember the name, and Glaucoma. High blood pressure, though not too bad, is kept under control, as is cholesterol. I am in constant pain somewhere in my body every day if not all over. I can tell when the weather will change by my barometric migraines which are as bad as regular migraines. The regimen of daily pills & healthy diet can sometimes get frustrating when a flare up occurs & the meds for it just put me to sleep. I detest having to cancel plans due to a flare up or migraine so severe I can not function.
So, I am here to see if there really are like pained people. Sometimes I think I am going crazy with all this pain & all these issues. Is there anyone else experiencing all of this???

#MightyTogether #Migraine #Fibromyalgia

Two things: From about 1999-2015, I experienced 2-4 debilitating migraines a week. Stress was rampant in my life then: a hateful ex, money issues, workplace animosity, kids, and, and..and... You get the picture. Life did settle down, stressor went away and so did migraines.

Fast forward to present day and the stressors have gone back up: more money issues, caregiver stress, house projects, PTSD triggers, and more. Since fall,I've been having what I call regular headaches--tylenol would keep them at bay. Well, this week, I developed intense eye pressure, visual disturbances, nausea, and headache that woke me up. So the optometrist tells me that it's not glaucoma or anything 'major'. It's dry eye, and it was feeding the headache, which made the dry eye worse, which fed the headache. Interesting part is that the form of my migraine changed, which is why I didn't recognize it as such.

Questions:
1. Has anyone ever had a break from migraine and then had them resume?
2. Has the form/type of your migraine ever changed?

I was told I suck, I’m lazy, and oh yea the gluten free food I can eat is terrible. You might be asking, “Why would someone say this?”. Because I had to cancel dinner plans due to a flareup. I guess I need to date a few frogs before I meet Prince Charming but man, can the next frog be a little nicer?

I tend to open up about my health early because I’m always nervous I will have a flareup, I’ll need to cancel, and they won’t understand. Welp even if you tell someone, they still might not listen/understand and resort to calling you names.

Anyone have similar experiences? I feel like I need to write a book at this point, “Dating stories: Chronic Illness Edition”.
#Arthritis #ChronicPain #Uveitis #Glaucoma #HypothyroidismUnderactiveThyroidDisease

Hi, my name is wanderingdeer. I'm here because

#MightyTogether #Glaucoma #Depression