u/IndustryFar3816

Hi everyone . So people with posterior and pan uveitis with secondary complications such as macular and retinal edema . You probably have this symptom called as metamorphopsia I.e everything appears slightly wavy and bent, text appear bent and crooked , also faces are squeezed . How do you cope up with distorted vision or does it get better with the swelling reduction. Are there any ways to correct or maybe remove the distortion using any advanced optics . I have retinal vasculitis which have caused macular edema but I got only one shot which significantly reduced the distortion which I got at may 19 then the effect wore off it seems later I got edema again at end of June. Now it's just prednisolone up and down game . Also prescribed drops such as timolol to lower ocular hypertension , nepafenac to reduce pain and swelling, lubrication. Got only one injection so far , doctor said we could go for injection but let us 1st first see if vasculitis suppress with oral steroids itself but it doesn't do the job as it get tapered down even with 20 mg diff . So ig it's forever up and down game or else getting monthly injections . Main problem for me is metamorphopsia / distorted vision . I don't know how to cope with it . Also it causes straining in eyes and nauseating too. Thank you !

Looking forward to join if there is a group for uveitis people in instagram .

So hi I'm also a chronic illness sufferer but not pancreatitis . So I have recently met a friend who is suffering from chronic pancreatitis . So how can I help them ?

Today while scrolling through my gc chats , I read a message there was this word "oct" instead of October i read it as "O-C-T" 😂. LIFE with uveitis lol .

So Hello hope yall doing fine . Each of us here have different diagnosis, different types of vision loss and variable flare ups. I just want to hear about how your life is going on now , as some of us could have lost some vision how did you overcome that and doing your job. Rant your stories here only if you don't mind. Thank you.

Looking out for uveitis diagnosed friends and to share our treatment regimen details.

I'm gonna kms if that happens , I'm mostly blind due to severe metamorphopsia from macular damage in my affect eye . I can't live a normal life these days , since my vasculitis is occlusive in nature the vision went too downhill . I'm totally dependent on my unaffected eye. I'm gonna perform su*cide if vasculitis affects my remaining vision. I'm fcked up . Life is unfair . Fk this disease .

Hi people ,good evening to yall .Just wanna connect with people who have become monocular due to uveitis . Also there are some doubts regarding uveitis . I'm functionally monocular due to uveitic complications and metamorphopsia.

Hi I'm with posterior uveitis. My life turned upside down my career ruined my body got damaged with medications . I feel victimized and unfair. Nobody understands me not even my parents how I feel . I feel I'm fked up and it's not my fault for this unfair life . I don't wanna put myself off but how to compensate this feeling of unfairness that happening to us . All people surrounding says just eat well and good you will get healed but less they know about what disease I'm having they don't what is flare up they don't what is remission. I feel like I'm a eagle but with no wings . What is the purpose of my life . This got me acting rude to people I'm close with . Sorry for venting here .

I'm feeling totally different. Maybe if become monocular from birth I would have easily adapted. But thanks to some unknown reaction that happened out of blue it tanked my one eye. Since i was a coder but I worked with good binocular vision before . Now it's is fkedup. So I'm functionally monocular now . So my main question is those who have become monocular in the age of 10 or above how hard did you find life to live . Did you find difficulty other than depth perception ofc and driving ?.

Yea same as title , any gender any location any age .

Hello guys hope everyone is doing great. So ye this post is about eyepatch. I have been using a eyepatch but the patch is made up of cloth type so it just brushes over the skin and get wet overtime . So it kinda rises some smell too. Is there any good eyepatch available online and affordable too. I'm from India anything under 1000.Rs feels fine for me. I checked on adhesive but idk if it will help for long usage. Thank you!

Same as title . But how yall managing sleeplessness , its very overwhelming when I'm already suffering from this eternal flare ups top of that I got add-on problems by using steroids . Damn ig we are born to suffer. Hate this life thank you [3:22 A.M yea couldn't sleep fr , also dropped off from uni , funny thing is I am the best student in class huh ig it's all fate can't do anything , I'm jus nothing now ok that's the rant thank yall]

So hi guys i(19 m) due to recent unfortunate times lost my functional vision in left eye. So I just withdrew from working on laptop. Now after long days I decided to give a shot for it. Unfortunately I had neck pain and head ache . Is it normal to have this difficulty at 1st ? Will this sustain forever 😞 as i mostly gonna rely on laptop in future this scares me . Having the headache writing this too 🥀. Any tips will be helpful . Thank you folks !!!

So guys hi , I'm 19 m having retinal blood vessel inflammation problem . So basically life doesn't feel like living it all feel like a survival run on prednisolone pills. The problem seems aggressive and hasn't been improved with pred and doctors have said to come after 1 month and seems to change the treatment if I don't respond well. How do you live a normal life with this problem , also unfortunately my best corrected visual acuity in the affected eye is 6/24 with metamorphopsia (distorted/warped vision) so i basically can't use the affected to read if I try I will end up with headache so I'm jus surviving and crippling in fear about my other eye. It all happened unexpectedly and I didn't know that I will be worrying about eyesight ever in my life it is 2:47 am now Here in India. So how do I live a normal life without trembling about the flare ups I'm so grateful for the vision I'm left with but equivalently I also concern about my other eye which actually helps me on everyday task now else I'm actually done for.i was studying in uni but I'd taken a drop year suggestively to treat my vision first which I don't have bit of confidence that it will improve . How do you live a normal life having a sense lesser than others ? How to escape this reality ? . I have came across many post where many of our guys has this 5+ years damn this problem is so so concerning. I couldn't sleep nowadays I have a possibility of losing my quality of life which actually occured to an extent also fear I might actually lose total ability to read , I need this ability cause I have to graduate yet and I can't adapt to screen readers like software. so far through this journey I'm mentally f*cked up . and I'm the class topper , so I feel like I'm nerfed in a very brutal way . This is such a mess even though there are lot of support there doesn't seem to an escape ,sometimes don't feel like it and wanna end it all. so yea wad living a greater life doing coding building projects , watching series but nowadays simply lost interest in doing so , I'm unable accept this life mainly due to my age and what I'm currently doing. If this problem had a bit later in my life like some 50 or 60 I wouldn't even complain about it. people of my age enjoy their lives while I wait on opd for my doc visit. I feel this downhill of my life is so so personal I simply don't wanna live anymore but I won't end myself yet this life seem is top absurd. so that's all about the vent. sorry for posting frequently. thank you