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Difficult to Deal with my Condition and Lack of Help any longer (self.Blind)
submitted by Faded_Night
I really don't mean to rant to you guys whenever I come here, but my mental and emotional health is really plummeting from all of this.
So lately the hospital I go to has said that they gave me an incorrect diagnosis and that I don't actually have AMN. They have no idea what I have after passing me from pillar to post for a year. To explain my vision, I recently came across images of what vision with macular holes is like and mine matches that except the spots aren't black but kind of a white/grey blind spot (apparently my macular is very healthy).
I'm going to have tests done on my retina and an MRI but the doctors are denying all impact this condition has on my day to day life and denies that I get migraines or headaches. They even said I shouldn't be using a guide cane so I stopped using mine even though I'm now crashing into things and get stressed when I go out walking. College is extremely hard because of my headaches and difficulty reading (my vision isn't bad but it's looking at things around the blind spots that tires me). I'm actually considering dropping out when I'm so close to the end (final semester ever) because of all the deadlines I have coming up and essays I need to do that I just can't. Dropping out seems better to me than failing, and I don't think I even want to use my degree.
It's hard to focus on college work anyway because not only is it difficult to work, I have extreme anxiety for what comes after. The hospital refuse to put me on blind pension or disability allowance (I'm in Ireland) and insist that I can drive! I've never attempted this because my peripherals suck and I'm missing a huge chunk of the world, but as they're not providing a travel pass it or anything of the like, getting myself around has been so expensive. As well as this getting a job has been near impossible. I'm constantly feeling great anxiety and I don't want a hospital to drive me to depression, but they seem to be doing a good job of it. I've complained and the same problems have continued.
I don't really know what I'm looking for in the comments. Maybe how you guys manage/if you think such high stress level environments are worth it at the end of the day. I've been treated as if I'm simply overreacting for ages and it makes me feel horrible, as if I'm just lazy and looking for a free ride. I don't feel as if the hospital can help me and I'm scared for the future.
So lately the hospital I go to has said that they gave me an incorrect diagnosis and that I don't actually have AMN. They have no idea what I have after passing me from pillar to post for a year. To explain my vision, I recently came across images of what vision with macular holes is like and mine matches that except the spots aren't black but kind of a white/grey blind spot (apparently my macular is very healthy).
I'm going to have tests done on my retina and an MRI but the doctors are denying all impact this condition has on my day to day life and denies that I get migraines or headaches. They even said I shouldn't be using a guide cane so I stopped using mine even though I'm now crashing into things and get stressed when I go out walking. College is extremely hard because of my headaches and difficulty reading (my vision isn't bad but it's looking at things around the blind spots that tires me). I'm actually considering dropping out when I'm so close to the end (final semester ever) because of all the deadlines I have coming up and essays I need to do that I just can't. Dropping out seems better to me than failing, and I don't think I even want to use my degree.
It's hard to focus on college work anyway because not only is it difficult to work, I have extreme anxiety for what comes after. The hospital refuse to put me on blind pension or disability allowance (I'm in Ireland) and insist that I can drive! I've never attempted this because my peripherals suck and I'm missing a huge chunk of the world, but as they're not providing a travel pass it or anything of the like, getting myself around has been so expensive. As well as this getting a job has been near impossible. I'm constantly feeling great anxiety and I don't want a hospital to drive me to depression, but they seem to be doing a good job of it. I've complained and the same problems have continued.
I don't really know what I'm looking for in the comments. Maybe how you guys manage/if you think such high stress level environments are worth it at the end of the day. I've been treated as if I'm simply overreacting for ages and it makes me feel horrible, as if I'm just lazy and looking for a free ride. I don't feel as if the hospital can help me and I'm scared for the future.
ira_finn 11 points 3y ago
This sounds really hard to deal with- I'm impressed that you have pushed through this far. You do deserve more support, and your doctors should be treating you better, you're right about that. I have a few suggestions based on time and what seems most urgent.
1) contact all your professors, *like as soon as you possibly can, immediately if possible*, and explain what's going on. Write up a more professional, easy to understand version of the post you've made here, and ask if there's any options for you. Ask how your grade is and if you're missing any assignments. Ask if they're willing to give extra time extensions. If there's a format for your materials that would be easier to access, ask if they can provide it. Ask for extra credit or makeup options. *your professors are the ones that have the final say on your grades, so do not delay this step.*
2) go to an advisor as soon as you can get an appointment and tell them what's going on. Ask what your options are. They may be able to connect you with more resources. Find out how to withdraw from a class, and when the deadline is. *this is really important, because you absolutely do not want Fs at this point in your degree, it will wreck you.* Having a W for withdraw is much better, for your GPA and for possible financial aid options. Your teachers might also offer a Pass/No pass option if you think you'll barely pass but you don't want a low mark on your transcript. At the very least this will give you the option to take a break and come back later in good academic standing.
3) contact disability services at your school. Set up an appointment to get accomodations. They might ask for proof from a doctor. If your doctors won't help you, find a new doctor or get a referral, or just go straight to an opthalmologist, and get evaluated.
4) however any of this works out, definitely find new doctors, get 2nd and 3rd opinions, get referrals to specialists, etc. Many eye doctors can see you without a referral, and while you may have to pay out of pocket to see one, they could be a lifeline for getting connected with another doctor that will take you seriously
5) find a government agency or nonprofit, especially a blind oriented agency, that will help you with your case. There are other resources out there that you might not know about
6) keep using your cane!! If it helps you, please don't stop using it. There's no harm in using it, and you could get injured if you don't! You really don't need a head injury or broken bone on top of all this other stuff. If your doctors aren't taking you seriously, don't take their suggestions so highly. You know you best.
You're so close to being done!! Please keep pushing, you're almost there! You have made it this far, you can make it to the end and then have time to go from there. I believe in you!
1) contact all your professors, *like as soon as you possibly can, immediately if possible*, and explain what's going on. Write up a more professional, easy to understand version of the post you've made here, and ask if there's any options for you. Ask how your grade is and if you're missing any assignments. Ask if they're willing to give extra time extensions. If there's a format for your materials that would be easier to access, ask if they can provide it. Ask for extra credit or makeup options. *your professors are the ones that have the final say on your grades, so do not delay this step.*
2) go to an advisor as soon as you can get an appointment and tell them what's going on. Ask what your options are. They may be able to connect you with more resources. Find out how to withdraw from a class, and when the deadline is. *this is really important, because you absolutely do not want Fs at this point in your degree, it will wreck you.* Having a W for withdraw is much better, for your GPA and for possible financial aid options. Your teachers might also offer a Pass/No pass option if you think you'll barely pass but you don't want a low mark on your transcript. At the very least this will give you the option to take a break and come back later in good academic standing.
3) contact disability services at your school. Set up an appointment to get accomodations. They might ask for proof from a doctor. If your doctors won't help you, find a new doctor or get a referral, or just go straight to an opthalmologist, and get evaluated.
4) however any of this works out, definitely find new doctors, get 2nd and 3rd opinions, get referrals to specialists, etc. Many eye doctors can see you without a referral, and while you may have to pay out of pocket to see one, they could be a lifeline for getting connected with another doctor that will take you seriously
5) find a government agency or nonprofit, especially a blind oriented agency, that will help you with your case. There are other resources out there that you might not know about
6) keep using your cane!! If it helps you, please don't stop using it. There's no harm in using it, and you could get injured if you don't! You really don't need a head injury or broken bone on top of all this other stuff. If your doctors aren't taking you seriously, don't take their suggestions so highly. You know you best.
You're so close to being done!! Please keep pushing, you're almost there! You have made it this far, you can make it to the end and then have time to go from there. I believe in you!
Faded_Night [OP] 7 points 3y ago
Thank you so much, I'll look into all of this asap. The problem hasn't really been my vision getting worse, although my peripherals are certainly failing, it's moreso been getting migraines that are only getting worse. I'm not even sure if they're linked to my vision loss but both came about at the same time.
I really don't want to give up or for this hospital to drive me to despair, but it's a huge uphill battle so far
I really don't want to give up or for this hospital to drive me to despair, but it's a huge uphill battle so far
printflour 4 points 3y ago
I think the above is absolutely great advice. To add on to it, many schools offer a medical withdrawal in particular - this type of withdrawal allows you to withdraw from your classes at any point in the semester, instead of assigning a letter grade.
I’d type up an email, send it to all your professors, then maybe edit it a little if necessary and sent it to your advisor and also the disability accommodations person. The more folks you have on the case helping to solve this issue with school, the more likely it will get solved as smoothly as possible. At least that’s been my personal experience, when I dealt with other health issues that caused me to struggle in my classes.
I’d type up an email, send it to all your professors, then maybe edit it a little if necessary and sent it to your advisor and also the disability accommodations person. The more folks you have on the case helping to solve this issue with school, the more likely it will get solved as smoothly as possible. At least that’s been my personal experience, when I dealt with other health issues that caused me to struggle in my classes.
AllHarlowsEve 6 points 3y ago
Out of curiosity, what testing have they done for you? I know I suggest it a lot, but your vision loss and headaches sound very similar to mine. I've got a condition called Idiopathic Intracranial Hypertension and I went from sighted to severe vision loss quickly. Others will take years and years, though.
Hopefully you can get answers, and unless it's illegal, don't stop with your cane. Your safety is more important than other people's opinions.
Hopefully you can get answers, and unless it's illegal, don't stop with your cane. Your safety is more important than other people's opinions.
Faded_Night [OP] 3 points 3y ago
I've had a blood dye, an eye scan and a picture of the back of my eye (as well as fields tests which are getting worse but the doctors don't seem to care about and pressure tests). Apparently my eye looks fine, the only off thing is the lining of my macular is rippled, but what they're finding doesn't seem to add up with what I'm experiencing.
OpticNeuritis 3 points 3y ago
Sounds a lot like my current experience. No abnormal test aside from a bad VEP last year and my vision continues to get worse. Black/blank areas of vision that are impossible to explain... Shits infuriating
Faded_Night [OP] 2 points 3y ago
That is exactly what's going on with me! It all started after I got the flu. It could have been something else, but the timing of flu and vision loss was too perfect. It's annoying me for the doctors to proudly state nothing is wrong with me. I'm a terrible liar, I'd hardly be able to remember fabricated symptoms after a year
OpticNeuritis 2 points 3y ago
So this has been going on a year? Mine started last march. Was it rapid? I just woke up one day and closed my right eye, and poof... Parts of my vision were just gone.
I notice in the dark, i see a morphing blue area (i mean, a large area) that seems to expand and shrink constantly. Its like an overlay of light blue.
In the day, its like macular holes. Matter of fact I posted this yesterday
"I guess I'll start. Im visually impaired, formal diagnosis was optic neuritis but im not so sure. I have "blank areas" in my vision that sometimes look like black holes and everything around morphs into them, and sometimes I cant "see" black areas but I know they are there, its like my brain is ignoring them or something.
Ive been to a retina specialist, neuro opthamologist, opthamologist, brain surgeon etc. Only abnormal test was a VEP in my left eye. No signs of anything being wrong. Very bizzare. *The visual effect looks like "macular holes"* that I see examples of online. I guess im playing the waiting game and waiting for the physical damage of my mystery condition to show up.
Guess ill add, i also have nystagmus, amblyopia, floaters, light sensitivity, night blindness, afterimages, astigmatism, dry eyes and pretty frequent pain behind my eyes."
Im thinking IIH, or cortical blindness. Something that originates in the brain, not the eyes or optic nerves.
I notice in the dark, i see a morphing blue area (i mean, a large area) that seems to expand and shrink constantly. Its like an overlay of light blue.
In the day, its like macular holes. Matter of fact I posted this yesterday
"I guess I'll start. Im visually impaired, formal diagnosis was optic neuritis but im not so sure. I have "blank areas" in my vision that sometimes look like black holes and everything around morphs into them, and sometimes I cant "see" black areas but I know they are there, its like my brain is ignoring them or something.
Ive been to a retina specialist, neuro opthamologist, opthamologist, brain surgeon etc. Only abnormal test was a VEP in my left eye. No signs of anything being wrong. Very bizzare. *The visual effect looks like "macular holes"* that I see examples of online. I guess im playing the waiting game and waiting for the physical damage of my mystery condition to show up.
Guess ill add, i also have nystagmus, amblyopia, floaters, light sensitivity, night blindness, afterimages, astigmatism, dry eyes and pretty frequent pain behind my eyes."
Im thinking IIH, or cortical blindness. Something that originates in the brain, not the eyes or optic nerves.
BenandGracie 2 points 3y ago
I will just add one thing to all of this.
Doctors are generally good at treating the causes and symtoms of blindness, but they know almost nothing about living your life as a blind person.
I have been totally blind since the age of 3, and it always amazes me that most doctors I come across know so little about blindness skills.
It does sound like you need a second opinnion, and I hope you get one.
When I was in college, I had a prety serious medical problem come uf about a year before I was done, and I pushed through the next year. My final semester was incredibley tough, but I made it through. My grades were not very good because I didn't feel good. Don't push through your final few months, see if you can withdraw. I wish I had. I am happy I finished, but I regret the grades I received. I didn't fail or anything, but my grades weren't as high as I would like.
Good luck, and I hope everything works out.
Doctors are generally good at treating the causes and symtoms of blindness, but they know almost nothing about living your life as a blind person.
I have been totally blind since the age of 3, and it always amazes me that most doctors I come across know so little about blindness skills.
It does sound like you need a second opinnion, and I hope you get one.
When I was in college, I had a prety serious medical problem come uf about a year before I was done, and I pushed through the next year. My final semester was incredibley tough, but I made it through. My grades were not very good because I didn't feel good. Don't push through your final few months, see if you can withdraw. I wish I had. I am happy I finished, but I regret the grades I received. I didn't fail or anything, but my grades weren't as high as I would like.
Good luck, and I hope everything works out.
i_am_a_loner_dottie 2 points 3y ago
Maybe you have retinitis pigmentosa, like myself. Let me know what the erg says
bscross32 2 points 3y ago
You might want to withdraw from your college until you can get sorted out. You don't want to be fighting with this while at the same time trying to adapt to sudden vision loss. You could always return once you figure out what condition you have and have gotten to a point where you feel independent again. Not only that, but once you figure out what your needs are, you'll be able to advocate for yourself better than you will now, when you're still trying to figure all that out.
Faded_Night [OP] 1 points 3y ago
I think I'm just feeling stuck because the most trouble had to arise halfway through my last semester and I'm not sure if it's too late, part of me is just saying sprint the final length. I'll look into it but I have no idea how it works, also I think it would affect the grant I'm entitled to and need, but if the doctors actually gave me resources I feel I need I probably wouldn't need the grant.
bscross32 2 points 3y ago
Well, if you feel you can do it, go for it. It seems really risky to me though. It's so easy to fall behind. Especially if you get headaches from eye strain. You're not operating at 100%, because you're still adapting to vision loss. If the work starts to pile on, and you can't keep up, you're gonna be screwed. That's why I recommend just withdrawing until you get a handle on things. It's not a surrender, more like let me figure some shit out then come back and kick this thing's ass.
People make the mistake of relying on failing vision waaaay too much, and that could be another potential sticking point, depending on how bad yours is now, and how rapidly you're losing vision. With all that put together, and you learning a new way to live, it's not an insignificant risk.
People make the mistake of relying on failing vision waaaay too much, and that could be another potential sticking point, depending on how bad yours is now, and how rapidly you're losing vision. With all that put together, and you learning a new way to live, it's not an insignificant risk.
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