I want to be clear, I do not wish for pity nor is this a post about self-pity, but one of hope and determination! I wish to share something really cool for those who may be suffering from visual impairment at this moment.
To start off, recently I have been experiencing a painful change with my vision. It’s becoming increasingly hard for me to read and write, in spite of the fact that I have my web fonts set on a large setting. The issue is, although my browser is set to large fonts, parts of certain websites and blogs will not adhere to such settings.
For a while now, I’ve been unable to read certain blogs of others I follow, because the font is just too small and impossible for my eyes. I’ve been unable to enjoy YouTube comments nor the comments on other sites.
And even though my blog editor does adhere to the font changes, my actual posts are beyond my reading most of the time. Not only that, I am unable to see the ruled lines on my notebook paper and taking science notes has been difficult, to say the least.
So, for a few weeks I have felt a little depressed about it. However, the good news is that I do have a Mayo Clinic appointment for the end of December! I got a letter from them, some weeks ago, and I felt so very nervous as my sister read it for me.
I was so use to letters being rejection ones and I feared that the Mayo Clinic was notifying me with the standard, “Thank you for submitting your eyes for review. However, we’re sorry to inform that your eyes are not marketable at this time…”
I know, that’s silly to worry about, but it didn’t stop me from hunching my shoulders in anxiety and ask my sister timidly, “What does it say?” Of course I “got in” and I began to cheer over the good news! I made it into Hogwarts! I’m a Wizard, Harry! ^_^v
My therapist made the remark that perhaps my Christmas gift this year will be the gift of sight, That’s a wonderful thought, as it would be the best gift on the planet and the best Christmas for me!
Even though I have an abundance of hope now, I still felt a lot bummed about my lack of reading ability online lately. However, it’s just like me to be stubborn and search for another solution…
As I type this, I’m hearing a robotic UK male voice, reading back what I’ve typed. He reads my blogs for me and any website I wish him to, by the click of a mouse.
I found this reading program, for the visually impaired, free for the browser Google Chrome, it’s called: ChromeVox. It’s not perfect, but it allows me to enjoy websites again. I wanted to share this link for those who may really need it or for the curious.
There are a list of voices to choose from, but I personally chose the “UK English Male”, because I am sure that I won’t become bored or annoyed with his voice too soon. I’m considering giving him a name, for silliness sake. Hmm… Maybe I’ll call him Rupert! I don’t know why I like that name so much. =p
Actually, now that I’ve spent Sunday testing out the program on my blog, the blogs I follow, YouTube comments, and any other site I could think of, I feel a lot better again. I feel less isolated from the web now.
I am constantly fighting my eye disease and I’m not making it easy for it to bring me down. It’s a crappy situation, but I shall persevere. It’s just the sort of person I am, is all.
On Thursday, I will celebrate my 35th birthday… whew. I’m getting old. Anyway, I look forward to celebrating another year of life, with my family. I may be silent on this particular blog for a short while, but don’t worry, I’ll be back!
In the meanwhile, here’s a song-hug for my dear readers: Somewhere Over The Rainbow / What A Wonderful World.
Thanks for reading, as always! ^_^v
-D
A Quest For Happiness 
I won’t press like because I don’t like it.
Damn it. Damn it. Damn it.
I hate this damned eye disorder.
This said, I am happy that you have found a solution for reading the web.
Anyway, thanks for keeping us informed. We are always here :)
And 35 is not old :) Happy birthday :) May you have many many more, each getting better :)
Greg
I understand! This disease is terrible, for sure. However, I am not without hope, I look forward to December for my Mayo Clinic visit. :-)
Thank you so very much! I’m having a pretty awesome birthday this year! I wish you well, my friend. Many hugs! :-)
I liked it for the tip (like I’ll figure that out, lol!) and I’m glad to see you’re still blogging and have some good eye news. I’m beyond frustrated with my vision (post-CXL here) and can totally relate, which is why I try to stay away from my laptop and just struggle with everything that’s written. Argh. I’m too complicated to fix as I have much more than KC going on, but have my fingers crossed for you.
Best wishes,
A :)
Thank you for the like, A! Just a few days ago, my glasses fell apart (they were over fourteen years old), so I’ve been leaning heavily on my screen-reader this past week. The good news is, I am scheduled for a corneal transplant on February 2nd, which means I will need new glasses anyway. If you need help with installung the screen-reader to your Google Chrome browser, perhaps this link would help: https://support.google.com/chromebook/answer/2588006?hl=en
I wish you luck with your KC as well and thanks for reading! :-)
Oops! I’m sorry! I gave the wrong link for chromebook, when I meant to choose the one for the browser, here: https://support.google.com/chrome_webstore/answer/2664769?hl=en-GB&rd=2
Yep… I’m so blind and clicked the wrong link! Sorry about that! LOL!
It’s OK. I’m really bad with technology since I lost my career almost 15 yrs ago due to Ehlers-Danlos syndrome. It was my brother who created my whole blog, in fact, and now that I don’t blog, I have no idea how to do anything on WP. My email changed recently and I can’t do anything (like upload a photo, etc.) and now everything is sent to me via something like Office365 (?) which won’t even open…ugh! I have Office from ’03 or something, lol. I tried the 2nd ink you posted but got nowhere. Maybe it’s for phones and tablets or something. I do appreciate the tip, though. Also, I find that certain themes on here are easier to read like the one I chose way back when. A fellow-blogger showed me how to blow up Chrome and my CPU in the settings years ago and I just try to get by with that. I do better on screens with higher resolutions, so I’m just hoping to get a new laptop when I can as this one is really old and so hard to see on. :/
How can you wear glasses?! I can’t get any correction at all and am so jealous. Well, it sounds like they’re conking out, which is what happened to me within 6 mos of getting KC and so I only wore glasses a few moths of my life. Are you no longer a candidate for CXL? I think you had a friend who was willing to pay. Well, if all you can do is a transplant, then do what you have to do to save your sight. This disease just sucks and part of why I stopped blogging was due to how hard it was to see and edit for hours on end. And, now you get why I never followed anyone! My eyes would have exploded. Lol. I also have muscle imbalance (strabismus/exotropia, etc.) that came on with the KC, so reading is extra hard as my eyes don’t line up anymore.
Sorry to make you read a long comment. I hope the English guy can read this for you. Oh, I should say I do follow the KCGB blog since they only post sporadically and were the 1st I met on here and that’s how I found your post today as they re-blogged it. :)
Take care, best wishes, and happy belated b-day,,,
Hmm… I may have chosen the wrong link again, so I’ll stop being lazy and try to give you a better walkthrough of installing the program! lol. Okay… first click the link for installing the screen-reader (ChromeVox) and click the huge button on the top right that says “Add to Chrome”. It should install on it’s own, but if not (because Chrome can be fickle sometimes), you’ll have to enable the program manually. To do this, on the far right of the browser window, click the button that has three dark lines.In that menu, scroll down to “settings” and click. On the far left of the next screen, select “Extensions” and then click the check-box to enable ChromeVox. To change the voice options, just click the “options” link that appears after you’ve enabled the program and voila! :-D
Oh, apparently my glasses were just for show at this point, with very little actual function to them. I had them for fourteen years, because every time I tried to ask for new ones, my eye doctors kept telling me that I have the highest prescription available and they couldn’t provide me with any that would actually help me see any better. And they simply didn’t feel like issuing me a new pair, since my glasses were still in good condition (I tend to take very good care of my things, until they suddenly fall apart with old age). My KC has progressed so far that corneal transplant is my only option for sight now. However, once I’ve had the surgery, I will need new glasses, perhaps not the highest prescription this time around. OR, it ill be the same prescription but it will actually be a real use to me this time around, instead of a cute ornament on my face. =p
Wow… I am amazed that my blog is being reblogged at all. I’m just a silly woman who decided to blog her frustrations in 2014, instead of curling up into a ball of tears. This blog has been helpful to me, in keeping hope and my spirits up, so I’m happy if its any help to anyone else. Thanks for reading and commenting, A! :-)
OK, the problem was that it wasn’t installing on its own. So, I clicked on that button thing like you said and now I’m afraid to add it as it said it will “read and change all my data,” etc. I’m really low-tech and afraid I won’t be able to get rid of it and it will mess up my already messed up laptop, lol.. For me, it may be helpful on the websites that I can’t zoom up on via something in Chrome…sorry that I’m not good at explaining it! I think it’s literally called Zoom? As I already have Chrome and my CPU blown up, I can read the basics on here (this box is pretty sucky, though).
I think I’ll hold off for now so I don’t screw anything up and I don’t want it 24/7, but so appreciate you taking the time to explain it all. I thought it was more like the zoom option or something. I know that once I can get a new laptop with higher resolution my life will be easier, aside from not knowing how to navigate new versions of Windows or Office and that whole mess. I can finally see the TV really well (for me) as it’s new with great resolution, rather like my phone but the screen is too small for the web and my fingers are wonky from EDS so the keyboard isn’t the best on there. I’m not sure if high-resolution screens are a KC thing or a post-CXL bonus as I never had anything new before.
Thanks again!!!
As far as I know, ChromeVox doesn’t change much of anything, only that everything in your browser will be read automatically unless you hit the CTRL button to stop speech or select an item specifically for it to read with a click. However, if there is an issue with the program, it’s easy to uninstall it via the same options menu, by clicking the small icon of the trash-bin next to the extension. Plenty of times I’ve downloaded extensions for Chrome that I did not like overall and simply disabled and deleted them. And yes, the program is operational all the time, unless your manually uncheck the “enabled” box. I often do this, as the screen-reader is terrible at reading my emails (lots of lag until it freezes my laptop), so I have to uncheck it and continue to ask my friends and family to email me in large fonts. It is annoying, but then again this particular screen-reader is free after-all. A better quality program that can be switched on/off with a click of a button (instead of manually going into settings each time) can be costly. And this screen-reader only works for the Chrome browser, not for any other nor does it read from desktop programs (like OpenOffice or any writing program I may use for writing my novels). It wouldn’t work to help you with Office, in other words, unless it’s a program that can be viewed in Goggle Chrome directly. There are screen-readers on the market that can read desktop programs and interpret images too, however they are very expensive and can range from a couple of hundred dollars to eight hundred dollars. So, ChromeVox is just a free and small step to take in order to help the visually impaired using the Chrome browser. I’m not tech savvy as well, I just know the basics of installing and uninstalling programs, but if you do have younger folks in your family, you can always ask them for help as well. I find that the younger the person is, the more tech savvy they are! lol.
No problem! It was my pleasure to try to help. :-)
Hi,
I wouldn’t want something reading everything 24/7 so I don’t think it’s for me, but totally useful for other people. I thought it was something you could activate like Zoom if you need a little help, but no biggie at all. I’m normally not online daily and basically just clear out my inbox or Google this or that. It kills my body to be on here, too. :/ I don’t know anyone where I live of any age (lol), so if I have tech issues I have to go without which is why I bought an Asus years ago and don’t mess with it! I do appreciate all the info, though. :) As mentioned, I just need a new Asus and it will be as good as the TV screen-wise.
Take care…
Alrighty then! -)
I totally understand that. I often need the internet for research, learning/educational purposes, and communicating with long distant family and friends. And for my own entertainment, of course, because I don’t watch much TV anymore. It’s hard for me to enjoy shows, when all I can see are blurry blobs on the screen, and heaven help me if there are subtitles! LOL! So, being able to read online was most important in my case, which is why I sought the screen-reader. However, if you don’t really need or use the internet often, yes, this particular program would become a bit of a nuisance to you very quickly. Please do take care and thanks for visiting/commenting on my blog. :-)
I have 12 years of college education that went down the drain due to EDS. :/ I do know all about research and used those skills, via my laptop, to find the connection between KC and EDS and then self-referred to an out-of-state geneticist to confirm my suspicions in ’12. I was under the care of one specialist after another since getting sick in ’01 in my late 20s and they all misdiagnosed me, but I was the one who finally figured it out via this very laptop while my vision was actually worse. I also researched all the time for my blog, and cited journal articles frequently for online forums I used to be involved with. Being on here takes an enormous toll on my body, but it’s too long to explain unless you have EDS. Sorry, but I feel I need to clarify this.
Basically, I could see my laptop so-so–even if not perfect vision–and then several months ago my PM&R doc who deals with the EDS had me try the Butrans patch, which I was very leery about as I’m opiate-intolerant and they don’t work on my pain (Butrans is a partial opiate…too long to explain, again). Lo and behold, it turned down the volume somewhat on my chronic, level 7+ pain, but the side effect I get is double plus vision, which is a side effect I also get from opiates (along with chronic vomiting and so forth). So, it’s like having worse KC but without really having it!
As someone with EDS and KC, this was the price I had to pay to get enough pain relief to just get groceries, etc. without feeling like I was going to die as I’m disabled and can do very little and I have no help. The vision changes are not permanent, but as I have no plans to go off this drug, I will continue to have the loss of several more lines of vision. Yet, I can still see on here, it’s just harder and since it hurts my body, I’d prefer to not spend my time researching, emailing, and so on anymore.
Again, I really appreciate all your links and tips, but I wasn’t aware this program would read everything as I don’t need that and as I truly suck with current technology (I was fine before I got sick), I’m worried it will mess up my laptop or who knows what. I also haven’t removed a program in years and don’t want to try and figure that out again. :/ I just wanted to clarify as my pain has been up for weeks due to the weather, I’ve barely been sleeping, and a lot of stress like another fire in my building must be making things not come out right (again, I hate “talking” to people this way).
It must be due to CXL that I can see high-resolution screens like the TV and my phone rather clearly still and I can actually read the ticker tape on TVs if they’re newer. If they’re old, then forget about it so I know what you mean. I would prefer to have my life and career back and not spend my time going to endless doctor appts like every day this week and watching boring TV all night, but it is what it i. That’s a very sensitive subject for me as people with EDS get labeled as lazy when we have one of the most painful conditions out there. In other words, it’s my EDS that’s the most debilitating and then the KC is the icing on the cake. I had laptop issues long before I had any vision issues and the same goes for reading books–my former, favorite pastime–due to my neck and wrist/hand pain.
Again, best wishes on your surgery so you can get back to a normal life. That sounds dreamy. :) I’m signing off as we can both do without my long-winded replies and so things can stop getting lost in translation for whatever reason. Take good care and stay warm up north! :)
Dear “A”,
I’m sorry, my patience is wearing a bit thin now… I think there is something lost in transition, indeed! I must clarify that this blog is NOT a KC Support blog, whatsoever, but my personal blog to share/vent all things within my life, not just the issue of my eye disease. In other words, I’m a blogger with Keratoconus who blogs about her life and interests, while writing a few rants or updates about my particular case with KC, not about all cases of KC in general. For whatever reasons, KeratoconusGB has decided to reblog a few of my personal accounts on their blog, which I do not mind and I’m flattered about, however that doesn’t make this blog a hub for those searching to find options for their KC. Nor do I offer that my blog or any unofficial blog like this one is the best place for people with Keratoconus to find “THE” solution to their eye disease nor do I suggest that only one method of treatment is best for any or all. I’m just blogging about what is best for me and my case, which may be corneal transplant, is all.
I am sorry for your troubles, truly. However, it’s not appropriate to blog your advertisements for CXL on my blog, when I clearly have little to no confidence for that procedure and do not wish to advertise it above other options to treat Keratoconus on my personal blog. Clearly, you are able to blog well in your comments, so please do so on your own space on wordpress by all means! If anything, this experience have inspired me to write an upcoming blog to warn against the dangers of self-diagnosing oneself or avoiding seeking a professional opinion/diagnosis/treatment for ones Keratoconus condition, as every case is different and some procedures work for some but not for others, depending on the seriousness of the cases. I believe that my future blog post about that (which I’ll write after my eye surgery when I am able to), will be a greater help to my few readers with KC than shoving a procedure that may or may not work for their case down their neck-holes, as I’m NOT an eye specialist nor spent years in medical academia for study in Keratoconus and other corneal diseases. I am unqualified to tell KC patients to try one procedure over another, no matter if I’ve found success in my chosen procedure that was advised to me by an actual specialist. And no, even though I read a lot of medical data on pubmed about Keratoconus procedures, that does not make me an expert!
To answer your confusion, I had KC for over fourteen years now and I’m in the advance stages of the disease. I wore the glasses out of habit, as I was prescribed them over fourteen years ago when my KC was very mild, and because (as I mentioned before in the previous comment section of a unrelated post) I’m childish and tend to name my medical items. My glasses was named Harry and when he fell apart last week, my eyes are no worse or better with or without him. Although, I carried him on my face for fourteen years, so I miss my little buddy sitting on my face! Erm… that sounds a little dirty.. I didn’t mean it that way! (o///o) <–anime blush emoticon.
Anyhoo, I wish you luck with your KC, and I'm sorry, but… I will delete your comments on the other unrelated blog post, as it was my introduction post and have very little room for a KC debate. And I'll have to ask you to kindly SOD OFF… politely. I'm not interested in sipping the CXL kool-aid, it wouldn't work in my case anyway, so I wish you luck with your life! :-)
Best regards,
-D