I don't have a definitive diagnosis yet, maybe someday. My bloodwork and biopsy have all been negative and have been told by several doctors that I have it. Althought the rheumies in my town won't diagnose without bloodwork.
Anyway, my dry eyes give me fits at work. I am a Database Administrator and look at a computer most of the day. I don't know how much longer I can continue doing this type of work. I would like to find something else that doesn't require so much computer work. But, as we know, most jobs do nowadays.
I am wondering if anyone has acquired disability (either company provided or social security) based on your eye problems, instead of Sjogren's. Mainly, I would like to know the experiences of those that were able to get company long term disability, as my company has a really good plan.
Thanks!
Hello
I have some really big issues with my eyes, plus tons of other stuff. But it seems like my eyes are the worst. I can't see very good. I can still drive sometimes but not at night. i just have to use eye drops at every red light it seems. I am waiting on an eye study. I have applied for disability twice and was turned down. I am going to a Lawyer tomorrow. I can't even believe i was turned down. I have Sjogrens, Fibermyalgia, Heart problems IBS, Diverticulitis. Severe ADHD. Learning disabilities. I have had to have my big toe fused to my foot, need the other done too . had a Morton's nuromia taken out of my foot and I think it has grown back. Eye problems ect. so whats up. but you know everyone is different as with each state. You should try. Call social services to see if you qualify. and Best of luck. I hate not being able to see. I feel like I am in some sort of fog all the time. its horrible. all I want to do is close my eyes and sleep my life away. But can't. Good Luck
Theresa
Wynter, I sent you a private message. Lucy
Hi Wynter,
I was wondering how you are making out inquiring about disability based on your eyes.
I have a similar situation whereas I work at a computer all day and really struggle with my eyes. I just recovered from a corneal ulcer which made working *really* difficult.
thanks
len
Sorry that I didn't respond to this a little sooner. When I went to the eye doctor I found the plug from my right eye had fallen out. The doc replaced it and it helped a little. As far as disability, I haven't filed because I really want to work and I am capable of doing so. My eyes really bother me, so I try to take breaks, use eye drop, and all that stuff. My husband and I might relocate back to Dallas soon. If we do, I am going to try and find a job that doesn't require looking at the computer 8 hours a day. If that even exists.
I could be wrong, but I don't think one can get disability without some kind of diagnosis from a doctor or at least your doctor supporting the need. I have keratosis a disease that affects my corneas. A disease often found in sjogren's syndrome http://bjo.bmj.com/cgi/content/extract/86/10/1192 (http://bjo.bmj.com/cgi/content/extract/86/10/1192). My doctor has threaten to take my driver's license from me a number of times, it often comes down to me missing just one more letter on that dreaded chart. The thing about this condition I need to wear gas filled contact lens, which I can't because of dry eyes, though I do still have some tears not enough to support these HARD lens so corneal transplant or an implant of an small supportive device to help hold up the cornea is needed. I do not want either! I have been wearing "the last pair of glasses that can be made for my eyes without some other aid" so says my doctor. I have had one to tell me there's no need for me to return to him. I am so scared about this because these glasses are to the point that their about of no use to me. I DO NOT WANT DISABILITY FOR MY EYES I WILL LOSE MY DRIVER'S LICENSE & INDEPENDENCE! I drive only familiar places, go to traffic lights so I don't have to cross over oncoming traffic and certain times of day. And never reminding doctor I am still driving, only if they ask me directly!
I've heard that it is not uncommon to be denied many times before being accepted. I have never filed for eyes, but have been thinking about it for other things!
Bernice
Thanks, I am still working and will as long as I can. There are just some days that it is so difficult, other days seem to be tolerable.
I am on Restasis but have not tried plugs yet. My doctor just wrote me a prescription for Lacriserts which I will try.
I was wondering if disability was even an option.
len
I am also a database administrator. I only work part time now because of the same eye problems. I can afford to do this so its ok for me at this point in my life. However if I really needed to work I would get the Boston Ocular Surface prosthesis for both eyes. You can get them in Boston and Houston (and I think 2 other cities too but I don't know which ones). The cost is about $7500 total for both eyes - the huge cost is to get the custom fit. Once they have the fit replacements can be made without the huge expense. This lens is not a contact lens. It floats on the sclera of the eye not the cornea. It is used for people with SJS and severe injury to the cornea or deformed corneas (keratoconus). It can be made to correct for vison so no glasses are required. You trap tears underneath the lens so your eyes are not dry any more. My eye doctor says that he has restored vision to people who were legally blind with these lenses - it amazed even the Dr. From the same eye dr I got autologous plasma drops and they were able to heal the dry patches on my cornea. If it were coming down to not being able to drive I would definately get those lenses.
Tuckerdog
Tuckerdog, these lens are called the Boston Scleral Lens. They also refer to them as "corneal devices" but believe me, they are indeed contact lens, just very large ones.
There is absolutely no guarantee these lens will be wearable to any person even after you pay for them. I don't want people to get the wrong idea. I've made 3 trips to Boston and have $13,000 worth of lens (yes, the Boston Scleral Lens) sitting in my kitchen cupboard. They were never able to fit my most problematic eye. They try to weed out the people they think will not be able to wear the lens and send them home. During my 3 trips to Boston from Michigan, I also had to pay $100 night for hotel room, airfare both ways and was there a total of about 10 days.
Also, glasses would be needed for reading if you were a person of above 40 years or so.
Lucy
Eyeamdry,
I really would like to learn more about these lens. I did a search on google, but the info. was very limited. I emailed info.Boston's.org last night after reading Tuckerdog's post.
Eyeamdry, I am to the point of desperation when it comes to my eyes. For the past two an half years I have been wearing the last pair of glasses that can be made for me minus some other additional aid. My doctor has told me there is no need for me to come back to him unless I want to be fitted for the DRY hard gas filled lens ( which I can NOT wear) , intacs or transplant. I fear both of the former, my eyes get infections to much.
CORRECTION: my condition keratocus / (SORRY, NOT SURE OF THE EXACT SPELLING)
ANY ADDITIONAL INFO. WOULD BE GREATLY APPRECIATED!
Bernice
eyeamdry,
Sorry to hear about your bad experience with the lenses. How long ago did you get them? My eye dr said that they can add the bifocal feature so the even reading glasses would not be required. He spoke to our SJS Houston group about 6 months ago. He did say that there had been older models but this was a new one fitted by computer. Even if some people have had bad luck with them I think that if it came down to giving up driving and the evaluation said that I am a good candiate for them, I think I would still give them a shot. I wonder what the success rate is?
Tuckerdog
Tuckerdog & Eyeamdry,
I read that there has been improvements, something about one designed using computer tech. It is worth a shot to me. If I can get in I'm there!!!!!!!!
Peace & Be Blessed
Bernice
Bernice,
My Dr. is Dr. Stephen Pflugfelder. He is at the Cullen Eye Institute in Houston. Office number is 713-798-6100. If you are not near Houston I am sure they could tell you what other cities have the lens available. This is the Dr that prescribed my autologous eye drops which gave me my life back. Now I only need to use them when my eyes are sore. He said the name of the lens was changed to include prosthesis so that insurance can cover it.
Good luck.
Tuckerdog
Tucker, I do know that Dr. Pflugfinder is a very highly respected ophthalmologist. I've spent the last 10 years trying to "fix" my Lasik damaged eyes and have gotten to know many drs names in the process. I have never been to see him, although I went to Dallas to see two well known eye docs there. Sometime after the Lasik damage, I got Sjs. Was just dx two and one-half years ago.
It's been about 2 years ago that I got my Boston Scleral Lens. I understand why someone would take a chance to find out if the lens helped. I did. I've also tried autologous serum drops, but had to make a 200 mile round trip for the process and my insurance would not cover the cost. That's why I could not continue doing the drops.
It's not so much sometime whether it will let you see to drive, but whether you can WEAR the lens to be able to see. In my case, I cannot wear the left lens which is the one I dearly need. Wearing just the right lens wouldn't help me. Insurance does sometimes cover the lens. Mine did. I went back after my first fitting about a year later and had a Sjs and cancer diagnosis between those times. I was not well enough to travel during this time. I finally got back for a re-fit of my left eye and I was there a full 5 workdays, and they charged me $5,ooo for a different left lens and they knew it didn't fit when I left that afternoon to catch my flight. I offered to stay over the weekend so they would have more time to work with me, but they declined. They did, however, file with my insurance and get the $5,000 which highly annoyed me.
I am merely trying to show my experience with the Boston Scleral Lens. Many people are embarrased when they are not succcessful at something and don't always want to speak about it. I was one that had to try the lens because it was my last chance, and they were convinced I'd be a good candidate. Lucy
PS Tucker, the bifocal thing might be very new and it would be easy to find out, just call and ask.
You are very lucky if they have the lens where you live so you don't have a big travel expense to see if the lens will work.
eyeamdry,
My son's fiancee had lasix done and it was a failure. She was sent to Dr. P to get the corneas healed after lasix. Everyone from all over Houston gets referred to Dr. P for cornea problems. I am so lucky to live here. My life would be miserable if I was not able to get my corneas healed. For me it is just a 1 hour drive round trip.
Tucker
Yea? Well I live close to one of the 'TOP" in the field too, people come from all over the world to see him, You probably have seen him on TV, but guess what he wants $7,000.00 an eye, then add $300.00 an eye for pre-examination screenings. So let's see that's 7,000x2 ( got two eyes) + 300.00 x2 =$20,000.00 CASH MONEY! This buster M@@@ insists that he refuse insurance payment, he wants his money upfront. I have insurance, that was willing to pay, between my vision & physical coverage it would be paid since it is considered a physical problem not mere vision. He says he will help patients to file once procedure is OVER! Now for me $20,000.00 is not pocket change or anything I can find in my bank account!
Don't get me started on my experiences with doctors, it ain't pretty!!!!!!!!Ha!
Peace & Be Blessed
Bernice
Bernice, drs are very protective of their pockets. After all, why should they "help" you after they already have been paid? $20,000 is a huge sum that most people cannot just pull out of their wallet. Grrrrrrrr.
Unfortunately, I DON'T live close to any of the TOP docs, so all my trips include travel, motel, meals etc. Oh, I'd better get off the subject before I get all worked up. Lucy