Help - am I disabled?!!!

[watermelon]

I have been suffering with dry eyes from thyroid eye disease for 3 years now. I have tried steroids and every drop type on the market, raised my bed, wore eye masks at night after gelling.
At this point I am suffering so much that I can't do my job effectively anymore. I AM GETTING WORSE. Lights and air conditioning are my worst enemies - and the computer which is my livelihood is my biggest hurdle.

My eyes tear and burn so much that as of last week I said I have to try working from home. I did last week and the first couple of days were ok with the lights down low - but then by Thurs I couldn't take it even at home. My job involves 8- 12 hours of computer work a day. I went to get glasses today just for computer use to reduce eye strain. My specialist ophthamologist said I need to get puntal plugs as my next step. I can't even get a first appt until mid-Sept. What do I do until then?

In the meantime, I am having a very difficult time getting my work done. It's continual eye strain. Am I cooked at this point on the job? Is my career over? Is this a disability situation - either temporary or permanant?

I need some advice on how to handle my job situation. I am the provider for my family so I am very nervous of what this all means. What do I tel my boss or Human Resources? what do I need to do?

Am I disabled? Help!!!

[ttdub]

Buy a cheap pair of swimming goggles!! They fog up but there awesome!

[VirginiaDryEye]

Lacriserts

I was in your boat a few months ago. I'm currently doing the following and feel great.

UDOs 3,6,9 (fish oil) - 1.5 tblspoons/day
Restasis twice a day
Lotemax - once a day
Lacriserts - i think these have helped the most. Ask your doc for some samples. give them at least two weeks.

[fed up kate]

sorry to hear of your situation
there no way you could do computer work part time to help you but i undertstand that career =money and its hard when your eyes effect you.
have you tried any moisture googles at all as i wear them around the house and they do help i got a pair that are slightly tinted which do help with the bright lights and with being at home you dont need worry what you like.
but i wouldnt go as far as saying its a disability id say its just a really difficult chapter in your life and within time will get better,i try and tel myself that but i know sometimes its easier said that done.

[bassfan]

My specialist ophthamologist said I need to get puntal plugs as my next step. I can't even get a first appt until mid-Sept. What do I do until then?

Pretty much any optometrist (except maybe Lenscrafter type places, not sure) should be able to do plugs. Just try somewhere else, its easy money for them so they will likely jump at the work...10 minutes and like ~$400! If you haven't had them before, its definitely worth a shot. Do the lowers first, then maybe try the uppers later. I would recommend surface plugs (superflex) by Eagle if you can get someone to get them. I have these useless subsurface things called Oasis Form Fits in at the moment. I think one of them has disappeared but of course I can't be sure since I can't see them and who knows where in me it is.

my .02

Daren

[Rebecca Petris]

I fully understand how scary this is for you. I support a family too, and I had to quit a job years ago because of my eyes. But I'm fine now for work & computers.

It's hard to form a clear picture from a single post on a bulletin board but from what you've shared, I think that you may need more diagnosis and you certainly need a broader treatment strategy so that you can get this under control (and believe me you can!).

A lot of people here have struggled with where you are: how to cope with work when you're in an acute stage (which is often accompanied by depression & anxiety) because the process of getting the right treatment plan pinned down can be so excruciatingly slow. Some people manage to tough it out, some take some time off when needed, some take short term disability. What's best for you, I don't know, but I'd say reducing stress by not letting the pain get too-too high is tops priority-wise. You know your eye 'triggers' and you're getting too much of them, maybe it is time to take some time off.

Personally my advice would be,

a) Max out on pain management strategies, of which moisture chambers are usually tops. You really need to get out of the eyedrop mentality. Eyedrops are necessary, and if it's the RIGHT drop it can be a vital part of treatment, but for most of us severe enough to show up on a bulletin board they are not the whole solution.

b) Talk to your boss and HR about what you're going through so that you have their understanding and support, and find out from HR what your short-term options are. I'd present it as a condition that's causing you severe pain that's interfering with your work and that you may need some accommodation (and extra time off for doctors) to get it under control. Having some input from your doctor on this would be helpful too.

c) If your current doctor does not understand the impact this is having on your daily life, try scoring yourself on the OSDI and taking it to his office and insisting it be part of your medical record, and if he doesn't seem fazed, find a new doctor.

Other than that... random thoughts. I have a good friend with thyroid disease who was in really bad shape a year ago and is now GREAT. She lives in Onion Goggles (and loves them) and used to wear Tranquileyes at night but no longer needs it. She had some kind of surgery, I forget which. Then there are others in scleral lenses. And those who use serum drops. And on and on. I'm just trying to say that you CAN beat this.

I agree with the other suggestions. Swim goggles are the right concept though you can probably get something a little nicer looking. Have a look in the shop for starters. For someone who's been at this 3 years I'm surprised they haven't gone the plugs route sooner.

[rosye]

Try to get an humidifier and/or protective goggles to be able to handle your work until you get you punctal plugs. Anything that helps to keep the humidity on your eyes works for reducing the pain. If you feel your doctor isn't sensible enough to your condition, try to change doctors, look for a cornea specialist (usually doctors who work with eye surgery). But do get the plugs, as they also help a little.

Don't get desperate until you try some goggles/humidifiers to work with. I know it's also a pain having to use these gadgets to be able to work, but if it's the only way, then we just have to get used to... I'm struggling with this issue too. Right now I'm not working at computers, not even from home, I'm doing some crafting and my eyes feel so much better... but I just got a job proposal and maybe I'll return to work next week. I'm terrified, but I just have to go on.

Keep in mind that there are bad days, but also good days. If you can't, find somebody to talk about it, not just the forum, but friends, family or even a professional. Try anything you can to reduce your anxiety, for when you do that, you find strenght to keep struggling. For me, that meant finding some nice goggles, reassuring myself that my eye doctor is a real good one and taking anxiety-reducing medication (antidepressants). I'm not saying that you'll have to go all this way - only you can say what works best for you.

I'm not sure if I'm permanently disabled myself, but at least I'm less anxious about it. It's not easy, but we all have to go on looking for ways to manage this. Take care!

[watermelon]

Driving in now dangerous

Today started out scarier than ever. I have been working home and my boss asked if I could come in for a staff meeting. It didn't take more than a couple of miles on the road before my eyes started tearing up and burning like crazy. I wiped my eyes, then tried closing one at a time, then I couldn't hold either eye open - and I was driving!!! I pulled over as quickly as possible - and waited in a parking lot for quite some time until my eyes felt good enough to drive back home. Now I fear I can't leave the house driving anymore. Geez... how bad can it get???

I tried to order the tranquileyes - but they are on backorder. I don't think I can wear goggles during the day because of my prescription strength with asitgmatism, nearsightedness, and need for bifocals.

Still waiting to see if I can even get an initial visit dr appt with the new specialist before Sept 2. I have to hand in there - but I am not thinking as clearly as I used to with this going on..

[watermelon]

I answered the OSDI scoring sheet and I am either 86 if I answer 12 questions or 81 if I answer 11. I was not sure about driving at night. I have difficulty some of the time but my bigger problem is during the day.

Thanks for this. I think I will bring this to my dr. While it's great to be able to keep working from home right now, I do think I should take some time off and focus on what I need to do for my eyes. Working on the computer 5 days a week for 12 - 15 hours is not a good thing at all right now. I have no time to even figure out what I do need.

I think this scoring chart is a little strange. If I don't answer some questions and put N/A the score changes - some higher and some not. It seems a bit tweakable and a bit subjective.

[Gretchen]

The exact number of the OSDI is not really relevant. Drs just use it to group your symptoms profile into mild, moderate, severe. 81 OR 86 is solidly severe. Actually 65 is severe - so don't worry about those five points....

Any eye doc worth his salt is going to take this score seriously. If not, find someone else.

Gretchen

[watermelon]

I found a doctor today that had an open appt and willing to take me. After examining me he put collagen temp plugs in my upper and lower lids. My eyes were clearly extremely dry and my tears are very thin. Anyway, let's see whay happens with these things in my eyes. I have to go back Sept 4 but he said to stay home from work until then and take care of resting my eyes, putting in the drops - Lotemax - and stay away from eyestraining things like 12 hours on the computer.

If this works I get the real deal plugs - plus Restasis - not sure why that is needed.

If it doesn't work, then I guess I am back to square one.

I am looking forward to taking a couple of weeks off from work - but not looking forward to telling the boss. I feel like they will think I am weak.

[irish eyes]

Watermelon

I do understand your fear but you are NOT being weak.

Having said that, being made to feel weak is something I've also experienced; many people think that about a person who appears to be functioning normally in all other ways.

I work with a lovely team of people but there is a manager in another department who admits she has no patience with anyone who suffers with depression. The scary thing is, she almost convinced her team to think the same way. (She will get her come-uppance at some stage!!)

Dry eye is not an easy condition to manage and at times, I am utterly exhausted by it all and it makes me feel very ill. You must work hard at resting!

[watermelon]

I have toughed out so many things in my life that seem much greater than this. And yet now, I feel i have to succumb to something that I can not control, but need to accept as part of who I m now, and need to find out how to manage the best way to find comfort and possibly even a new livlihood.

After 4 days of collagen plugs, my eyes are not tearing so much, but my eyes are incredibly tired. I want to close them all the time. Morning are the worst. But my late afternoon I have to close them for an hour or two.

I am not sure if this is part of the healing process for getting used to plugs or what is normal at this point.

I am very glad I took this time off from work until Labor Day. Not sure yet what it be like then...