To Hell and Back - My year battling dry eyes

[cathy8889]

Hear you loud and clear, I get terribly upset when I think back to before all this. Hope will get everyone through this.

Take care

Cath

Another update...

The good news... two weeks ago I was killing it on the eye front! Was feeling great and getting back to work. I even got out to play some flag football again!!!

But then disaster struck, but it's not what you're thinking. I tore my right Achilles' tendon just taking off from the line of scrimmage. I basically started running and heard a big POP on my first step. This was after 90 minutes of play by the way... guess I just didn't have my foot planted or something on that play.

And soon after, my right eye took a crap again. I'm not sure why... maybe because of the pain medication? Dunno.

Went back to Jules Stein at UCLA, but before my right eye got bad again though. Doc said just stay on my meds... right now it's Restasis, Serum, & FML. Sadly, there was no new suggestion of treatment during my last appointment.

But the good news is that the right eye is slowly bouncing back again. It's very tough... I feel like I have to baby myself a lot with computer use and phone use. I have a big job coming up in two weeks where I'm gonna have to be on the computer 8 hours a day. If I can't do it, I'm gonna be very, very, very broken up about it. It could mean a lot of lost money (as if I haven't lost tens of thousands over the last two years anyway).

This is a ****ing battle I swear. I'm waiting for the day where it's going to be easy again. My leg will eventually get better, but Christ alive will my eyes ever be remotely normal again? Will a company finally come out with a drug that will enable me to live a full life again and let me follow my dreams?

Compromise is hard. Acceptance is harder. My life has been upside down these past two years. I'm tired of being "sick." I'm tired of having to fib to all my acquaintances about what's been going on with my life these past two years. I'm ready for this to end already.

Another day passes, but I'll wake up in the morning tomorrow, and it will be the same shitty situation. I'll continue to remain positive in the face of all this BS... I know I can do more than many in this world. But I can't help but thinking about how much I miss my old life. It seems so far away.

And I'm out. Take care friends.

[MartyM1985]

Today has been much better, with diligent use of meds and taking lots of breaks from phone/computer/TV use. Hopefully this continues into next week.

[MartyM1985]

Another (good) update...

Restasis, FML, & 20% Serum Drops continues onward with pretty good results. I am back to work and generally pain free. This does not mean I am "cured" by any means, but the arrow is pointing up.

So I'll keep on keepin on. Hopfully things just continue to get better into July.

[MartyM1985]

The arrow continues to point up!!! Working 8+ hours a day with moderate dryness, kinda depending on the day.

Restasis, FML, & 20% Serum Drops. LEGGO SON!!! KEEP THE FAITH!!!

[Faith1989]

I just got prescribed FML and it's helped more than any other steroid. How often are you using it?

[MartyM1985]

I just got prescribed FML and it's helped more than any other steroid. How often are you using it?

3X a day... sadly I'm not sure how long I'm going to be able to stay on it (cause it's a steroid after all). But for now, it's working well.

[theggman]

Give us an update Marty

3X a day... sadly I'm not sure how long I'm going to be able to stay on it (cause it's a steroid after all). But for now, it's working well.

Marty, you have an update? How are your eyes handling your 8 hour days?

[MartyM1985]

Marty, you have an update? How are your eyes handling your 8 hour days?

I am doing very well, all things considered. I am able to work 8-10 hours a day with minimal pain in my right eye. I have good days and bad days though, but latety they've been generally good. I just have to be smart about my condition... use my drops, get lots of sleep, eat right and not let myself get too hungry, environmental control, etc.

Driving home while the sun sets is kinda tough, and contrasting environments still are killer. But overall, I'm working and living life as close to normal as I can get. It's not perfect, but I push through it.

So yeah, things are mostly good. Onward and hopefully upward!

[Faith1989]

Are you still on FML three times a day?

[MartyM1985]

Are you still on FML three times a day?

Yes, until the doc takes me off it. Could be soon, we'll see. Maybe next month.

[MartyM1985]

Yes, until the doc takes me off it. Could be soon, we'll see. Maybe next month.

Officially off the FML, and so far so good. I have some small pain in my right eye sometimes if I try to push cell use or things of that nature, but overall I'm doing pretty well. Many good days lately.

[MartyM1985]

Just wanted to report I have gotten through my project and the pain in my right eye is gone (for now). So everything is on the up and up for me right now.

Any questions... please leave em!

(please note that this does not mean I'm cured in anyway, just that things are much easier right now than they were)

[cathy8889]

Hi Marty, I was just wondering if you could tell me a bit more about plugs please, in your second message you said you knew a lot about them, I would like to get them as my eyes aren't getting better just on doxy, I need more help. I have no idea about plugs, any advice would be greatly appreciated. Also was there a noticeable difference when you got them.

Thanks

[MartyM1985]

Hi Marty, I was just wondering if you could tell me a bit more about plugs please, in your second message you said you knew a lot about them, I would like to get them as my eyes aren't getting better just on doxy, I need more help. I have no idea about plugs, any advice would be greatly appreciated. Also was there a noticeable difference when you got them.

Thanks

Hey Cathy.

So plugs... as you might know, there are two types- temporary and "permanent." I have had both during my time battling dry eyes.

I don't have much to say about the temp ones. They go in the drainage holes and dissolve in about a week. I tried these when I was first battling the whole dry eye condition. They worked pretty good... until they dissolved. Then I went back for the permanent ones as my symptoms persisted.

Sooooo... the "permanent" ones, which run about $100 each I think. First of all, they are not permanently in your body. A doctor can remove them at any time. The idea behind them is that you're just going to have them in your drainage ducts until the doctor takes them out or they accidentally fall out. They are for long-term use.

As you probably know, you have two drainage holes for each eye... one in the top lid and one in the bottom lid. You can get all four plugged if necessary. I have four plugs myself.

Getting your ducts plugged is not an exact science. The doctor has to find the right size plug for your holes (which isn't always easy) and then insert them manually into your lids using tweezers (also not always easy). If this process goes correctly, the plug will fit snugly in your duct and your eyes will conserve all of your tears instead of drain them away.

So what can go wrong? So glad you asked.


1. The plug goes in nicely, but ends up scratching your eyeball when you move your eye. This actually happened to me the first time I got permanent plugs in my upper lids. The one in my right eye was not comfortable at all; I could feel it scratching my eye a tad after the doc put it in (while the plug in my left eye felt fine), and I let the doc know immediately. I even took a walk for a half hour to see if the plug would adjust... it did not. Sooo, I had the doctor take it out during that same appointment. A week later, I returned to his office, we tried again, and we found success. Again, it's not an exact science. Keep in mind this "scratching" was minor, but enough to feel uncomfortable.

2. The plug is not installed correctly and promptly falls out after you leave the office. This also happened to me at one point, though I can't recall the exact date. The funny thing is that I could tell we didn't get the plug in all the way after I left the doctor's office... it fell out pretty quickly after. And back then, I was struggling so much that I don't think I noticed. I was seeing the eye doctor so frequently at that point that I guess he checked it the following week and saw it was gone. Today, if I was to somehow lose a plug, I think I would definitely notice. Which bring us to...

3. You knock the plug out yourself. Maybe you're washing your face or rubbing your eyes... and whoops! There goes the plug into oblivion. It can happen, but I will tell you it's been almost two years with my plugs and I haven't lost them yet to any kind of accident nor am I worried about it on a day-to-day basis.

4. The plug gets wedged deep into your drainage duct and needs to be flushed out or surgically removed. Neither has happened to me, so I can't speak on it. I personally wouldn't worry about this.


In closing, I would highly encourage you to get them. They have been a great help to me, and I see no real reason why they aren't woth the money or risk... though again, I don't see much risk involved whatsoever. That's my opinion... I'm sure there are people out there that have had problems with them. But it's been smooth sailing for me since the doctor got them in correctly.

[Rebecca Petris]

I would like to add something to this. The term 'permanent plug' that is often used by doctors is a little unclear/misleading. When they say permanent, they really just mean the MATERIAL is durable ie it will not dissolve. Most are silicone. But WITHIN 'permanent' plugs there's two distinct categories - the type that are put right at the top of the ducts (umbrella shaped, and you can actually see the tops in your mirror if you look carefully) - those are punctal plugs - and the type that get put into the canaliculi - those are intracanalicular plugs. All plugs have risks, but intracanaliculars have far worse risks because once it's in there, no one can see it, and while it *may* be possible to flush it out, it is also entirely possible that it can't be flushed out and if it causes any infection in there, painful difficult surgeries may be necessary to resolve it. I have talked with or emailed with far too many people who have gone through that, and I'm going through it myself right now, with a plug that was put in 11 years ago in London and that I'd forgotten about.

I think MartyM1985 is talking exclusively about PUNCTAL plugs and I pretty much agree with what he's saying. I just want to clarify this because you could go to a doctor and be offered "permanent" plugs and think you're getting what he's talking about - but then end up with intracanaliculars, little pieces of silicone in your canaliculi that could cause the more serious kind of complications I'm talking about. Some doctors do a proper informed consent before putting plugs in but MANY DO NOT so it's really important to understand the difference in risks before you let anybody shove something in your eye that could come back to haunt you.

There have been a lot of new developments in plugs in the last several years and another alternative is dissolvable plugs that go all the way in but only last 3 to 6 months. They are not completely risk free (nothing is!) but many people seem to have good results. Expensive, but that's the tradeoff for safer.