Having a really really bad week

[Natalie06]

After 2 weeks away from the office, this week hit me like a ton of bricks. I had a major flare up of the bleph so am back on minocycline 100 mg per day plus steroids and it's barely under control. And the plain old bone dryness is killing me. I just came home from work and dumped two whole vials of theratears in my eyes and it's barely made a dent.

My MD has no other options for me and the only "hope" on the horizon is the clinical trial for the androgen drops.

I guess I am going to have to stop using the Lupron for a while and see if my own hormones help. Problem is that it takes a good 4-6 months before the effects of Lupron wear off and it's very possible that the worst damage has already been done. So I could be doing this for nothing. And then of course, there will be the returning pain of my disease that requires prescription pain medication to deal with...most of which are not good for dry eyes.

I hope my Lasik surgeon got a lot of satisfaction from my 3K for all the misery his "reasonable risks" for Lasik that he could "deal" with have cost me. In all respects.

I am so sorry for the pity party of one. I am so miserable right now that my RAGE at him just overwhelms me.

Thanks for listening.

Natalie

[Rebecca Petris]

(((((Natalie)))))

I am so sorry you're having a hard week. I'm glad you posted about it. If you have to go through it, at least go through it with friends around!

Is there anything that gives you relief during those "I want to pluck out my eyeballs" types of times - cold packs, naps, saline rinses, panoptx, etc?

Siiiiiiiiiiighhhhhhhhhh. Hang in there.

[William53]

That sounds really hard. I think of this board as one place where it's oke and it's safe to lament and rant about our condition.

I had a DES crisis in late-August & early-September that seemed endless, but after some minor research and a major med change I'm doing well now.

Hang in there! I hope you get a break-through soon!

- William

[Natalie06]

Thank you both...

It's jus no one understands just how terrible this is or how some days at work are literaly like torture.

I am going to lie down with some with my rice baggie and hopefully take a nap as I was up at 4am due to my eyes.

Truly this board has been a lifesaver. I think back to those days right after Lasik when I got more info here than from my poor excuse for an Ophthalmologist/surgeon.

Rebecca, just how bad do dry eyes need to be before a physician will refer a patient for Boston Sclerals anyway? How can it get worse than a schirmer test score of ZERO?

Off to lay down and try some deep breathing and try to stop crying because I know it just makes things worse. Damn, the only time I can really produce enough tears and it doesn't even help...now that's just cruel.

Natalie

[Rebecca Petris]

Rebecca, just how bad do dry eyes need to be before a physician will refer a patient for Boston Sclerals anyway?

Not as bad as yours, that's for darned tootin' sure.

But... a variable in there is the referring physician's knowledge, experience and attitude about sclerals. There are plenty of physicians who pretty much don't refer people for sclerals under any circumstances, even when they're losing their sight. That's when it's time for a new doc. I was speaking with someone today who mentioned that at a corneal clinic she went to, some absurdly large percentage of their transplant patients were reportedly there because of LASIK. I was thinking to myself, I wonder if any of them know there is a nonsurgical alternative?

Deep breathing... Coupla G&Ts ... DryEyeTalk therapy... whatever it takes. Oh Natalie, I'm sorry.

[dianat]

Natalie,

I am so sorry for you. I know the torture you are in, and the hopelessness you are feeling. I don't know how to tell you to shake that anger you have at your surgeon, but it would help to put it aside and concentrate on your healing instead.

Do know you can rant here ANYTIME. Pity parties welcome...even for one. Nobody is judging and most of us have been there.

Take good care of yourself. Perhaps some audiobooks, relaxation tapes, prayer...whatever it takes.

Diana

[Natalie06]

Thanks for all the supportive words...

It's supposed to be warmer in Maine this week so maybe that will help. I am also going to try and find a humidifier for work and if they complain, tough luck. I have to have it. Having just celebrated 20 years with my company, I don't think they'll boot me out.

I have ordered my Wiley X with my prescription but those are 2-3 weeks away but something to look forward to. Being inside so much is making me very depressed.

As far as choices of MD's in Maine? Well, there's one more DES specialist nearby but he's in the same practice as my current MD and that could be awkward. He's also the Chairperson of the AAO ethics committee so he almost certainly already knows my name and my situation given that he would have been involved in the challenge I submitted against my surgeon. Now, that could be really awkward. Or not...I don't know.

I found an excellent article about Dry Eye by another MD here in Maine:http://www.riverside-eye-center-main...yes-maine.html

Norway is not nearby but I may call for an appointment. He sounds very intelligent and I can at least find out if he has any experience with Sclerals.

Okay, today is going to be a better day. I will make it a better day.

Natalie