Lucy, wow can I relate

[charon8]

Lucy, hi...I haven't been here for awhile, but I just read your post on your reluctance to chronicle your Boston Scleral Lens experience. Like you, I am also wary of doing this, as each case is so different. I've had mine for a year and also went in for my 1 year checkup in Sept. I was supposed to get back to you on how it went, but then a host of other physical problems cropped up and I never got a chance....about 5 things wrong with my back prevent me from doing much computer...hoping to get them resolved over time.

I am now 56 and getting along with my lenses,and so grateful to have them, but I wish they could do more. And,I think you said, it's a matter of being able to open our eyes. Without my lens, I would be blind: my eyes are Sjogren's plus a (permanent) bad reaction to a med, and bone dry. The uncovered areas are a killer, about 25% of each eye is not covered by the lens and the pain is often disabling in intensity. My eyes would be much worse w/o the lens. She (Dr. Johns) said my eyes would take a bigger lens, but they never put them in. I wear my lens 13 hrs a day, the rest of the time I am without sight, can't open my eyes.

For dry eye sufferers...life is such a struggle. There are a lot of us out there in varying degrees... YOU ARE NOT ALONE! My life seems now a daily battle for survival from pain. I can't take pain meds...makes the eyes even drier...if possible. Oh, sorry if this is a depressed, rambling letter. There are fairly good days too, considering the situation, which is never good. Does that make sense. Am I making any sense?

So...for anyone considering this lens...everyone will have a different experience. For me, it's been a Godsend, but I still struggle on a daily basis,
because of my eyes being so very dry.

Take care & you will be in my prayers.

Charon

[Lucy]

Hi Charon-
Glad you posted. In addition to anything I posted last year about the scleral lens, I have more problems and some more reasons for my predicament.

Just diagnosed with Sjgrons a couple of months ago. Duh! My problem began 7 years ago with lasik surgery. Don't need to fill in the time in between. Dry eyes, pain, trigeminal neuralgia, disability retirement, blah, blah.

I've had additional changes in my eyes and right now my lens are almost unwearable. I will have to make the trip to Boston again and this will be my third time (including fitting, consult). This is an expense of $1,000 each time not including any charges from the BFS. One just doesn't put these lens on and walk into Heaven, in most cases.

I know how desperate some people are and how painful this all is. Whatever the reason for your dry eyes: lasik, other surgery, menopausal, other meds...pain is pain. Many of these folks do get better with time. I can't say how many people have come and gone, never to reappear here. Lots and lots. Only a few of us are long-time lingerers.

It's becoming apparent to me, personally, that throw an autoimmune disease into the mix and it's just not dry eye any more. It's just not pain anymore. You can look into the future and expect that nature will not cure you just because more time has passed. With Sjogrens', you will become more dry as time goes on. I am surprised at how much thirst I have that I didn't have a few years ago. I can't drink enough liquid. Now, I'm rambling, but our eyes will change as you know. Nothing will remain constant. I am getting systemic matters under control now and hope to visit BFS in a few months for refitting.

[20/20_Hindsight]

From another "long time lingerer".... My dry eye has been quite severe for 6 years since Lasik surgery. After all these years, I still suffer endless corneal erosions and very painful eyes. It is just a way of life and nothing seemingly can be done about it. I, too, am an autoimmune disorder sufferer and did have dry eye before surgery. The Lasik pushed me into another whole league unfortunately. Everything is a struggle, with bad vision from the Lasik surgery on top of everything else. I just keeping hoping for a miracle drop or treatment for dry eye to come down the pipeline. One day at a time is all we can do and try to enjoy the "better days of the bad days" with dry eye pain and blurry vision.

[charon8]

From another "long time lingerer".... My dry eye One day at a time is all we can do and try to enjoy the "better days of the bad days" with dry eye pain and blurry vision.

How true that is !! I have learned not to take one second of feeling at least a little better for granted!

Lucy, yeah, that dryness is horrible to say the least. Every night I feel like I have run a marathon. I hope the Sjogrens World website offers some help.
The SS foundation sends am informative newsletter, you are probably receiving?

Got to get off the computer, oh my aching back. Just DX with a stenosis,
degenerative disk disease, herniated disks, arthritis, osteo, blabbity blab blab.
ETC. Both ends hurt now. The middle seems fine LOL.

regards,
Charon