Daily Check-In

[Judy]

Hi Rebecca,
I hope things improve for you REAL SOON!!! Judy

[Rojzen]

refraction; this will be a distant memory

Hi, Dear Rebecca - - So, so frustrated to see you are struggling with this again. You SO deserve for everything to go smoothly and always in a positive direction. There will be a time when this is a distant memory, of course, but it's so hard to imagine that time when you're actively hurting and seeing poorly. Are you un-correctible with glasses, post-LASIK? I ask because I just want to be sure you have every possible back-up available while the sclerals have to be out. I am sure you've disclosed this somewhere, but I am ashamed to report that I don't have your history and status down, in my head. . .

[liz56]

Hi, Rebecca. I am sorry to hear about the flare-up after the flare-up! I know how frustrating this unpredictable host of symptoms we have can be.

So, you have to travel all the way to Boston? I hope that something can be done to help!

Thanks for keeping us posted on your condition, and I hope that this episode clears up for you soon!

[Rebecca Petris]

Thanks Judy, Rojzen, Liz for your support... sure appreciate it

Are you un-correctible with glasses, post-LASIK? I ask because I just want to be sure you have every possible back-up available while the sclerals have to be out.

No backup potential unfortunately. I am only correctible with GPs. My right eye is around 20/70 and has a lot of distortion from 'higher order aberrations' but no refractive error to speak of. The left is a bit myopic on top of the aberrations, but if I can't wear the right scleral (I'm right eye dominant), I generally don't wear the left because it is too disorienting.

[Rebecca Petris]

And after talking to the doc

I'm going on a steroid and will be out of the lenses the rest of the week.

I suppose the upside is that if I have to squint to see my to-do-list, it'll be that much easier to ignore

[stella]

Hope the steroid works for you Rebecca - I'll be praying especially
Stella

[Dotanne]

Found a new Dr

Best wishes Rebecca for a speedy recovery. You have been so much help to all of us and we are sorry things are not going so well.
My good news for today is that I have been to see a really good dry eye specialist - a professor from Auckland University Opth Dept - who originally came from Scotland - Prof Charles McGhee. I have blocked Meibomian glands - he couldn't squeeze anything out - and I am going onto doxy. He also thinks I could have roseacea. I do not have much in the way of facial symptoms though. He was very thorough and took time to explain everything and did not rush me out the door even though he was way behind with his schedule. So now once I am on doxy my eye masssages may have some positive result after a couple of weeks.
All this is thanks to son's girlfriend who did that dry eye article that I posted in another thread. She encouraged me to contact Dr Gray(he seemed very helpful too) who very promptly put me onto Prof McGhee.
It has taken nearly 3 years for this to happen. My Lasik surgeon is one of his collegues.
I am feeling much happier and full of hope again!
Cheers
Dot

[Delilah]

Hello Everyone

I would like to say Thank-you to all who has responded to me and apologize for not checking in as often as I should. My eyes are getting worse it seems, fall is coming here in Idaho which will be a bit nicer. I have a new job that has consumed my time and I am so tired at the end of the day I tend to stay away from the computer as I am on the computer all day at work I got tested for Sjroden's Syndrom, Lupus and Diabetes and all my blood test came back normal So the last thing I could possibly have is Crohn's Disease, my stomach doctor had told me he was pretty sure I had it but wanted to do a colonoscopy and endoscopy, even though I have insurance I can't afford to do those tests at this time. I still suffer from my stomach problems, dry skin and of course my dry eyes. I want all of you to know I feel for your eye problems as well because some of the problems some of you have are far worse than mine. God Bless and I will try to keep in touch more often. Your friend D

[Rojzen]

if diagnosis flexible to fibro, 2 new important developments

Delilah - -You are doing brilliantly. . .Taking on a new job, with all that is going on with your rebellious physical symptoms. You will definitely overcome the physical, with that kind of spirit. . .

I wanted to chime in that if it ultimately turns out that you don't have Crohn's, and that, instead, the problem is IBS/irritable bowel syndrome, it may be useful to consider whether you have a more global diagnosis of fibromyalgia. I don't recall whether you have generalized body pain, fatigue, and/or malaise, but it is now well known that fibromyalgia very often comes with IBS. . .In turn, there are a bunch of new fibromyalgia therapies that are proving to be real breakthroughs, which may even help tummy and eye symptoms, along the way (and yes, DES has also been linked to fibromyalgia; this I learned from doctors at Wills Eye Hospital). . .

Anyway: the two fibromyalgia breakthroughs are Lyrica (a pain medication that is actually an anti-convulsive, I think) and over-the-counter Guaifenesin (a mucolytic that has provided outright astounding remissions of fibromyalgia, in many cases where it has been taken long-term and in the right doses). . .For info. on Guaifenesin, just surf anywhere online for that term coupled with fibromyalgia. . .There's a whole movement of "fibromites" who swear by the stuff (along with sufferers from Chronic Fatigue Syndrome and IBS). . .

Will wait to see your next checking in. . .You are an inspiration, you know. . .

[calli66]

I got tested for Sjroden's Syndrom, Lupus and Diabetes and all my blood test came back normal So the last thing I could possibly have is Crohn's Disease, my stomach doctor had told me he was pretty sure I had it but wanted to do a colonoscopy and endoscopy,

Great to hear from you Delilah!

I am going through a bunch of tests myself right now, too--for sjogrens, lupus, etc--the autoimmune stuff. I definitely have positive results for auto-antibodies. I also have had a tendency toward Irritable Bowel Syndrome for many years and my own personal theory is that bowel permeability lets certain substances into one's blood stream. And this starts up the auto-immune response.

It's good you're getting tested for all this when you are young, so that you can make diet changes and get treatment early---and get stable. Is there a connection between bowel/digestion problems and dry eye? I don't know, but I suspect there is. I remember Accutane Jay--here on this forum--thought that there was a connection. Haven't heard from him in a long time and I often think of him when I am pondering my own dry eyes and health issues.

I found this website: Foundation for Integrated Medicine---and this article
http://mdheal.org/leakygut.htm
which made a lot of sense to me.

Somehow, most doctors, even if they are very good, don't have the time or interest in seeing how all our symptoms might be "connected." And also how we might get stable by making changes in our diet, our social life, etc. I'm working on the diet part (giving up coffee, dairy, etc.--seems to help me), but I still have a lot of changes to make toward a more healthy social and family life.

Take Care and stop by here soon!

Calli

[Delilah]

Thank-you Everyone

Thanks to all of you for responding and caring so much The Fibromyligia I am not sure, I am tired a lot but maybe it's because I don't exercise? I recently started dieting and have lost 11 pounds, so I am trying to get my diet back in order, my body doesn't ache like the symptoms of Fibromyligia but I do suffer from erythema nodosum, painful nodules all over my legs and I take steriods here and there for them, Crohn's is linked to the erythema nodosum, it occurs mostly in women. Yes I am glad I don't have any of the other things they tested me for but being so young I still hate feeling like I am 80 Goodnight friends, Your friend D

[Lucy]

THIS is where the action is!!! I just read the last few posts and need to come here more often.

Sorry about your painful eye(s) Rebecca. Hope you're ok soon.

Delilah, sorry to hear you are having some (more) problems. The rheumatologist who tested me (and the results were positive) told me I'd probably had Sjogrens for 7 years!! Knowing that, late last year, have been on systemic meds and it has helped alot. Unfortunately, the eyes just don't move "up" on the scale. When I think they are at "0" they get worse. Maybe we can start talking about -10(below).

Nice seeing you post.
Lucy

[Delilah]

Hello Lucy

Wow didn't know you had Sjogrens, I thought that the meds they gave you for that would help the eyes, I know that one of the meds they give you for Sjorgens can cause excessive sweating, I actually had a perscription for one of them from a doctor but couldn't afford it, it was too expensive even with insurance. I really thought that I had Sjorgens as I have really dry skin, eyes and mouth, always thirsty but I guess that is just how I am? My eyes today are at their worst and I am furious inside, I feel so bothered, I can't rest and I can't relax as I am getting up every 5 minutes to put in drops and pull these strings of mucus out of them

I have to go shopping today and I just feel like blowing it off, but I must do what I have to do no matter how bad my eyes feel. I will be 32 next month, this year marks 4 and a half years I've been suffering from these eye problems. MGD, Severe Dry Eye and Lattice Degeneration along with the wonderful mucus strings that drive me nuts, I've grown use to it throughout the years but somedays, like today it just feels like I can't handle it and I am Thank-ful for you and this website and everyone for letting me vent when I need to.

I am happy to know that there are others out there who actually "understand" what I am going through and can sympathize with me as my other friends really don't know what it's like. My friends know of my problem and understand to a point but all of you wonderful people are the real ones who really know what it's like to live every day with eye problems. Others don't understand how hard it really is and what a burden it is, going somewhere is a hassel, making sure we have our tissues and eye drops and goggles and glasses So FRUSTRATED!!! I think we all have made the eye drop companies happy as much as we have to buy.

Im sorry this is such a long post but I just had to vent, I buy my preservative free eye drops at Wal*Greens by the box, they are the generic ones but it's the only kind I can use and the only kind that make my eyes feel better. They come in 70 small viles and it's $15 a box!!!!!!!!! I have no idea how many viles I go through a day but I know that I probably have to buy at least 4 boxes a month. I don't use the drops at work since I wear make-up but as soon as I get home the first thing I do is bath and wash my face and put the drops in. I have no idea why I got this problem and no doctors or specialists can explain to me why I got it?

When I went to the Moran Eye Clinic in Salt Lake my doctor just said that sometimes things just happen and they don't know why, he compared it to someone being perfectly healthy then one day waking up with cancer. Dr. Taben is a wonderful doctor and he was the only one who really showed he cared what I was going through as I cried my eyes out in his office, many other doctors I went to didn't care and didn't take the time to even try to explain to me what was going on. When they did the eye strip tests with those paper things I wanted to die, when they went to pull them out my eyes were so dry the papers were stuck inside my eyes, after they pulled them out my eyes were burning on fire.

I have been procrasinating on going to the eye doctor this year but I will go soon, well I better end this as it's getting too long. Thanks for listening and feel free to vent to me I will listen. God Bless Delilah

[Eli]

Delilah,
Sorry to hear about all of the curveballs life has been throwing you. I have been feeling pretty angry myself lately. Nice to finally hear from you. Just an observation regarding your recent posts....
If you feel the need to use eyedrops up to every 5 minutes, then how are you able to pull off an entire (8+ hours?) work shift in front of a computer without using them? I know personally that in a air-conditioned office environment I would be borderline psychotic from the pain after 8 hours without any drops and not productive at all. Maybe consider using them at work? It would probably help keep you a little more comfortable, right? Happy Birthday in advance!
Eli

[Delilah]

Thanks Eli

Well at work I just have my little mirror and tissue and when the strings appear I take them out, my eyes do get dry but I deal with it, sometimes I wish I wouldn't use eye-make up but I use the allergy kind. If I were to not wear make-up I wouldn't get any work done by applying the drops all day long, I think I tend to bother my eyes more with the drops, the "mucus fishing syndrome" kicks into full gear when I am at home. Air conditioners are only blowing in the summer here in Idaho as we have mostly cold weather but yes it did bother me a lot this summer It's now the beginning of fall and it's getting to be a lot cooler, fall is one of my favorite seasons and our colors are beautiful here in Idaho, there is a place I drive to called Lava Hot Springs it's about 11 miles away but the drive is just gorgeous, it almost looks like a fairy tale landscape, the colors won't be in full effect until about mid-October.

Thanks for the Happy Birthday, I can't believe I will be 32 I know that may not seem very old but I feel like an 80 year old lady at times trapped in a 31 year olds body lol. I was born sickly and have many other medical problems especially with my ears and sinuses, I still have tubes in both ears to help drain mucus and will always have them till the day I die. I've been sick with the flu and it's a lot harder for me to get well when I get sick, besides dealing with my bad ears all my life it sucks having to deal with my eyes now, I would give everything I have including my nice car just to be healthy, people just don't know how lucky they are that are healthy and have no medical problems, they take it for granted. Well I better start getting ready for work, Thanks for listening. God Bless D