Scleroderma Information » Scleroderma » Sjogren Pen Pals
Question:
Is there anyone in this group with Sjogren’s who might be interested in sharing e-mails for support? If so, please write me at marsh…@earthlink.net Thanks! Marsha
Response:
Hi Marsha, I would be very happy in sharing e-mails . I have SS and have been desperately trying to find someone out there with this illness. HURRAY FOUND SOMEONE ! Heather B
Response:
Marsha and Heather, Count me in – I was diagnosed with Sjogren’s ten years ago. Would love to chat! Debra
Response:
In article <38906…@news.together.net>, "Debra Backus" <de…@asleepinthewoods.com> wrote: > Marsha and Heather, > Count me in – I was diagnosed with Sjogren’s ten years ago. Would love to > chat! > Debra >Me too! Have SLE w/sjogrens and would like to participate in
exchanges. Sent via Deja.com http://www.deja.com/ Before you buy.
Response:
Hi Everyone, I also have SLE with secondary Sjogren’s, and wicked dry eyes. Last week I had my tear ducts pluged, the Opthmaolgist said I no longer have any tear production at all, so I’m dependent on artifical tears. She swiched me from Thera-Tears to refresh plus, since thera -tears are used to stimulate any remaining tear production. Well, I bought about a mounth ago 100 boxes of thera-tears, and only three boxes of refresh. If any one would be interested in an exchange, or would like some thera-tears at a very reduced price, please contact me back channel. Please, dont flame me, I don’t work for any company, I’m just up to my neck in unusable thera-tears. I would love to communicate with fellow suffers of the dreaded dryness. Mary
Response:
Hi Mary. I was posting to two other Sjogies but haven’t hear from them in wail I quess life gets in the way or something like that. I’ll take some thera -tears. How much would it be? I’m planning to get what you had done but in the meantime I could use a supply. Please post me with info. Heather B
Response:
Hi guys, I’d suspected for a while that I had Sjogren’s, but was only just recently officially diagnosed. I also have SLE, Raynaud’s and anti-phospholipid antibody syndrome. Not to sound like a hypochondriac, but I’m beginnning to suspect scleroderma as well…..I’ll have to ask my rheumy next time. Anyway, I have very dry eyes, sensitive to light, and dry nose and mouth. Right now I’ve got a hellacious post-nasal drip that keeps me up and coughing most nights. Unfortunately, occasionally I cough so hard it triggers my gag reflex….yech. I’d be interested in keeping in touch with some other dry sisters and brothers! Susan
Response:
I’ve got a question for my fellow Sjogies…what’s the proper way in instill eye drops (artificial tears, in this case)? I vaguely recall years ago when I had conjunctivitis that the instructions said not to blink rapidly after putting the drops in….but I’m not sure why. So what’s the best method? Drop them in and then keep your eyes closed for a few? Drop ‘em and blink? None of the above? What works best for y’all? PS Anyone else out there buying drops at twice the normal rate because you end up dribbling half the bottle down your cheeks while trying to hit the eyes? :) * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!
Response:
The best way I found for myself is to put the drops in and close my eyes for about 20 or 30 seconds. I keep my head back most of the time, but I have to use the drops so often, and I am so impatient, the drops end up streaming down my face, lol. I think if you could close your eyes for a minute or so, this might work better. When time permits I will get the cauterization of the tear ducts done. My opthamologist told me the punctal occlusion procedure works for many people but sometimes just the act of sneezing will cause the plugs to pop out. This is why I am going to get the cauterization done instead. Donna — Look to this day, for yesterday is but a dream, and tomorrow is only a vision–Sanskrit Raven Starke <ravenstarkeNOraS…@excite.com.invalid> wrote in message
news:0b524400.e54b7013@usw-ex0103-019.remarq.com… – Hide quoted text — Show quoted text -> I’ve got a question for my fellow Sjogies…what’s the proper > way in instill eye drops (artificial tears, in this case)? I > vaguely recall years ago when I had conjunctivitis that the > instructions said not to blink rapidly after putting the drops > in….but I’m not sure why. > So what’s the best method? Drop them in and then keep your eyes > closed for a few? Drop ‘em and blink? None of the above? What > works best for y’all? > PS Anyone else out there buying drops at twice the normal rate > because you end up dribbling half the bottle down your cheeks > while trying to hit the eyes? :) > * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * > The fastest and easiest way to search and participate in Usenet – Free!
Response:
I still have trouble putting eye drops in, I try not to blink as then they will run done my face. I bought an attachment that fits into the bottle of drops . It’s plastic has an oval shape you put it on your eye tilt the bottle and squeeze . Viola! no wasted drops. They can be bought at most pharmacies. Give it a try!!! Heather B
Response:
I’m sorry to hear you are having so many problems with putting in eye drops. Who’d ‘a thunk it could be such a task, right? 
I have a ritual for putting my drops in and it’s different depending on when i use them. When i have to use them just to get my eyes open in the morning, I just flood my eyes with drops and then keep them closed again for a bit. I don’t care much at that hour if it runs all over me. During the day, I put the eye drops in semi-sparingly, close my eyes, and roll my eyeballs around. Usually, I have to do that twice because they’re always _really_ dry. I also go through lots of eye drops, and my drops of choice are Visine Dry Eyes. I also have to make sure that they aren’t cold. That’s too much of a shock for the poor little guys. What I’d like to know is if anyone notices that first, you’re more tired when your eyes are dry and second after using them it’s almost like an oxygen rush to my brain. Wakes me right back up. This of course depends on just how tired i was in the first place. Just wonderin! thanks, Kat
Response:
Have you ever tried using the nighttime eye lubricants, such as Genteal Gel? Donna — Look to this day, for yesterday is but a dream, and tomorrow is only a vision–Sanskrit Kathryn <cheys…@mindspring.com> wrote in message
news:38b70d61.2106642@news.mindspring.com… – Hide quoted text — Show quoted text -> I’m sorry to hear you are having so many problems with putting in eye > drops. Who’d ‘a thunk it could be such a task, right? > I have a ritual for putting my drops in and it’s different depending > on when i use them. When i have to use them just to get my eyes open > in the morning, I just flood my eyes with drops and then keep them > closed again for a bit. I don’t care much at that hour if it runs all > over me. > During the day, I put the eye drops in semi-sparingly, close my eyes, > and roll my eyeballs around. Usually, I have to do that twice because > they’re always _really_ dry. I also go through lots of eye drops, and > my drops of choice are Visine Dry Eyes. I also have to make sure that > they aren’t cold. That’s too much of a shock for the poor little > guys. > What I’d like to know is if anyone notices that first, you’re more > tired when your eyes are dry and second after using them it’s almost > like an oxygen rush to my brain. Wakes me right back up. This of > course depends on just how tired i was in the first place. > Just wonderin! > thanks, > Kat
Response:
In article <3wEt4.1544$O11.7…@newsfeed.slurp.net>, "Donna Steve" <dj…@hto.net> wrote: >Have you ever tried using the nighttime eye lubricants, such as Genteal Gel? >Donna
I haven’t tried this particular gel, but my opthamologist prescribed some sort of gel for me once when I had an eye infection. I don’t know if I used too much or what, but it just made my eyelids feel heavy all day, like I was sleepy….plus it got on my lashes, which meant it eventually got all over my glasses. * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!
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