Kia Ora, a blessing from New Zealand.
I'm just new to this website and thought i'd introduce myself. My name is Mike, I'm 52y/o and i live at the very South of New Zealand, the place i've always called home. I work part-time as a Chaplain but most of my mission is with folk that suffer chronic illnesses and disabilities, and I do this all online from my home.. I live with (spastic) Athetiod Cerebral Palsy(CP) as the result of a very traumatic birth. I also live with hearing and speech impairments and hearing aids plus I use an electronic communication device to speak for me. Other ailments are: asthma, dyslexia, fibromyalgia, chronic fatigue, achy joints, raynaud's, short term memory deficit, plus I may now have Sjogren's.? My first blood test showed I have Sjogren's but my second blood test a month later, showed all negative but my ANA was up slightly.
At present I'm struggling with extremely dry eyes that feel like they are badly sunburned and sandy, plus nostrils are very dry also. My mouth has always been dry but this has been from the medications I take for my disability so I always carry a water bottle with me on the side of my wheelchair, and I drink every hour so I don't really get a dry mouth until the first thing in the mornings. But sometimes my mouth and tongue can get very raw and especially in the mornings. I have had dry eyes for almost 18 months and i've tried a lot of different eye drop, eye washes but now find Poly Gel lubricating drops do help but only for about 2 hours.. As my CP affects the dexterity of my limited hand function I can't put in my own eye drops, so I have to rely on others to do this for me.. It is so frustrating when I really need more drops and I'm alone by myself, but to date I haven't found any other way to lube my eyes other than eye drops.....
i see an eye doctor at the end of April but I don't want to take other medications, as this can often upset my other med's I already take.. To-date my eyes burn constantly as if they were on fire but find some relief from a warm washcloth folded over my eyes for an hour helps and I'm now wearing my rap around sunglasses all the time.. It gets painful in direct sunlight or any glare is painful too.. I have my computer screen on black with yellow text, plus I use a larger text to see as it's easier on my eyes.. I find a darkened room more easier to work in and my blinds and drapes are always closed in my study, where I use my computer.. I'm not driving at present as I have blurred vision so that is very difficult on my ability to go and see other family.. I have been using Lacri-lube eye ointment my Doctor proscribed for nights, but most days I now use it as it's the only way I can find any comfort.
From what I've learned from other Sjogren's folk, puntal plugs would be helpful and I'd like to get a pair of Moisture Chamber Goggles that have a good elastic head strap to keep them well in place.. I'm also light sensitive but I still need to work outdoors. so I'm not sure what colour my prescription lenses should be? I know most goggle glasses aren't that attractive but I'm not that worried if they will help..
If anyone can perhaps guide or suggest any other ideas I'd be most grateful. Mike
Hi Mike
I'm really pleased you found your way here. I don't use the moisture chamber glasses, but I know some folks here do, and I'm sure they will come along and give you some details. Welcome to the family.
Kathyx
Hi Mike,
Have you heard of Lacriserts. They are prescription so ask the eye doctor about them. See if he has samples you could try. You put them under your eyelid once a day and they provide tears all day. That might be really helpful in your case. I have plugs and they work well but I still use eye drops several times an hour.
Are your caregivers using the preservative free drops in individual vials? Long term use of bottle drops can cause preservative build up which is irritating as well.
I wear 7eye sunglasses. They have foam air shields and work very well. When I take them off I can feel the difference in humidity. They are really comfortable too and only somewhat dorky ;) I do believe you can get prescription lenses for them. I can't link a retail site but search for them.
I would recommend consulting an occupational therapist. They are specialists in helping people with activities of daily living and can assess your gross and fine motor skills.
Hi Mike
Just wanted to say welcome
Cheryl
Hi Mike,
I'm sorry you're having these dryness symptoms on top of everything else. There are two things which help my eyes the most (beside Restasis drops twice a day).
The first is I wear sunglasses with the foam collars on the back (WileyX, 7eye, etc.) whenever I step outside. I have some with light-changing lenses so I can wear them in any light (except they don't darken in the car). I also have some cheap Onion Goggles which have clear lenses, for our dark Seattle days. These keep the wind off my eyes.
The second may be harder for you unless you have some help. I cut out circles of Glad Press N Seal (kitchen wrap with slight stickiness on one side) and press them over my eyes after putting in nighttime drops (they work even without the drops). I can peel them back at night when I need to get up. My eyes are very moist in the morning and it's a great way to start the day.
There are also night-time moisture goggles which might be easier to manage. They also work with or without nighttime drops. Many people like them, but they're a little intrusive if you sleep on your stomach.
There are also scleral lenses, which are large contacts which extend over your iris onto the white part of the eye and have a small reservoir for fluid on top. This is new technology, but some people love them. They're quite expensive, but some insurance covers them. Limited number of places have them (bostonsight dot org)
A good resource for more dry eye specific ideas: dryeyetalk dot com/forum (discussion of scleral lenses, etc.) There is also an associated shop for supplies.