:-[Ok, so just yesterday I was saying to the board that I didn't have the dry mouth and dry eyes, but had multiple other symptoms with my Sjogren's....Today I wake up with my eyes feeling like they are full of sand. I can't wear my contacts, had to take them out. I was hoping that it was just the contacts. WRONG. My eyes fill like my grandson dumped his bucket of sand from the beach in them. How on EARTH can I go one day without this and the very next wake up with it?? My mother, who I have always thought to think I'm a hypo, thinks it is power of suggestion. She says that because other people on the board have it and I have been on here that I somehow "induced" myself to have this gritty eyes. What a bunch of crap. Am I going to have these forever? How or what do I do for them? Am I ever going to be able to wear my contacts again? Before today I have had blurry vision. I just attributed that to maybe my prescription changing, but I went to the eye doctor for my annual exam right before getting my dx of Sjogren's last week. Needless to say I am finding another Opthamologist. He did like a 7 minute exam. Didn't do dialating of the eyes or anything. Didn't ask for history, etc...I know I'm rambling. I am a basket of nerves today. To be honest I am really pissed. When I first got my dx last week I was actually happy. I know that sounds weird, but I was happy that someone actually validated how I was feeling and I wasn't just, "getting older" or "obese" or "lazy". I want to scream right now and pull my hair out. Any suggestions to help me through this?
Thanks,
Becky
Oh Becky, don't pull your hair out, you may need it later down the road. ;D
Oh yes, I know what Mom's are like, mine was the same way. Same words to my Mother's song also.
The only advice I can give you, is take each day as it comes, deal with it and move on. You can't worry about tomorrow until it gets here, if you do you will drive yourself nuts in a very short time.
Hang in there gal, there be better days acomin'. ;)
Hugs, Pooh
Pooh is right,, you just have to roll with hte punches,, my eyes have been dry so long I foret what its like to cry ,, Emotional movies used to see me crying my eyes out,, now it seems I have become more cynical,, I;ll watcha movie with my wife and she will be crying and ask me,, why arent you crying,, its so sad, I tell her, whats the use,, I cant cry tears anymore,, so why get emotional about it,, this darn disease has left me very cynical about life in general.
But thats just me,
Your eyes may have been drying all along, and overnight you just reached your personal threshold...kind of like "the straw that broke the camel's back". The fact that you had some blurriness may have actually been a sign that you had reducing tear production, and at some point in the last 24 hours it "crossed the line" from annoying to painful.
im going to sugget we all mass lallucinate about seeing the loch ness monster, and ill bet my money tomorrow no one will have seen it.
Mothers are wonderful creatures i know mine is :D
Yup its poosible to not have a certain symptom one day, have it the next and it be gone again as quickly, its a strage illness indeed.
contacts id not put in right now, and while i dont wear themj myself i know many say they cant wear them, id not put them back in till youve seen your optician, even then they are likely to dry yours out. I use hypromellose eye drops , have done for 30 years now.
see your PCP and get some drops and get their advice, but id say leave the contacts out for now.
scary ?? you bettcha, and its something no one here could say theyve not felt, but in time that fear comes to acceptance, and you find a way of coping, i know i have now, you stumble along in this illness and day to day is the only way to cope
T x
Becky and Pooh,
I think we should get our mother's together and start a choir!
Yes, I'm another who was able to wreck my immune system with my mind. My brain is so powerful it formed tumors in my salivary glands!
Becky maybe when your brain is more advanced (like mine) you will be able to make some tumors too!
Seriously, honey, you are not a hypochondriac. I'm so sorry for what you are going through. I have found my eyes wax and wane with the dryness.
Truthfully there is no way to predict whether you will be able to wear your contacts again, but I kind of think you will, except when you are in a flare...at least for the next few years. Your diagnosis is a relief but also a bit of a shock and has probably got your symptoms flaring up.
Janna
Hi
I hope this fines you in a better frame of mind.... I know just what it is like my whole family thought I was making things up I think...... In fact they thought my hubby was being way too protective of me..... Oh by the way my grandkids think he is the greatest because he does take such good care of me....LOL
most of my family member are gone now ... and I miss them a lot.... I have only one half sister that is still alive and in the last few years we have become so very close...but both of us have an autoimmune disease.... so that does help us to understand more then most families can....
Maybe those family members that don't understand can learn from reading about it... buy them a book or ask them to go to library to get one... the one I am thinking about might be a good one... it is The Sjogren's Syndrome Survival Guide by Teri P. Rumpf, Ph.D and Katherine Morland Hammitt. Ask them as a favor to you to read it.... You know I didn't know that there was so much to this disease until I read that book.... I am sure there are other's out there too.
Remember to just love then no matter how they think.....Let them have their own opinions.... and maybe find someone else to talk to about your disease.... because you sure will miss them when they are gone.
Carrottop
Hi all, Thanks so much for your advise once again. I am sooooo blessed to find this site. I think if I hadn't I would have gone crazy since the dx last week. Carrot...you are so right about missing them when they are gone. My sister, who was only 45, died three months ago very suddenly. The official documented reason was an enlarged heart with secondary of fatty liver. I too have a fatty liver, and worry about that on top of this new stuff. I'm not sure if all of my liver enzymes being high and stuff are related to Sjogren's but I would bet they are after reading so much on here. You all are a God send. I check the boards every few minutes at work. I am going to go out to the Library and get the book that was suggested. I found that before I found this site I wasn't finding much more on the internet other than this is a dry eye and dry mouth disease. When the doctor handed me a pamphlet on it, I thougth she was crazy. I didn't have dry eyes and mouth and that's about all it went into on the pamphlet. As I said, I learn so much from these boards I will contine to read on...
Eyes drying out suddenly is not something you have imagined. I can have times when my eyes are not that bad and then other times they are so painful they feel like the lids are sticking to the eyeballs. Get yourself some gel to put in at night - this might keep your eyes lubricated enough to allow you to wear your contacts. Personally contacts are definitely a no no for me, I am quite jealous that you are able to wear them, but you might find it becomes more difficult if your eyes deteriorate. I use individual doses of eye drops that are preservative free. Don't be tempted to go for over the counter eye drops as the preservative can dry you out worse than ever. I use lacrilube at night. It can be a nuisance to get rid of the next morning, but it can keep my eyes comfortable until mid afternoon without drops. Hope it all settles down.
Beverley
Bev is soooo right about preservative free eye drops! Try not to use them if at all possible, or at least alternate between preservative and non preservative.
Janna