Can anyone help me? I have posted this on the Eye and Vision board, but so far no responses. Boo hoo !
Hello,
I wonder if anyone can help? I have very itchy eyelids, just where the eyelashes are. I am doing my best not to scratch them, but it is driving me scatty. They feel tender and I am losing a lot of my eyelashes.
I have used hypromellose drops, which I use for Sjogren's syndrome and also Optrex liquid in eye baths, which actually cools my eyes down, but after a while they itchiness is back.
I do have lupus and fibro amongst other things going on, but I am not linking this to any of them. I have had lupus for over 30 years and fibro for about 1 year and this problem has only been with me for about a week. This is why I am doubtful that it is in any way connected to these.
I don't wear make up at all, facial or eye, and I don't use soap. I use a soft towel to pat my skin dry around the area. I haven't changed detergent or fabric softener or anything. No different shampoo, so that hasn't gone into my eyes. No room air freshener sprays. I am listing things because I have wracked my brain to come up with something and I can't, so any help or ideas would be appreciated.
Thanks.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 09-22-2005 at 04:36 PM.
My Golden I don't know what to say. In my neck of the woods allergies are what might cause itchy eyes or eyelids and it is getting that time of year here. Mold count was over 90 thousand the other day. No that is not a typo....over 90 thousand.
The eyelash falling out could be thyroid, mine got a lot thinner when I was dealing with that. Have you and compassionman had a chance to look into that? Of course the eyelashes could be falling out if you are itching at them.
I don't know if there is a specific type of problem with eyelids and lashes except something connected to sjogrens.
I guess I wasn't much help, I would think either something on the lupus side or thyroid problems, either one could make you more sensitive to allergies or airborne things.
Try using cucumbers it is cooling and sooths itching.
I have simular issues. Its annoying. I lose lashes when i scratch. Even though i am very gentle. I have very dry eyes as well
Thanks for your response. I had a consultation with my lupus doctor today. It was an extremely difficult session for me. One of the things I asked him to do was look at my eyes. He said straight out "acute blepharitis". He recommended that I use witch hazel or baby shampoo twice per day on a cotton bud to clean my lids. I believe that the baby shampoo (only 1 specific brand) is used a lot as a cleansing treatment for the lids, but I am not going to use that. The witch hazel is my cleanser of choice.
I haven't hardy itched my eyes, the lashes were coming out even after I had gently washed my face and patted my skin dry. Very odd. Remember, I had no eyebrows because of the chemo, now my eyelashes are disappearing Eeeeks !!
The type of blepharitis that I have at the moment is not caused because I have lupus- just for a change !! Apparently we all have the bacteria named staphylcoccus on our skin, but if they flake, just as skin and debris from our skin does, and then migrate into a tender area, say a cut or scratch or something like that, being bacteria they cause infection.
I actually got a response from the Eye & Vision forum this morning, so I was amazed when what the poster of the reply had said was then confirmed by my doctor.
At the moment mine is the dry itchy skin at the edge of my lashes, but at times I have oily little lumps in the same area. These little opaque lumps are meibomian glands which are blocked. That in turn is making my eyes irritated because the edge of the eye is getting too dry, which has nothing to do with my Sjogren's though, and then the staph/bacteria migrates onto/into the lids. Wow, trust me. The worst, most upsetting ever lupus consultation and now this as well.
Oh by the way, I have told my husband - yes I know is sounds harsh, but it's what I have to do as he says "don't worry about me" - that he is going to have a thyroid test. Guess what Glojer, my lupus doctor said to ME today "I want you to have a - you've guessed - thyroid test. Yipee !! It was the only giggle I had at our meeting.
Take care my friend.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 09-23-2005 at 03:25 PM.
I think maybe if it isn't sjogren's that is causing your eyes to be dry and you have itching, it might be worth you asking your doctor about my diagnosis. My doctor was right on the button with it just by looking. Of course the respoinse from the E&V board was tremendous too.
Take care.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
dear golden,
i am so glad your doctor helped you find a solution for your pretty eyes. i get allergies in my eyes, but it is nothing compared to what you speak of. i am sending butterfly kisses to your gentle eyes. be well sweet eyes, my friend needs you.
i too have dry eye. the doc put those little paper things in my eyes to check moisture content. when he came back he had to peel, yes peel, them from my eyelids. he said it was a first for him and sent me off with eye drops. as long as i remember to use them i am fine. it is the remembering that stumps me, giggle.
the last peach will fall today. the trees are turning. leaves fly on the breeze. brother and i are off to a pear festival across the big lake. it is a small town affair. craft booths, pear yummies, an antique tractor show. that sort of stuff. pear butter here i come! the musky smell of harvest is strong in the air. the grape crush is on, even tho the grapes did not sugar up enough. rain is on it's way.
my dearest old girl please give that sweet old man a hug from this lady on the lake. and for you both a kiss of autumn breezes.
peace,
bluelakelady
I am in a whirl at the moment. My lupus consultation was the worst ever but with the best results. Make sense? I threatened to walk out, I was so heartbroken, crying like I was a child. It was awful.
I have so much going on in my mind, so much to try to come to terms with and so much to go through emotionally and physically again. Things are hard. I don't want to face what I have to do, and I feel like I have failed in my quest to be on top of everything. Just me I suppose.
The doctor was superb. He made it clear that he thought I couldn't carry on the way I have been doing. I had to give time to me and to accept that I wasn't invincible. He said I also had to accept that my depression was off the scale. At that I exploded and then just broke down. I asked him if he thought I was imagining being unwell at this time. He was not phased and said "How on earth would I think that you could make up heart attacks, heart surgery, MNM and so on. Also, not long ago gall bladder polyps, recent cancer scares, kidney problems, vasculitis, fibromyalgia etc. Oh, and of course the usual SLE problems you are having. You have not given up, you have got on with everything. Your case is very complicated with a lot of medical problems. Now is the time to accept help and face up to the fact that you are not well. You don't have to be strong all of the time, you have to accept that you cannot go on like this".
Lots of other things were said, but I am having a hard time accepting that I cannot win, and I feel like I am losing the battle to keep my body going. Things are getting worse, so I am at a loss of what to do. I need to do a lot of thinking and accepting that I am not Mrs. Strong Coping Woman all of the time, and I need to sort things out in my mind. Emotionally I am finding things difficult and again I have to accept that perhaps I need help with this too.
Well that is a breakdown – excuse the pun, but I felt as though I was having one - of my consultation on Friday. Lots of other things were said, a couple of things surprised my compassionman though, because I always feel that if my problems are not putting me in hospital then they are not too bad, and I have no need to tell him and worry him. They came out i.e. kidney problems and vasculitis, but I explained my “lapse” away to my husband, he wasn't happy that I hadn't told him but he was ok. Then I apologised to the doctor for getting angry with him and he said "No problem". He knows it's hard for me to accept that I am not in control. The attendant Nurse was wonderful, we hugged and she was upset for me, I cried again.
In the end, it will work out, but I cannot face depending on anyone for any type of help. By this I mean outside of my home I might have to go and talk to some people and get their hands on analysis of me and what they feel I should be doing now things are at this stage. It's always been me and my husband and his wonderful support of me. We work together and we get on with our lives, but now others want to come in and be part of my life. I don't want that, I want to invite them in, not have them pushed on me. I am feeling a bit strange knowing someone wants to look into my life and perhaps change it. Odd for me to accept that this is going to be happening, but only if compassionman and I agree then I will go ahead and do this. My husband only wants the best for me and I know this so this decision is only about us two.
Anyway, this is me at the moment. Things are difficult and I don’t really know what to do about it all. I am not really thinking too much about how my life might be changing. I am me and I can't think of being any different to the way I am now, I am here for others and it's odd to think that someone wants to know how I feel, what I want to do and then trying to tell me what I should perhaps be doing. This might explain Blue, why I am a bit jumpy at the moment, I don't know. I tend to get emotional over the simplest thing and take offence very easily and get hurt. Wow, what a confession from me hey !!
Yes, the sjogren's problems are enough to put up with, now for me to have this blepharitis puts the icing on the cake. Never mind, I have more to think about, so by coming here to talk with you I will come through this. I do feel though that this is the biggest challenge to my emotional state I have had in a long time. Or maybe it is the first time I have actually admited that I am having problems emotionally and not just physically. My compassionam is tremendous. He actually felt he could mention a few things that he had noticed about me lately. I was surprised, but glad that he did. What he said made me stop and think and realise that he is right, some things have been going awry with me lately and I haven't latched onto them in a proper way, just put it down to having an "off day", like we do.
Anyway my dearest friend, I am so pleased that you are fitting right into your wonderful new life. It is so strange you talking of the pear festival. This weekend here on my lovely island was the apple festival, same things going on just a different fruit. It must be so very relaxing for you now to be able to go out with your lovely brother and know that this life is the one you have chosen and will enjoy. I love the sounds, sights and smells of Autumn, so I am eagerly awaiting this to come into full force. The wind is whipping up here at the moment, and leaves arescattering all over my garden. It's cosy inside though.
Oh I must tell you, we had a lovely thing happen to us a couple of nights ago. As I have said before, we only have red squirrels here where I live, and even then the sightings of them are quite rare. Well, the evening of the hospital visit we were going home down one of the little lanes, and lo and behold a beautiful squirrel leapt across the road, nut in mouth and scampered up a tree stump. It was a lovely sight. Just about a mile down the road, another one running across the other side of the lane. Certainly made our night. I never cease to marvel at this type of thing.
Thanks for your support Blue, I will speak to you soon.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 09-25-2005 at 09:30 AM.
Golden may I put in a few words of encouragement here. I know how hard it is to admit you can't do all the things you once were able to. That is just your physical body though, what is really you is your heart, your soul and your mind. That is what we all love and cherrish about you and the wonderful posts and advice you give to us.
You are not the sum of all your illnesses' you are the sum of all the love, the compassion, and the spirit of your willingness to give and share with strangers who type on a screen. You make them friends and you give of yourself and send them blankets to soothe and warm their souls.
Anyone who has such a wonderful mate as compassionman has a spirit and soul that shines with beauty for all to see. Give yourself a break, know that no matter what comes about down the road you will always be able to find the laughter and the joy of life and there will always be a red squirrel sitting on a tree stump waving at you.
My dear Golden, I have realized over the years that we strugle over
the unknown. On this board we can be whoever we want to be, sometimes
leaving out reality and creating a dream world where we can find moments
of sheer joy and peace, but the real world is often different and filled with
the need of letting go the emotions that have such a hold on us. Many of us,
myself included, want to control our destiny regardless of the price we pay.
Many years ago I was sitting on the beach watching the sea gulls as they
fought the wind to land on the shore....finally they relaxed and let go and let
the wind drift them where they wanted to go. How wonderful it would be if we
could trust in a higher power to safely and gently land us where we long to be.
God has blessed you with a wonderful mind and spirit and I have no doubt you
and your loving husband will find the answers you are seeking. You are such a
powerful inspiration on this board and we all listen to you. My prayers are with
you on this new journey.....You may be surprised at the results of letting others
into your ''real'' life. My island friend, please take these words in the love they are
sent.
Bilij
My world is richer because of you and the others here who make me realise I am never, ever going to be without love, no matter what this new and frightening time ahead brings.
We are all so fragile when we let our guard down aren't we? No matter what comes, dear bilij, I will remember your words and keep them in my heart.
Thank you just for being you.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
dearest golden,
there is nothing to fear but fear itself. someone from your neck of the woods said that once. there is much fear in speaking your inner self to an "off islander", so to speak.
you are right, it is time. that time comes into all our lives at some point. mine was 9 years ago. yours is now.
i discovered the peace that comes when we choose to stop being wonder woman and be, quite simply, a wonderful woman. there is such a sense of relief in letting go of the undoable. we all take our turn in life. sometimes it is our turn to dance and be well. sometimes it is our turn to sit the dance out. as our bodies wear out it is so important to speak to the inner self and find cohesion within. it is only with peace of mind that we can journey into illness sanely.
you and i have more letters after our names than most doctors. it is what it is, girlfriend. what can you be doing to make the most of it? that really is your next question, yes? mother nature gave you your answer. the squirrels came and told you.
let the people come into your life. you may just meet someone who is my spirit twin. now wouldn't that be cool? depression sucks. there is much emotional healing in letting out the words that you have carried all these years. with more words flowing in every day there has to be a drain plug to pull and let some of those old and new words out.
i know this is not how you would have your life play out. yet here it is, as it is. so, what dear girlfriend is our next step? you let me know and i will walk this avenue with you.
i wish i was not going out of town for the next couple of weeks. i will not have access to a computer to come check on you. i must honor my promise to daughter and grandson. my heart and mind will come to you each morning early, my time. it will be about 4pm your time. so if you have a goose bumpy feeling or a flash of warmth, that's me!
you know, my dear sister, alot of good people spend years in school just to help people like us get thru the rough spots in life. bless them. my helper is gary. he is a shrinker of heads. he assists me in keeping my head small enough to wear my cute hats. in the beginning tho he showed me choices in thinking. never told me how to think, just offered different perspectives. never told me how to solve a problem, we would just walk thru the possibles based on different choices. i learned, for the first time, how to love my body, as she is. i learned to put limits on myself and others. as you know those lessons really helped me get IT out of my life.
by the way, almost ran into IT at the store the other night. brother saw him. we slipped in unnoticed. what a creepy feeling!! not scared, just creepy like when snot runs down your nose and you get it on your hand.
the sky is filled with fluffy clouds and bits of blue. it looks as tho we have many trees here that will turn lovely colors of yellow, red, amber, gold, purple, all the colors of fall. i love the puddles of leaves under the trees. i will come sit in the window with you and watch the leaves fall. we can snuggle up on that sofa that faces the window and share a cuppa.
love,
your bluelakelady
There are several remedies that could help your eye problems - the one that immediately comes to mind is the use of tea compresses. Good old fashioned black tea compresses (cooled, not hot!) have been used for centuries in the Middle East as a soothing relief for eye ailments just as you have described. Prepare a strong cup of tea, cool it, soak a cloth in it and place it over the closed eye three times daily. Make fresh tea daily and store it in a sterile container. As an alternative, you can also utilize the tea bags you used to brew the tea.
Cooled chamomile tea can be used in a compress to help soothe tired, irritated eyes. You may also want to try bilberry, green tea, Chrysanthemum (found in oriental food markets) or Echinacea.
Hope this helps - eye problems with FM are so common - as if we don't have enough issues to plague us.
Thank you so much for all of the tips. I must say that using thewitch hazel has made my eyelids less yukky !! Apparently, blepharitis is a recurring thing to have, but I though if I used the witch hazel until it really clears for the time being, then perhaps using some of your recommended compresses. Brewing tea of any kind will be no problem for me, I am doing it all day long hee hee !!
They might just hold it in check for a while longer. I prefer natural remedies. With my SLE kicking in, things do tend to take such a long time to clear.
I do so hope you are doing ok at the moment. Thank you once again for your help.
Take care.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
I was frantic thinking that I would not be able to get to you before you left to see Gaven and your lovely daughter, and Daddy of course.
To stop trying to be wonder woman and just be a wonderful woman, I thought this was such a tremendous statement to make. I did feel that if I didn't try to make things right for everyone and make sure they were ok, then I had failed and I was not being me. With the words you gave me, I am beginning to realise just what a change of direction my thoughts must go in. I am what I am but I must change me in a way that makes me a better, stronger person for me. Time for me to heal emotionally. Compassionman and I have a lot of talking to do and we have a couple of weeks together now and so we will talk, and no doubt cry, but we will do and know what is right for me and ultimately us.
I have faced up to the fact that yes, I have got depression and I am admitting that it is bad. It is not because it is a sign of weakness or because it has a stigma that I have not admited it before, but because I truly didn't feel that I wasn't coping. I thought it was a hiccup, but now I realise that the hiccups were getting more and more frequent, and now are major. Having said that, the one thing I cannot and will not accept is that I am depressed because of my various medical conditions. This is what has been suggested to me, and I honestly feel that this is wrong. I have been angry about things that have and are hapeening to my body because I am frustrated, but I have never sat and thought "Why me" or "Poor me" so my medical bits don't bring me down in this way. I use my old bod in the way I can and get on with it.
I too like lots of our family here have issues that I coped with at the time, and buried them - or so I thought. They have now surfaced and now is the time to address them. It is the thought of letting go of the strong me for a while, and being someone who can be scared, can be upset and does have a lot of feelings about myself. There are lots of thing that are concerning me about what is to come. Normal things I suppose like how do you get to open yourself up to a counsellor? You have to trust someone before you can talk about yourself. Do they want to dig deep? Do they listen? Do they insist on what they are saying is right? How can they speak to me and think they know me? Have they gone through what I have gone through? Do they honestly think that they know how I cope with my mind and body? These things Blue, are what goes through my mind. Sorry, old girl, I am not asking you to answer these questions, these are just things I think about. You see what I mean, I need to be in control of me. For someone to want to take that away is hard for me.
Blue have you ever lost your temper with a counsellor? I know what I am like, if someone says something that I find offensive or I feel it is a ridiculous statement, then I know I will be me, and ask them to fully justify what they are saying and so on. If they start to look at books to try and work me out, and refer to literature instead of listening to me to try to diagnose the reasons why I am having problems at the moment, I will bop them on the nose hee hee !
I have learned to talk a lot more since coming here. With your help Blue and the help of all of the family here, I have opened up. I have accepted my body and I did this years and years ago as you know. My mind is the thing now that is crying out for love and understanding from me and if I can only give it by speaking to others on how to do it, then this is what I must do. Oh, that I could find a Gary. He is a star. My life would be wonderful to have a Blue spirit twin. Thank you for you unending support of me.
My compassionman also sends his best to you and your new little boy. I will not be speaking to you again before you go, so be safe my friend and drink in with your eyes every little nook and cranny on the baby and don't leave a thing out so that we can love him and see him when you come back.
Thank you Blue.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 09-27-2005 at 06:08 PM.
Golden we are here for you while blue is away, strength and love and support and anything and all you need. I will do my best to help and hold up this end until blue returns.
It is not easy to bare your soul to a stranger, I have never done it and don't know that I could, so I feel your reservation and thoughts of what could happen. But please keep letting me help and support you and send you energy to help you through.
thank you glojer. you have lifted a worry from my shoulders. you are a true friend to both golden and myself. how forunate our lives are, and so much richer for having you in it.
love,
bluelakelady
ps. it really is not as hard as you would imagine. having someone who shuts up and listens for 50 minutes without judgement, without emotional attachment, with years of knowledge to assist you in your journey, is precious to any person dealing with life long changes in health. for me it was like kick starting the journey to sanity, peace, joy, acceptance, perserverance, and finally finding the me i was intended to be before life happened. i am more my pure self for shedding light in the darkest reaches of my memory. that light shines brightest when i am in the depths of pain. when i need it most.
Blue, I think we all could benefit from someone listening and not judging for 50mins. Even me, the person who was told I would never be depressed (by a professional who should know), even I think that it would be so cathartic to have that opportunity to just bare your soul and let someone with the right skills guide you through your thoughts.
Maybe that is what having a few years on me has helped me to mellow into.
Go away with an assurance that I will do all I can to help golden, I think she helps me as much as I have ever helped her.
I am honoured to call you friend. You have helped me for such a long time by joining me on my journey of discovery, you have helped me to talk about myself, something that I didn't do before meeting you and the rest of my family here. You have shared my laughter, my tears, my pain, and most of all, my fears. When something that I haven't been able to control has visited me, you have joined me and helped by just being you and understanding what I am dealing with. You do understand because we share so much. You are just like me in that you would never say "oh, I know what you mean" unless you DO know what I mean.
My compassionman and I were talking today, and I said that there is what I call an "invisible thread" that holds me together with my wonderful friends. At times, the thread might loosen a bit, but it will never break. It is always wrapped around us and keeps us close and warm in the knowledge that we will always be there for each other. When I am low, or full of joy, the first thing in my head is that I must tell my family, and you Glojer are such a big part of my feeling that way. I have never felt so wanted as I do now, and you and the rest of my friends here have made me feel this special way.
I am now being given the chance to make myself whole, and I know I must take this opportunity to do just that. I owe it to my darling husband who is my rock, but most of all I owe it to me. I can carry on sharing all that I have learned and gone through both with fibro and SLE, and all of the other horrid things that keep on calling on me, in the hope that it helps others to come to terms with what is happening to them. The thing is though my spirit will not be broken and I will sit and pour out my heart for however long it takes until I feel, dare I say it, emotionally whole again.
This is what this voyage of discovery is all about. Changing me in a good way. Allowing myself to let go of thinking I must be on top all of the time, I must learn to let go of the notion that I must always be strong, not by being weak but by being accepting of my own limitation emotionally.
Dear Glojer, thank you for being there for me. I respect you so much and I am lucky to have such a special friend.
Take care.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 09-28-2005 at 05:29 PM.
I am truly honored that you would say such kind and wonderful things about the relationship we share here. You are right, we share some common problems, but I am better able to deal with mine and the journey I must take to get the proper treatment for the other only because you have shared so much of the knowledge you have learned after all your years of suffering. We are fortunate indeed to be able to come here and feel like a family and help each other.
That invisable thread you speak of, I have used that kind of thread in sewing and it is indeed a very strong thread. It will loosen if you allow it to, but it is impossible to break. Taking that journey into the world of the unknown exploration of feelings will be a challenge I am sure you will meet. Compassionman will be there to support you and I will be there and so will so many others on this board that call you friend.
These last couple days have been especially tiring for me and it is late here, but I wanted so much to chat back with you. I do hope I have made some sense. It is turning chilly here and I am going to use my orange blanket and wrap myself in it's warmth and send soothing energy to you while I dream about how beautiful your island is.
This is really driving me scatty !! 
Re: This is really driving me scatty !! 
