Announcement

Collapse
No announcement yet.

So sad this Christmas I don't know what to do with myself :(

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • So sad this Christmas I don't know what to do with myself :(

    I'm laying here feeling very sad. I can hear my kids playing w their Christmas presents and I feel as though this is a dream. A nightmare I can't wake up from. Been dealing w dry eyes since the summer; been to so many doctors finally sticking w dr. latkany a NY dry eye specialist. I've seen him every 2weeks for already 4 visits. He keeps saying my dry eye situation is no where near as bad as most patients he has seen but empathizes w my discomfort. He said "I will get you better, you have to be patient and not focus in it so much" I'm naturally very anxious and I just want my life back :'( this has taken a toll on my mental health, my marriage and my quality of life. Last course of action was pataday drops and was told if they didnt work in 4-5 days to stop them. In light of the holiday being so close I went back to see dr latkanys colleague to try dissolving one week punctal plugs which helped for one day an I went back 3 days later to have the doc tell me they were already completely dissolved. I cry every single day and this could have been the culprit. He said noharm in trying again and put self dissolving ones that will supposedly last six weeks. And now I'm weary of even crying which is my only release. This came out of no where in August and the only thing I could think of is that I was a contact lense wearer for 27 years but so are so many people I know including my twin sister. This has been the hardest thing I've ever had to deal with. I have to continue being a mom, working, acting like everything is ok and I feel like I'm the only one around me is that suffers from this. I feel sad for my children that they can't have a regular mommy. I should be up making Xmas breakfast and hosting and I can't my heart is broken. I had an ok day yesterday because I pushed myself and took half a Zanax. I know sometimes these pills have side effect of drying but I need any help I could get w this anxiety. I feel that because of this I am failing my family. The dr said so go and get fitted correctly for daily contacts so I can wear them three times a week as bandage lenses I don't know for what if my corneas according to him look great compared to when he saw me first over a month ago. I want to trust him guys but I'm not sure he's really trying w me. I mean do any of these docs really try? After all they are not feeling what we feel and we r not their family member going through this. Do they really even know what this does to a persons life? I guess not. Iidon't know how he thinks a contact lense would help dont lenses pull water away from eyes? I just don't get it. All docs say my problem is not oils it could be allergy who knows anymore. I'm exhausted emotionally . He said if I don't feel better after contacts restasis is next and that takes six months to even work! I feel like he's given up on me . I broke down w my hubby and he's out off words and doesn't know what to say or do to help me. None of my family does .

  • #2
    EDIT - novel alert*** Just realized I practically wrote one hehe Hope it's of use to you though! (((hugs)))

    It's sooo hard when your eyes have totally crapped out on you. But the thing is, when they are that bad, they can take quite a while to improve to the point where they are no longer totally messing up everything. So you have to be patient - and I know crying is a release, but when your eyes are doing badly, the tears you cry are too salty and will increase the inflammation on your ocular surface, and that will cause you to either have further setbacks with your eyes, or make it harder for them to improve. So try your best to not cry - believe me, not crying makes a difference.

    I think Dr. Latkany is a good doctor to be seeing, and it's great that you live close enough to see him regularly. He used to post on these forums semi-regularly - plus he wrote a book on dry eye (it was a good one - I bought it and thought it was fantastic) - seems to me a dr. wouldn't do those things unless he was really interested in dry eye - I have a feeling that if you stick with him, you'll eventually make progress. Give him time - he'll have to try something, give it time to see if it works, then try something else, give it time to see if it works etc. It'll take more time than you want, but it is what it is... you just have to hang in there and methodically work through the various options. Unfortunately, this isn't like, say, when you get strep throat and take an antibiotic and are cured within days - severely dry eyes often takes much longer to improve significantly and/or resolve.

    A lot of this is guess-work - there are many things that could be influencing your eyes, and it takes a lot of experimentation to figure out what those things are so you can fix them. But trust me, it's worth the effort - eventually, odds are you'll figure out some things you didn't know about that are messing with your eyes, and when you fix those, things will improve a LOT.

    When my eyes were doing horrendously, my hubby gave me good advice - "If your eyes are going to bug you no matter what you do, you might as well put on your Wiley's and go out - at least that way there's a chance you'll be distracted from your eyes and that'll be good for you." He was right - and I've been doing that ever since. Sure, your eyes might be driving you bonkers, but at least you'll not be missing out on as much stuff because of it, right?

    Just plow on ahead as best you can, baby the heck out of your eyes, and eventually, you'll start to see the light at the end of the tunnel.

    Avoid computer use as much as you can.

    Avoid reading for now - it dries the eyes. Audiobooks are great - get your hubby to use his good eyes to research the best way to get them for you - I listen to mine on my ipod (although you can listen to them on your regular computer or laptop too) - I would buy them from Audible.com, and also get free ones from our local library.

    Cooking can be hard on severely irritated eyes - my slow cooker was a godsend when my eyes were in total hell since the slow cooker didn't make the kind of fumes that irritated my eyes. Maybe try a slow cooker for cooking suppers... if you don't already have one, they don't cost toooo much!

    If you don't have them already, look into the Wiley X glasses - you can see them in the dry eye shop on this site to know what I mean - they are freaking amazing since they block the wind and airflow well enough that I can go outside - I also wear them when shopping, running errands etc. (yes, I wear them indoors) - they are worth every penny for the increase in comfort that they give you.

    All of the above things are obviously not something you'd WANT to do, but they reduce the irritation to your eyes, that will reduce inflammation, and that will help your eyes eventually produce more tears and be less dry and uncomfortable.

    And of course, try the treatments that Dr. Latkany suggests also - everything works together.

    Also, try not to dwell on the negative - it's hard, I know... but do your best to purposely think of the things that are still good in your life - purposely think of all the things that would be so much worse than this and how glad you are that at least THAT isn't something you have to deal with.

    And in case that last bit sounds sanctimonious, it's not... really - it's coming from experience....

    At my worst, my eyes were so bad that they burned pretty much all the time, drops offered no relief, I couldn't even work more than 4 hours (and never, ever, 2 days in a row since my eyes needed to recover), my eyes would hardly produce tears even if I CRIED for goodness sakes (talk about freaky... soooo not good!!!), and I had to keep my eyes shut for several WAKING hours since they hurt too much to keep them open all day.

    That was despite the fact that I was wearing my Wiley's during all waking hours too.

    I couldn't tolerate reading, couldn't tolerate computer use (allowed myself max 15 minutes per day), couldn't tolerate watching TV (I would just have to sit with a cold compress over my closed eyes and listen to my favourite shows), couldn't tolerate chopping foods for cooking (guess I stared when doing it, so that hurt my eyes), couldn't cook on the stove or in the oven (fumes hurt my eyes... used the slow cooker instead), etc.

    But now, I can use the computer for several hours each day, I can read (as long as I don't do it tooo much), I can watch TV like usual, my eyes don't burn all day long, my eyes aren't red all the time like they used to be, I can work as much as I want (no more 4 hour limitations on my shifts etc), and I can enjoy life. Yes, I'm still far from normal, and still wear my Wiley's.. but I can do most of what I want to do, so I'm grateful for it.

    But it took many, many months to get to what I'd call "liveable" eyes... and about 3 years of slow improvements to get to where I am now. But it's worth the wait. Annoying as all hell and a real piss off to have to go through it in the first place, but worth it in the end if you can get to a good place with your eyes, and a good place mentally.

    The mental part is half the battle - you have to CHOOSE to try to be happy despite the crap your eyes are putting you through. Do not allow yourself to dwell on what sucks - you'll fail, then try again. But keep trying - it gets easier. Force yourself to put on a big smile (ear to ear, the kind that makes your eyes smile too), and you might be shocked to see that this act becomes real and you are actually feeling happy, despite your eyes totally sucking. Sounds crazy, but this strategy helped me, maybe it will help you too. At least it can tide you over until your eyes are actually doing better.

    And whatever you do, don't take it out on your family (not saying you are... but just mentioning it in case since some people do react to stuff like this in that way) - you need them to be with you - they can be a huge comfort to you, and you don't need tension in the mix to make things worse. They can't totally understand what you're going through, but just tell them what you need: maybe you need to go in the bedroom to rest your eyes (and hopefully listen to an audiobook so you're not bored!!), maybe you need your hubby to research the audible.com software and get it set up on your computer for you so you can listen to audiobooks (saves your eyes the computer time), maybe you need your hubby to drive when you guys go places so you can shut your eyes and rest them during the drive... whatever it is, odds are they'll be happy to do it, but you'll need to tell them what you need, and, of course, thank them for it too!!! As hard as this is for us, it's hard for them too - to feel helpless and watch you (us) suffer, having no idea how to fix it or when it will end. I think it helps the marital relationship to remember that too...

    Comment


    • #3
      Cheer up evie, enjoy christmas. Dont think about your eyes, its been long months I just live my life and not think about my eyes. You need to give your eyes for recovery, if you need to quit your job or etc...then do it for a bit. Recovery takes time.

      Comment


      • #4
        Originally posted by SAAG View Post
        and, of course, thank them for it too!!!
        In time, your heart will be filled to overflowing with gratitude for the help and care you receive from friends, family, doctors, nurses and everyone who helps you along the way. This experience, of extreme gratitude, brings you closer to God. It's quite remarkable. So yes, thank them all, often and sincerely.

        Comment


        • #5
          Hi Evie,

          I felt the same as you a month ago!

          This is what helped me: Stop all antibiotics ointments, antibiotics, steroidal drops, etc.

          1) Food grade vitamin E oil as eye drops (from Nature's Bounty 30,000 IU) I apply with an eye dropper to my eyes 3x day.
          2) Solcoseryl eye gel (this has superior healing qualities and brings more oxygen and electrolytes to your eyes)
          3) Taurine supplementation (3000mg/day on an empty stomach)

          I'm on my way to recovery. Please check out my intro post for more information about how I solved my red eye/dry eye problem.

          Logan x

          Comment


          • #6
            Hi Evie, Umm I don't really write on forums. I'm one of those people that my friend calls a forum/facebook voyeur I'm originally from NYC (Staten Island) so your post from New Jersey kinda made me read it because - heck we are practically neighbors. I just had to write. I read the advice that SAAG gave above and it's really great advice. Five years ago I thought I was nuts. My eyes started blinking and squinting and I had so much trouble driving and watching TV. Tried sunglasses but it didn't help very much. I am a nurse so it took a long long time to admit that something was wrong. Nurses are like that you see. We can be prone on the floor and we will say "no no everything is fine". So as a mother AND a nurse I have a huge problem asking for help. I have seen optomologists, neuro-opthamologists, cornea specialists and an opthamologist specializing in blepherospasm (I don't have it BTW) and a psychotherapist for talk therapy and hypnosis. Some were "nice" and some were arrogant numbsculls (and you know that is not the word I really want to use). I took 12 weeks off from work a few years ago because I was waiting for the botox treatments to work. Of course, it never worked because I don't have blepherospasm. But one of the things that did help was seeing Dr Latkany. He listens and many do not. You never feel rushed. I come home once a year to NYC and see him. He diagnosed me with ocular rosasea and prescribed Pataday. It has helped. Ice packs have helped. Audible.com has been a god send! Klonopin, as needed, has helped. I still cannot drive safely with all the squinting. I still cannot watch TV very well. But, I can spend hours on the computer and last night I watched TV for two hours with very little problem. I hardly ever have problems when I go back home to NYC. I now live in Arizona. I don't like small town living. I miss NYC something fierce. I don't like my job. I don't like small town hospitals and I miss my job in the big fancy-schmancy teaching hospital that I used to work for in Manhattan. Ya think this might have something to do with my eyes? I think eyes are very, very sensitive organs. And the more we think about them and focus on them the more they bother us. And round and round it goes. Anxiety is a powerful thing. If I can bring down the anxiety in my patient, I can help win the battle in their pain control. Doesn't mean they don't have the pain - they just aren't as focused on it and as anxious. (Labor nurse talking here). Soooo be nice to yourself Evie. It's OK to lay down with an ice pack on your eyes and listen to a good mystery. Your husband sounds like a good guy. But sometimes I want to scream at mine because I think he "doesn't understand". No he doesn't but that's OK he is still a good guy Wander around this website and I think there are lots of people that know how you feel. Seems like SAAG took the time to write to you on Christmas. That says something doesn't it Hang in there kiddo!

            Comment


            • #7
              It took me 4 months to be "functional" again.

              It took me 8 months to get back to work.

              It took me 12 months to feel "normal" for over half a given day.

              And I'm still improving. You CAN get better. You just need to be really, really patient.

              I'll write my triumph soon with more detail. Hang in there.
              32/M ATD • Getting better every day!

              Comment


              • #8
                Saag and all those who reaponded thank u from the bottom o my heart!

                Saag and everyone who weote back to me: I'm sorry for late response I've been out of work since Xmas and I don't have a computer at home,and I've been resting a whole lot these past few days. I hadn't done that too much lately. I took your advice and rested my eyes and listened to "meditation" recordings on YouTube an would eventually fall asleep. I wanted to say how much I appreciate all the time you took to respond to me. I've read your reply over mani times over the past few days. Truly priceless advice. I admire you so much!! I am going back to mountains of work tomorrow and I will reply better to you and to everyone that took the time to respond to me. I'm on the computer all day how on earth do I even go about getting a disability if my eyes appear FINE they aren't even red. I don't know how to go about that but boy would it help alot! I have so much more to write but it's hard on my phone is rather so it on a computer. I wear regular glasses so I don't know if I could even wear the Wiley's you mention. Again thank u from the bottom of my heart and I'll write more tomorrow!!! (Deep breath) moving forward although my eyes are killing me. Evie

                Comment


                • #9
                  Originally posted by evielady11 View Post
                  (Deep breath) moving forward although my eyes are killing me. Evie
                  That's the spirit girl... keep on moving... you might have to trudge through a lot of crap to get to better times, but it'll be worth it in the end once you're back into the good life again!!!

                  Comment


                  • #10
                    Hi Logandly,

                    Do you know where I can buy solcoseryl eye gel? It doesn't seem to be prescription-only. Thanks!

                    Comment


                    • #11
                      Hosanna13, hi!
                      Originally posted by hosanna13 View Post
                      Do you know where I can buy solcoseryl eye gel? It doesn't seem to be prescription-only. Thanks!
                      Did you ever get this? If so, did you ever use it? I'm thinking of using it and have been hesitating a lot. I see it has BAK so that worries me. Would really like to know if you used it what your experience was. Thanks. ~Gerri

                      Comment


                      • #12
                        Hi Evie,
                        Originally posted by evielady11 View Post
                        how he thinks a contact lense would help dont lenses pull water away from eyes? I just don't get it. All docs say my problem is not oils it could be allergy who knows anymore. I'm exhausted emotionally . He said if I don't feel better after contacts (.
                        Was the doctor suggesting a specially-fitted scleral lens? Did you problem ever resolve? Did you try any of the suggestions made on this forum? Hope you feel better. Thanks. ~Gerri

                        Comment

                        Working...
                        X