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  • I need a pep talk

    I'm having a hard time.

    I have to go back to Canada - my eyes are a mess because of a trip home at the end of last winter (March) that I felt I HAD to make. I was worried that if I didn't go, a certain person who already was avoiding speaking to me would completely cut me out (I'll call them Person A). And there are certain people in life who you can't bear the thought of being cut off from, you know? Also, Person B really really wanted me to come - I totally understand why they wanted me there - but the trouble was they clearly didn't believe me when I expressed my concerns about whether or not this would be bad for my eyes.

    (I went home for about 2 weeks at the end of last winter, then returned to the tropics... what scared the crap out of me is that my eyes had gotten so bad from 2 weeks in dry indoor winter air that even when I returned to the tropics, my eyes were in total hell, super red, super sore, etc.. it took a total of 3 months after returning to the tropics (which included a 1-week course of steroid drops) to get my eyes back to being more normal which was not a typical flare up at all)

    *And please don't anyone knock the people I'm writing about here. I don't want that. It'll only make me feel like an a$$hole for writing about them at all, even though I'm doing so without naming them. I need help figuring out how to deal with them in a way that doesn't break me, but I don't want insults to them.

    Anyhow, Person B is another person who I can't bear the thought of being cut off from. Person B still talks to me and is a kind of buffer between me and Person A. But I can tell that Person B has doubts about what I say in regards to my eyes... they will ask how my eyes are, I will tell them, they'll ask me for details about the dates of my flare ups and any improvements... I'll explain again... I feel like I'm being tested to see if my story stays consistent... I feel like Person B is asking over and over again because they don't believe what I'm telling them. Because why else would they ask me the same questions over and over again?

    That's like asking someone what they made for lunch today, and then, unsatisfied with the answer, asking them over and over again to see if their answer remains the same. "So you said you had rye bread? And what kind of sandwich meat did you say you used? Did you use mustard? How long did it take you to eat the sandwich? Did you say it was tasty, or no? What kind of bread did you say you used? Can you tell me again how long you said it took you to eat it, including what time you started and what time you finished it?"

    If you believe their answer, you're not going to keep asking, right? NO-ONE questions you like this if you say you sprained your ankle... "What was the date when you sprained it? When did your ankle feel normal again afterwards? Can you tell me again?" Over and over again for months.

    So finally, I decided to write it out for Person B because I've explained my flare up, treatments, and timeline for it over and over again verbally, and I'm tired of repeating myself - so I write about 1000 words to explain the dates and timeline of this flareup that has gone on since last March. My thinking is that now I won't have to explain it over and over again since they have it in writing. I sent the message to them. No response.

    This was upsetting to me because it took me a long time to write it out, my eyes burned SO bad the entire time I was writing it... and no response from them? We talk on the phone a few days later... they ask how my eyes are, and again ask me for details about the dates of my flare ups and any improvements... I remind Person B I sent them that message a few days ago explaining it all and ask if they read it.

    There's a few seconds of silence, then they finally say, "Yes, I read it... but I forgot what it said".

    I ask them to read it again then, since it will answer all of their questions and it's depressing to me to have to describe it over and over again every time they ask me to tell them again. Then I end the call because I'm upset. I took the time to describe my problems to them - because they asked! - and they "forgot"? I don't know how to deal with this. It's hurtful and dismissive. Why ask me how I'm doing if you're going to act as if you have no idea what happened even AFTER I've explained it yet again?

    When I wrote those 1000 words to them including how I walk outside with my eyes shut (due to intolerable discomfort from the slightest wind getting past my moisture chamber sunglasses), holding on to my husband's arm so I don't trip - they forgot? I just told them that I've been mostly unable to work for months and they forgot? These are not benign, trivial things like what I ate for lunch. I'd understand forgetting benign, trivial things. But what I shared was not trivial. This person is perfectly intelligent... there is NO WAY they "forgot".

    To be completely honest, I'm devastated by how my eyes are right now, and feeling so alone. I feel even more alone when someone asks me how I'm doing, doesn't like the answer, and then pretends as if they have no idea how I'm doing.

    The freedom from eye pain that I fought so hard for is gone. I'm back to where I was before we left for the tropics. For the past several months I've spent most days in a bedroom with the heat turned up to 28C, and the humidity turned up to 65-70% since I keep hoping my eyes will bounce back and allow me to work again - I'm not in the tropics, so am trying to somewhat duplicate that climate here in this bedroom. Every time I leave this room to go outside, my eyes get worse and it takes a few days for them to return to baseline. I ordered the 7-eye Sedona glasses to lessen the airflow reaching my eyes when outside... my hope is that this will allow me to get out more without suffering a setback with my eyes.

    Going outside is problematic for two reasons: 1. Lower humidity 2. The wind.

    The glasses mostly fix the wind problem, but not the humidity problem. I think that's one reason why my eyes aren't bouncing back... they improve in my "tropical" bedroom, then get super irritated from going out in the lower humidity environment... it's a constant 2- steps forward, 2 steps back, never making lasting progress. Living in the tropics was fine though since it was humid and warm EVERYWHERE... I could go out in the world and be comfortable with no eye pain. I didn't have to pay a price with my eyes for leaving my bedroom.

    My MG's look decent thanks to the Blephasteam goggles - so I don't think they are a major issue at the moment. (I have a 15x LED lighted magnifying mirror so I am able to clearly see the positive changes in my MG's that have occurred since using the Blephasteam goggles).

    I am using as many treatments as I have available to me. And to be honest, I'm not looking for treatment ideas in this thread... I've been dealing with this for 13 years since my LASIK procedure, I have gone through the latest DEWS report, I've read every thread in the forums I can find on supplements I can take etc.

    I went home last winter because I wanted to do the right thing. I went home because I worried person A would stop speaking to me completely if I didn't... that they'd never forgive me for not coming home to show my support. I went home for a lot of reasons, all of which were to prove myself to OTHER people, all of which had to do with a feeling of obligation.

    I knew it was highly risky for my eyes to go home at that time of year. But I did it anyways because I knew it would be seen as the right thing to do, and if I hadn't, many people would have thought I was being selfish.

    And now that I'm dealing with the consequences (to my eyes) of going home for them, I feel abandoned. Person A is still avoiding me... they are always too busy to talk to me. Person B continues to question me about the timeline of my flareup as if looking for a loophole to show that it had nothing to do with coming home.

    And I'm thinking "I went home for YOU... rather than question me endlessly about it looking for a loophole, why don't you just say you're sorry it led to such a devastating effect on my eyes, say you're sorry for pressuring me to come and stay longer than I knew was wise, and ACCEPT the result rather than try to find a way to show it wasn't due to that trip home, and was merely a coincidence?" Honestly, I'd drop it, but when they keep on quizzing me for MONTHS about exactly when the flare up occurred, when it started to improve, when it got worse again, and so on, it's impossible to drop it. My answers aren't going to change no matter how many times they ask me. After 13 years of this eye problem, I'm pretty damned sure that dry winter air trashes my eyes, and I'm also aware - from personal experience - that my eyes take a painfully long time to recover from a severe flare up.

    I don't bring up this ongoing months-long flareup because I don't want them to think I'm guilt-tripping them... but when they ask about it, I'm not going to lie and pretend it didn't happen. I told them I was worried about staying home for such a long visit that time of year... I told them all of this... but they didn't really accept no for an answer... they kept pushing for me to stay longer. I felt bad, so I agreed to stay longer. And now I'm still paying the price with my eyes for that, months later.

    I'm so tired of questions... "but if ____, then why ______?"

    I don't have the answers. All I know is that for some reason when I'm in a very warm, high humidity environment, my eyes feel almost normal eventually.

    All I know is that every time I leave a high humidity, warm environment, my eyes take a turn for the worse and then need time to recover from that by returning to a warm, high humidity environment.

    I don't know why it takes so little to send my eyes into a tailspin.

    I don't know why they feel so crappy.

    I don't know why I feel my eyelids rubbing on my eyeballs with every blink.

    I don't know why the inside corners of my eyes sting.

    I don't know why dextromethorphan alleviates the burning sensation on my eyeballs.

    I don't know why my eyeballs ache and sometimes even keep me awake at night because of it.

    I don't know why my eyelids stick to my eyeballs when I sleep despite a thick layer or ointment sealing my eyes shut, with a sleep mask on top of that for good measure.

    I don't know why my eyes don't look too bad upon examination, other than this corneal neuralgia diagnosis that no-one knows how to treat effectively.

    I don't know why preservative-free artificial tears sometimes help, and other times make my eyes feel even worse.

    And I don't know why people can't understand that I can take a few seconds to smile for a picture with my sunglasses off, BUT still have eye pain that doesn't go away and is truly debilitating, preventing me from doing much of anything productive. Yes, it's possible to smile for a photograph BUT STILL BE IN ALMOST CONSTANT DISCOMFORT AND PAIN if I try to participate in normal activities. A picture doesn't prove I'm fine.

    I'm so tired of the questions asking me WHY?

    I'm so tired of being in this bedroom.

    I'm so tired of having my eyes pay a price almost every time I dare to leave it for long enough to try and have a little fun or add variety to my day.

    I'm so, so, so frustrated right now and I don't know how to deal with this.

    I'm sh!t-scared of how in the hell I'm going to manage this on an ongoing basis. My youngest son asked me yesterday how my eyes will be when we go back to Canada, he asked me if I'll have to stay in the bedroom all the time with a humidifier... and it made me so sad. Because I'm missing out on so much by having to be in this humidified bedroom most of the time, so I can avoid having my eyes hurt. I can't go on bike rides with my kids. I can't play board games with my kids because concentrating makes me stop blinking and that causes eye pain. I frequently stay home when they go to the beach or for walks because my eyes are irritated and I'm scared to make them worse. Cooking fumes make my eyes hurt, so I eat my meals in my bedroom so I won't have to sit in the kitchen with the cooking smells bothering my eyes.

    The worst thing in all of this is that no-one can SEE it. So there will always be doubts.

    People will always doubt my integrity, wondering if I'm making this up, exaggerating, or whatever. It's so insulting. But people just can't wrap their heads around it.

    I feel like I'm drowning. I don't want much... I don't expect miracles... but is it really too much to ask for people to offer empathy or understanding? Honestly, I feel like Person A and B figure this is my fault anyhow since if I hadn't had LASIK I wouldn't be in this situation... and since I chose to have LASIK, I did it to myself, should have known better than to trust the surgeon's opinion, and the 'ol thinking "you made your bed, now lie in it". In other words, since LASIK was my fault, I get zero slack when things are hard because of my eyes.

    Even back in 2009 when my eyes were in total hell, I was spending every possible waking hour with my eyes shut and cold compress on them... but when my husband was at work and my kids weren't napping, I had to keep my eyes open (because I was home with a new baby and a toddler). In a moment of weakness, I told Person A how exhausted I was, how bad my eyes felt, how I couldn't wait to be able to close them with a cold compress again, ... and I remember person A saying something along the lines of "You had them, you raise 'em", as if I'd been hinting for help with the kids. And in any case, I never asked anyone else to raise them, so that comment wasn't necessary. I was drowning then, too... my eyes were in pure hell. But the expectation has always been that I have to deal with the consequences of my actions... which is fair... I'm not saying I shouldn't have to deal with the consequences of my actions... but omg, I could have used a bit more support back then... it was a very dark time for me. And not easy for my husband either, being at work all day knowing his wife was having such a hard time at home.

    And even though I chose to have LASIK, it's not like I chose to do something that was widely seen as harmful. At the time I had LASIK in 2005, the only studies available showed a rather glowing picture of the results. I knew several people who'd had it and all were thrilled. My surgeon lied to me when I asked him prior to undergoing the procedure if the dry eye mentioned on the consent form could ever be permanent. He lied to me when I asked him if it was possible to have ongoing pain afterwards like some people on the internet said. He'd done thousands of procedures... he'd done more than anyone else in the city. He was even the most expensive. So yeah, it's my fault for having LASIK, but I was also misled about the risks.

    I had a taste of being almost normal in the tropics... it was freaking glorious. And it is so, so, so hard to go back to the way I was before... that flare up in March ruined everything I worked so hard to gain and set me soooo far back.

    I broke down in tears and had a total meltdown when my husband came in to check on me this morning. I feel awful for worrying him... we have 2 kids... he has a lot to deal with already, and I HATE adding to it. I try to be happy, I try to shove aside any feelings of despair I have so my husband won't worry. But this morning, I couldn't help it. I'm glad my husband is so understanding - he's amazing and so supportive - but I really, really, really, really HATE letting him see me in full meltdown mode and causing him worry or stress. [insert string of curse words here]. Sigh.
    Last edited by SAAG; 14-Jan-2019, 15:24.
    Yet another post-Lasik (2005)...
    Anyone have a time machine so I can go back and undo this mess?

  • #2
    It's heart wrenching to read your post SAAG

    Today was a bad day for me too. In fact I felt like crying. Couldn't sleep the last night due to panic attacks. I can totally understand how it feels to go back to where you started after some really hard work to make your eyes feel better. It's relentless and so much unpredictable. I don't know if I can continue like this for the rest of my life. I can definitely understand your pain. Just hold on for the better times.

    Hope is the only thing we can live for.

    Please feel free to privately talk to me if you need someone to listen and share your agony.

    Feeling dejected after reading your post.
    Last edited by Rebecca Petris; 27-Dec-2018, 09:33. Reason: Removed the long quote to make it easier to read.

    Comment


    • #3
      This is just so far beyond heartbreaking SAAG. I am so, so, sorry.

      What just really kills me is for you to be here: "To be completely honest, I'm devastated by how my eyes are right now, and feeling so alone....The freedom from eye pain that I fought so hard for is gone. I'm back to where I was before we left for the tropics...."

      AND at the same time, to be enduring not one, but more than one person in your life, who could either read or listen to any of your experience, ANY of it, ANY OF IT AT ALL, let alone so much of it and over a long period of time, and yet respond with such utter, incredulous callous indifference. This leaves me dumbfounded and furious. I know you specifically don't want anyone bashing people you care about so forgive me but... I... just... can't help... but feel... so indignant at the toxic harm caused by people who choose to respond in such an inhumane way to such obvious suffering.

      People will always doubt my integrity, wondering if I'm making this up, exaggerating, or whatever. It's so insulting. But people just can't wrap their heads around it.
      NO. They shouldn't. They shouldn't. That's intolerable. Unjustifiable.

      Sigh. I'm sorry. Not exactly a pep talk.

      I know that you clawed your way back from the worst before, and I know you will do so again. I know you'll be ok. I know from watching from a distance over the years that you're incredibly strong and I know how much you've reached out and helped others and I know how many, many, many times I've referred to your stories and experiences when I've talked with others on the phone and how many people have taken hope from your progresses and triumphs and your persistence. You are such an amazing person. And I'm really, really glad that you give yourself permission to acknowledge how you feel and to put it into words because you carry such a large load.

      I just hate that you are going through this and I wish there was something, anything I could do to make it !@#$!@#$!@#$!#$!#$ pass.
      Rebecca Petris
      The Dry Eye Zone

      Comment


      • #4
        OMG Saag, I am so, so sorry to hear that you are having such a struggle. It must have been hard for you to even write this epistle.

        I guess I have to question if it is really that important to have person A and B in your life, I guess you have to ask yourself, am I better off with them or without them, rather like contemplating a divorce. Do they contribute more to your life and happiness than they take or are they sucking more out of you than you can give.

        I know it is not easy to cut anyone out of your life and perhaps you don't need to go that far if they are people really close to you but rather just keep them on the periphery at arms length; to be there if they seek you out but not initiating contact of your own.

        Life is complicated enough trying to raise a family but we plug on the best we can. If you had cancer and were laying in bed no one would question your motives, I understand your frustration in that you look so normal that it is difficult for people to understand just how you feel. I like to use the analogy of soap in your eyes, that is something that everyone can relate to. I just explain that it is like having soap in your eyes, that they burn and sting but the only difference is that that feeling rarely goes away unless you are in optimum conditions, like a room with a humidifier or in the tropics so those are the environments that you seek.

        I applaud you for having taken the steps you did for as long as you did to move around the world seeking places that might allow you to live in relative comfort. You know now what it will take to live that life and maybe in the future you can make it permanent.

        I know that a lot has changed since you have been gone and maybe some of the new treatments will help you....stay strong.

        There is one thing that I might try if I were as desperate for humidity as you are. Is there any way that you can raise the humidity inside your moisture chambers. For example my 7eye brisas have quite a large eye lens and there is room to tuck a moistened strip (I just tried it with toilet paper) in the bottom of the lens resting on top of the gasket. I would of course try to create something black so it is not so noticeable to my eye but maybe that would allow you sufficient comfort to go to your childrens activities. You could bring along an eyedropper in your purse to re-moisten it as it dries out. Just a thought.

        Anyhow my friend, feel free to PM or call me anytime you need a shoulder to cry/***** on....(smiley face)....cheers...F/G

        Comment


        • #5
          Originally posted by Milo007 View Post
          It's heart wrenching to read your post SAAG

          Today was a bad day for me too. In fact I felt like crying. Couldn't sleep the last night due to panic attacks. I can totally understand how it feels to go back to where you started after some really hard work to make your eyes feel better. It's relentless and so much unpredictable. I don't know if I can continue like this for the rest of my life. I can definitely understand your pain. Just hold on for the better times.

          Hope is the only thing we can live for.

          Please feel free to privately talk to me if you need someone to listen and share your agony.

          Feeling dejected after reading your post.
          I'm so sorry to make you feel dejected... please don't let it.

          I can relate to the trouble sleeping... I know that's part of my eye trouble. I fall asleep okay, but wake up in the middle of the night, my chest gets tight, tears well up, and I can't fall asleep again easily. I am stressing out trying to wrap my head around how I will survive another round of this in a Canadian climate... how I will endure this until we are able to move to BC with milder winters... it will take time... I am expecting to have to make it through a -40 winter on the prairies, then another winter in a rental house in BC, until we finally buy something of our own that I can set up to be a permanent refuge for my eyes. I tried so f'ing hard to avoid ever having to go back... but it's not meant to be, I guess.

          So I sit there thinking of all this... I either stay up the rest of the night, or after a few hours awake, fall asleep again for a few more hours. Frigging exhausting and not so great for the eyes. I will get through this... always do. But I'm feeling stuck in a very, very black mood that I am having great difficulty shaking... I'll shake it off eventually... don't know how yet... but somehow, I will. You will too.
          Last edited by SAAG; 27-Dec-2018, 12:10.
          Yet another post-Lasik (2005)...
          Anyone have a time machine so I can go back and undo this mess?

          Comment


          • #6
            Originally posted by Rebecca Petris View Post
            ... to be enduring not one, but more than one person in your life, who could either read or listen to any of your experience, ANY of it, ANY OF IT AT ALL, let alone so much of it and over a long period of time, and yet respond with such utter, incredulous callous indifference. ... NO. They shouldn't. They shouldn't. That's intolerable. Unjustifiable.
            One thing I can say for sure is that it's not indifference ... I think they're worn out, very wrapped up in other stuff, and have zero mental space to deal with what's going on in my life. So they ignore it, pretend it's not happening, or stay in a state of denial. Sadly, this knowledge doesn't make it any easier for me to deal with their reactions to what I go through. Sigh.

            Anyhow, I appreciate your words of support... they give me comfort, and reassure me I'm not overreacting or being "too sensitive" or "overly emotional" to the way they've handled this. I've always thought ANYONE would be upset about this kind of reaction... but it's affirming to hear it from someone else.
            Last edited by SAAG; 27-Dec-2018, 11:59.
            Yet another post-Lasik (2005)...
            Anyone have a time machine so I can go back and undo this mess?

            Comment


            • #7
              Originally posted by farmgirl View Post
              I know it is not easy to cut anyone out of your life and perhaps you don't need to go that far if they are people really close to you but rather just keep them on the periphery at arms length; to be there if they seek you out but not initiating contact of your own.
              I can't do this... I'd feel like a complete a$$hole. Sounds crazy perhaps, but I don't feel like I can do that. I have zero tolerance for this stuff in other people... but this case is different. I'm just trying to figure out how to handle Person A and Person B without being constantly wounded by their reactions and lack of understanding of my eye issues.

              Originally posted by farmgirl View Post
              If you had cancer and were laying in bed no one would question your motives, I understand your frustration in that you look so normal that it is difficult for people to understand just how you feel.
              Yes, so true.

              Originally posted by farmgirl View Post
              I like to use the analogy of soap in your eyes, that is something that everyone can relate to. I just explain that it is like having soap in your eyes, that they burn and sting but the only difference is that that feeling rarely goes away unless you are in optimum conditions, like a room with a humidifier or in the tropics so those are the environments that you seek.
              An excellent analogy for the burning. I

              Originally posted by farmgirl View Post
              You know now what it will take to live that life and maybe in the future you can make it permanent.
              omg, I sure hope so. It was such a pleasure to have my life back... to feel like ME again... to feel like the girl who could do anything, who could accomplish anything. I just have to figure out how to readjust to being UNable to do almost everything again (and if I do things, to always paying a price in terms of how my eyes feel), how to adjust to being so severely limited again, how to adjust to everything being a complete and total uphill battle every minute, how to adjust to having to meter out my "eye time" again so that I don't spend too much "eye time" on one task, only to mean I cannot do another task that is non-negotiable.

              Originally posted by farmgirl View Post
              I know that a lot has changed since you have been gone and maybe some of the new treatments will help you....stay strong.
              Will try.

              Originally posted by farmgirl View Post
              Is there any way that you can raise the humidity inside your moisture chambers. For example my 7eye brisas have quite a large eye lens and there is room to tuck a moistened strip (I just tried it with toilet paper) in the bottom of the lens resting on top of the gasket. I would of course try to create something black so it is not so noticeable to my eye but maybe that would allow you sufficient comfort to go to your childrens activities. You could bring along an eyedropper in your purse to re-moisten it as it dries out. Just a thought.
              Trouble is that the air is too cool and moisture is too quick to condense on the lenses. I've been using all the tricks I used to use on my snorkel mask to prevent fogging... it helps lessen the fogging, but still not enough to allow me to add even more humidity.

              Originally posted by farmgirl View Post
              Anyhow my friend, feel free to PM or call me anytime you need a shoulder to cry/***** on....(smiley face)....cheers...F/G
              Thanks F/G... it means a lot. <3
              Yet another post-Lasik (2005)...
              Anyone have a time machine so I can go back and undo this mess?

              Comment


              • #8
                Originally posted by SAAG View Post

                I can relate to the trouble sleeping... I know that's part of my eye trouble. I fall asleep okay, but wake up in the middle of the night, my chest gets tight, tears well up, and I can't fall asleep again easily. I either stay up the rest of the night, or after a few hours awake, fall asleep again for a few more hours. Frigging exhausting and not so great for the eyes.
                So much truth in your words. I guess life has been a living hell for all of us. Only some are lucky to get away. Hopefully we will one day. I pray that everyone will.

                Originally posted by SAAG View Post
                I will get through this... always do. But I'm feeling stuck in a very black mood that I am having great difficulty shaking... I'll shake it off eventually... don't know how yet... but somehow, I will. You will too.
                Yes we will get through this for certain. Time is a great healer. But the question is for how long before destiny strikes the next blow and again things would repeat. This is relentless torment.

                Sorry I was freaked out by your post. I realize you are one of the oldest members of this forum and seeing you write your heart out like this really scared me. I am just a newbie trying to adapt to the miseries of life this disease has brought upon me whereas you have been living with it for much longer. I got frightened to see you break out like this.

                Comment


                • #9
                  I have to figure out a way to be okay with life in a humidified hot room until my eyes recover from whatever this is and are able to tolerate longer stints outside of such an environment. omg, that sounds insane though, doesn't it. Because right now that's my reality, and I don't know how long this will last. I can go for walks, but there's always a cost. Maybe if I am able to start sleeping better that'll help tip my eyes over the edge (in a good way) and allow me to tolerate walks outside without a setback for my eyes.

                  Before that trip home last winter, I could go home to Canada during the summers and be fine... I'd work online all day in a humidified room for the 2 months we were in Canada, and I was able to join everyone outside said room (i.e. in a non-humid, normal environment) in evenings, weekends during those 2 months... I had very little discomfort, was able to remove my sunglasses when indoors if I was just sitting around. But this summer when I returned home at the end of July, my eyes felt uncomfortable or downright hurt most of the time. I rarely removed my sunglasses when socializing since I needed to block as much air movement as possible. (i.e. unexpectedly went home in March for 2 weeks during winter, eyes went to total hell... returned to a tropical part of Mexico for several months... took 3 months until my eyes seemed to recover, had 24 days of relative normalcy, then had to go back to Canada at end of July and eyes were a PITA the whole time I was there).

                  So in the past it took months of non-stop humidity and heat for my eyes to get to a state where I could enjoy a lot of my normal activities in a Canadian climate ... maybe if I stay in a humidified, very warm room for months, my eyes will again be that way. But that sounds insane - I mean, WHO DOES THAT?!?! - and it's depressing as all hell, it's so isolating to be alone in a room while your family lives life without you. Who would stay in a humidified room almost 24/7 for MONTHS in the mere HOPE of duplicating the effect of their eyes being in the tropics for months. It might not even work this time, and meanwhile my husband and kids have me as a recluse in the humidified, hot room that their bodies are no longer acclimated to (it was one thing to LIVE in that when it was the CLIMATE... but if they spend most of their days in a normal climate, coming into my hot, humid room will feel like coming into a humid sauna, which is NOT pleasant when your body isn't used to it). Meanwhile, I'll be sitting there comfortable as can be because my body is still acclimated to it, and I'll bundle up in a sweater when I leave this room.

                  Or, I leave the humidified hot room and live among normal people haha... BUT, do not read, do not look at a computer, do not do anything too interesting lest I stop blinking and dry out my eyes... live an intellectually dull life with zero to challenge me other than figuring out how to live this way and be happy anyways... all while dealing with the incessant rub of my eyelids against my eyeballs with every blink, all day long. Frigging hell this is so bloody frustrating. I know what I need to live a comfortable, full life (tropical, warm, high humidity climate), and it is currently out of my reach.

                  The other piece of this puzzle is that I was on Naltrexone drops (from Dr. Rosenthal) until roughly March 2015... so my first 8 months in the tropics were aided by its beneficial effects on my corneal nerves. Now, I don't have those drops... was scared to stay on them because of theoretical risks, scared to restart them because of theoretical risks... in any case, don't know any doc who would prescribe them, and even if I did, I don't know if I'd go on them... possible irreversible corneal swelling/permanent blurred vision and/or possible cataracts behind door #1? He'd never had a patient stay on them as long as me... Someone is doing studies on a 0.002% drop (I was on 0.0035% with Dr. Rosenthal)... will be interesting to see if any complications come up (I hope not though!)...

                  This is so incredibly crappy to be in this position again.
                  Last edited by SAAG; 07-Jan-2019, 07:59.
                  Yet another post-Lasik (2005)...
                  Anyone have a time machine so I can go back and undo this mess?

                  Comment


                  • #10
                    Originally posted by Milo007 View Post
                    Sorry I was freaked out by your post. I realize you are one of the oldest members of this forum and seeing you write your heart out like this really scared me. I am just a newbie trying to adapt to the miseries of life this disease has brought upon me whereas you have been living with it for much longer. I got frightened to see you break out like this.
                    In case this is any consolation (and it probably will be), my LASIK surgeon had me on preserved artificial tears for 4 years. I was using them every 5 minutes in the beginning (192 times a day with my surgeon's blessing), and later my eyes improved to only needing them every 15 minutes... and later to using them once an hour. But I couldn't very well call in sick to avoid having to use so many eye drops since my surgeon told me to keep on doing it, that those were the best drops to use, and that my eyes were doing "GREAT!" - I figured if my doctor wouldn't back me up in needing to stay off work to let my eyes calm down, I'd have to suck it up, and heck, maybe he was right and this was within the realm of a normal recovery. Every time I checked with him and emphasized how many times a day I needed drops to function (and I checked often to make sure it was okay), he'd say these were the best drops to use and to keep on doing what I was doing because I was doing "great!". @$%@$%@$% Clearly, in hindsight, he's an a$$.

                    However, all those preservatives on my eyes for 4 years may have caused permanent damage for all I know... 4 years of chronic inflammation that was pretty much untreated because my LASIK surgeon insisted I was doing "GREAT!" the whole time also likely did some permanent damage.

                    So, on the bright side, assuming that didn't happen to you, assuming you didn't bathe your eyes in preservatives up to 192 times a day for months so you could keep working, then 64 times a day for many, many months once things "improved", then a mere 8-16 times a day for a long while, I bet you have good odds of recovering better than I have. I'd be optimistic if I were you... because my situation is especially freakish and most people don't end up like me.
                    Last edited by SAAG; 27-Dec-2018, 13:03.
                    Yet another post-Lasik (2005)...
                    Anyone have a time machine so I can go back and undo this mess?

                    Comment


                    • #11
                      Originally posted by SAAG View Post

                      In case this is any consolation (and it probably will be), my LASIK surgeon had me on preserved artificial tears for 4 years. I was using them every 5 minutes in the beginning (192 times a day with my surgeon's blessing), and later my eyes improved to only needing them every 15 minutes... and later to using them once an hour. But I couldn't very well call in sick to avoid having to use so many eye drops since my surgeon told me to keep on doing it, that those were the best drops to use, and that my eyes were doing "GREAT!" - I figured if my doctor wouldn't back me up in needing to stay off work to let my eyes calm down, I'd have to suck it up, and heck, maybe he was right and this was within the realm of a normal recovery. Every time I checked with him and emphasized how many times a day I needed drops to function (and I checked often to make sure it was okay), he'd say these were the best drops to use and to keep on doing what I was doing because I was doing "great!". @$%@$%@$% Clearly, in hindsight, he's an a$$.
                      It's disgusting to learn about your doctor. Unfortunately even today most opthalmic preparations come with preservatives and that too mostly with the deadly BAK as the preservative. I think I used drops with preservatives as frequently as 2-3 times an hour for a couple of months but before that I used a drop which was preservative free for around 3 years. Interestingly my condition deteriorated super dramatically after I used the drop with preservative (BAK) for 2 months. Before that my condition was not that severe I guess. Now I feel BAK had a greater role to play as a trigger than I anticipated.

                      Originally posted by SAAG View Post
                      However, all those preservatives on my eyes for 4 years may have caused permanent damage for all I know... 4 years of chronic inflammation that was pretty much untreated because my LASIK surgeon insisted I was doing "GREAT!" the whole time also likely did some permanent damage.
                      What does your meibography and lipiscan results indicate?

                      I believe if there's damage to the meibomian glands by the preservatives a meibography would show some truncated or entirely lost glands. Lipiscan also identifies scar tissue if present.

                      I am very curious to know about your lipiview results since I pretty much have similar problem as yours. I can't withstand dry conditions for long and that is definitely attributable to low LLT in both my eyes. I also blink partially 6/6 times (left eye) and 4/6 times (right eye). I guess your lipiview results also indicate a low LLT as mine.

                      Also do you see lipids coming out of your meibomian gland orifices if mild pressure is applied to the outer surface of your eyelids?

                      If yes are they of significant volume (enough to cover up 2-3 times the diameter of the orifices)?

                      I think you could check for yourself using a 15x mirror if majority of your glands are secreting lipids in decent volumes. This is a good way to conclude if your glands are damaged or blocked for any reason.



                      Originally posted by SAAG View Post
                      So, on the bright side, assuming that didn't happen to you, assuming you didn't bathe your eyes in preservatives up to 192 times a day for months so you could keep working, then 64 times a day for many, many months once things "improved", then a mere 8-16 times a day for a long while, I bet you have good odds of recovering better than I have. I'd be optimistic if I were you... because my situation is especially freakish and most people don't end up like me.
                      Thank you for making me feel good and optimistic. I am going to run a recourse of topical azithromycin coupled with oral doxycycline for a month in an attempt to unblock some of my glands which are not yielding good volume of lipids upon manual expression (earlier they used to pour out significantly greater volumes of lipids until I screwed up things with super hot compresses). Let's see if it works. But one thing is for sure even if my condition is cured up 100% by some miracle this episode of my life is going to haunt me for a very long time if not forever. Forgetful times to be brutally honest.

                      Comment


                      • #12
                        I started using this app again to calm my mind. I'm not a woo-woo kind of person, but this app has been really good at helping me calm my mind so I can sleep in the past... maybe it will be again.

                        https://www.headspace.com/headspace-meditation-app <- I use the free version.
                        Yet another post-Lasik (2005)...
                        Anyone have a time machine so I can go back and undo this mess?

                        Comment


                        • #13
                          Useful articles:

                          1. http://princessinthetower.org/depres...ness-and-pain/ <- useful reminders on dealing with the emotional side of things

                          2. http://princessinthetower.org/this-i...t-you-to-know/ <- Although this is written about a different kind of pain, 99% of it exactly how I feel about the impact of my eye problems on my life and many people's lack of understanding. What chronic dry eye/cornea neuralgia patients go through is common to a lot of chronic conditions.
                          Yet another post-Lasik (2005)...
                          Anyone have a time machine so I can go back and undo this mess?

                          Comment


                          • #14
                            SAAG, I am sorry that people do not understand or even doubt your symptoms. Even my partner sometimes does not get how I feel partially because I hide it. And other people... I donít think they try or are capable of getting it unless they had chronic pain issues themselves or are super empathetic.

                            I completely understand your issues with humidity. A few months ago I went to visit family on the island and my eyes were doing pretty decently at the time. I stayed for about 5 days there with a humidifier running but it could barely reach 50-55%. Outside was cold and not humid. One time I left for a walk and returned later to find that the humidifier was turned off when I was gone! The host was worried it wonít auto shut off when the water runs out or something. I came back to 40% humidity. I thought I would be back to nice humid air...

                            When I got back home my symptoms did not improve for a while. However, I am easily able to increase humidity to 60% in a small apartment. Sometimes, the humidity is at 60% by itself. Rarely it goes below 45%.

                            When I feel bad, I make sure to go outside. Negative temperatures with high humidity donít help. However, usually itís 5 degrees here in the winter and 85%+ humidity. It feels good. I believe it heals my eyes, and your experience makes sense, too.

                            Dry environment can devastate even normal eyes. Scientists did a dissecating stress study with mice and they ended up developing Sjogrenís like pathology that lingered for weeks and months after (I hate experiments on animals by the way). So I imagine when our tear film is compromised, even the slightly dry places cause desiccating stress and jumpstarting symptoms.

                            You know what helps you. Thatís the key. You can use this knowledge when you are able to do that (e.g. moving back or a different state or province or doing what farmgirl doesómoving away to Florida or such for the winter). It does not matter if you are far from extended family, or not in the top country of your choice. Comfort should come first when suffering, in my opinion. Being almost normal gives room to breathe a regroup. I donít believe I will ever be able to leave for extended time periods in dry places, especially in Toronto (winters), and thatís fine. People who love me, come and visit me. And when I am a bit better, I will pick the most humid time and visit them.

                            Humidity is a blessing. Our forest air helped me when ever single blink hurt every day everywhere except for the outdoors.

                            P.S.

                            Oh, and I am glad you mentioned scraping eyelids... thatís my biggest issue. Glad I am not crazy for having it.

                            Also, I agree with Rebecca about persons A and B.
                            Last edited by hopeful_hiker; 02-Jan-2019, 03:44.

                            Comment


                            • #15
                              SAAG, I remember pulling everything I could get together for just a few seconds, so I could smile with my eyes forced opened and not look in pain for family pictures. Looking back at those pictures, I still didnít do a good job hiding it.

                              I had many acquaintances, friends and a few family members who constantly told me I needed to get out more, told me to drink more water and use more eye drops, commented how my poor husband was doing everything like taking care of the kids, cooking, driving them around, etc. etc. Iíd try to explain how debilitating my condition was where no treatments were working, but it didnít seem to get through to them no matter how many times or how I explained it to them, some had a glazed look when I was half-way through explaining, I could tell my efforts were futile.

                              When my mother-in-law, who in general is a nice person, told me earlier this year (now that Iíve been able to manage decently for ~3 years) that she thought I had been making up how painful my eyes were where I was literally homebound for three years, depressed, had to stop working, could not attend most family gatherings or help my husband, I got very angry and couldnít believe it because she saw the pain I was in. I asked her why she thought I was pretending. She said she never heard of dry eyes being so bad. She also said she has always been in good health, so had no idea what it was like to be incapacitated, especially at my age. So it really hit home for me after talking with her and thinking about it, why so many people did not understand...they never have seen anyone with such a debilitating degree of dry eye, they nor a close loved one ever experienced anything incapacitating, if one is fairly young it seems unusual to have anything so severe, etc. In my mother-in-lawís case, perhaps seeing her son have to do so much more and her grandchildren not have enough attention from their mom for several years was also a factor, where it looked like I didnít want to do anything.

                              People are often made up of their experiences or lack of experiences. Itís not an excuse for all of them, because some people will never change, but I will have to say after going through Dry Eye hell and coming out the other end, I personally have so much more empathy than before for anyone who is suffering from painful andor depressing physical, mental, or social situations.

                              I hope things can get to a better place for you this coming year.
                              Last edited by Hokucat; 01-Jan-2019, 22:33.

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