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  • #16
    Originally posted by Dowork123 View Post

    I appreciate you man. Just wish I agreed. Iím not present for my wife. Today she said, for my birthday, I want just one happy day start to finish. Where something doesnít bother you. That makes me sad. We used to ask each other about our day and talk about everything. I canít do that anymore. Iím so lost in my own mental hell i canít participate. I told her tonight, I just keep thinking about how this is forever. And even though Iím good now, I am just looking at my daughter calculating how long Iíll live to see her grow. Every day I do that. Iím not the father or husband I want to be because of this. I could have been so much better, that gets me so much. I do t go out because I fear my eyes getting bad. So I donít take my daughter out of the house as much as I should. That will only get worse. I feel unfit to give her the best life possible. I could go on. Iím just constantly sad, filled with guilt, ashamed, I just hate it.
    I think the MOST important thing for you to do in regards to trying to maintain your relationship and keep it happy and healthy is, stop talking about your eyes. Just stop. Iím sure sheís heard everything that can possibly be said, over and over and over and over again. Thatís what I had to do, just stop you will eventually push her away. Itís great to use this site and vent and talk, but please you have to give your wife a break. Can you imagine living your life how it is now without your wife and your child there. It maybe seem like ďwell Iíd probably prefer it for their sake so they donít have to go through thisĒ but they love you and want to be with you. You HAVE to stop having those same conversations. And the best part about not talking about it DOES actually help with a distraction no matter what you or anyone says it does because I have been there and lived it. I was a complete emotional wreck I have bi polar, borderline personality disorder and Depression. So you can just imagine the ****ing shit storm this was when I had to quit my job and be house bound for a whole year with my eyes shut. When I stopped looking at my eyes in the mirror everyday, when I stopped talking about it to my fiancť, when I would literally punch myself in the face every damn time I thought about it I was completely bruised my whole ****ing face black and blue, It actually started to get better thatís what it ****ing takes to change a mind to literally beat the shit out of yourself to control the thoughts (for me at least). So itís going to be hard but you just have to try and stop living in your mind about it cause guess what? youíre ****ing living it physically isnít that enough?! Your wifeís whole attitude will shift, I bet at the moment she seems like she doesnít care as much or sheís being blunt but thatís because sheís heard it all a million times. Trust me brother teaching and training yourself to not mentally live it as hard will change everything. If someone with bipolar, borderline personality disorder and extreme depression can do it I have all the faith in the world that you can do it to my man. Sorry if it sounded blunt but itís the truth also take a month break from this site and tell me how you feel because being on this site is just living your hell in a virtual way too

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    • #17
      Originally posted by Topher3 View Post

      I think the MOST important thing for you to do in regards to trying to maintain your relationship and keep it happy and healthy is, stop talking about your eyes. Just stop. Iím sure sheís heard everything that can possibly be said, over and over and over and over again. Thatís what I had to do, just stop you will eventually push her away. Itís great to use this site and vent and talk, but please you have to give your wife a break. Can you imagine living your life how it is now without your wife and your child there. It maybe seem like ďwell Iíd probably prefer it for their sake so they donít have to go through thisĒ but they love you and want to be with you. You HAVE to stop having those same conversations. And the best part about not talking about it DOES actually help with a distraction no matter what you or anyone says it does because I have been there and lived it. I was a complete emotional wreck I have bi polar, borderline personality disorder and Depression. So you can just imagine the ****ing shit storm this was when I had to quit my job and be house bound for a whole year with my eyes shut. When I stopped looking at my eyes in the mirror everyday, when I stopped talking about it to my fiancť, when I would literally punch myself in the face every damn time I thought about it I was completely bruised my whole ****ing face black and blue, It actually started to get better thatís what it ****ing takes to change a mind to literally beat the shit out of yourself to control the thoughts (for me at least). So itís going to be hard but you just have to try and stop living in your mind about it cause guess what? youíre ****ing living it physically isnít that enough?! Your wifeís whole attitude will shift, I bet at the moment she seems like she doesnít care as much or sheís being blunt but thatís because sheís heard it all a million times. Trust me brother teaching and training yourself to not mentally live it as hard will change everything. If someone with bipolar, borderline personality disorder and extreme depression can do it I have all the faith in the world that you can do it to my man. Sorry if it sounded blunt but itís the truth also take a month break from this site and tell me how you feel because being on this site is just living your hell in a virtual way too
      This was an honest post, I cannot hate it. You remind me of myself. When you said you punched yourself in the head, I laughed. Not cause itís funny, because I would do the same thing. I understand that level of desire to quit doing something that youíll beat it out of you.

      Iím bipolar, extreme depression. Had my first rapid cycling episode ever. Was hallucinating, the whole deal. Since that happened, I havenít been the same. Itís not an excuse, youíre right, I gotta chill the tuck out. Just hard to function when you think about killing your self a dozen times a day. As Iím sure you understand.

      Homesrly, Iím beyond beating myself in the head. I need chemical intervention. How old are you might I ask? Do you take any meds for it? Im 38...I could get away with this shit 10 years ago, not now. Now, itís diferent, itís worse.

      Comment


      • #18
        Originally posted by Dowork123 View Post

        This was an honest post, I cannot hate it. You remind me of myself. When you said you punched yourself in the head, I laughed. Not cause itís funny, because I would do the same thing. I understand that level of desire to quit doing something that youíll beat it out of you.

        Iím bipolar, extreme depression. Had my first rapid cycling episode ever. Was hallucinating, the whole deal. Since that happened, I havenít been the same. Itís not an excuse, youíre right, I gotta chill the tuck out. Just hard to function when you think about killing your self a dozen times a day. As Iím sure you understand.

        Homesrly, Iím beyond beating myself in the head. I need chemical intervention. How old are you might I ask? Do you take any meds for it? Im 38...I could get away with this shit 10 years ago, not now. Now, itís diferent, itís worse.
        I understand brother, itís so very hard. And Iím proud of you for still being here. Yes unfortunately my pain thresh hold is so high it took so very much to help rewire my brain to think a certain way, it just takes months and months and months of extreme management and the want and commitment to succeed. Ill be honest I do still struggle but Iíll tell ya Iím 100x better than I was and thatís a reason for me to get up everyday and try and owe myself the best life I can give myself because Weíre all gonna be dead for a long time after our life. The reason I was so blunt is because this disease has taken so much from you I couldnít stand to think of it taking your wife and kids, and firmly stand with what I said before the mind is ****ing insane man I totally get it but you Need to try and try and try (not saying youíre not) but you just gotta brother or there wonít be anything left. Youíre a smart dude I can see that just gotta startand yes chill the **** out someway haha. im 25 years old, suffer from multiple mental illnesses lost my dad when I was 9 watched him die, and my mother abused me after my father passed away. Felt like an orphan since 9 years old and has been very hard to cope and change my thinking patterns.

        I was taking king seroquel for a few years but have stopped it now as Iím trying to find a better medication thatís doesnt knock me around so much. Yes youíre right bi polar is a progressive disease, if not treated can leach out into various other problems depending on severityí, Iíd have a look at seroquel an anti psychotic you could very well be too far gone for self maintenance and an antipsychotic May be able to allow you to have the opportunity to work on your self a bit better. Being retired must help a little with the financial aspect. Try and be grateful even if it is super hard to find the positives :-)

        Comment


        • #19

          Originally posted by Topher3 View Post

          I understand brother, itís so very hard. And Iím proud of you for still being here. Yes unfortunately my pain thresh hold is so high it took so very much to help rewire my brain to think a certain way, it just takes months and months and months of extreme management and the want and commitment to succeed. Ill be honest I do still struggle but Iíll tell ya Iím 100x better than I was and thatís a reason for me to get up everyday and try and owe myself the best life I can give myself because Weíre all gonna be dead for a long time after our life. The reason I was so blunt is because this disease has taken so much from you I couldnít stand to think of it taking your wife and kids, and firmly stand with what I said before the mind is ****ing insane man I totally get it but you Need to try and try and try (not saying youíre not) but you just gotta brother or there wonít be anything left. Youíre a smart dude I can see that just gotta startand yes chill the **** out someway haha. im 25 years old, suffer from multiple mental illnesses lost my dad when I was 9 watched him die, and my mother abused me after my father passed away. Felt like an orphan since 9 years old and has been very hard to cope and change my thinking patterns.

          I was taking king seroquel for a few years but have stopped it now as Iím trying to find a better medication thatís doesnt knock me around so much. Yes youíre right bi polar is a progressive disease, if not treated can leach out into various other problems depending on severityí, Iíd have a look at seroquel an anti psychotic you could very well be too far gone for self maintenance and an antipsychotic May be able to allow you to have the opportunity to work on your self a bit better. Being retired must help a little with the financial aspect. Try and be grateful even if it is super hard to find the positives :-)
          I appreciate the honesty man. The doctor Iím seeing wants me on lamictal. Iím afraid to take it because it has a .01% chance of getting Steven Johnson syndrome. If I think floppy eyelid is bad, holy hell I could handle SJS. But I am way past self maintenance. Lifting weights, strict diet and lots of marijuana arenít working anymore. Iím also withdrawing from Xanax that I was prescribed when all this started. Iím almost off of that thank god but itís definitely not helping the mood swings. I need the lamictal. I just donít know how I can convince my dumb ass to take it.

          I really appreciate it. I hope I get to the point youíre at soon. Happy that Iím better and just try to move on. Youíre right about the site too. It can get me down. Itís hard hearing other peopleís failures and struggles sometimes, because it just reminds me of my own.

          Iím glad youíre doing better and function well without medication. Thatís the kind of stuff that makes me feel better. I get my cpap tomorrow too so hopefully Iíll finally get a decent nights sleep. Maybe that will help too.

          Gotta add this..,on my good days, being retired is easily recognized as a blessing. On bad days, it almost pisses me off because I canít even enjoy my money, house, car, etc. I get so mentally ****ed up knowing I can afford things, yet I canít sctiakly do them. Itís been better recently. But Iím just afraid it wonít last forever. Iím thinking the medication wil help with that.

          Comment


          • #20
            SAAG

            Thank you for the kind words. I very much appreciate that you came in here and set me straight. Iíll try to start viewing things differently. You know, my dad always had this saying about taxes. He said, most people hate paying taxes, I love it. I Asked why? He said, because if Iím paying taxes, Iím making money. Itís a really good way to frame something you probably hate. Iím going to try to look at myself as strong rather than weak. However I have to convince myself. I just genuinely think I need medication because I am bipolar. When the injury/trauma hit, my disease went to itís all time worst. I was hallucinating, rapid cycling (jumping from depressed to manic in a matter of minutes), suicidal, psychotic, couldnít sleep, couldnít eat. The hallucinations were the worst. After that, I havenít been the same. I need lamictal. I believe my psychiatrist is right. It doesnít dismiss my pain, but he thinks it will help me cope with it better. Iím just so afraid to take it because of the warning of possible Stevens Johnson syndrome.

            I have a lot to work on. My sleep apnea and my mental illness. Thereís a good chance if I tear these properly, I could have a better life. I get my cpap tomorrow. The pills, Iím still trying to figure out how to get them in my mouth.

            How are you doing lately? Is there anything that specifically helps you deal with those thoughts that youíre not a good enough spouse or parent?

            Comment


            • #21
              Dowork123 Well, if you have bipolar then I totally understand why you'd say you have mental illness since that definitely qualifies... just make sure you advocate for yourself and refuse to let anyone gloss over or minimize your eye problems. Your eyes should be taken seriously and NOT assumed to be exaggerated because of your bipolar, and don't let anyone make you doubt that you need help with treating your eyes in addition to the mental side of things you're dealing with.

              re: Lamictal and the 0.01% risk of SJS... that's super rare, but I totally get being nervous about it... try to figure out the lesser evil - is it a greater risk to NOT take Lamictal? or to take it? Are there any other options that are more acceptable to you? It sounds like your bipolar is one hell of PITA to deal with right now since it's not exactly going easy on you ("hallucinating, rapid cycling (jumping from depressed to manic in a matter of minutes), suicidal, psychotic, couldnít sleep, couldnít eat")... for now, maybe do what you've got to do med wise to get it under control, and even if that means Lamictal, maybe it won't be forever...

              Treating the sleep apnea could help with the mental side of things too... my understanding is people with untreated sleep apnea often don't get a solid night's rest (and may not even realize it), so if you can get the sleep apnea treated, you may get a better quality sleep and that could have a big positive impact on your mental state.

              re: "Is there anything that specifically helps you deal with those thoughts that youíre not a good enough spouse or parent?"

              Well, I'll be honest... I have a good cry from time to time (although I try to avoid doing it too often since it only inflames my eyes more, therefore is counterproductive hehe).

              Other than that... I guess just self-talk to remind myself that this isn't my fault, AND the fact that I know my kids would rather have me this way than not at all... so clearly my being here - as suboptimal as I am - is the better option as far as they're concerned. Ditto for my spouse.

              And once in a while, I do have a good heart-to-heart with my spouse to let him know how I'm feeling... sometimes I just need to hear him tell me it's okay. The logical side of me knows this, but the emotional side of me sometimes needs to HEAR it from him again. I try not to do this too often though... I know watching what I go through with my eyes isn't easy for him, it's depressing for him too... so we both have to be as upbeat as we can, for each other's sake.

              I think the ultimate solution is to shove aside thoughts that one isn't good enough, to shove those thoughts aside as many times as it takes... when they creep back in, shove them back... repeat until they stay shoved back where they can't hurt you - they serve no purpose other than causing us misery. If we feel misery and get overwhelmed by it, it spreads to those around us like a virus and ends up in a depressing vicious circle of unhappiness for everyone. I think of negative thoughts about this eye condition and what it's done to my life as something I try to stick in a virtual black box in the back of my mind - a locked box that I try to never open because when I do I feel too much despair about this and I don't want to waste what life I have feeling sad about something I can't change (sure, maybe a better treatment will be available one day... but since it's not here now I can't fix my eyes at this moment, know what I mean?).

              re: how are you doing lately?

              The short answer is totally crappy.

              The long answer is... (if your eyes can handle reading it...)

              Not great. I was in the tropics for 4 years - discovered that if I live in 70-80% humidity environment (no air conditioner and no fans), I can live like an almost normal person (still used ointment at night, still used Restasis, still used moisture chambers... but my eyes caused me very little or no discomfort as long as I stuck to my routine). It was freaking glorious and I was able to do so many things I love.

              Last March there was a funeral at home I felt I had to return for... in winter, and despite the fact that I thought it was extremely risky for my eyes to be there, I went because I worried I'd look like an uncaring a$$hole if I didn't... I worried that people would think I didn't come home for the funeral because I didn't care or was being selfish or something - I worried that if I didn't stay as long as I was asked to stay I'd look like an insensitive jerk who was using her eyes as an excuse to avoid being there ...

              Anyhow, being home for the funeral meant I was in a non-humidified environment with very dry air for about 2 weeks - my eyes went to complete and utter hell - the last time they'd been that bad, it took me literally YEARS to recover, so I was very scared when I realized how bad my eyes had gotten from that visit. Even when I flew back to the tropics I was in eye hell as simply returning to a humid environment wasn't enough to get rid of the inflammation. (I was back to walking around with my eyes shut as much as possible, couldn't read, couldn't get any work done, couldn't use the computer other than the bare minimum, couldn't ride my bike anymore, couldn't do so many things and it was horribly depressing to go back to feeling like an invalid with hellish red eyes who couldn't do anything... even my social life was dependent on whether I could keep my eyes open that day, and when I did go out, I'd keep closing my eyes behind my moisture-chamber sunglasses when talking to people because I just couldn't keep them open). Anyhow, after 3 months and a 1-week round of steroid drops I thought I was better... a month after THAT, went back home to Canada to visit in the summer as we always do, and my eyes were PITA for most of that time. Not total hell, but definitely not feeling good.

              I've had to resort to a 1-week course of steroid drops 3 times since April (each time because my eyes went to that total hell stage where I literally cannot keep them open because they hurt too much). So after waiting a couple weeks each time in the hopes it would clear up on its own, it was either squash the inflammation with steroids, or lie around with my eyes shut all day for who-knows-how-much-longer.

              Anyhow, now we're in Europe and I'm having a very hard time... even when the humidity is high enough that I should be fine based on past experience prior to the big flare up in April, I'm still not fine. I can only assume that the horrendous inflammation that came on after that trip home for the funeral in winter did some damage to my meibomian glands, my lacrimal glands, something else... who knows... - the question is, is it permanent damage, or something I can fix if I give it enough time... So I'm trying to be patient... I think it's a reasonable possibility that I can recover again, but it'll take months of babying my eyes, maybe years again... I don't know.

              We'd already decided to spend 9-10 months in Europe (locations chosen based on climate) because when we booked all that a year prior, my eyes had been doing amazing and based on visits home to Canada, I had thought they'd be fine in the warmer European climate zones we chose. (Back when we booked our flights and accommodations I had no idea I'd be pissing them off with a family emergency trip home in winter, of course).

              On the bright side, I will never again feel guilty about saying "No, I can't come home." Of course I want to be there for people who want me around during tough times, but if it results in my eyes becoming non-functional for all practical purposes, then it's clearly not reasonable for me to go home during winter if it means staying in a non-humidified home. I've learned my lesson.

              Sigh. It is what it is. I'm trying to come up with plans... plan A for how my life can work if I cannot recover fully, and... plan B for all the projects I was in the middle of doing that I wish to resume if my eyes DO recover. We'll see which plan I get to do... I'm hoping I can do Plan B since I like that one much better... time will tell.
              Last edited by SAAG; 04-Dec-2018, 20:03.
              Yet another post-Lasik (2005)...
              Anyone have a time machine so I can go back and undo this mess?

              Comment


              • #22
                Relentless persistence. I heard that phrase yesterday and I'm adopting it hehe Because relentless persistence is exactly what people like us need.

                I want my life back... I had it back for 4 glorious years (2014 to the 2018 funeral when my eyes went to hell again), and I will fight like hell to get back to that state of affairs once again. I don't know how long it'll take, but I hope it's possible.

                I'm only in my early 40's and I'm hell bent on getting my fair share of good years of life.

                Dowork123 Since you're retired, have you considered going to the topics? We lived very cheaply in Malaysia (Penang and Kuala Lumpur), Thailand (Chiang Mai), Vietnam (Ho Chi Minh City and Hanoi), Mexico (Playa del Carmen) and Costa Rica... once you get your bipolar stabilized again, perhaps something like that is an option... it's one hell of an adventure, the high humidity can be amazing for dry eyes and one can have an excellent standard of living for a fraction of what the same would cost in Canada or the U.S. Mind you, maybe go on a 1-month trial visit to the tropics to see if your eyes feel better in such a climate before doing anything drastic (choose a place with good, clean air, too... some places have this only seasonally)
                Last edited by SAAG; 04-Dec-2018, 16:01.
                Yet another post-Lasik (2005)...
                Anyone have a time machine so I can go back and undo this mess?

                Comment


                • #23
                  Originally posted by SAAG View Post
                  Relentless persistence. I heard that phrase yesterday and I'm adopting it hehe Because relentless persistence is exactly what people like us need.

                  I want my life back... I had it back for 4 glorious years (2014 to the 2018 funeral when my eyes went to hell again), and I will fight like hell to get back to that state of affairs once again. I don't know how long it'll take, but I hope it's possible.

                  I'm only in my early 40's and I'm hell bent on getting my fair share of good years of life.

                  Dowork123 Since you're retired, have you considered going to the topics? We lived very cheaply in Malaysia (Penang and Kuala Lumpur), Thailand (Chiang Mai), Vietnam (Ho Chi Minh City and Hanoi), Mexico (Playa del Carmen) and Costa Rica... once you get your bipolar stabilized again, perhaps something like that is an option... it's one hell of an adventure, the high humidity can be amazing for dry eyes and one can have an excellent standard of living for a fraction of what the same would cost in Canada or the U.S. Mind you, maybe go on a 1-month trial visit to the tropics to see if your eyes feel better in such a climate before doing anything drastic (choose a place with good, clean air, too... some places have this only seasonally)
                  Hi SAAG

                  I read many of your posts here. You are such a strong person and a damn good writer.

                  You said you have corneal neuralgia. How do you know you have corneal neuralgia? Most of the time I do not get any relief from eye drop. Is that a sign?
                  Is there any doctor in Canada who can tell me if I have corneal neuralgia or not? I also did lasik and have rosacea.




                  Comment


                  • #24
                    Originally posted by ebi1368 View Post

                    You said you have corneal neuralgia. How do you know you have corneal neuralgia?
                    It's suspected, but can't be 100% certain what's going on with current technology available. I went to see Dr. Perry Rosenthal at the Boston Foundation for Sight, and he suspected that I have some kind of issue with my corneal nerves. So I think of my condition as being a mess of different things - all likely intertwined and affecting one another.

                    Originally posted by ebi1368 View Post

                    Most of the time I do not get any relief from eye drop. Is that a sign?
                    Not necessarily... could be your eyes are so sensitive right now that drops merely irritate them... could be you're sensitive to an ingredient in the artificial tears... or maybe it is indeed corneal neuralgia.

                    Originally posted by ebi1368 View Post
                    Is there any doctor in Canada who can tell me if I have corneal neuralgia or not? I also did lasik and have rosacea.
                    Based on my experience/reading, I don't think a certain diagnosis of corneal neuralgia is even possible for most people. One can get confocal microscopy done at a research institution to see if one's corneal nerves look normal - if they don't, that could be the cause of one's problem and one can try treatments based on that. But even if the nerves LOOK normal, it doesn't mean they are functioning normally - and there is currently no way of knowing for SURE if they're functioning normally. So either way, no matter what the confocal microscopy shows, you still can't know for SURE that you DON'T have corneal neuralgia. So you're still in the position of deciding whether or not trying neuropathic pain med drugs are something you want to do, just to see if they do anything good for you.

                    For this reason, I wouldn't seek out confocal microscopy or the like (I mean, if you happen to get it, cool... it's neat to see the pictures? lol One's inner nerd likes data, so the more data the better?) But joking aside, I really believe the focus for now is likely best spent on trying different treatments and see what makes you FEEL better. Because ultimately, how you feel is all that matters. I don't think there's much we can do with the data from confocal microscopy that we can't do by simply trying things to see what works.

                    Focus on finding a corneal specialist with a heart who really seems to care what happens to you, a doctor that believes you, a doctor who is willing to work with you to try different solutions... a doctor who is willing to advocate for you if needed (ex. my doctor applied successfully to Health Canada to get me Restasis before it was even approved in Canada... my doctor applied successfully to my provincial health department to get coverage for me to go to the Boston Foundation for Sight). And then work on building a good relationship with this doctor.

                    Also, read the DEWS report start-to-finish. Don't let it intimidate you - there is nothing in there you cannot learn - if you see a term you don't understand, google it to find out what it means. You are capable of understanding all of it perfectly if you spend the time to learn it. <3

                    If you can't read it because of eye irritation, use a screenreader to read it out loud to you - start with the section on the management/treatment of dry eye, then go through the section on diagnosing it (important to learn about the various tests your doc may perform or consider doing), then move on to the other sections in the order of what you deem to be most important for you to know.

                    To have more of a team relationship with your doctor, you need to become knowledgeable about dry eye and what the science says so you understand more about why the doctor may be doing A, B, C, and not doing X, Y, Z... also, knowing this stuff means you'll be able to decide with certainty whether or not the doctor you're seeing knows what they're doing when it comes to severe dry eye (And if they don't, you'll be confident in deciding to seek out a different doctor)... additionally, having this knowledge means you'll be able to have much more intelligent, knowledgable, productive discussions with your doctor about why you do or don't want to try a treatment, undergo a test, or whatever. It's easier to have these discussions when you can "speak their language" (for lack of a better way to put it).

                    Anyhow, I'm rambling.. .but hopefully some of this helps you. Keep on fighting the good fight... things can get better (although it often takes longer than we'd like).

                    Oh, one more thing! Some doctors will focus on the Canadian treatment guidelines more than the DEWS report. The Canadian guidelines are based on the DEWS report, but for the purposes of communicating with your doc, try to get a feel for what they are familiar with. If the Canadian guidelines are it, "speak their language" and refer to that when discussing treatments, and only bring something like the DEWS report into it if you need to discuss something omitted from the Canadian treatment guidelines. I don't have the link for that handy now... but if you do some creative googling, you'll find it eventually.
                    Last edited by SAAG; 04-Dec-2018, 20:10.
                    Yet another post-Lasik (2005)...
                    Anyone have a time machine so I can go back and undo this mess?

                    Comment


                    • #25
                      Thank you so much for your thorough message. I hope your eyes get better too.

                      Comment


                      • #26
                        SAAG

                        if you can convince my wife to quit her job, Iím out of here lol. Thatís the issue. I can support us both I definitely, but she canít be stuck at home with me. Also not Pershing the career she worked so hard for. Sheís an English teacher and she loves her job. Iíve tried several times to get her to leave. Isnít happening until later in life sadly. Maybe if things got insanely bad, I think she would move for me, not sure weíre there yet, but close.

                        I would love Marbella Spain. I hear itís great weather, lots of Brits, speak English, legal cannabis. Sounds like a beautiful place. Hopefully one day. At the moment though, Iím getting such good eye care Iím Chicago, I am afraid to leave. I have so many options for drugs and treatments at UIC. The doctor there is also watching my T cells, cytokines and chemokines to see if the immune response is falling as a result of the drug therapy. Every time he checks, my immune markets are going down. So things are moving in a positive direction. I couldnít imagine being in another country without my meds. And the heparin cannot be froze and it expires in 28 days. So that sucks. But again, Iím just happy Iím not Iím pain right now.

                        Im really sorry you are feeling badly however. I agree with Ebi, you write so well and handle this so well, itís amazing. I know youíre not perfect, but youíre kicking ass, itís nice to see. Yes, donít feel guilty for saying no to travel. Thatís something I guess Iím good at, being selfish. Iím pretty aware of what I can and canít do, probably another reason itís so mentally hard. But your health is the most important thing when you have eye problems. Itís not like a bum hip you can take a pain pill and jist sit and read. Not to downplay other types of pain, but eye pain is a special kind of bad. I think recognizing that is important for you. Lesson learned.

                        Im hoping soon you get things back on track. I donít know how you only run a week of steroids, that would do literally nothing for me. Iíd need a month lol. But again, I hoe things hit an equilibrium for you and the eyes cool out.

                        That begs another quesrion, when youíre at home eyes shut all day, how do you cope with that? I told my wife, I love you, but being around you and my daughter with my eyes closed all day, I canít do that. Itís not enough for me.

                        Thanks for sharing, your posts are great.

                        Comment


                        • #27
                          Originally posted by Dowork123 View Post

                          if you can convince my wife to quit her job, Iím out of here lol. Thatís the issue. I can support us both I definitely, but she canít be stuck at home with me. Also not Pershing the career she worked so hard for. Sheís an English teacher and she loves her job. Iíve tried several times to get her to leave. Isnít happening until later in life sadly. Maybe if things got insanely bad, I think she would move for me, not sure weíre there yet, but close.
                          Ahh, that makes sense. Well, at least it's an option to consider in future.

                          Originally posted by Dowork123 View Post
                          At the moment though, Iím getting such good eye care Iím Chicago, I am afraid to leave. I have so many options for drugs and treatments at UIC.
                          That's great that you have access to so many good treatments there - I'd be a bit afraid to leave too!

                          Originally posted by Dowork123 View Post
                          The doctor there is also watching my T cells, cytokines and chemokines to see if the immune response is falling as a result of the drug therapy. Every time he checks, my immune markets are going down. So things are moving in a positive direction.
                          Excellent news!

                          Originally posted by Dowork123 View Post
                          Yes, donít feel guilty for saying no to travel. Thatís something I guess Iím good at, being selfish. Iím pretty aware of what I can and canít do, probably another reason itís so mentally hard. But your health is the most important thing when you have eye problems. Itís not like a bum hip you can take a pain pill and jist sit and read. Not to downplay other types of pain, but eye pain is a special kind of bad. I think recognizing that is important for you. Lesson learned.
                          Definitely a lesson learned - I will never, ever make that mistake ever again. I'll just have to get used to saying no more often, and not being able to be the people-pleaser I want to be... such is life I guess. I'm so incredibly dismayed that I'm still suffering this much from the inflammation brought on by that trip home. I mean, I knew it was possible which is why I tried to diplomatically minimize the visit to 2-3 days max - I was really nervous about going longer because of the climate at that time of year being bad for my eyes - but I shoved those worries to the back of my mind, so I could make everyone happy with me, go home for the funeral and PROVE my concern/support by staying for a much longer visit - there could be no criticism of me if I stayed for the expected time, you know? No-one could think me uncaring or selfish that way. There are some people who are hard to say no to. I've got to learn to say no anyways and hope they'll eventually understand it wasn't because I don't care.

                          It really stinks to have it drag on this long and is scaring me for sure. I was so freaking close to having it all, and my eyes have brought it all to a standstill.

                          Originally posted by Dowork123 View Post
                          I donít know how you only run a week of steroids, that would do literally nothing for me. Iíd need a month lol. But again, I hoe things hit an equilibrium for you and the eyes cool out.
                          This time I did 5 days because I was scared to do more - I don't think I've ever used them so often in only 7 months and I'm terrified of getting cataracts from them, having to get said cataracts removed, and then having my eye problems end up even WORSE in terms of dryness. I'll know in a few days if the 5 days was enough... for me, the steroid drops are an overall improvement when using them, but also cause irritation (I'm assuming it's the preservatives?? who knows...) ... so it always takes a few days after stopping them for my eyes to settle into their new, improved, post-steroid normal (i.e. better than if I hadn't used steroids at all).

                          Originally posted by Dowork123 View Post
                          That begs another question, when youíre at home eyes shut all day, how do you cope with that?
                          To be honest, lately, not well. This relapse has been very hard - its like starting all over again trying to get used to not being able to do 99% of the things I want to do. I got used to my limitations, once - I built a routine that worked for me, despite my limitations, a routine that although not perfect, kept me reasonably happy. Then I got my full life and freedom to live normally for 4 glorious years. And now with this relapse I've gone soooooo far backwards.

                          I cry often when this happens - I try not to, but fail miserably during such times - I can usually choke back my tears after a few seconds or minutes because I know my eyes will suck even more if I indulge in tears for too long. But sometimes I just can't keep them in. I don't want my kids to see me that way and get worried, so I try to keep it quiet and hidden. Having to keep my eyes shut is the hardest thing for me because a) I get so bored ... audiobooks are fine, but I can only lie down listening to them for so long before I get restless. I can listen to TV with my eyes shut, but there's only so much of that I can do before being bored too. I've never been the kind of person to lie around doing nothing, and having no choice in the matter is barely tolerable to me. I need mental challenges/work to avoid boredom... but any project I'd want to do will ultimately require me to open my eyes to look at a screen or read at some point.

                          I am trying to pretend to be happy as much as possible. That might sound ridiculous, but often if I pretend I'm happy, something clicks and I start to feel happy for real (even if it's only temporary).

                          The main things that keep me going are the facts that 1) my kids need me, 2) my husband (who is my best friend in the world) definitely wants me around, and 3) there's a chance this will get better eventually.

                          Also, and I hope this doesn't offend anyone as that's not my intention... I don't believe there's any heaven or afterlife (well, maybe there is? but we have no proof of it, so I'm being conservative and assuming this life is all I have and that when it's over, I'm gone for good). So because I feel like this life is probably my ONLY chance to live and experience things, I really don't want to give it up if there's a chance it can be good again, if there's a chance there will be good things that I really don't want to miss out on. For all I know I'm going to go through 1 month - 1 year - maybe 5 years or more - of eye hell, and then end up with 30 good years. So although the hellish years suck, if I have to endure them to get to the good years that may come after, so be it. There are things I still want to experience in life when my eyes allow me to, and I don't want to give up the chance to do them.

                          One thing that helps me is to listen to audiobooks where the main character is going through some awful stuff that is WORSE than what I am dealing with. I like dystopian or post-apocalyptic fiction for this - the more scary, awful and screwed up the fictional world is, the better... those genres are good at making my life look amazing in comparison to what the characters in those books go through. And they're entertaining to listen to (well, until I get bored because I've already spent far too many hours listening to it that day...)

                          I also often go for hours-long walks even if my eyes hurt - say, 2-3 times a week, with shorter 30-60 minute walks on the remaining days. Sure, for my eyes maybe it's good to stay home in a humidified room, but it does terrible things to my state of mind. One can often walk with one's eyes closed... look ahead for uneven surfaces or possible hazards you'll need your eyes open for to navigate safely, estimate how many steps you can take with eyes closed before you need to open them again... it's not nearly as nice as walking like a normal person, but at least one gets to enjoy some of the sights when one looks around briefly, the fresh air, wildlife, etc. And taking public transit home means you can close your eyes the whole way home.

                          But wear a baseball cap if you follow my daily walk advice - I'm now getting an odd-looking white "mask" effect around my eyes where my moisture chamber sunglasses block the sun. My eyes have been so sensitive these last months that I've been unable to remove my sunglasses enough to even out my color. I bought a baseball cap yesterday to fix this since it'll provide shade for my face. As a bonus, the rim helps block some of the breeze that leaks into my moisture chamber sunglasses if I tilt my head down when walking. Every little bit of air movement bothers my eyes these days, unfortunately.

                          I also tend to eat more chocolate - I adore it. It makes me happy for a bit. And I try to eat more decadent, delicious food than usual as that gives me something divine to look forward to at mealtime. I know it's not considered healthy to console oneself with food, but it works for me - I keep it within limits... if my clothes start getting tight, I stop indulging in treats so much lol

                          Originally posted by Dowork123 View Post
                          I told my wife, I love you, but being around you and my daughter with my eyes closed all day, I canít do that. Itís not enough for me.
                          No, that's not enough for me either (although I'd love to learn how to be content that way if it ever became necessary long-term... I'm always trying to think of backup plans...). I love my husband and kids insanely much... but I really do want more from life than lying around with my eyes shut - as you say, it's simply not enough (at least not in my current state of mind).

                          For now, I feel the best thing is to wait this out while trying to bring various treatments on board. I know from past experience that it can take a ridiculously long time to get my eyes to settle down, and I'm not a patient person by nature... but my impatience is being overruled by the factors I just mentioned. As long as there is a chance that this can be fixed again, I think it's best to wait and see how things turn out.
                          Last edited by SAAG; 05-Dec-2018, 17:27.
                          Yet another post-Lasik (2005)...
                          Anyone have a time machine so I can go back and undo this mess?

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                          • #28
                            Originally posted by Dowork123 View Post
                            [USER="3809"]

                            I would love Marbella Spain. I hear itís great weather, lots of Brits, speak English, legal cannabis. Sounds like a beautiful place. Hopefully one day.
                            Well, this place is only about 5 hours away from the Vissum clinic in Alicante - and that place seems to me like the kind of place where one could get good care for severely dry eyes. So, Marbella definitely sounds like it has potential as a place to live longterm. Spain is beautiful - great food, nice weather in southern Spain, and I don't think the language would be impossibly hard to learn if one planned on staying longterm. And besides, there's always the Google translate app for help in the meantime hehe

                            https://www.vissum.com/en/our-centers/vissum-alicante/

                            Good doctor: https://www.vissum.com/en/medical-te...l-alio-y-sanz/

                            Doing research on ocular surface disease including dry eye: https://www.vissum.com/en/research/

                            And as for the bipolar side of things, this isn't what I'd consider a rare issue, so I bet you could find a psychiatrist in Spain who could continue your care for that, too.

                            When you're feeling down, daydream about life in Marbella some day in the future when your wife retires ... And if she really loves teaching, maybe after she retires from traditional work, she could tutor online, create online courses to help people improve their skills, etc. ... if she wished to continue teaching for a while longer :-)
                            Yet another post-Lasik (2005)...
                            Anyone have a time machine so I can go back and undo this mess?

                            Comment


                            • #29
                              Originally posted by SAAG View Post

                              Well, this place is only about 5 hours away from the Vissum clinic in Alicante - and that place seems to me like the kind of place where one could get good care for severely dry eyes. So, Marbella definitely sounds like it has potential as a place to live longterm. Spain is beautiful - great food, nice weather in southern Spain, and I don't think the language would be impossibly hard to learn if one planned on staying longterm. And besides, there's always the Google translate app for help in the meantime hehe

                              https://www.vissum.com/en/our-centers/vissum-alicante/

                              Good doctor: https://www.vissum.com/en/medical-te...l-alio-y-sanz/

                              Doing research on ocular surface disease including dry eye: https://www.vissum.com/en/research/

                              And as for the bipolar side of things, this isn't what I'd consider a rare issue, so I bet you could find a psychiatrist in Spain who could continue your care for that, too.

                              When you're feeling down, daydream about life in Marbella some day in the future when your wife retires ... And if she really loves teaching, maybe after she retires from traditional work, she could tutor online, create online courses to help people improve their skills, etc. ... if she wished to continue teaching for a while longer :-)
                              Sorry for the delay, I wanted to put appropriate time into a response. Itís good to know there are places I can go. But day dreaming about Spain sadly doesnt help much. Mainly because Iíve put off my happiness thinking I could do these things later in life, now look at me. So thereís this anger I have with myself not living my life, and putting it on hold for some later date. A date that may never come now.

                              That being said, id love to move now. Iíve offered to just pay her salary but she doesnít want to stop working. She worked hard to be an English teacher and she enjoys it. Fair enough ya know, I canít ask her to leave what she loves. But Iíve been asking her to do that for years, Iíve been wanting to move to California forever. I just feel weíre too young to make those moves now but damn do I want to. If I was single Iíd be gone yesterday.

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                              • #30
                                Being on my phone I canít quote these threads properly, I can barely spell check on this phone lol. Iíll do the best I can scrolling!

                                I want ant to address the God aspect first. I do not believe god exists in any manner that humans believe today. That doesnt mean there is no god, but like you said, Iím not banking on an afterlife and a guy with a big gray beard to welcome me. So yes, this is my only chance at life. My only chance at a conscious experience. But I donít see it the way you do. When I die, Iím gone. And to be fair, at least with respect to my consciousness, Iím not going to be here to care one way or another. So for me, I donít mind death. I know itís goijg to happen regardless, Why drag it out? I care more about how bad life can be rather than how bad death can be. Youíre right, you could argue that the future may be better. But to what end? To eventually just get more sick. Itís a tough one...not having an understanding of why this happens (human life) really makes it hard to see a point to it all. I literally broke down crying yesterday and thought, whatís the point of all this suffering. Makes no sense...I am stupid in relation to any possible creator, yet I could have designed a better system than this.

                                Not to scare you further on the steroids, but if it were cataract I wouldnít care. A cloudy lens can be replaced, of course neither of us want surgery, but there is a fix. However steroids cause glaucoma. Which is irreversible blindness. Thereís no fix for that once youíve lost vision. Please use the steroids in you need, but yeah, it sucks that the only thing that helps comes with that huge of a risk. Iíve been on them for 5 months now. My pressure was 13/14 it jist went up to 21/23. So we have to watch it now, worries me because dr Jain said I still need them because of my lids. I donít want to add glaucoma meds.

                                I may try walking like that, but itís hard for me to function when Iím that bad. I honestly donít know how you do it. There were a few times when my eyes were so bad I just rolled the windows down in my car and dealt with the pain because it never went away anyway. But that always made things worse. So I hunker down and try keeping my eyes closed and wet. Those tones were so depressing bent basically shackled to a bed. Ugh!

                                As as for the chocolate, I love food too. To be honest, Iím realizing thatís partly what caused this. Seems like the pathogenesis of my disease is multifactorial. But one of the major factors is hyperglycemia and hyperleptinemia. I can say for sure that I have run high blood sugars for years even though I wasnít fat. I gained 113lbs if muscle in 16 years. I was eating so much food to grow, god I wish I could do that over again. So I canít enjiy sweets anymore. Itís beenn4 days of fasting and eating perfectly and finally my fasting blood sugar went from 108 to 98. I canít eat chocolate anymore. Let me say, if you like macaroons and youíre ever in the states, Makarohn does an amazing job. I love food! Itís crazt to think all those years of eating Helped cause this. Itís hard to get older and have no choice but to change.

                                Same me goes for smoking weed. I have to change that. I canít keep smoking like this. Iím realizing the sleep apnea is probably being made worse by the smoking. I didnít realize how weak my lungs were. When you take the smoking, then add in the fact that Iím a muscular guy that isnít working out. Man, Iím putting stress on my heart and lungs. I have all this muscle to supply with blood and my cardiovascular system cannot keep up. I need to start lifting regularly and HARD again. This isnít a desire, itís a requirement.

                                Iím sorry youíre doing so poorly. Iíve seen your old posts on here and I see you were gone for a while. Thatís always a good sign. Although things are rough now, I think you have the tools required to get past it. May I ask, have you ever thought about getting another opinion on your eyes? Do you think anything has changed medically that it may be worth seeing a top specialist and see if they can offer you better treatment?

                                I was lucky to meet Jain at UIC. He has so many drugs at his disposal to help with dry eye itís insane. When is the last time you were examined? I also understand that can be hard and frustrating as well so I get it. Just curious because Iíve been given drugs I didnít know existed. And theyíre working, so j wonder if hereís anything out there anyone could do to help you.


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