My fears [TRIGGER WARNING]

[Guest]

It’s good to know there are places I can go. But day dreaming about Spain sadly doesnt help much. Mainly because I’ve put off my happiness thinking I could do these things later in life, now look at me. So there’s 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.

Please try not to be mad at yourself - you're only 38. We're all pretty much programmed since birth to work our butts off until we're 55 or 65 and only THEN retire. So putting your life on hold for future was what you were likely taught to do, whether you noticed it or not - it's the way our society generally works. It's very hard to do differently since all we hear is how much money we'll need to retire, that most people don't save enough, that we've got to work, work, work to earn/save more etc. So one figures one had better take advantage of good health in one's younger years and do just that - work, work, work. It's not your fault.

And what are those things you put off for later in life? Why not do some of them now? If it's travel, plan it around your wife's vacation time and school breaks for your kids.

Whatever it is, you worked hard for your money - you're retired now, right? So spend it on doing those things you want to do. It'll help you feel happier. You deserve some of that. I know it won't be the same as it would be if your eyes were better... but surely there are at least some things on that list that you could enjoy, even now. Take a good, hard look at your wish list and start planning to make some of them happen.

Do you wear moisture chamber glasses? If not, get some. I'm not going to lie - my first pair made me cry because this was not exactly the look I was hoping for in anything I'd ever wear. But. They also allow me to do things I'd never be able to do without them. And the pleasure I've gotten from doing those things DEFINITELY outweighs the displeasure of having to wear these moisture chamber glasses.

And to be fair, at least with respect to my consciousness, I’m not going to be here to care one way or another. So for me, I don’t mind death. I know it’s goijg to happen regardless, Why drag it out?

I don't see myself being okay with death until I've done absolutely EVERYTHING I want. I have not eaten a lifetime's worth of chocolate yet, for one thing - I want my fair share

And I haven't done all the things on my bucket list yet... so that's a problem, too. It sounds like you haven't either, so maybe that's one more reason to keep fighting hard to fix this eye thing (and even if not perfect, to at least make it liveable)...

But everyone is different... I know... and I don't know what it's like to be in your shoes right now. I just hope things get better for you so that you can enjoy life again.

You’re right, you could argue that the future may be better. But to what end? To eventually just get more sick.

I'm a realist - I plan for the worst all the time... and I sometimes think the same thoughts you're saying. But you have to keep fighting them since the truth is that whatever the odds, we don't know for sure that getting more sick is the only option. We just don't know 100%.

Honestly, you've got to keep trying to shove such thoughts out of your mind... kick them back... get rid of them. They're no good for you.

And if you're not having any luck shoving those thoughts away, look for distractions to make now a bit better. Music, audiobooks, listening to the birds outside - whatever small thing you can find to lessen the difficulty of what you're going through now, you've got to do it. It all adds up.

Plus, your wife and kids need you. So if you can't muster the strength to do this for yourself right now, do it for them.

what’s the point of all this suffering. Makes no sense...

Agreed, it doesn't make sense at all. It's a sucky system, whatever it is. But we can't change it so just have to be strong.

However steroids cause glaucoma. Which is irreversible blindness. There’s no fix for that once you’ve lost vision.

As far as I know, the kind of glaucoma caused by steroids is open angle, which is similar to the regular kind of glaucoma that a lot of people get who do NOT use steroid drops.

And this kind of glaucoma doesn't rob you of your sight overnight or whatever - it's not sudden. It's a slow thing...

And slow is a good thing because it means with proper monitoring, our docs will KNOW when our pressure is in the danger zone and we can then take steps to fix it BEFORE it causes blindness.

Usually pressure increases due to steroids are reversible when you stop the steroid. If you are one of the few for whom the pressure does not normalize, you'd be put on glaucoma drops to lower it into a safe range.

If you cannot stop the steroids because your eyes will go to hell, then with glaucoma meds you can lower your pressure to a safe range.

So there are options. I also consider the possibility that there's a chance of being unable to fix it ... what if one doesn't respond to the glaucoma meds... lots of what ifs... but in this case, odds are good things would be okay in the end. I mean, we could get in a car accident every time we're in a car - but we don't waste time thinking about it since the odds are low, right? I think your glaucoma worries can be safely put in that category - take precautions (as you are, you're being monitored), and don't worry about blindness since the odds of that happening are minuscule due the fact that you have a doc who is monitoring the situation and knows how to treat it.

The biggest danger with glaucoma is when one is NOT being followed by a doctor, one's pressure goes up, and no-one knows. Having this go on long-term can indeed cause irreversible blindness... but with modern monitoring, blindness from glaucoma can be avoided.

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 don’t want to add glaucoma meds.

Okay, so you're at the upper limit of normal then. What's important is that you KNOW this... that your doctors KNOW this. You're being monitored. So keep a close eye in this, definitely. But you're definitely not necessarily doomed either.

I wouldn't want to add glaucoma meds either, so I think I understand your hesitance... and hopefully you won't have to add them. But wait and see... maybe you won't have to use them.

Be aggressive with dietary changes and anything else you can do to reduce inflammation to the tipping point where your eyes can function better. I think of it as kind of like a diet to lose weight - losing weight (reducing inflammation) sucks because you have to go over-the-top to make a difference. It's bloody hard. Exercise religiously, eat like a saint... but once you get to your goal weight, you can loosen up a bit, you can enjoy treats from time to time because you're no longer trying to maintain a caloric deficit.

So with lowering inflammation to allow your tear system to function better you've got to get your eyes to that tipping point too... be aggressive now... it'll suck since you have to do EVERYTHING possible... but once you reach the tipping point you can relax a bit and be less strict about things. You just have to find the right mix of strategies to get that inflammation down.

I may try walking like that, but it’s hard for me to function when I’m that bad. I honestly don’t know how you do it.

Well, the way I see it is if I really can't stand another minute home with my eyes shut, I may as well vary my scenery a bit. Maybe it would help you too... maybe try it and see... you've got to choose your walking path strategically, so the need to rest your eyes won't put you in danger of tripping/getting hurt. But maybe you'll find going to the trouble of doing so is worth it, as I do. Fingers crossed!

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 can’t enjiy sweets anymore. It’s beenn4 days of fasting and eating perfectly and finally my fasting blood sugar went from 108 to 98.

Well, it takes a heck of a lot of willpower and persistance to gain that much muscle - that's not an easy feat. So maybe if you could pull that off, you can find the strength to keeping on looking for a way to make this eye thing tolerable, too.

And learn to cook, if you don't already know how. One can make amazing meals that are prefectly healthy, with a low impact on blood sugar, that are so crave-worthy that they're almost as good as chocolate. Shocking, but true. What's crave-worthy to you may be different from me.. but nonetheless, there's something like that out there for you. FoodTV and the FoodNetwork are your friend :-D And don't waste time making online recipes unless they have lots of great reviews.

Let me say, if you like macaroons and you’re ever in the states, Makarohn does an amazing job. I love food!

Noted! :-)

Same me goes for smoking weed. I have to change that. I can’t keep smoking like this.

Nope, and it's good you know that. Change is hard... but will be worth it.

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 isn’t a desire, it’s a requirement.

And don't forget the cardio. Aside from the fact that it will strengthen your heart so it can more easily pump blood to all of that muscle mass you have, the endorphins released from cardio can help with your mental state. Getting your heart rate up for 30 minutes each time should do the trick. Try doing that at least 5 times per week so you get that natural endorphine boost often.

And this may sound stupid because it's such a simple, small thing, and your problems certainly aren't small. But seek out something funny every day - find a comedian you like and watch their shows (lots have Netflix specials, for example), a funny audiobook... funny cat videos on Facebook... a good laugh on a regular basis will do you good. If you're anything like me, you may not feel like doing this when you're feeling really down, sometimes the urge to wallow in it is strong... but it's worth pushing past it because when you find a good laugh, it feels really good.

Every little thing adds up... and you need to not only get your eyes over the tipping point to where they're doing better, but your mental state, too.

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?

It comes down to money. I spent tens of thousands on treatments since LASIK - I believe the total was up to 30k last time I added it up (I stopped adding it up years ago because the total upset me since I work so hard for my money and to have to blow it on THIS - of all things! - bugs me a lot). My eye drops/supplements was costing me 6k a year (most of that went towards eye drops), and now that my eyes have flared up again, it appears that I'm working my way up to that again. And frigging hell, this fact frustrates the crap out of me because there are soooooo many other things I'd rather spend that money on. Sigh.

Anyways, I'm going through the latest DEWS report.. making a list of things I want to try when I go home in June.

I've considered flying to see other specialists, but my concern is that flying out to see someone (and hotel stays) get pricey when you add if all up over time... I doubt they can fix me in one visit... I'd need followup and multiple appointments over many months for them to see if what they are doing is working, to adjust doses or whatever, to try new things, etc. So when I think of how much I could spend on this, it seems like a bottomless money pit that will consume everything if I'm not careful... with no guarantee of anything actually working.

I was lucky to meet Jain at UIC. He has so many drugs at his disposal to help with dry eye it’s insane.

That's so great that you found him! Does he have stuff that goes beyond what's discussed in the DEWS report?

When is the last time you were examined?

Every summer I see my regular corneal specialist for a full exam.

Just curious because I’ve been given drugs I didn’t know existed. And they’re working, so j wonder if here’s anything out there anyone could do to help you.

May I ask what meds? Frequency of administration (ex. twice daily, 4 times daily, etc.), name of active ingredient, and % strength of active ingredient?

It'll give me more to look into, but more is good in this case! :-)

[Guest]

SAAG

here are the pictures, all compunded at UIC preservative free in saline. Dr Jain is an invited member of the dry eye workshop. So he had at the very least I’m assuming most of what they report to be available. Heparin, tacrolimus, cyclosporine...there’s an entire list he gives his patients. I’ll look for it and post the picture of that also.

methyprednisolone 1% taken once per day (started with a 4/3/2/1 taper)

serum tears 50% as needed

heparin 100iu/ml 3 times per day

[Guest]

SAAG

im going to address one pint and use this as a placeholder..I have to go look at a house today 90 mins away. So I’m going to nap and get ready for this.

Alright you said said takes a lot of will power to gain that muscle. Maybe so, but I don’t attribute it to somethingh special I know that others don’t. It’s not a choice (I don’t believe in free will, we can get into that too lol). I think I was born with that mentality and my environment forged it into steel. I think this was the only way I could have been, if you follow me on that sentiment. There’s no way looking back, that I could have been shown or told anything to fix this aside from literally seeing into the future. I think that goes for pretty much everything I’ve done. I believe chive is an illusion, I’m just a passenger on this ride. Sucks I got this brain and this family.

Ill be back!! Hope you’re doing well and the screen isn’t bothering you too much.

[Guest]

SAAG

here are the pictures, all compunded at UIC preservative free in saline. Dr Jain is an invited member of the dry eye workshop. So he had at the very least I’m assuming most of what they report to be available. Heparin, tacrolimus, cyclosporine...there’s an entire list he gives his patients. I’ll look for it and post the picture of that also.

methyprednisolone 1% taken once per day (started with a 4/3/2/1 taper)

serum tears 50% as needed

heparin 100iu/ml 3 times per day

Thank-you so much for this! Very much appreciated!

[Guest]

Alright you said said takes a lot of will power to gain that muscle. Maybe so, but I don’t attribute it to something special I know that others don’t. It’s not a choice (I don’t believe in free will, we can get into that too lol). I think I was born with that mentality and my environment forged it into steel. I think this was the only way I could have been, if you follow me on that sentiment.

I can see what you mean. A lot of who we are is just the way we were born. I see that with my kids - they are who they are, and I seem to have very little influence in their overall personality, that's for sure.

As far as free will goes... I think I'd be bummed out if I thought I couldn't change anything long term because I'm just on a ride. I'm a type-A personality and I like control. lol

Hmm... but nonetheless, even with the outlook that you're only on a ride that you have no way of directing, I suppose there's still the possibility of things getting better... you just don't know when that will be. So maybe this is just a crappy part of the ride you have to endure to get to a better part that's coming up...

Hope you’re doing well and the screen isn’t bothering you too much.

My eyes are better today than they were yesterday - it's been 48 hours since my 5-day run of steroids ended. Based on past experience, it could take up to a week or more for them to reach full post-steroid improvement. I'm cautiously optimistic. After almost 3 weeks of my eyes being totally rotten, it's nice to see the potential for getting back to a more tolerable state again. Even today has been pretty decent (although I'm still majorly limiting screen time, I can at least get my eyes to a comfortable state where they aren't bothering me every second).

[Guest]

SAAG

as promised...I think one of the cooler drugs is DNAse. It’s breaks down extra cellular dna which is found in the tear film of dry eye patients. Jain runs the clinical trials for the drug in particular. Hey, maybe you could get into the trials. If you go to UICs website you can see if you’re eligible. It would be free. That’s cool if you could get out here.

[Guest]

Thanks so much Dowork123 I'll definitely take a look!

How are you doing today?

[Rebecca Petris]

It is soul crushing to go between pain and being normal.

Wow you really nailed that hopeful_hiker While PAIN is a big part of the reasons for mental health impact, the variability of dry eye symptoms is a huge contributor too.

[Guest]

Thanks so much Dowork123 I'll definitely take a look!

How are you doing today?

I’m doing pretty good. Had a few days where I went out with pretty much no issues. Functioning like my old self pretty much. It’s the first time in 14 months. Had a great weekend with my wife. I forgot how happy we were before all this happened. We really had a perfect life. Ugh!

Anyway, I hope you’re feeling better post steroids. Although it may still be too Soon for you to tell based on your timeline.

[Guest]

Dowork123 I'm so happy to hear you're doing better - that's great news! My eyes are continuing to improve, which is awesome. With any luck, both of us will continue to improve and have many more good days!

[Guest]

Holy shit this required a trigger warning? I wonder who and why...that sucks.

[Rebecca Petris]

Dowork123

I searched the forum on suicide and flagged recent threads that came up. This was one of them. (Your post, first page.)

[Guest]

Dowork123

I searched the forum on suicide and flagged recent threads that came up. This was one of them. (Your post, first page.)

No worries, I just feel bad...not my intention.

[Milo007]

Holy shit this required a trigger warning? I wonder who and why...that sucks.

I was surprised as well. Lol

[Rebecca Petris]

By flagging it I wasn't suggesting anything inappopriate was posted. There are viewers who appreciate a heads-up to be able to avoid suicide talk when they know themselves to be vulnerable. If you haven't noticed my other posts & blog, well, it's very important to me right now to try to balance the needs of people who need to tell their stories with the needs of those who are getting triggered. Dowork123 it seems to come perfectly naturally to you to wear your heart on your sleeve here, combined with a very articulate voice, but... for a lot of others it's just not like that. And Milo007 there's nothing funny about it. There's a lot of press coverage here about lasik and suicide right now that is hard for people.