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Hey Everyone,
I've been lurking on the forums for a decade now and thought that it's about time I tell my story and hopefully give some encouragement to some of you who are on the same sort of path as I am...I'm not sure if this should be in the stories or triumph section since both seem to be present....but I think the ending bits are leaning more towards triumph so I'm posting here...
...Be forewarned! It's been a long war and this is a long post....
I've been suffering from MGD for 7 years now....my condition is caused by complications from seborrheic dermatitis (focused only on my scalp and more "invisibly' on...at the moment, where I'm at the best I've ever been in my life in regard to my condition, I have a TBUT of 1-2 seconds...my ICU scores are 37 for both eyes...I shudder to think of how these scores would have been back when things were at their worse....it sounds funny to think of that as the "best" but it's one of those laugh or cry things, and I'd rather laugh....
My story begins in 2007... 7 years ago....
My life was at an all time peak....
Always a bright student, I had just graduated first class honors , top of my class...I was dating one of the prettiest most intelligent girls on the campus....we were a picture perfect couple...both star students, both on their way to pursue graduate studies in cognitive neuroscience....
My life dream was to be a professor....specifically the study of human memory using neurosciencem mathematical and computational techniques....learning and studying was/is my drug....
Then the troubles began....
It started out with what I now recognize to be blepharitis....waking up each morning with my lids stuck together with gunk, eyes watery,....but after the mornings had passed things were fine....I didnt think anything of it at the time *kicks self*....then at night, once I closed my eyes to go to sleep I could feel the presence of irritating stuff in my eye....looking closely in a mirror I saw the dreaded mucus strands crisscrossing across the cornea....still after removing them things were fine and the days were alright so life went on as always....
Then I started feeling tired a lot more than I previously had..... especially while hanging out in air conditioned places....being at the mall (which I love , being a big city kid) seemed to be a lot more exhausting than it was in the past... I ,regrettably ,attributed a lot of the fatigue to my partner.... thinking that maybe I just needed more alone time..... I ended up pushing her away to hard....and things ended between us....not well.... she , quite understandably, couldn't understand the change that had come over me....
The worse however, was yet to come....
The tiredness just kept growing.... I had started working as a graduate tutor while prepping for my GREs and being in the office seemed to hurt my eyes....
"Ah, it must just be a temporary thing"...I thought and grabbed some cheap eyedrops off the shelf with the dreaded BAC preservative....some minor relief at first....but things were getting bad...fast....soon I was spending more than half the day with my eyes closed...and the pain was growing....my eyes hurt....they hurt like nothing I had felt before in my life....
I needed help....and went to see my first ophthalmologist...
Who.....was a little helpful.....
After identifying the presence of severe cornea damage.....and a tear break up time that was effectively 0, my tears were just breaking up the moment after I blinked....he tossed some Systane drops over.....
They helped a little...kinda like how even holding your hands over a gaping wound will slow the bleeding.....at least my eyes weren't burning in flames all the time...now I had graduated to a place where it just felt like some sadist was throwing sand in them all the time while a desert wind was blowing in my face....
I went back to see the doctor who said there was nothing else that could be done in a fairly dismissive, man up, kind of way.....TBUT was at 1 second......and I could barely keep my eyes open....but apparently it wasn't a serious condition in his eyes.....
So the struggle began.....working full time....trying my best to cram for my GREs at night, not to mention the tons of papers I needed to read to prepare my personal statements.....
After a year of this torment though, my will was starting to break down....I was starting to get psychologically unbalanced.....I remember distinctly how I was back then thanks to my journal-ing habit....
Still emotionally devastated by my recent breakup....knowing that I had a condition that was simply unbearable, but that apparently had no existing cure, nothing I could try out...I remember often wishing I were just blind.....if my eyes were gone at least I could think which the pain was making almost impossible to do...heck I could barely think about my condition in a logical reasonable way.....it felt like somebody had robbed my future.....how was I ever going to get into another relationship?....who was I kidding by still trying to get into graduate school?....I used to be a book a week kind of guy, reading was a HUGE part of my life....now I had to fight a war with pain just trying to read half a page...for someone intent on pursuing a life of academics...to not be able to read?....to study?...my life felt like an endless downward spiral....
Somehow....I kept it all together....scoring a decent 1500 on my GREs..... building a solid reputation as an educator at my university.... even publishing a few papers and presenting other findings at a dozen o so conferences.....honestly, I don't know how I kept everything going....that period of my life is a haze of pain and constant exertion of willpower....
It was also then that I learnt personally that dry eyes is an invisible disability....people around me couldn't see it or my pain....they dismissed it...... "Oooo~ it's like having tired eyes"..following up with stories about how their eyes have been tired lately so they understand perfectly what I was going through...NO...it's not like having ****** tired eyes....if you've never lived with MGD for at least a few years, you have NO idea how it's like....not a clue....I wouldn't have been able to understand how it is myself if I never got hit with it....I'm sure most of you guys would agree..
There was no one to listen and understand....yeah people would listen for a while and then offer their sage advice for tired eyes and eyestrain and how it was so simple to make it all better....."oh you should try these magic berries, they'll make it all better"....
I learned really quickly that people didn't/wouldn't/couldn't understand.....so there wasn't a point in showing the torment....seeing that inability to relate and the condescending advice and statements of "yeah I know exactly how it's like, my eyes were tired last night" would simply add to my inner rage......I learned to live with pain....I learned not to let it show.....I learned to endure....
And I took control of my life...I started studying the disease with systematic rigor. like it was one of my research topics.....I experimented with and isolated the treatments that would alleviate the problem (for me it proved to be refresh endura which I use to this day albeit with it's new name)...and step by step I began to alleviate my problem....on my own.....
I also made the jump to The Goggles....The Airrage series to be specific....they've been the biggest help of all....now at least being in AC places was difficult, not impossible....the constant fogging was an annoyance but I couldn't find a good antifogger that lasted for any decent length of time without working by drawing in moisture (defeating half the purpose) (any recommendations welcome! I've tried tons).....
They did however introduce a new element into my life....now my problem was visible....and people would be supportive and understanding right! Yeah right.....
People just kept saying things like "You look so much better without the goggles" "When will you stop wearing them?" "Yeah at least we can finally see your eyes properly, you should take those goggles off for good man" when i take them off for a spell....and almost everyday there would be stupid jokes about my new attempt to be a superhero or the never funny remarks about my new obsession with swimming....even after explaining, even close friends couldn't resist taking a dig not understanding how much of a struggle this was for me...how much pain I still in behind the glasses....it was like being a drowning man clinging desperately to a float in a raging sea while everyone was lounging about on a cruise ship making fun of his float and how he should be a man and swim on his own ....
Zooming forward and cutting out a bit of the middle story....I got into grad school....
And I started well....struggling like crazy with my dry eyes but somehow still topping my classes and making a great impression on my professors and my adviser....
Inside though, I was starting to burn out......5 years of pain were starting to take their toll....
I came probably the closest I've ever come to depression.....I was struggling hard against it....
In my mind thoughts like....It's only going to get harder from here....what's going to happen as you get older and more of your glands die out?....can you really continue to fulfill all the hopes and dreams people have for you?.....How is going to be being alone for the rest of your life? You're already giving all your energy on your dry eyes war, you've got nothing left to give anyone and you know that..... It's not fair....why me?....everyone else I know is fine....Why...why....Lots of self blame too....could I have done anything to prevent this? Did I cause this? Is this my fault?....
Until after one restless sleepless night too many....I punched myself hard (literally) and made my decision...I was not going to have the epithet on my tombstone read...Here lies X...He would have been amazing....if he hadn't had dry eyes....
Those were the words I needed and hold on till today.... yes it's unfair...yes it hurts....yes you want to spend every moment thinking about the pain and if there's anything that can make it better.....are you ready to have that line... "She/He had dry eyes"...be the story of your life?....I wasn't going to let that be my story....
And so I press onwards.....growing ever more determined and ever stronger with every passing day....I will make my life something worth remembering.....I will not let my condition dictate what I can be.....I started fighting the condition with everything I had...hot compresses....periodic gland expression....lid washes (fortunately I'm not sensitive to any of the ingredients in over the counter stuff).....etc....
That was a year ago....I've continued to excel in my program....learning the neuroscience and mathematical techniques I had always dreamed of acquiring....and acquiring them (at least in the eyes of my professors) well....
And recently a possible light in the darkness arrived...
I finally consulted with a dry eye expert who (finally) knows his stuff....aware of all the information and journals I had read on the condition......we're working together now to try to work out possible treatment approaches that could help....
Just yesterday I had the lipiflow procedure done after testing and confirming that 80% of my glands are still viable....possibly due to my active management over the years or that might just be me trying to have some sense of agency over the problem....tentatively things are starting to feel better....wooohoo~ I can hold my eyes open for 10 seconds without pain! It's magic! ...Over the next few weeks I'm hoping to continue see some improvement in my condition (heck it can't get worse).....I'll be wandering across Europe for the next month so it would be doubly awesome to have relief while on holiday....
And even if things don't get better or if this is as good as it's going to get.....I'm ready for that....terrible as it may be, I'm more than just a person with dry eyes...I remembered a time where my eyes did not worry me and I was striving towards so many things....I'm not going to let anything stop my journey... Best of luck to your own journies....I know it's not easy and some of you probably have it worse than me....I can only imagine how difficult things must be...especially for those of you who have ultra-severe dry eye conditions that don't have as many possible treatments as MGD has.... Keep the hope...Keep living...
I've been lurking on the forums for a decade now and thought that it's about time I tell my story and hopefully give some encouragement to some of you who are on the same sort of path as I am...I'm not sure if this should be in the stories or triumph section since both seem to be present....but I think the ending bits are leaning more towards triumph so I'm posting here...
...Be forewarned! It's been a long war and this is a long post....
I've been suffering from MGD for 7 years now....my condition is caused by complications from seborrheic dermatitis (focused only on my scalp and more "invisibly' on...at the moment, where I'm at the best I've ever been in my life in regard to my condition, I have a TBUT of 1-2 seconds...my ICU scores are 37 for both eyes...I shudder to think of how these scores would have been back when things were at their worse....it sounds funny to think of that as the "best" but it's one of those laugh or cry things, and I'd rather laugh....
My story begins in 2007... 7 years ago....
My life was at an all time peak....
Always a bright student, I had just graduated first class honors , top of my class...I was dating one of the prettiest most intelligent girls on the campus....we were a picture perfect couple...both star students, both on their way to pursue graduate studies in cognitive neuroscience....
My life dream was to be a professor....specifically the study of human memory using neurosciencem mathematical and computational techniques....learning and studying was/is my drug....
Then the troubles began....
It started out with what I now recognize to be blepharitis....waking up each morning with my lids stuck together with gunk, eyes watery,....but after the mornings had passed things were fine....I didnt think anything of it at the time *kicks self*....then at night, once I closed my eyes to go to sleep I could feel the presence of irritating stuff in my eye....looking closely in a mirror I saw the dreaded mucus strands crisscrossing across the cornea....still after removing them things were fine and the days were alright so life went on as always....
Then I started feeling tired a lot more than I previously had..... especially while hanging out in air conditioned places....being at the mall (which I love , being a big city kid) seemed to be a lot more exhausting than it was in the past... I ,regrettably ,attributed a lot of the fatigue to my partner.... thinking that maybe I just needed more alone time..... I ended up pushing her away to hard....and things ended between us....not well.... she , quite understandably, couldn't understand the change that had come over me....
The worse however, was yet to come....
The tiredness just kept growing.... I had started working as a graduate tutor while prepping for my GREs and being in the office seemed to hurt my eyes....
"Ah, it must just be a temporary thing"...I thought and grabbed some cheap eyedrops off the shelf with the dreaded BAC preservative....some minor relief at first....but things were getting bad...fast....soon I was spending more than half the day with my eyes closed...and the pain was growing....my eyes hurt....they hurt like nothing I had felt before in my life....
I needed help....and went to see my first ophthalmologist...
Who.....was a little helpful.....
After identifying the presence of severe cornea damage.....and a tear break up time that was effectively 0, my tears were just breaking up the moment after I blinked....he tossed some Systane drops over.....
They helped a little...kinda like how even holding your hands over a gaping wound will slow the bleeding.....at least my eyes weren't burning in flames all the time...now I had graduated to a place where it just felt like some sadist was throwing sand in them all the time while a desert wind was blowing in my face....
I went back to see the doctor who said there was nothing else that could be done in a fairly dismissive, man up, kind of way.....TBUT was at 1 second......and I could barely keep my eyes open....but apparently it wasn't a serious condition in his eyes.....
So the struggle began.....working full time....trying my best to cram for my GREs at night, not to mention the tons of papers I needed to read to prepare my personal statements.....
After a year of this torment though, my will was starting to break down....I was starting to get psychologically unbalanced.....I remember distinctly how I was back then thanks to my journal-ing habit....
Still emotionally devastated by my recent breakup....knowing that I had a condition that was simply unbearable, but that apparently had no existing cure, nothing I could try out...I remember often wishing I were just blind.....if my eyes were gone at least I could think which the pain was making almost impossible to do...heck I could barely think about my condition in a logical reasonable way.....it felt like somebody had robbed my future.....how was I ever going to get into another relationship?....who was I kidding by still trying to get into graduate school?....I used to be a book a week kind of guy, reading was a HUGE part of my life....now I had to fight a war with pain just trying to read half a page...for someone intent on pursuing a life of academics...to not be able to read?....to study?...my life felt like an endless downward spiral....
Somehow....I kept it all together....scoring a decent 1500 on my GREs..... building a solid reputation as an educator at my university.... even publishing a few papers and presenting other findings at a dozen o so conferences.....honestly, I don't know how I kept everything going....that period of my life is a haze of pain and constant exertion of willpower....
It was also then that I learnt personally that dry eyes is an invisible disability....people around me couldn't see it or my pain....they dismissed it...... "Oooo~ it's like having tired eyes"..following up with stories about how their eyes have been tired lately so they understand perfectly what I was going through...NO...it's not like having ****** tired eyes....if you've never lived with MGD for at least a few years, you have NO idea how it's like....not a clue....I wouldn't have been able to understand how it is myself if I never got hit with it....I'm sure most of you guys would agree..
There was no one to listen and understand....yeah people would listen for a while and then offer their sage advice for tired eyes and eyestrain and how it was so simple to make it all better....."oh you should try these magic berries, they'll make it all better"....
I learned really quickly that people didn't/wouldn't/couldn't understand.....so there wasn't a point in showing the torment....seeing that inability to relate and the condescending advice and statements of "yeah I know exactly how it's like, my eyes were tired last night" would simply add to my inner rage......I learned to live with pain....I learned not to let it show.....I learned to endure....
And I took control of my life...I started studying the disease with systematic rigor. like it was one of my research topics.....I experimented with and isolated the treatments that would alleviate the problem (for me it proved to be refresh endura which I use to this day albeit with it's new name)...and step by step I began to alleviate my problem....on my own.....
I also made the jump to The Goggles....The Airrage series to be specific....they've been the biggest help of all....now at least being in AC places was difficult, not impossible....the constant fogging was an annoyance but I couldn't find a good antifogger that lasted for any decent length of time without working by drawing in moisture (defeating half the purpose) (any recommendations welcome! I've tried tons).....
They did however introduce a new element into my life....now my problem was visible....and people would be supportive and understanding right! Yeah right.....
People just kept saying things like "You look so much better without the goggles" "When will you stop wearing them?" "Yeah at least we can finally see your eyes properly, you should take those goggles off for good man" when i take them off for a spell....and almost everyday there would be stupid jokes about my new attempt to be a superhero or the never funny remarks about my new obsession with swimming....even after explaining, even close friends couldn't resist taking a dig not understanding how much of a struggle this was for me...how much pain I still in behind the glasses....it was like being a drowning man clinging desperately to a float in a raging sea while everyone was lounging about on a cruise ship making fun of his float and how he should be a man and swim on his own ....
Zooming forward and cutting out a bit of the middle story....I got into grad school....
And I started well....struggling like crazy with my dry eyes but somehow still topping my classes and making a great impression on my professors and my adviser....
Inside though, I was starting to burn out......5 years of pain were starting to take their toll....
I came probably the closest I've ever come to depression.....I was struggling hard against it....
In my mind thoughts like....It's only going to get harder from here....what's going to happen as you get older and more of your glands die out?....can you really continue to fulfill all the hopes and dreams people have for you?.....How is going to be being alone for the rest of your life? You're already giving all your energy on your dry eyes war, you've got nothing left to give anyone and you know that..... It's not fair....why me?....everyone else I know is fine....Why...why....Lots of self blame too....could I have done anything to prevent this? Did I cause this? Is this my fault?....
Until after one restless sleepless night too many....I punched myself hard (literally) and made my decision...I was not going to have the epithet on my tombstone read...Here lies X...He would have been amazing....if he hadn't had dry eyes....
Those were the words I needed and hold on till today.... yes it's unfair...yes it hurts....yes you want to spend every moment thinking about the pain and if there's anything that can make it better.....are you ready to have that line... "She/He had dry eyes"...be the story of your life?....I wasn't going to let that be my story....
And so I press onwards.....growing ever more determined and ever stronger with every passing day....I will make my life something worth remembering.....I will not let my condition dictate what I can be.....I started fighting the condition with everything I had...hot compresses....periodic gland expression....lid washes (fortunately I'm not sensitive to any of the ingredients in over the counter stuff).....etc....
That was a year ago....I've continued to excel in my program....learning the neuroscience and mathematical techniques I had always dreamed of acquiring....and acquiring them (at least in the eyes of my professors) well....
And recently a possible light in the darkness arrived...
I finally consulted with a dry eye expert who (finally) knows his stuff....aware of all the information and journals I had read on the condition......we're working together now to try to work out possible treatment approaches that could help....
Just yesterday I had the lipiflow procedure done after testing and confirming that 80% of my glands are still viable....possibly due to my active management over the years or that might just be me trying to have some sense of agency over the problem....tentatively things are starting to feel better....wooohoo~ I can hold my eyes open for 10 seconds without pain! It's magic! ...Over the next few weeks I'm hoping to continue see some improvement in my condition (heck it can't get worse).....I'll be wandering across Europe for the next month so it would be doubly awesome to have relief while on holiday....
And even if things don't get better or if this is as good as it's going to get.....I'm ready for that....terrible as it may be, I'm more than just a person with dry eyes...I remembered a time where my eyes did not worry me and I was striving towards so many things....I'm not going to let anything stop my journey... Best of luck to your own journies....I know it's not easy and some of you probably have it worse than me....I can only imagine how difficult things must be...especially for those of you who have ultra-severe dry eye conditions that don't have as many possible treatments as MGD has.... Keep the hope...Keep living...
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