Tag Archives: keratoconus

18 MONTHS AFTER CXL & THE MONKEYS SCRATCHING THEIR HEADS

 

buddha-weekly-0monkey-mind-is-a-term-for-the-anxious-mind-horizontal
Image Source: http://www.buddhaweekly.com

A decade or so before my keratoconus showed up, I recall seeing my former internist back home when I became so horrible ill from what I now know was classical Ehlers-Danlos syndrome.  I had lost 30 lbs and was well below 100 due to throwing up from the pain all day and had this gaunt face with dark under eye circles when my doctor walked into the exam room and said to the half-dead person in front of him, “What happened to you?” in a very concerned tone.  My internist was a smart and good doctor, but he was scratching his head like a monkey over what could possibly have made a fit and healthy young woman turn into a zombie seemingly overnight.  In the end, he ordered blood work and sent me a copy with a referral to a rheumatologist.  My doctor hand wrote the following on my report: You look good on paper.

I happened to have my annual eye exam this week and it’s been about 18 months since I had bilateral collagen cross-linking (CXL) to hopefully halt the progression of my keratoconus (KC), as well.  The majority of the side effects from CXL have not gone away, and I still have the odd, right eye that originally got 6 lines of visual acuity (VA) back and then started to lose vision last October.  I was sure the KC was back and had seen my optometrist to figure out what was going on, but my topographies were unchanged, which left him scratching his head like a monkey and then swearing, which was a first.  That exciting appointment is detailed in this post.

The vision in my right eye has become even more ghosted recently and the prescription in my right scleral lens that I need to wear to drive is not correcting the ghosting anymore, so I figured I’d have my ophthalmologist redo my topographies to hopefully shed some light on the problem. After all, two heads are better than one and both my optometrist and ophthalmologist are well-versed in keratoconus and Ehlers-Danlos.  For those who know my KC ordeal, this is my dry eye specialist who I actually like as I fired the inept corneal specialist 6 months ago. Good riddance.

Once again, I found out that there is no progression of the keratoconus in either eye, although the cone on my left cornea was blasted off during CXL for some odd reason and my scan still shows no keratoconus, although the resulting scar, or corneal opacity, has resulted in keratoconic vision in that eye that can’t be fully corrected.  My doctor checked the opacity for progression and it’s the same, but he said that I had something almost like an iron line in that cornea.  I’m not sure if that is a Fleischer ring as that eye technically doesn’t have KC anymore and he said “line” and not “ring,” but I didn’t think to ask at the time and he sounded a little stumped by it.

Also, the tech had me read the Snellen chart with my lenses in—or with correction—but then forgot to have me reread it with my lenses out.  Therefore, I have no idea what my actual VA really is, but with great difficulty, I could read 20/30 in each eye and a poor 20/25 with both eyes with correction. Mind you, I can barely wear my sclerals due to severely dry eyes, so I live in ghost-y land the rest of the time.  In the right lighting, I’d maybe believe I’m a weird 20/30 with my sclerals, but my near vision is still terrible and if any bright light is around, I tend to get the whiteout effect, holes in my vision, pain, and all sorts of bizarre things.  When I got my final pair of scleral lenses in September from my optometrist, my corrected VA was 20/20 in my right eye and 20/30 in my left due to the opacity, so I have lost a line in the former eye with correction and much more without.

Therein lies the problem.  Per my topographies over the last 18 months, the severity of KC in my right eye dropped from 76% to 32%.  My K-readings, which measure the curvature of the corneas at various spots, have gone down from 51 diopters to 48 diopters at the steepest area, and if you look at my colorful topographies, the pink area (very bad) is now gone and the red area (bad) is extremely small.  It’s improved since this time last year, in fact.  Now, my CXL surgeon told me, “If you get improvement after cross-linking, you’ll continue to improve for the rest of your life.”  Per my scans, it sure seems that is the case and that I’m the poster child of CXL, yet my vision in the keratoconic eye is getting worse—and it’s in terms of ghosting, which should mean an increase, not a decrease, in my irregular astigmatism: the hallmark of keratoconus.

My ophthalmologist was clearly mulling over this and throwing out theories.  He wondered if the Ehlers-Danlos was causing changes to the shape of my eye’s lens, which would definitely create wonky vision, but I don’t think he had a test for that. And so in the end when the exam was complete, I got the monkey scratching his head while telling me, “Your eyes really do look good,” which brought back that old memory of the note from my former internist about looking good on paper.

If it took me a decade to figure out Ehlers-Danlos syndrome was what had turned me into the walking dead, should I pay more attention to this oddity with my eye that looks good—minus the keratoconus, etc., etc.—as well?

At this point, I feel like a monkey scratching my head, too.

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I JUST WANT MY PAGER BACK

Image Source: http://www.mashable.com

While most people get thoroughly excited about new technology and buying the latest and greatest, I’ve had the worst bout of anxiety the last week, including being literally sick to my stomach and then nearly having a nervous breakdown in a store, all due to my 4-year-old non-smartphone conking out.

Well, how could that be?  Everybody just loves new gadgets! After all, who doesn’t want to keep up with the freaking Joneses?  I mean, who would be proud to own an 8-track player?  One of my best memories is listening to Earth, Wind & Fire and Paul McCartney and Wings on 8-tracks in my father’s British racing green Jaguar XK-E roadster in the ’70s, dammit! Let me pose this question: if old things are so bad, why is my father’s former car worth a small fortune now?  Surely, newer cars are better than old Jags with notorious electrical problems.

Yes, I know.  Years and years before I got sick from Ehlers-Danlos syndrome and then developed keratoconus and lost the ability to socialize with others and my career which keeps anyone tech-savvy, I had a love affair with certain aspects of technology, especially my Nextel pager and I still remember the number.  On the rare occasion that I went to a doctor appointment for something treatable like strep throat, my pager would inevitably go off as I’d forget to switch it to vibrate and I’d get an odd look from the doctor, as only doctors and drug dealers had pagers back then. Was I involved in either profession?  Well, that’s classified information at this point.

Nonetheless, I got a cell phone in the late ’90s due to a job as an English-Spanish medical interpreter where it was required, but wouldn’t part with my pager until 2001, the same year I dropped my land line, and what a sad day that was as you rented pagers and had to give them back.  My big career was in program administration in the non-profit sector and despite my education, it didn’t pay a lot so I had a second-hand TV and VCR as I was never one to sit around, but I had a great Sony stereo and had worked an entire summer when I was 16 to put the best sound system in my then car, complete with a first generation Alpine CD player that skipped every 10 seconds and huge, MTX sub-woofers with a ginormous amp, so there. But that was then and this is now.

Now, I can hardly see the so-called basic phone sans data plan that I have, but I got it before my vision started to go in 2011 so I remember how to do things and it has big buttons on the front so I can actually call exciting people like rude receptionists at doctors’ offices and my frustrating insurance companies.  So, I could do all that until my phone’s reception got very bad and then started dropping every call 2 weeks ago and I knew I was in trouble.  Surely I could get a similar model that was sturdy enough for someone who misses the counter a lot, though.

Oh, how wrong I was as I perused the options at Best Buy one night, even though I needed to buy my phone from my carrier’s store which was closed.  I even looked at the 2 phones left with keyboards as I can feel the buttons, but they were so flimsy I knew they’d break within 5 minutes, so I was up a creek and would have to get a stupid smartphone and then the massive anxiety kicked in.

I’ve held and looked at one smartphone in my entire life—an iPhone—and I had no idea how to do anything with it and even worse, I couldn’t see the font on the screen and I was in a waiting room, which meant it was on the rare occasion that I had my iffy sclerals in.  My hairstylist has a tablet and I pay her on that and can see it with my sclerals in, but again, I normally can’t wear them and how do you make a call on a tablet even if I could afford it?  Can you hold that huge thing up to your ear if it even makes calls?  I have joints that subluxate, or partially dislocate, and ache from holding my little phone to my ear, so what was I supposed to do in order to have a screen I could see?

I headed to my carrier’s gadget store the other night and had over an hour wait in a room with jewelry-store lighting that made it very hard for me to even browse while squinting from the brightness that further distorted my vision, but I tried. Trying involved attempting to turn on phones that didn’t seem to have buttons, accidentally making music play really loudly without a clue as to how to turn it off, seeing if I could text the following on a screen: this is really hard, which looked something like: rjod ua twskku jsef.  I had no idea my skeletal fingers were so large and wondered how a linebacker-type texted on these things as I can’t totally blame that on my vision.

Oh, I should mention that I swallowed my pride prior to dealing with the 20-year-old sales guys and stated that I had severe anxiety over this ordeal, was visually impaired, am aware that I drove to the store, and I had no idea how to use a smartphone and was really pissed off that my old LG couldn’t just be repaired.  Actually, I said all that to the security guard who then directed me to the aforementioned sales guys so I could repeat it all.  Remember when you could repair things? Yeah, that concept is stored in a vault with the dinosaurs now and other things we know once existed but disappeared, unless you’re that Duck Dynasty redneck who thinks dinosaurs are the work of the devil—I digress.

So, Junior quickly led me to a huge Samsung that was the size of my face and said that Samsung has done a lot for those who have vision problems and are hearing impaired or something along those lines, but didn’t get into details.  I’m not Helen Keller and I can hear just fine!  I also had a Samsung phone that cracked into some odd, spider web thing, so aside from not being a Samsung fan, I was also able to see on the big sign that the phone, with a 2-year contract, was $399.00—the most expensive in the store in the heart of my ghetto neighborhood.  Wow, that’s like 4 months of groceries I think and I’m well aware of the fact that most people in these parts don’t have my good credit or legal status to even get a contract phone.  Was this some kind of presumptive thinking about a fellow minority simply because I came in speaking English, was traveling solo, and quite frankly was fully clothed: boots, skinny jeans, jacket, big scarf—unlike the half-naked women who roam this area?

It just makes me curious as to why this kid would assume that a visually impaired woman in the ‘hood had good enough credit to get that phone (yes) and had that kind of money to blow on a phone (no) since he didn’t show that Samsung to anyone else in the packed store, many of whom were talking on old phones like my current one and even flip phones from the 2000s.  Well, maybe his biased thinking is why he works there.

After that and my growing irritation after being stereotyped, I was left to my own devices—pun intended—since they clearly knew nothing about adapting phones for the visually impaired, although close to hour 2, with my eyes and body killing me, I was told I could hold the phones sideways to make the keyboard bigger and text that way.  Wow, that info could have really spared me the partial breakdown when I screamed at everyone around me that they should thank their lucky stars that they could see.

So, in the end, the cheaper iPhones had too many app things creating a ghosted mess and were too small for me to see well even with my lenses in.  I think I missed the whole Android section, unless that’s the same as a Droid.  So, I was back to the center-of-attention smartphones where the huge Samsung was that was royally irritating me, but I noticed an LG, my lucky brand, which was under $100 as it’s been out for a mere 5 months per a web search I did later.  So, that’s what I got, but I didn’t get it because the whole city is out of them so it has to be mailed to me and then I have to go back to that ridiculous store and wait 2 hours and be the Anglo who’s not an Anglo due to how I dress via my thrift store wardrobe so that they can do something to set it up and sell me pricey things so I won’t crack the screen like I did with my forehead a month ago.  Oy vey.

As I’m just on hold for the time being, I read some online reviews and figured out how to turn the LG smartphone on and off, so I’ll know how to do that, but how will I make and answer calls, actually send texts, turn the sound off when I sleep and go to my doctor appointments, figure out where the hell the alarm is so I can wake up, and the other very basic things I need a phone for?  My brother told me in an e-mail that I can watch videos on YouTube to figure things out more, so I guess that’s my plan of action for now.  I think I’ve sent him 20, anxiety-laden e-mails about this debacle while he talks about more confusing things like downloading music, but at least he’s trying to help.

If anyone needs to watch videos or listen to music (is that streaming?) or anything else I won’t be doing on my smartphone as I have no clue how to nor do I care, just page me and I’ll hook you up.

“Had a beeper goin’ off like a high school bell.”
Ice-T’s “6 in the Mornin'” (1986)

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A FALSE ALARM, BUT KEEP YOUR SEATBELTS SECURELY FASTENED

Image Source: http://www.thesun.co.uk

I don’t like to fly.  I get extreme anxiety and have had full-blown panic attacks at every elevation imaginable, even after taking a fear of flying course nearly 20 years ago.  So, when I went to see my optometrist a couple of weeks ago to find out why my vision was worse and more ghosted in my right eye, I had that fear-of-flying feeling the whole time: being completely out of control and waiting to crash and burn at any second. After all, if I’m not holding that plane up, then who is?

As usual, an assistant had me read the Snellen chart—a useless tool for assessing the visual acuity (VA) in anyone with keratoconus (KC).  I just wanted to know how much my VA had changed in my right eye.  Well, this woman didn’t want to tell me, but I do know that the VA in my left eye was unchanged because I turned around and read it on the wall when she walked out and saw 20/60 written next to the letters. I couldn’t see that while staring straight at it in the mirror. Again, the Snellen chart is worthless and there is no way I really have 20/60 vision in my formerly better eye pre-op and then formerly worse eye post-op.  I didn’t get near that line with my right eye, so I believe I lost around 4 lines of vision over a month in that eye.  I’m sure that sounds impossible, but I was progressing so quickly pre-op that it really is possible.  I had that awful feeling of sitting in a plane knowing we would be taking off very shortly.

Next, I had to have the dreaded corneal topography done, as that is the gold standard for diagnosing and tracking KC.  I looked into the machine and stared at a tiny hot air balloon that I saw multiples of with each eye while a photo was taken. My fate was sealed, just like when they close the door to the plane.

We headed back to the exam room and I waited for my doctor with my heart pounding.  What did the topography show? Was I progressing 13 months after collagen cross-linking (CXL)? Why doesn’t anyone research people who get keratoconus from Ehlers-Danlos syndrome?

My doctor came in and he knew why I was there as we had spoken on the phone, which is a rarity in the States.  He looked over a few things on the computer and then my topographies came up, but I couldn’t see them in detail.  I think he spent 20 seconds comparing them to my previous ones from this June, but it felt like 20 minutes and I could hear those huge, jet engines starting up: the clear sign of impending doom.

Finally, he spoke and said that there was no difference between my topographies.  I actually cried right there in the exam room out of relief, which is how I feel when a plane firmly touches down on the runway.  I was horribly embarrassed and it only lasted 5 seconds and I wiped my eyes and apologized. But, what was wrong with my eye?

My doctor checked my eyes and looked to see if the slight scar I have in the right eye was worse, but it wasn’t.  Another thing that can initially cause ghosted vision is a cataract, which may be a side-effect of CXL due to the UV light, but my lens was clear.  He thought everything else looked normal in both eyes, aside from the scar partially blocking my vision in my left eye from CXL.

He decided to do a refraction and apparently my prescription has totally changed since I saw him a few months ago, but not for the worse.  I’m still confused on what that means exactly, but that is precisely what he told me and I wish I had gotten copies of my refractions, but you have to pay for records.  I can still drive with my scleral contact lenses, but either due to the sun or the lights at night it’s really hard.  As I rarely wear them due to the pain, I noticed that my vision had gotten worse without my lenses in, which is the bulk of the time.

I told my doctor again my concerns about CXL lasting due to Ehlers-Danlos.  He told me that he had no idea about that or what was wrong and that I had surgery that totally effed up my eyes—that would be both eyes due to the prescription change and yes, I cleaned up his language.  What did he mean by “effed up my eyes?”  I believe he was referring to the fact that my corneas are changed at the molecular level, not truly effed up, but maybe a casual relationship with a doctor isn’t as great as I thought.  He said that maybe my left eye had gotten better, but I’d been doing the cover-one-eye-and-then-the-other test for weeks and just looked at him like he was yet another inept doctor in this city.  The free fall was starting.

I can’t even read on my hugely blown-up laptop with my right eye, so that is the one that is worse.  That was my better eye 6 weeks ago and I was also right eye dominant due to that, so my visual acuity was based on that eye which used to read the 20/40 line with great difficulty, but previously read 20/100 pre-CXL.  I am now left eye dominant as my brain is trying to compensate for the vision loss in my right eye.  Do I need to have fancy initials after my name to figure that out?

Again, the Snellen-based VA means nothing with KC as you can get a driver’s license with 20/40 vision and I flunked the test almost 2 years ago when the KC was starting in my left eye and I could read 20/30 from that eye without correction. I got a license as I could get enough correction with glasses in my better eye to read it back then, but I have a huge restriction stating that I am blind in my right eye, which was at 20/60 at that time: my current VA.  Legally blind is defined as 20/200 in the States; I rest my case on the idiotic Snellen chart.

So, my optometrist doesn’t know what is wrong or if the CXL will continue to halt the progression of keratoconus.  Oh, he called it keratoconus three times so I’m going back to that. A Google search for “secondary corneal ectasia from Ehlers-Danlos syndrome” yields zero results, unless my posts come up, so keratoconus it is.  Many disorders are associated with KC and until the medical world catches up and comes up with new names, I’m staying in the KC club. My topographies give a diagnosis of keratoconus and the big specialist who did my CXL had no clue I had Ehlers-Danlos syndrome, although I did mention the fact that I thought I might have it and he told me to see a geneticist.  If the only real difference is the typical age of onset and the lack of disease burn-out, I’m sticking with keratoconus and not changing my tag line.

What is wrong with my eyes again?  My vision is a bit better today so I wrote this post.  Who effing knows?  The plane crashed and there are no survivors.  I’ll post an update when they recover the black boxes.

Where all the answers are.

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IMPENDING DOOM: MY VISION IS WORSE & ALL ABOUT MY PSEUDO-KERATOCONUS

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Photo Source: 40ans.ehess.fr

I was in deep thought about my collagen cross-linking (CXL) surgery awhile ago.  I’ve read every journal article online about epi-off CXL, poured over the interviews with the top surgeons and their speculations on whether CXL will last in the long-term for keratoconus (KC), and thought about everything my top-notch surgeon told me at my pre-op appointment about the efficacy of CXL.

Since epi-off CXL was first performed in Dresden, Germany in 1998, the studies have shown there is no progression of KC and in the small percentage of people who don’t benefit from CXL from the get-go, it is effective when the surgery is repeated. This abstract from 2006, while not long-term, demonstrates the halt in progression.  So, why was I worried?

Well, it wasn’t until I found my great optometrist this summer that I learned that although I look like I have KC per my scans and tests, my vision is that of someone with keratoconus, and despite all of the medical literature stating that keratoconus, a primary corneal ectasia, or thinning, can be caused by Ehlers-Danlos syndrome (EDS)—I really have secondary corneal ectasia caused by EDS.  Should I change the tagline on my blog? As my optometrist stated, “It’s the same thing more or less.”

Per the “more or less,” here are the differences:

The true cause of KC is not known but there is a connection, at least in part, to faulty collagen in the cornea, but KCers don’t have a systemic disease that causes faulty collagen throughout the body like EDS does.  A dry abstract discussing collagen fibrils in KC.

KC tends to show up in one’s teens or early 20s and runs a course of progression before burning out—usually within 20 years.  With my secondary corneal ectasia, which apparently has never been researched, there is obviously no burn-out cycle as my body will continue to produce faulty collagen V for the rest of my life due to EDS type II.  Therein lies the big problem, or so I think.

With CXL, the weak collagen fibrils in the cornea are tightened up by creating cross-links, much like adding rungs to a ladder. That sounds like a win-win for true KCers and for me.  By creating all the cross-links, the cornea is stiffened and aged in essence (see abstract), which burns out the KC as cross-linking and stiffening are naturally occurring processes in normal, aged corneas.  That’s good for KCers and in my mind, has no affect on my ectasia with no burn-out cycle and continued production of faulty collagen.

So, why all the worry again?  I began to think about cell turnover.  Most of the cells in our body turnover in time. What would happen to those nice, cross-linked collagen fibrils when the cells in my cornea, or within the stroma more precisely, turned over?  With true KCers, I don’t think it matters as the disease has burned out, but for me, I believe that all the good collagen fibrils will be replaced by the old and it will only be a matter of time before the pseudo-keratoconus—what I’m calling this disease—shows up again.

Then, what are the options?  I see none.  When KC is severe enough, corneal transplants are the only option, but they reject sooner or later and the healing process is very long.  I also have abnormal connective tissue due to EDS, which would make finding a match rather difficult, but that’s an assumption. Lastly, transplanted corneas in KCers who are still progressing can occasionally develop keratoconus again since the disease process is still active.  I believe that would be a huge cause for concern in my case due to my faulty collagen production, not to mention my healing and scarring issues from EDS which would make transplants so problematic.  A single case report highlighting the recurrence of keratoconus post-transplant.

Now, I was just thinking about all of this and then I noticed my vision got worse all of a sudden, rather like when I first noticed the psuedo-keratoconus.  I thought it was from the sclerals I have to wear a few times a week to drive and that it would go away in a couple of days, per usual.  That was about a month ago, so it’s not from wearing the sclerals.  I don’t have any symptoms aside from more ghosting in my right eye, which was my better eye post-CXL.  Now, my left eye with the scar is the better eye and my brain has made that the dominant eye. As the vision in my right eye is worse than the left, it means I’ve lost more than 2 lines of vision in a month or so, which is how this whole debacle started by losing a line every 4-6 weeks on the Snellen chart.

I did have a lot of testing at my 1-year follow-up in late September for the FDA clinical trial, but due to my corneal specialist being the worst ophthalmologist known to humankind, he came into the room for 30 seconds and didn’t say a thing.  The reports, which are required by the FDA, never seem to make it to my surgeon in L.A., so who knows if anyone even reviewed them.  No one told me anything was awry and I had no reason to suspect anything at the time.  I do remember that my VA was the same, not that they’re very accurate at that practice or that it truly represents keratoconic vision.

I spoke with my optometrist about my eye and my concerns and have an appointment next week for an eye exam and corneal topography to see if there is progression.  The CXL did work as I got 6 lines of vision back, which is very rare as most get 1 to 2 lines back or none at all.  I do know that the cell turnover of the collagen in the stroma is several years and I’m shy of that at about 1 year post-op, but I have no idea what else it could be unless the very mild scar I have in my right eye that’s been stable for 8 months suddenly went wild, in which case I still won’t get my former vision back, and that’s all I want right now, even though most people would be crying in the corner if they had to see the world through my eyes.

I wish I could just get a break and I had to pay so much money for CXL that I didn’t have—I’m sure more than most Americans have in their savings account.  When I had the talk with my optometrist about my concerns with CXL, EDS, and the pseudo-keratoconus, he agreed and said, “It’s a whole other monster.”  Why didn’t he say that the first time? Maybe they could state that in the medical literature: that a condition that looks, but doesn’t exactly act, like keratoconus can be caused by EDS and it’s a whole other monster, rather than stating that keratoconus can be caused by EDS, period.  Perhaps the inept corneal specialist who has M.D. after his name could have told me that after I was diagnosed with Ehlers-Danlos syndrome.

I also found out from my optometrist that if I had had an EDS diagnosis in September of 2012 when I had CXL, instead of in November, that I would have been excluded from the clinical trials.  That’s doing wonders to quell my nerves while I sit and twiddle my thumbs and ponder writing a letter to the German ophthalmologist who developed CXL to get his take on its efficacy on my pseudo-keratoconus.

Theo Seiler, M.D., Ph.D., the creator of CXL who also looks exactly like my late grandfather.  Hmmm…

Photo Source: http://www.meaco.org
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WORLD SIGHT DAY 2013

Image Source: http://www.iapb.org

In honor of World Sight Day, which is October 10th this year, and Blindness Awareness Month, I’m asking that if you are able to, please have your vision and eye health checked by a qualified ophthalmologist or optometrist.

Per the American Optometric Association:

Periodic eye and vision examinations are an important part of preventive health care. Many eye and vision problems have no obvious signs or symptoms. As a result, individuals are often unaware that problems exist. Early diagnosis and treatment of eye and vision problems are important for maintaining good vision and eye health, and when possible, preventing vision loss.

http://www.aoa.org/patients-and-public/caring-for-your-vision/comprehensive-eye-and-vision-examination

Blindness and visual impairment are not rare conditions. According to Lighthouse International:

Over 285 million people in the world are visually impaired, of whom 39 million are blind and 246 million have moderate to severe visual impairment (WHO, 2011). It is predicted that without extra interventions, these numbers will rise to 75 million blind and 200 million visually impaired by the year 2020 (WHO, 2010).

  • About 80% of blindness is avoidable (preventable or curable), and 90% of the world’s blind live in a developing country (WHO, 2010).

  • Globally, about 85% of all visual impairment and 75% of blindness could be prevented or cured worldwide (WHO, 2010).

  • 80% of global blindness is a result of five preventable or treatable conditions (cataract, refractive error, Trachoma, onchocerciasis and vitamin A deficiency) (Vision 2020, n.d.).

http://www.lighthouse.org/research/statistics-on-vision-impairment/prevalence-of-vision-impairment/

In the United States, the leading causes of blindness are: age-related macular degeneration (AMD), cataracts, diabetic retinopathy, and glaucoma.  Prevention and/or treatment may be possible with these conditions. For additional information and images of how people with these conditions see, click here.

In light of Halloween occurring this month, please do not buy novelty contact lenses.  All contact lenses that are purchased without a prescription from a doctor can be very dangerous and even lead to blindness.  If you think you could never have permanent vision issues from novelty contacts, think again. Here is all you need to know from the FDA.

If you are interested in helping prevent blindness and visual impairment when possible, Charity Navigator has given 4-star ratings, which is the highest, to the following charities which work in the developing world.  There are many charities of this nature, but I would suggest you make sure they are reputable. Click on any of these links to visit their website:

Christian Blind Mission International

Helen Keller International

Himalayan Cataract Project

International Eye Foundation

ORBIS International

As I lost significant vision to keratoconus—a non-preventable corneal disease—I will also mention the National Keratoconus Foundation, which has been a great source of information for me.

If you have prescription glasses or frames, reading glasses, or even sunglasses that you no longer wear, they can be donated to those in need.  Children’s glasses are especially in demand. The Lions Club is a great organization around the world that has drop off boxes in various locations, or you may mail them your glasses in the US.  More information is on their website.

Most major cities have some type of local organization or center for the blind and visually impaired.  Volunteers are always needed and an online search can help you find one in your area.  Volunteering is a great way to help people by simply giving your time.

If you can donate even a dollar, or equivalent, to help save someone’s vision from a preventable disease, provide glasses to someone who can’t afford them, or volunteer your time, please do so.

Never put off until tomorrow what you can do today when it comes to the health of your eyes and never take your vision for granted.  If I live in the United States, had yearly eye exams, and started to lose my vision in my mid 30s, then anyone can.

Thank you!

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SCLERAL CONTACT LENSES: THE FINAL CHAPTER

 

12859-full_scleral_vs_small_corneal_lens-e1356536480420I
mage Source: http://www.wilcoxeye.com

Oh, the irony of it all: a contact lens intolerant person who can only see by way of scleral contact lenses.  Well, we tried.

Last week, I returned to my optometrist/lens fitter after trying out my second pair of sclerals.  Vision-wise, the first pair seemed pretty good for someone who really can’t see well, but a couple things were off: I still couldn’t see close-up at all, the TV created some weird, double vision—compared to my normal, ghosted vision—and night driving was still a ghosted mess when I looked at anything illuminated.  I should add that sclerals do help with my light sensitivity, but I still can’t drive into the sun, which is rather hard to avoid unless you can consistently drive north and south and never turn.

Due to the aforementioned issues, my optometrist changed my prescription as he felt my first pair was too strong, and hoped that would help with the near vision and the TV issue. Well, something was very odd about that second pair and I’m blaming the lab, as my doctor is really good.  They seemed okay in the office, but I went to a big box store afterwards—the best place to test out your vision—and I was back in the graveyard, also known as the ghosted mess.  I couldn’t see people’s faces again and everything in the store was in multiples, and not because it was a promotion.

Then, I got very worried as I had doctor appointments I had to drive to the next week and couldn’t see, even though I drove with no contacts for 8 odd months; well, it’s not like I had a choice.  Back to the optometrist I went the following week and he was utterly confused.  We tried all the lenses in front of my eyes with the new sclerals in and nothing was making sense, hence my belief that the lab screwed up.  My doctor gave me my old pair back and told me to really compare them—and to not get them mixed up—and report back.  Well, I already knew that pair 2 was awful, but I was happy to get the old ones back.

Of course, I decided to play doctor in my room here at the motel.  Why not mix the pairs up, try different contacts in different eyes, and so forth?  Well, that’s just what I did, but I had to have charts to make sure I didn’t forget which lens was from which pair.  I also made notes, complete with diagrams of eyeballs as to not confuse things, to figure out the difference between each lens.

I realized a couple things: the left lens of pair 2 was total garbage.  While that is my worse eye due to another corneal opacity that my dumb, corneal specialist failed to diagnose and treat, I had horrible ghosting with that lens in, but not the left lens from pair 1.  So, I crossed that one off the list and put the left lens from pair 1 in.  Oh, I did try that lens in my right eye, but had no idea the sphere was different so don’t try that one at home.

Now, I had to figure out what to do about the right eye.  That lens from pair 2 seemed too strong, when it was actually weaker, and gave me headaches.  Nonetheless, I stuck that in my right eye, and mind you, these are plastic bowls filled with various solutions that are extremely difficult to insert as you have to be parallel with the floor, so I think I was at hour 3 at this point.  Well, lo and behold, the right lens from pair 2 didn’t give me an instant headache with the left lens from pair 1 in. As this is very confusing—you should have heard the conversation with my doctor—I’ll simple state that my right eye had the new prescription and my left eye had the old prescription.  Would I see better, worse, or the same?

I looked at the computer and the font was so crisp and black, but I still needed it blown-up, probably due to my convergence insufficiency.  The TV seemed crystal clear and the room looked okay with no ghosting.  Then, I went to the window and I could see very far and was able to read the signs across the street with ease, see clear images of the parked cars, and the leaves on a big tree were in detail.  I just had to wait to test out the mixed-pair of sclerals in a big box store and drive at night to be sure.

I did have to do errands within the next few days but got a ride due to the sun.  I noticed that in the big store, things were at about 90%, when they were at 100% before distance-wise.  I could see faces in detail, but not as well and not from a very far distance, and if I looked towards the end of an aisle, things were blurry and mildly ghosted.  It wasn’t bad, but the first pair was better for distance hands down. Everything else seemed fine and I didn’t see multiples of things on shelves.  I also could read the print on various items as long as it wasn’t too small.

Soon enough it got dark, and even though I wasn’t driving, my vision conked out again.  The illuminated street signs were very ghosted, as was anything else that was lit up.  I saw halos and had glare from the street lights and headlights of oncoming cars, but I figured this was due to my corneal opacities that cause images to further scatter.

I decided that mildly worse far vision in exchange for better near vision and normal, TV vision was a fair trade.  That would be the end of this story, except for that part about being contact lens intolerant.  I have severely dry eyes due to numerous conditions and someone like me can’t wear contact lenses for more than 10 minutes, or really at all.  The dryness is so painful that it can only be understood by sticking your eyes in front of a hairdryer non-stop.  I’ve tried every artificial tear, and due to the contacts, they can’t be too viscous or they muck up the lenses.  When I don’t wear the sclerals, I have lubricating ointment made of petroleum jelly and mineral oil in my eyes 24/7—what to do?

After seeing my doctor last week who agreed this was the best pair—fancy that—and that he couldn’t make my vision any better, as well as pointing out that irritating irony that I can only see with my sclerals, but am contact lens intolerant, he said he would research anything I could possibly use so that I can wear my sclerals every day and without issues.  I really do appreciate a doctor in this city who will research anything, but I’m not holding out hope.

So, presuming my optometrist won’t be able to find the miracle cure as no one else has, I’m still left in the keratoconus ghost yard, aside from the 2 days or so that I’m forced to leave and wear my sclerals while pouring vials of artificial tears into my eyes every 10 minutes and swearing I’m going to rip my eyeballs out.

And to think I had a chance of seeing again…

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GETTING AN ACT IN THE FREAK SHOW

Image Source: http://www.medical-dictionary.thefreedictionary.com

Why does Ehlers-Danlos syndrome (EDS) have to be a freak show disease?  My skin doesn’t stretch enough to be the India Rubber Woman and I’m not hypermobile enough to be the Human Pretzel, but I look like a hybrid of marbled, blue cheese and the Purple People Eater from the venous pattern and purpura and petechiae covering my body from nearly head to toe.  The icing on the cake is the beyond frustrating keratoconus, which turned my corneas into little cones. Alas, the latest problems that have been discovered could surely guarantee me an act in the freak show.

Possible employment? http://www.plasticjoe.com

 

I’ve been working with my great, new optometrist over the past couple of months to try and get scleral contact lenses, which can correct keratoconic vision to a point by creating artificial corneas in essence.  As I’m post-CXL surgery, the progression of my keratoconus (KC) has been halted and my vision is stable, not that it means I can see well.  The trial pair of scleral lenses had about 3 pluses and a lot of minuses, which I typed up in a list with bullet points for my doctor.  He thought that was very amusing, but in a good way, and it actually helped to narrow down why I was having so many issues with the sclerals, aside from my dry eyes which will prevent me from wearing them daily it seems.

My doctor got down to business getting the prescription just right as it was a hair off and he can get my far vision a little clearer, although that is where things are very good for me with sclerals.  I mentioned in my bullet points that I still can’t see well close-up and that while the T.V. image is crisp, it often has a double image, as do all the illuminated signs at night which makes it hard to drive still and is different from the multiple, faded images I see with keratoconus.  My doctor thought that the better prescription would help, as sclerals work on both nearsightedness and farsightedness.  I wasn’t that positive, though.

I had also mentioned in my list that the intermittent strabismus, or intermittent exotropia to be exact, that I developed when my brain shut off vision to my worse eye pre-CXL wasn’t gone as I suspected.  It reared its ugly head again when I started inserting the new sclerals.  As the contacts are akin to plastic bowls filled with saline solution, I have to use a rubber holder of sorts to put them into my eyes while looking into a mirror laid flat on the vanity with my head parallel to the floor.  It’s really not that easy as the lenses are so huge and I have to hold my eyelids open very wide.

The right contact goes in well, but when I go to put in the left one, I can literally see my right eye turning out—see Figure B in the 1st image—and then my left eye that I’m trying to work with does the same!  In other words, both of my eyes are turned out and it’s a little freaky to say the least.  Now, I’m not making fun of anyone but myself here—I dated someone in high school who had exotropia and it wasn’t the intermittent kind.  Regardless, a scleral lens has to fit over the cornea, so if my left eye has wandered to the far left, out falls the lens and saline solution and then I have to repeat the process 10 more times.  Suffice to say, I’ve been a little late to appointments the last month.

My setup for scleral contacts lenses

 

It’s a very good thing I made a bullet point about that strabismus issue because my doctor did a couple of tests. He had me focus on a letter on the wall and then flipped something over my eyes in a rapid motion, so that every second I was using either the right or left eye to read.

“You do have strabisumus!” he told me, as he’s always amazed to have a patient who speaks doctor talk. Apparently, the test made my eye turn out as I started to lose vision in my right eye and couldn’t see the letter, only a blank blur.  Yet, I can somehow make both eyes turn out when putting in the sclerals for some odd reason.  That sounds like a freak show act if I ever heard one.

“Great,” I said, as I thought this was just some transient thing from having low vision for 2 years and thus some atrophying of my extraocular muscles, which control the movement and alignment of the eyes.

“Am I going to need surgery?” I asked my doctor. “You know about my scarring issues with EDS.”

He told me, “Not now at least.”

Extraocular muscles–what are lax from EDS and where I may need surgery. http://www.medicalgeek.com

 

Then, he was on a mission and started rifling through my purse, which is fine as we spend most of the time joking like we’re old friends.  I asked him what he was doing and he told me that he was looking for my phone.  I grabbed my cell and he told me to type a text.  So, I started to and he noticed how close I hold the phone to my face and he pulled my arms down.  Well, that’s not fair.  I knew he was trying to figure out my difficulty with seeing close-up and I mentioned that the screens on cell phones and my blown-up laptop aren’t horrible with my slcerals in, but print text was awful.  That was in a bullet point, but I’ll cut him some slack since he’s my favorite doctor and knows all about EDS.

He gave me the paper I had typed up in 12 font at 200% in Word to read, which now looked very small and wonky.  With the sclerals, the letters tend to move around a bit and make me feel sick; that’s the best way I can describe it, unless it’s very small text and then my head starts to hurt.  He kept putting different lenses in front of my eyes and asking if it was better, but I kept saying that I didn’t notice a difference. I figured this was the best I would ever be able to see if none of the lenses over my sclerals helped.  However, I must admit I like the rows of little lenses lined up in long drawers—it’s all so old-world and I got to wear the opera glasses again for a minute.  You sure wouldn’t get any of this from the optometrist in the mall.

 

Then, my doctor had me look up and read the paper with the bullet points directly in front of me.  He must have been watching my eyes because he had a rather deflated look on his face when he stopped me.

“You have convergence insufficiency,” he said in a rather sad voice.

“Noooo!” I whined. “No more diagnoses.  What is that?”

He grabbed something and told me to watch his eyes while he brought it closer to his face.

“Do you see my eyes moving?” he asked me.

“Oh,” I replied. “Your eyes are moving inwards as it gets closer to your face.”

“Right,” he told me, “But your eyes don’t do that and they aren’t in perfect alignment in general, either—they both turn out a bit and all of that is causing double vision.”

“So, I have more vision problems than just the keratoconus?” I asked.

“Yes,” replied my doctor, “But convergence insufficiency is not that rare.”

More information on convergence insufficiency can be found here.

Per my eyes not being in perfect alignment, he tried to reassure me that it wasn’t noticeable, but I swear that one eye looked a little off when the KC first started.  I demanded to know if I looked like Jaws from James Bond, and my doctor couldn’t believe that he was the image I associated strabismus with.  Jaws actually had acromegaly and I don’t think he had strabismus.  I should have said Marty Feldman, who was only in my favorite movie ever growing up and does the Abby Normal line I use all the time.  Here’s the video clip. He had strabismus from Graves’ disease, but I see a resemblance, and it’s not just the eyes.  He may have been a second cousin. How long until the freak show comes to town?

Igor in Young Frankenstein–my new, male twin. http://www.screenjunkies.com

 

My doctor put lenses with prism in front of my eyes and I could see the text, but my head started to hurt.  Prism bends light so that people with convergence insufficiency can see close-up and I could get readers made with them, but my doctor said they can be hard to get used to.  Contacts and glasses are just too much right now.

I remembered that when I had the intermittent strabismus pre-CXL, I did some eye exercises I found online as I was so worried my wandering eye would prevent me from getting the surgery.  I asked if that might help to tighten up my muscles, just like I do in physical therapy for my loose joints.  My doctor handed me a plastic, Popsicle stick with a tiny E on it. He told me to focus on the E and pull it towards my face and then away, which I was able to do.  I will now be doing this for 5 minutes every day, as it sometimes can help, but now I can’t remember with which issue, so hopefully it’s both.

My doctor also confirmed this could all be secondary to Ehlers-Danlos, but that maybe I had had it since childhood like most people.  I never had problems with my near vision or any strabismus before keratoconus showed up, which is around the time my EDS started to affect more of my body, so I’m betting on EDS being behind all of this, or that and and KC combined.

I left with more health matters on my mind and then got a call from the assistant of yet another specialist I need to see as I was sitting in the parking lot of CVS.  How many body parts can fall apart from faulty collagen?  I went in to get my pricey prescription and got $5.00 in Extra Bucks—free money to spend at CVS for those not familiar with the chain pharmacy. I almost make money from all my prescriptions.

Then, I remembered I needed a Popsicle stick, but couldn’t find any, until I found the little freezer that had real, lime Popsicles, one of the last fruits I can still eat.  Eating the lime Popsicle that I got for free in the desert heat made the bad news a little sweeter, especially if an employment opportunity where I can just stand while people gawk at me may be in my future.

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I SAW AGAIN, IF ONLY FOR AN ARIA

Photo Source: http://www.timeout.com

I saw the world with near perfect vision this week.  It was so surreal that my logical brain is still processing it: low vision to seemingly crystal-clear vision and back again.  I think I fell down the rabbit hole like Alice, or more accurately, I finally climbed back out.

It wasn’t really a Lewis Carroll tale.  I finally saw an optometrist who works with scleral contact lenses this week. These medically necessary contact lenses, which can work for those who are contact lens intolerant like I am, are my only hope to ever truly see again.  Scleral lenses can correct keratoconic vision and actually help severely dry eyes like mine, as the lenses are filled with saline solution which keeps the cornea and most of the sclera nice and moist.

Scleral lenses, like other specialty lenses, need to be a perfect fit.  The optometrist, who was very knowledgeable with a great personality to boot, had to determine the correct diameter lens for my eyes and then try various lenses out for fit.  The lenses seem very difficult to get in due to the fact that the saline solution can’t spill out, so he had to put them in with my face parallel to the floor, which is what I will do on my own in due time.  If I blinked while he held my eyelids wide open to get the huge lenses in, an air bubble formed and then the process needed to be repeated.  The lenses were inserted and removed with a little suction cup on a stick.

After much trial and error, I had two scleral lenses in my eyes and they gave me a smooth corneal surface, instead of a keratoconic one.  However, the doctor pointed out after looking at my corneal topographies, which at least haven’t changed in 2 months, that the center of my left cornea is now completely flat, which is not normal at all after cross-linking (CXL) and finally explains why my refractions for the FDA clinical trial show farsightedness in that eye now, not that I can see far or near for that matter.  I get a + rather than a – reading, to put it in layman’s terms.  No wonder the scan says the severity of keratoconus is 0%—the steep, cone-shaped cornea I had got bulldozed by CXL for some reason.  Well, so much for a safe surgery with hardly any complications.

The scleral lenses need a prescription in them like regular contacts, which I’m sure my good doctor was dreading by then, but regardless, I needed the scleral lenses in my eyes to get an accurate refraction.  I looked through the refractor and the doctor began flipping lenses over my right eye. Which lens was better?  I should get a lollipop after refractions at this point.  The odd thing was that I could see a difference in the lenses nearly every time for once. Suddenly, I had dark-black, crisp lines of letters in front of me.  The ghosting—or multiple images—was gone!  I read 20/20 with ease and I knew it was really 20/20.

He repeated the test with my left eye with good results, but not superb.  There was still some faint ghosting and the letters weren’t as crisp, but I read 20/30 and with ease again. I quickly rambled off the letters instead of taking 5 minutes and guessing like I normally do.  There’s a reason why the left eye—my better eye before CXL—can’t read 20/20 even with scleral lenses.  That eye has developed central corneal opacity, a type of scar, that’s in front of my pupil and is affecting my vision. The optometrist discovered it in a simple exam of my corneas, and I thought he was confusing it with the right eye, which developed opacity months ago that’s not affecting my vision. He wasn’t.  I have a serious scar in my left eye now.

This was just maddening because my idiotic corneal specialist wanted me to return to L.A. to see my CXL surgeon due to the mild opacity—more like a slight haze—in my right eye and has been monitoring this rare side-effect of CXL for months.  I literally saw him 2 weeks ago and he never noticed the scar in my left eye that has stolen more of my vision? The optometrist, who should be the M.D., luckily has a better corneal specialist for me to see who I’ve never heard of, so possibly he’s new to the area.  I wish I had been told that my vision wasn’t fluctuating at all per my scans, rather than the opposite, so I could have seen the optometrist sooner, who would have gotten me to the new corneal specialist in time to possibly treat the scar.  I trust this new doctor, and that’s a rare thing.

So, now my doctor had my prescription, which must be the strangest in the world.  He put it into what looked like opera glasses—ah, the post is making sense now.  He handed them to me and told me to look through them.  I noticed they were heavy as I held them with two hands and placed them in front of my eyes.  I could see!  I saw my doctor and there was so much detail in his face that I hadn’t seen before.  Even the color of his skin had more tones and shades.  I looked around the room as if I hadn’t been sitting in there for more than an hour.  He told me to walk around with them, so I eagerly did.

I think I was falling down the rabbit hole again.  I became extremely dizzy and felt like I had heavy moon boots on.  I noticed I was walking at some strange angle—almost on a backwards incline, yet I felt I was falling backwards so why couldn’t I lean forward?  I tried to keep walking, although I looked like a cat in kitten mittens.  I saw the waiting area that was down the hall and it seemed so close.  How could I see it? I walked towards it with my opera glasses and kitten mittens walk.  I turned the corner and saw all the glasses in display cases for sale.  I think I could have read the price tags if I cared to, but why bother when glasses don’t correct my vision.  How surreal it all was.  The dizziness was getting to me so I headed back to the room with my weird walk.

I told the doctor how I could see everything, but I felt so dizzy and couldn’t walk—as if my depth perception were off. Perhaps the prescription was too strong, although I wasn’t getting a headache and my eyes didn’t feel like they were crossing, which I’ve experienced with poorly prescribed glasses for mild myopia in years past.  He said that the opera glasses are very thick and aren’t exactly the same as the thin scleral lenses that will be right on my eyeballs.  He also reminded me that I will need to adjust to seeing again.  What an odd concept!  Then, I handed him the opera glasses and re-entered Low Vision Land.

I could see less than 2 years ago.  They say that you don’t know what you have until it’s gone, but one could also say that you don’t know what you lost until you get it back. During the aria, while I ungracefully walked around the optometry clinic with my opera glasses on, I was in la-la land—maybe I was seeing Madame Butterfly in there like I did years ago at the now demolished Seattle Opera House.  I forgot that I once saw the world this way, sans opera glasses.  In such a relatively short time, I’ve become resentfully accustomed to this horrible vision.  When it was briefly gone and then came back, I realized how abysmal my vision really is.  I truly felt blind.

That made me think this week, as I replayed my aria of sight in my mind while waiting for the scleral lenses to be made in Texas.  I should have them within a month and then I’ll know if they will truly work for me.  I’m used to my low vision again and only have snapshots in my head of that near perfect vision I experienced.  What if science invented something that could take away the unbearable, chronic pain that I’ve lived with for 12 years from Ehlers-Danlos?  What would that aria be like when my collagen acted properly and all the connective tissue in my body came back together and healed itself?  Would I just sit for hours since I can’t sit long due to the pain?  Would I feast on the hundreds of foods that my GI tract can no longer digest?  Would I regain 20 IQ points from not having a brain on pain?  Would I catch the next flight out of this horrid city and be an expat again—my ultimate dream?

I would forget what the pain is like during the aria, just like I did with my low vision.  Then, when the doctors took away whatever medical miracle made the pain go away and it all came rushing back into my body in a nanosecond, much like removing the opera glasses, I would scream the most bloodcurdling scream imaginable and it would be heard all the way in Japan—just as Madame Butterfly commits suicide with her father’s hara-kiri knife.

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COCONUT-LACED MEMORIES & HOW PHYSICS IS RUINING MY LIFE

shutterstock_121977952

Photo Source: http://www.tiana-coconut.com/

“What is your depression like?  We’ve never discussed that,” asks my newer counselor at the not-free free clinic. They are post-graduate level interns, which hasn’t done wonders for me in the 2 years I’ve gone there.  At least they know that depression accompanies chronic illness like a fever accompanies the flu.

“It’s like a dark cloud over my head and everything goes black—the light at the end of the tunnel went out years ago,” I reply. “Then,” I say, “I go to the past—before I got sick—when my life was good.”

I get a stare.

“What about the future?” my counselor asks.

“I never go to the future anymore—it’s too scary.  The future means more illness, more pain, more medical bills, maybe living in my car next month,” I answer matter-of-factly.

My counselor says, “Most people are stuck in the past and the future.”

“Not me,” I reply back. “I just go to the past and I’m stuck with the present, but I never go to the future.”

“The past is just an illusion—it doesn’t exist,” states my counselor.  It feels like I have been socked in the face.

“WHAT?” I reply, and give a thousand examples proving otherwise.  My counselor’s explanations make no sense while my brain goes through those thousand memories like still photographs in my mind.

I’m supposed to appreciate small things in the present.  I already gave the example of my cat weeks ago.  My eyes wander in the small room and then to the bushy, palm tree blowing against the window that I can see fairly well.

“I like that palm tree,” I tell my counselor. “Those trees have the fronds that look like a fan.  You need the fan-shaped fronds to build a palapa—those thatch roofs made of palm fronds in México.  I had one built and they had to go high up in the jungle to get to those trees.”

“You found something simple that gives you joy,” responds my counselor.

“It makes me happy because it takes me back to a better place—a time in my past,” I reply back.

I leave the appointment with my head swirling.  Did I have anything left?  Where was my past if it was just an illusion?

I came back to the motel and Google spied on an ex from over 15 years ago who I’d been trying to find forever—and finally did.  A little trip down memory lane.  Then, I was even more depressed that the only Jewish guy I ever dated—even if he was so neurotic that I dumped him—hadn’t turned back into the Super Size American he was before I met him at 22 and that he was married and actually had his good hair still. His face had aged and I really didn’t recognize him very well, although I have a photo of him somewhere from the brief time we dated so long ago.  Was the past an illusion, after all?  He wasn’t the same.  How different do I look?  At least his wife was a hot mess—he used to tell me I looked like a supermodel, minus the height thing.  Then, I had my usual meltdown.  So much for memory lane.

So, today I Googled this concept that makes no sense in my mind: the past is just an illusion.  An illusion is a rabbit in a magician’s hat.  I figured this is what I get for going to the not-free free clinic.  It’s actually physics it appears.  I underestimated my counselor.  Albert Einstein first described it in his theory of relativity.  Stephen Hawking and all the big physicists follow the theory that all time is an illusion: the past, the present, and the future.  Einstein said, “The distinction between the past, present, and future is only a stubbornly persistent illusion.”  For those science-types who would like to learn more, you can read this boring article.

I don’t have any interest in the theory of relativity.  It’s not going to give me my life back, which is all I really care about anymore, aside from my 3-legged cat.  I hate physics and I never even studied it.  Physics is that weird uncertainty principle on that huge blackboard in A Serious Man that Larry, the physics professor, dreams about—as seen in this clip. Throughout the movie, he always asks, “Why?” and never gets an answer.  It’s a Jewish thing—this need to know why all the time.  Maybe I would have done well in physics.  I was only one of two students in my class to pass logic in college and with a 4.0.  My friends watched as I wrote 20-something page solutions and were convinced I could crack codes for the government.

Maybe physics is logical, but it seems abstract—like why I can’t see anything due to keratoconus despite my good visual acuity per the eye chart.

“High order aberrations,” said my dry eye doctor when I decided to ask him 2 weeks ago due to my inept corneal specialist. “It’s physics.  Let me give you an example.”

He mentioned waves and I was already lost.  I even took oceanography.  He drew side views of misshapen corneas like mine, which I’ve seen and I understand.  I’m a visual learner. Aberrations are refractive problems, which leads to less-than-perfect vision.  In my case, light isn’t refracted correctly due to my Rocky Mountain-shaped corneas, or one of them after cross-linking.  This creates a high order aberration, or more specifically, a vertical coma.  Due to keratoconus, I also have nearsightedness and farsightedness, which are low order aberrations.  It’s all just physics.

“Why can I read 20/40 then?” I implored.  Actually, I read 20/70 that day, but the DMV doesn’t need to know that, or that I drive in two lanes.

“Well,” said the good doctor, “The exam is under optimal conditions—it doesn’t represent how you see in real life.”

Finally, an answer to my why.  My distorted vision isn’t an illusion—or is it?  My brain remembers that there is only one moon, not the several moons that I now see in the night sky. Maybe my entire life has become an illusion.

This is what I know.  I am who I am because of my past.  The good memories gave me life and the bad memories made me a survivor in every sense of the word.  Some events from years ago are so clear they play like a video in my mind. Certain smells can transport me in time or bring people back from the dead.  The simplest things can trigger a memory from my past. They are as real to me as the present moment. No illusions and no smoke and mirrors.  The past is so tangible to me—it is alive for as long as I remember it.

I remember when my father was a dad.  I remember when I was a roller skating queen.  I remember when I had acquaintances and best friends and boyfriends.  I remember when I fell head over heels in love.  I remember when I went out on the weekends—every weekend.  I remember when I drank too much and I don’t care.  I remember when I had fun and laughed all the time.  I remember when I spent the whole afternoon at the mall.  I remember when I sat for hours people-watching.  I remember when I was in college.  I remember when I had old apartments in Seattle that I loved to decorate.  I remember when I was a good cook and could eat almost anything.  I remember when I read books and sipped soy lattes on the weekends in coffee shops in rainy Seattle.  I remember when those who are now gone were alive.  I remember when I enjoyed the present, but lived for the future.  I remember when I was an expat in México.  I remember when I had a life.

And I remember that every Sunday in my early 20s, when my business was closed like nearly every other in the pueblo, my stray dog and I walked to the puesto de cocos—the coconut stand—and I would buy un coco and the vendor would hack the top off with a machete, give me a straw, and my dog and I would walk to the sandy beach on the warm Pacific Ocean and I’d drink the water from my coco and talk to my friends while my dog ran free and life was as picture-perfect as a postcard.

This was real.  I lived it.  I can’t go back, but I can re-live it in my mind and I am someone again—someone who was healthy and pain-free and not visually impaired and didn’t stay in a motel and lived life to the fullest and could be anything I dreamed of.  That is where I go when the sky becomes black and the light at the end of the tunnel is still gone and there is nowhere else to go because the present is a nightmare I can’t wake up from and the future is a slow and painful death.

Physics answers the big mysteries of the universe and explains why planes don’t usually fall out of the sky.  It doesn’t delve into the human experience and try to make sense out of the nonsensical.  Isn’t that what counselors are for?

By the way, according to the theory of relativity, everything you just read is an illusion—it’s in the past now.

The MarineI dedicate this post to the memory of my beloved, paternal grandfather, whose yahrzeit—the anniversary of one’s death in the Hebrew calendar—falls today.  I lit a candle, said Kaddish, and made a small donation at sunset, when everything begins. This is what we do.  My grandfather was larger than life, the strongest man I ever knew, a traveler of the world, and as seen here, a self-enlisting Marine in WWII who fought in Okinawa and survived.  He died the year I got sick, but the smell of rye bread brings him back in an instant.

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20/40 = VISUALLY IMPAIRED?

patented_pediatric_color_eye_chart

Photo Source: http://www.ennovation.com

I had near-perfect vision less than 2 years ago.  It was somewhere close to 20/20, aside from some mild myopia, or nearsightedness, that I had developed in my early 20s and did not even wear glasses for.

Then, the keratoconus (KC) developed and went wild and you can read my blog for that saga.  I was at my corneal specialist’s recently as he wanted to see me for a 6 week follow-up after discovering central corneal opacity, or scarring, in my right eye months after my bilateral cross-linking (CXL) surgery.

Despite what I have felt has been rather negligent care, I got the full workup at the appointment: reading 2 eye charts, a refraction, a corneal topography, a corneal pachymetry, a check of my ocular pressure, and who knows what else I forgot.  I was in a bad mood due to the disorganized clinic and was not really sure why I needed all the tests when I just had them done, but asked if I could at least have a copy of my topographies since nothing was initially sent to my CXL surgeon in L.A. for the clinical trial.

The techs are nice and had no problem with my request of having 4 papers copied, as opposed to the last time when I asked the front desk girl, who said she would have to charge me.  Now, I finally had the scans I needed to see what my corneas and KC really look like at this stage, although my surgeon confirmed the other week that per my scans, the CXL was successful in both eyes and the progression of KC has been stopped in its tracks.  Thank the Lord for modern medicine.

After all the testing and finally seeing what I could of those scans myself, the doctor rushed in talking a million miles a minute.  He never seems to remember who I am or what my post-op issues are, which is really frustrating.  He asked if I had any improvement since I had last seen him and I replied that I had some intermittent watering in my left eye—possibly due to the Restasis starting to work after 5 months—and that my right eye with the scarring had the same vision, which is a good sign, as well as the fact that the horrid light sensitivity (sun burning my retinas) was better, but not gone. He did a quick check of my eyes and said, “Good.  Good.” That told me nothing, per usual, so I began with the questions that he hates, as he is already making notes in my chart at this point.

Here we go with the issues to preface all this.  I read 2 eye charts—from right to left my visual acuity (VA) is now 20/40, 20/40 on one chart and 20/30, 20/40 on another.  My left eye had gone up to 20/60 at my last appointment, so I was dealing with a post-op fluctuation that has cleared up.  To err on the side of caution, I will say my vision is 20/40 with great difficulty on those last 2 lines, as no one has had me read the charts with both eyes, or binocular vision, which often gives a better VA.  Would my true visual acuity not be of importance post-CXL?  Well, of course, but I am dealing with sub par healthcare here.  However, the big question is: why can I not see?

I should add that I do have a bizarre zone where I can see somewhat normally—it seems to start 1 foot in front of me and stop at 4 feet or so and there can be no sunlight or bright, artificial lights or the whiteout sets in.  This is the safe zone and aside from a plasma-type TV on a not-too-far wall, I get staggered vision of everything outside that space in small rooms.  For a description of how I see outside, in big spaces, and in the world in general—also known as the Ghosted Mess—refer to this post.

I have to ease my way into questions or my doctor gets irritated and the appointment ends, so I started with the basics.  I wanted to know if the Restasis was causing the intermittent watering in my left eye, or if that was just from my corneas finally starting to heal from the surgery, as Ehlers-Danlos syndrome (EDS) is causing very poor and slow wound healing.  The doctor could not answer that one. He kept saying my eyes were dry due to my meibomitis (MGD), which causes a lack of lipid (oil) layer in the tears, and that I just need more IPLs.  I told him I had my last IPL 2 months ago and his associate—the doctor I like who specializes in dry eye—said more IPLs would do nothing at that point and I would not need a touch up for possibly a year.

I had 5 IPLs with no improvement that I noticed.  However, the doctor thought they were successful in terms of the meibomitis, but as my eyes stopped producing the water layer in my tears post-op, they were still dry as a bone.  Yes, this is all confusing, but for more information on MGD, as well as post-op dry eye, refer to this post.  The corneal specialist gives me an odd look every time I explain that my complaints are related to my lack of a water layer and he says that I could barely open my eyes due to the meibomitis before the IPLs—although I only saw him once since 2010 and never had that symptom so I think he has me confused with another patient. Can I just see the dry eye specialist instead?

That leads to the big question—if my vision is roughly 20/40, why am I visually impaired?  20/40 vision is legal to drive in most, if not all, of the U.S. and I am not too sure I should even be on the road late at night, let alone left to wander in a big box store, which I would like to peruse with a stiff drink to offset the anxiety from the chaotic mess.  Why do people look like shapes and colors and nothing more, unless they are in my safe zone?  Well, the doctor is not sure, of course. What is he sure of?  Why is he a doctor?  Why is he the best corneal specialist in this horrid city?  I may have better luck getting answers from the local fortune teller, who happens to be in the jenky strip mall next to my motel.

Now, I am not an ophthalmologist, but I am quite capable of interpreting my scans.  Per the topographies, my better eye pre-op has no evidence of KC now in either the scan—showing no corneal steepening and 0% severity—or the K-readings, which are in the normal range now.  My worse eye pre-op decreased in severity by 32.5%, although my K-readings are relatively the same in that eye, thus showing keratoconus—although it will not progress further due to CXL.  K-readings measure the curvature of the cornea and there is still a significant steepening, which I can also see in the color-coded scan, but it appears to be much less severe, which makes no sense, especially since I got 6 or 7 lines of vision back in that eye.  Both topographies do look quite different from my pre-CXL ones, which is rather fascinating. So, it would appear that I would have no keratoconic vision in my better eye, yet there is from my vantage point and I do not have my old 20/20 vision, regardless.  May I also point out that at my last appointment, my doctor could not even tell me if the CXL had worked in that eye.  Can I please move to L.A. with a giant dehumidifier and go see my surgeon for follow-ups instead? As mentioned, even I could interpret that scan with my impaired vision!

Back to the question at hand—my doctor asked when I would be seeing my surgeon again, as he seems to think I am able to go to L.A. at the drop of a hat—even though I would need an all day ride, have to pay a huge cash sum to see my doctor, and rent a motel room there, while living in one here. I reiterated for the 100th time that I have not seen him since my surgery in September of last year due to X, Y, and Z—not to mention that my local doctor referred me there and said he would handle all my follow ups.  My patience was wearing thin.

Then, he asked how soon I could have laser vision correction surgery done there, even though that is my local doctor’s specialty (hence, corneal specialist).  Is he crazy?  I am 7 months post-op and a poorly healing, scarred mess due to my EDS and he thinks laser vision correction—namely PRK, which to my knowledge is still being studied for safety in post-CXL eyes (please fact check that), is a good idea? Due to the weak collagen structure in keratoconic corneas prior to the development of CXL, laser vision correction is contraindicated and is why all laser vision correction patients are given a topography to look for any evidence of KC before LASIK or PRK surgery.  My eyes are so dangerously dry, plus the central corneal opacity that is no worse 6 weeks later but has not resolved, and he is even considering this? Furthermore, upon researching this issue just for the hell of it, the only scholarly, research articles regarding PRK following cross-linking involve or reference this ophthalmologist in Greece, who is on the payroll:

Financial Disclosures: Dr. Kanellopoulos is a consultant for Alcon, Inc., maker of the Wavelight excimer laser that he uses for topography-guided photorefractive keratectomy [PRK].

Article Source: http://www.aao.org/isrs/resources/outlook/11/01_11_feat.cfm

Maybe it is best to just see the local shaman wandering in the desert at this point.  Perhaps some native shrub, like tumbleweed, can fix my vision—or is the local shaman in on the hustle to further destroy my corneas for some exorbitant fee, as well?

I told my doctor—who I now have absolutely no trust in—that there was no way I would go through surgery again with all the complications I have had and he mentioned something about my vision being bad from astigmatism.  What astigmatism?  Irregular astigmatism aka keratoconus?  9 months before my diagnosis, the optometrist I saw had misdiagnosed my keratoconus as mild astigmatism in my worse eye.  Was this something new that my doctor pulled from the refraction done that day that I was not given a copy of?  Add it to the list of copies I will be paying for very soon.

So, aside from residual keratoconic vision and little improvement in my K-readings in my worse eye, which I still don’t understand if the cone is so much flatter per the topography, is massive astigmatism in both eyes—the normal kind—contributing to the significant visual impairment now? If so, why can I not see any better with a refraction, just like when I had one before my diagnosis.  I just answer, “Same” every time they flip the lens and ask, “Which is better—1 or 2?” Is the KC cancelling out any hope of lenses correcting the astigmatism?  Why can I not get correction in my now non-keratoconic eye like my brother who has astigmatism and gets by fine with glasses?  I am so utterly confused and Dr. Corneal Specialist is of no help.

As I have no choice but to wait and hope my vision improves a little more as my corneas continue to heal, patience has now been added to the survival box, and while I twiddle my thumbs, I will keep crunching the numbers in attempts to resolve the elusive mathematical equation involving my VA: 20/40 = X.

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