“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 fugly—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.
I 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.
I wear a large, gold pendant on a thick, gold chain around my neck. My hand frequently gravitates to the pendant to make sure the necklace is still there. When I am nervous, I rub the six points and the intricate grooves on the surface and feel the smoothness of the two Hebrew letters—Chet and Yud—that spell Chai. I never take it off, unless I need imaging done and the techs force me to unclasp it and then I hide the necklace in my purse, as it is really worth its weight in gold these days. The large pendant—a popular style from the late ’70s and designed for a man—has sat on my chest for almost 25 years, but the chain is not the original and was replaced less than a decade ago.
The pendant was my father’s. He bought it for himself most likely to follow the trend and display his pride of being a Jew, when most men had large crosses, and wore it until the disco look went out of style in the early ’80s. The pendant is solid gold and heavy—far too heavy for the near 30 years of wear on the original, thinner, gold chain. I never noticed the links were wearing down in spots or that the chain was slowly weakening, like that old bridge on I-5 in my home state of Washington that just gave way and collapsed into the river below.
Around 7 years ago, I was living in a dumpy, rental condo across town. One afternoon, I was standing in the living room next to the laminate pass-through from the kitchen. I bent down for some reason and when I came up, one point of the pendant caught on the edge of the pass-through and the chain ripped off my neck. I saw it fly through the air in slow motion in a state of shock—as the necklace had so much significance to me. I picked it up off the floor and saw that there were numerous thin spots in the chain that I had never noticed, but it was that one spot—the weakest link I suppose—that had broken the chain in two. I knew at that moment that like the chain, the relationship with my father would never be mendable, and thus far, I have been right.
My father and I were estranged, as usually is the case, when the chain broke. We have semi-mended ways and then become estranged again at least a dozen times since that fateful day. He stopped talking to me—and by that I mean via infrequent e-mails—two weeks ago. I had responded to one of his chain e-mails, usually something Jewish: a little humor, a story of the Holocaust that he adds a memorable comment to, or some randoms facts that come his way.
I told him I was about to reach my insurance’s limit for physical therapy for the year and that I could not get an override, despite numerous attempts to do so. My Ehlers-Danlos and subsequent tendonosis is getting worse and I need physical therapy like a diabetic needs insulin. I have not been able to work for years and despise even hinting that I need money. He gives the same stock answer to any problem I mention, even though he would never really do anything. The e-mail came back with the familiar, “What can I do to help?” It sounds so wonderful and caring, like the father I knew as a child who I would search frantically for in our house after a day of being called derogatory slurs at school, but it is just smoke and mirrors now and I already knew the game we would play.
As he would never part with a dime to pay cash for my physical therapy, I gave a smart-ass reply and asked if he could grow a money tree outside of his home—the one that is half a block from Lake Washington with a 180° view of Seattle and the lake. The argument ensued. He claimed he was broke, his other stock answer, and I asked how a broke man has that home, and a custom Mercedes, and two country club memberships, and takes vacations every year. I would have mentioned shopping at Nordstrom’s and his young, gold digger girlfriend, but that gets very messy. He replied with, “How easily you forget.”
That was a reference to my childhood: growing up as the daughter of a successful businessman who bought me rabbit fur coats and diamond earrings for holidays, living in the beautiful homes that he, a high-end contractor, built, and taking vacations to warm places with palm trees and swimming pools. The poor-little-rich-girl saga that he loves to put me in lately. I suspect the gold digger, pulp-mill-town girlfriend is behind this as my father would never insinuate such things about me. I was as self-made as he was and he knows that.
How easily he forgot that he, my only real parent, emotionally abandoned me by middle school, made me start working when I was 14 so I would have a work ethic, that I never had anything in common with the few, spoiled, Jewish girls I knew growing up, and that if I wanted something as I got older—I bought it myself. Let us not forget that I rarely even lived at my home once I was a teenager due to the dysfunction swarming inside it.
I have had enough of this Jewish American Princess story he has invented over the past few years to avoid looking like the horrible father he has unfortunately turned out to be. His story is almost laughable considering I am on SSDI and live in a motel, but I suppose this is how he saves face while golfing with his old friends who have the princess daughters who aren’t even disabled. I ended the e-mail argument by replying, “I do not even know who you are anymore.” I really do not know this man who was so great at times in my early childhood—memories that have nothing to do with material possessions.
Before the price of gold went through the roof, I replaced the broken chain with the thickest twist chain I could find that would fit though the loop of the pendant. It is strong and sturdy and has only had one weak spot that I had a jeweler fix for next to nothing. The newer chain—of a lower karat and different style—is like the father I remember: the rock in my life, the bridge that would never crash down into the cold Skagit River north of Seattle. The old chain, with all the weak spots that eventually broke due to the heavy pendant, is my father now. He is a damaged version of his former self, unable or unwilling to carry any load, and like the chain that was beyond repair, so is he.
Getting a diagnosis for a chronic illness is everything. It does not mean you will get better per se, but you finally find that weird box that all your symptoms fit into and some solace comes from that. When I connected the dots after getting keratoconus and stumbled upon Ehlers-Danlos syndrome (EDS) and had my “Things that make you go hmmm” moment and then got a diagnosis of EDS Type II (Classical Type) confirmed by a geneticist, it all made sense. I have zero doubts about my diagnosis and personally, I think my textbook case should be used in the textbooks so doctors can learn to connect the dots, as well.
It seemed like a closed case 6 months after my diagnosis, but EDS is a genetic disease—in Type II it is autosomal dominant—and aside from those who are born with it via a spontaneous mutation, you only need one parent to carry the gene and the chance the affected parent will pass that gene on to their offspring is 50%. Flip the coin. It is quite clear that EDS Type II came from my mother—who has a rather mild form but some obvious Type II symptoms—and she inherited it from her father, who had a more severe case. This is documented in my genetic report. More information on Classical EDS (Types I and II) and basic, genetic information can be found here.
Just to up the ante, I do not have a good relationship with my mother. She never bonded with me, I have little recollection of her from my early childhood, and then have awful memories of her from around age 11 on as my father took an emotional hike and I got stuck with her until I decided that chillin’ in skeezy, 1980s, downtown Seattle at 13 via a bus pass and living with friends was a better option than dealing with my mother and the dysfunction in my home. As an adult, she was a chronic burden, and I got stuck raising my younger brothers for awhile when I was in college due to her inability to do so after my father divorced her. Then, I had to deal with her chronic phone calls for no apparent reason while at work during my pre-illness, workaholic, career years. She was a ball and chain tethered to my ankle for too many years to count and she was supposed to be the parent—not I.
Once I became sick, things deteriorated further with my entire family and her lack of ability to be a mother was more apparent than ever. She did take advantage of my illness to bolster her poor me story, however, which is the only story she seems to tell. She has many acquaintances, but no close friends due to her closed off nature, yet in time her entire circle knew about her hard knock life due to her sick daughter, although they had no idea that she did not even have a relationship with me. Nonetheless, this became her story for over a decade as it apparently worked for her—ol’ Johnny One Note.
Suddenly, however, things began to change once I got a diagnosis. My mother revealed more and more EDS symptoms that she had, which she previously dismissed when I inquired about them for myself. She would call my cell and not pick arguments with me for the first time in my life and while she is a passive listener who never has any suggestions or advice, at least she was not verbally abusing me on the other end of the phone. Dare I say she had a guilt complex that my 12 years of torturous pain, illness, and now impaired vision—not to mention losing my career, financial security, and entire life—were all from her defective genes? After all she had done, or not done, for me—I do not hold her responsible for giving me EDS. She did not even know she had it herself and we thought a lot of my grandfather’s symptoms were from his rheumatoid arthritis. Who would really know about Ehlers-Danlos back then? Most doctors still do not know what it is.
Well, all good things come to an end, of course. My mother, who is passive and does not have a voice of her own or an opinion on anything for the most part, was just trotting around China with my step-father, a retired physician, as they take extravagant vacations a couple times a year. She does not have a clue about medicine or medical research, let alone how to use a search engine or a library. Somewhere on the guided tour in China—so typical they take tours—she met all sorts of new friends from Australia. Note that making new friends is her entire reason for living and then she needs to tell everyone about how popular she is. Obviously, my mother told the sob story to her new friends. Well, as a result, she soon learned—possible over a lunch of pricey, shark fin soup—that one of her new BFFs had Lyme disease and my mother hung on to every word.
Let me preface this by saying I was tested for Lyme disease twice within the last 10 years, although it was the test that is not very sensitive. I had a couple of positive antibodies each time, which is not uncommon, but when discussing if we should order the pricey, sensitive test the second time around, my doctor and I decided to pass as I had no symptoms of Lyme disease, never had a bullseye rash, and the tick that carries it and transmits it to humans is very rare in any area I have lived in or traveled to. If I look at the symptoms of Lyme disease even now, it is so far out in left field I would never consider it. Therefore, it was crossed off the list.
My mother knows my EDS symptoms, or at least I told her what they were a thousand times. The more I research EDS Type II, the more and more it fits. How she heard this new BFF describe Lyme disease and then came to the conclusion that this is really what I have and that my textbook EDS Type II is all wrong is beyond me. Was my Johns Hopkins-trained geneticist having an off day when I saw her, as well? Now, I would so love to blame this on her lack of knowledge on everything aside from shopping, lunching, and throwing parties with lots of pricey alcohol, but I suspect she decided to play doctor for a reason, without the honorary medical degree I have acquired after more than 10 years of hardcore medical research on the wrong disease: my misdiagnosis. Why would she even be interested in my health when she never was before—and now that I have a clear-cut diagnosis, why would she question that?
It is so obvious, after all. It is all about her, like it always is. She gave me a genetic disease and now she is not able to tell the sob story without implicating herself in the process. Instead of acting like a mother who offers support or even someone who can relate to a couple of my symptoms as she has the same disease, even if in a non-disabling form, she is now set on finding a differential diagnosis in order to not be the one responsible for my illness and disability. That is precisely why she was never a mother to me and never will be, not that I would have a clue what having a mother is even like.
The final stage of the five stages of grief is acceptance. It seems that a genetic disease, as opposed to my former misdiagnosis, would be a hair easier to accept. There is literally nothing one can do to prevent it, so it removes all of the, “If only I had done x, y, and z.” Yet, how can I learn to accept all that has been put on my plate if some people cannot even accept the diagnosis? I would so love to put my mother on the next cargo ship back to China, but as she cannot do anything on her own, I presume she will fall overboard, be eaten by sharks, and then be ladled out as shark fin soup to the next round of wide-eyed tourists savoring the exotica in Hong Kong.
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 do 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].
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.
A fire broke out in a boarded-up hotel next to a gas station that sits kitty-corner to my motel recently. The deserted, ’70s-era structure, built under old building codes and with no functioning sprinklers, turned into an inferno in minutes and the entire roof collapsed.
It took over 100 firefighters to make their way through the busy, backed up street to get to the hotel and attempt to get a hold of the fire from the building’s exterior due to the roof, and the next day they were still pouring water inside the smoldering structure from a tall ladder, as they couldn’t enter the building due to safety issues. I took this photo 15 minutes after I smelled smoke and the firefighters had already done a great job of tackling the bulk of the inferno within a short period of time.
It was mid-afternoon and I was up as I had to get my X-ray reports. I was about to shower and smelled bacon—and I don’t eat pork. My motel has kitchenettes, which is why I fork over extra dough to stay here due to my food intolerances and allergies and the cost of eating out—and I was pissed off that some neighbor was frying up swine and stinking up my room. Within one minute, however, it smelled like my home state of Washington, which is like an earthy perfume with a base note of a wood burning fireplace.
My brain screamed, “Fire!” I looked out the window, but it was daylight and I get a whiteout effect. I had noticed it was a hair overcast earlier, as clouds equal more pain, but when I went to the window, the sky was black and the smoke was blowing toward me, but the corner of the building that juts out was blocking my view. I thought a plane had crashed, but my brain said, “Burning wood.” I flew out of my room and went to the hall around the corner that has a window that faces the same direction and presumed the fire was from that boarded-up hotel, even though I can’t see far and it was so black out from the smoke.
Then I panicked. I knew there was a gas station right next to the hotel and figured the whole ‘hood was going to blowup. I went back down the hall to try to find someone, but I can’t see people well, just figures and color. I noticed a guy with a big cart of sorts, and know there are a couple of employees who clean up the halls and rooms after someone moves out. All I saw was skin the color of café, so I made an educated guess and yelled, ”¡Oye! ¿Qué pasó? ¡Hay un gran fuego afuera!”
The unknown employee came down the hall and told me in Spanish that the gran fuego afuera (big fire outside) was from the old hotel and then shut the window, so he didn’t seem too worried. I told him how I was afraid of fires and didn’t know what had happened. The whole motel smelled like a bonfire by then, including my room, but I threw on my sunglasses and grabbed my camera which I never use and went downstairs to get photos. This is when it no longer looked like a 787 Dreamliner—currently grounded—had crashed while trying to land at the nearby airport, but it still looked and smelled awful.
The last time I lived here, there was a small fire on the top floor caused by one of the resident meth addicts lighting up a garbage can. Their other hobbies include chronic pacing and dragging furniture across the floor 24/7, as I have lived below 2 meth addicts now—and one was in a rental condo. As a result of the burning garbage can, the alarms went off in the middle of the night throughout the building and in my room—same one as now for good luck—and the fire doors in the hallways slammed shut and the elevators shutdown. I was still awake, but it was scary as hell.
I was worried the sprinklers would go off, so I shoved all I could under the table and covered the rest with garbage bags and grabbed my purse that holds a lot of what I need, my medications I can’t live without, my laptop, and my beloved cat, who I stuffed screaming into her carrier, and got into the stairwell to get to the nearest side exit and sat on the curb with the other residents who stay at the front of the motel. I should add that my vision was near 20/20 less than 2 year ago. The firefighters were everywhere by then and were going in and out that same door by where I was sitting and trying to reassure us. I didn’t know what was really going on and no one was talking to me.
I used to have a buddy in here on the top floor at the back of the motel—a cool guy who went to UC Irvine and had a life spiraling downward like mine. We used to lay for hours in the lounge chairs by the pool in the middle of the 100° F summer nights talking life and politics and discussing things like the ridiculousness of Reaganomics and the craziness of the Nixon-Agnew Administration, although neither of us were alive during the latter (well, I almost was). He texted me while I sat on that curb to see if I was alright. I texted him that I was and he said he was too, and that he and his neighbors were all outside at the back of the motel. Nearly 2 years later, I still have those texts in my cell.
My experience was a far cry from the 4-alarm fire in the boarded-up hotel, which is presumed to be caused by the squatters who had been living in there and roam this neighborhood. This is why a ghetto is a ghetto and they are not created on their own. This building owner, like others, was allowed to let the hotel sit boarded-up for nearly a decade and the city turned a blind eye, as they don’t care what it looks in my neighborhood. However, now that it is unsafe per the code, the city has ordered the owner to demolish it, which would have saved them and the tax payers a lot of money if it had been done nearly a decade ago and never would have caught on fire.
I equate my life and chronic health problems to a fire a lot. A fire just starts suddenly—often when you least expect it—and destroys everything in its path. It provokes fear and anxiety. It’s unpredictable and volatile and is affected by many things, like weather conditions and people—who either help put it out or stand by and do nothing. It changes the way a building once looked and how it functions and people get displaced. You lose things in a fire you will never get back, which is why you instantly grab what is most important It is a split second decision, so you better get it right. You have to know what to hold on to and what to leave behind, and have the sense to know what matters for your survival. By all means, hope that you have at least one person who cares that you made it through alive, even if in time they disappear into the smoke.
When the fire continues to smolder like it did in this building and has in my body for 12 years, keep fighting because with every flame you extinguish, another shows up right behind it. A fire can become an eternal flame and that is where things get tricky.
What to do when confronted with hate speech—whether in the spoken or written word? I shall save the former, a TKO tale, for another day, but as for the latter, I turned to the host of this blog—WordPress. They can and do suspend sites, although they shy away from the tricky subject of hate speech, which has gone all the way to the U.S. Supreme Court. Regardless, when it comes to offensive posts and blogs, they suggest you reply to them and also that you write your own post and “speak you mind,” and thus, here we are.
In America, hate speech has often been found to be in violation of the First Amendment, which grants us the right to free speech, among other things. For those who are non-Americans, take the U.S. Constitution and the First Amendment with a grain of kosher salt. To put it in layman’s terms, you cannot falsely yell, “Fire” in a crowded movie theater (Schenck v. United States). Cases involving libel and slander can be legally pursued and often are.
While some of us in the world embrace diversity and accept others who are not like ourselves, there are those who are intolerant—usually due to their upbringing and the biases of those they surround themselves with. There are those who turn a blind eye to these types and those who fight to the bitter end.
I am not interested in fighting; I am interested in righting a wrong. The person whose hate speech started my ordeal on WordPress is not being much of a nuisance anymore—not surprising to me at all. It takes real chutzpah to speak up, yet that is all I know. However, the snowball began with this one individual and then the true colors of others came out—also not surprising based on personal experience. However, to get it from a fellow, non-white person was surprising for this round-the-way girl.
This past week, I was included in a hoax—a prank post if you will—on someone’s blog. I do not care for pranks as they make fun of the innocent and are juvenile. As my blog and I were linked to the prank, without any knowledge of it or any forewarning, it made my former post look like a hoax, too. I tried in good faith to rectify the problem and make amends, but it appears this blogger, who is possibly posing as 2 people, was simply stringing me along until they could post again.
I revisited their blog, as I normally do, only to find a nonsensical post on grammar, which then alluded to the written word and English, which is not their native language, and prefacing all this was a quote by Hitler from Mein Kampf, to prove their point that the spoken word was more powerful than the written word—per a madman who should be taken seriously and quoted. Wow! The quote, which also had punctuation errors, contradicts the entire post regarding the linkage between grammar, English, words, and writing (written word) and how they are so “good” at English, which is a rather pompous statement, but good for them—go take a course in 20th century world history now. The most ironic part is Hitler would have despised this person as much as me, as their race from a far away land was once referred to as “colored”—a disgraceful term but part of not-so-archaic English.
Following WordPress’ guidelines, I left a long comment regarding the quote and referenced the Nazi Party’s use of written media—via 3 reputable sites—as the primary source for spreading their propaganda in the 1930s until their defeat in 1945. I received a rude reply that they had read Mein Kampf—something to be proud of—and other “controversial books,” such as The Da Vinci Code, which I could care less about reading, is oh-so high brow, and is on the .99¢ shelf at your local bookstore in the States. I was told I would not get an apology, not that I asked for one. If you write inflammatory posts, expect critics to call you out.
I have numerous quotes on my blog now, and all from admirable people. My life’s motto comes from a quote by Dr. Martin Luther King, Jr. However, this person intentionally chose to quote from a madman, no different than if they had quoted from Ted Kaczynski’s Manifesto. Should I refer to the doctors I dislike as Nazis—or worse—Mengeles? Oh, yes—they referred to being Nazi-like with their English if I recall. Should I quote from Pol Pot of the Khmer Rouge who massacred at least one million of the intellectuals in Cambodia as they were a threat or perhaps from the Akazu—the Hutus who masterminded the killing of more than half a million Tutsi countrymen in Rwanda simply to make a point that contradicts my post?
I would not and I will not, as doing so is hate speech and simply goes against my values, not to mention the golden rule (from the Christians!)—and forget the fact that the mention of these subhumans makes me want to vomit. This post at hand is not hatemongering—something WordPress dislikes. It is calling a spade a spade, which is what they suggested I do: write a post about the issue before involving them in the matter. Thus, I did what WordPress suggested and I also asked this individual to stop following my blog, which they finally did after the 2nd time I asked and numerous comments sent my way.
In summary, as the wise Buddha said, “Whatever words we utter should be chosen with care, for people will hear them and be influenced by them for good or evil.” What a wonderful quote on the spoken word, instead of one by Hitler, which referred to the persuasive abilities of the spoken word to commit evil.
Like the wise Buddha, I choose to do good, even if I had a laugh at the expense of a dark-skinned Nazi sympathizer.
An example of spoken word in all its glory and yes, “I am Jewish.” Thank you, Andrew—bring on your mastery on the anniversary of the day I became a Bat Mitzvah:
This photo is of the Holocaust. This is how my family who did not make it to America, and primarily came from Russia near the Polish border, was killed. As Jews of the Diaspora, this is where my ancestors ultimately fled to following our expulsion from Judea—modern-day Israel and our ancestral homeland. The fact that this photo is presumably from a concentration camp is irrelevant. In the Pale of Settlement, or Western Russia, the Nazis entered the shtetlach—small towns Jews were forced to live in, made the men dig large pits in the forest, and in two days, they lined up and shot every Jewish resident. They threw their bodies into the pits and covered them with dirt whether they were dead or alive. The Holocaust was the result of intolerance of those who were different and new findings I have read from reputable sources put the mass murder at close to 20 million now—non-Jews included. These were my people.
Due to an intolerant evangelical among us on WordPress, I will be moderating all comments from here on out. I assumed this would be the price I would pay for revealing a core part of my identity—the fact that I am indeed a Jew and damn proud, just as my father taught me to be. It was after much thought, and 7 months, that I revealed this through a post after my younger brother said, “If you were black, you couldn’t hide your skin.” Good point. I was tired of hiding.
If this individual continues to be a nuisance, I will reblog their post and my reply to it. Then, everyone will know who they are, while they currently hide behind their public blog that is not attached to their Gravatar. If you visit my blog due to Ehlers-Danlos syndrome, please be forewarned, as they don’t care for anyone that isn’t like them and are quite frank about it.
I have no problem with Christians and some of you may be surprised to know that I’m often commenting away on the blog of a wonderful, devout, Christian woman who is almost a diplomat she is so neutral. I recently called her a mensch and she assured me this behavior was against her Christian beliefs. She, and her plethora of followers, are aware I am Jewish and we all get our turn stating our mind. It’s a wonderful blog for me. Of course, I have lived in a Christian country my entire life. However, cyber bullying is rather juvenile; it’s quite cowardly in my opinion. I have endured much worse in the public schools I attended by the Christian kids, but as an adult, I will not sit by while the intolerant, anti-Semitic right-wingers in the U.S. try to have their way.
Long live civil liberties; long live in memory my heroes—the great founders of the Civil Rights Movement, and long live being a tolerant person, regardless of one’s culture, race, religion, sexual orientation, disabilities, and so forth. By all means, I will continue to write from a minority perspective and make jokes at the expense of others, but this is in good humor. Oy vey! There is no room for bigotry on this blog, period.
I love you all and you know who you are–my best blogging friends–and just friends–in the world! You may still comment away… Your comments will just be waiting for approval, unfortunately. I hope to see you soon, as I will be posting my oddities per usual. Life goes on…
*This post has been slightly altered from the original as I finally figured out how to provide links!
I live in a weird city with weird people. I also live in the ‘hood, which is an ethnically diverse mix of undesirables and makes it even more interesting. It’s not the South Side of Chicago by any means. The Southwestern U.S. was largely developed in the latter-half of the 20th century, so imagine rows of mid century, rundown strip malls filled with liquor stores, pupuserías, laundromats, payday loan shops, and taquerías jammed between big box stores and junkies roaming around every parking lot trying to hustle a buck off you. Due to my low vision, lack of rides, and the sun setting later, I’m stuck attempting to drive during the day, which has forced me to access the medical care in this stellar part of town whenever possible.
I have needed an X-ray of my spine since I got sick 12 years ago, as I have a bizarre vertebra jutting out to the right in my lower cervical spine and mild scoliosis in my thoracic region, combined with unrelenting back pain from Ehlers-Danlos syndrome (EDS). I finally got my new PM&R doctor to refer me to an imaging center and I found one within a mile of where I stay. It is also the only place that takes appointments, so I wouldn’t have to sit for 3 hours, which really hurts. I called and asked for the latest appointment, which was at 4 pm and the receptionist told me the X-rays would be taken at 4:30 pm—typical of how imaging centers work so that everything runs on schedule.
As I have difficulty filling out forms due to my vision, I picked them up a week prior so I could take my time and fill them out in the best light. It took me about 1 hour to find the place as I can’t read building numbers or the signs that say what is in the buildings. Just trying to drive is enough of a nightmare. After numerous attempts and driving in circles, I eventually went into the right building and found the center, but it was closed. I tried another day and finally got the forms. It’s part of life with keratoconus, so I didn’t make a big deal about it, although my low vision made me rather depressed that day.
This Friday, I had my appointment for the spinal X-ray. I was running almost-on-time, but got there 1 minute late and had all the forms filled out already. I gave the front desk woman the forms, with a brief explanation as to why I already had them, handed over the necessary cards, and was told I was after Barbie Big Boobs—a typical look in the ‘hood due to all the strippers and hookers—I mean escorts, and that it would just be 15 minutes or so. Wonderful! I didn’t have to wait 3 hours like I do at the eye doctor or would be doing at the walk-in imaging center across the street.
I wasn’t feeling well as I’d pulled several muscles that go from my ear down to my shoulder joint in my sleep (again) and my whole body aches chronically in general. It’s all a typical day with EDS. I just wanted to get the X-rays over with as I had to get my brake light fixed and then go to the pharmacy and blow more cash (again). I also hadn’t slept much due to the steroids I’m on (again), which doesn’t help anyone out. Yet, I complained to no one and had my smiley face on while I took my seat.
There was a woman in the waiting room I’ll call Misty, a creative, white-girl name like her real one, who was blabbing with her friend on her cell phone in a very loud and annoying voice and using words that were definitely not appropriate in a small, public place. I could sort of make out her face and she looked like the dog above. As a disclaimer, if your name is Misty, don’t take offense. I know a woman named Tiffani—that is an i at the end—who is nothing like her name.
Suddenly, Misty got off her cell and began to yell at the front desk woman from her seat. It appeared her complaint was that she had an appointment on Sunday for an MRI, but they had called to let her know there was an opening on Friday if she would like to reschedule. Obviously she rescheduled, as she was sitting a few seats to my right. She went on and on about how she was told her appointment was at 4 pm, not 4:30 pm. She told the front desk woman to, “tell the guy in the back to hurry up,” which the front desk woman stated she couldn’t do. She also added that the MRI of her back would take 2 hours and she couldn’t be there all day. That’s amazing as I’ve had an MRI of my back done in 30 minutes or so.
She demanded to know who had told her to come in at 4 pm as she had stuff to do. The woman calmly told her it was someone in scheduling. Misty demanded she give her the phone number and she whipped out her cell phone again. She seemed to think her cell phone was akin to a Glock 9.
Someone must have answered in scheduling and Misty said she wanted the supervisor. She abruptly had a calm, quasi-professional voice, aside from her confusion of past participles as she stated, “I wouldn’t have drove all the way over here to wait 30 minutes.” It’s driven, Misty, driven! She went on and on again about her predicament and was so infuriated that her appointment was really at 4:30 pm. She told the supervisor how the front desk woman would do nothing and wouldn’t even go to the back and tell the imaging guy to hurry up, despite her asking. She had a fondness for ending every sentence with, “You know what I’m saying?” and there were a lot of uh-huhs on Misty’s part as the supervisor must have been trying to appease her. She just felt so special that someone was listening to her sob story. Did it ever occur to her that she would be waiting 30 minutes on Sunday, as well, if she hadn’t rescheduled?
Now, I am one who often jumps into weird situations in this weird city in a “What Would You Do?” scenario, but I just decided to sit there with my finger in my ear in attempts to block out Misty’s ranting and hope the tech would soon be done with Barbie Big Boobs, who was also there for a spinal X-ray, presumably due to her Super Size implants causing an achy back or possibly her 6″ stripper boots throwing her off balance. Poor thing.
I couldn’t help but take stock of my situation at that moment. How many hours of frustration did it take for me to get and fill out the forms due to my low vision? While sitting in the waiting room, I wasn’t able to see the TV or read a magazine or do much of anything. I still had a racing heart from driving there in daylight and pulling a U-turn on a major thoroughfare and praying there weren’t any oncoming cars that I couldn’t see. I kept rubbing deep into the knots in my neck and shoulders and wishing that for once in 12 years the pain would stop. I was worried about what else the X-rays might reveal, as I already have 2 troublesome spinal issues. I spent over $13,000 USD on medical bills last year. I live in a motel due to being broke, on disability, and other factors. Unlike Misty, I have no friends to call on my cell phone, which is actually good as I don’t have many minutes. It’s not a smarty-pants phone and I don’t pretend it’s a Glock 9. I wasn’t complaining to anyone about anything. I just sat there in the distorted-looking room while forced to listen to Misty’s temper tantrum over nothing.
Finally, my name was called and I got changed and went into the X-ray room. I had to pose in bizarre and uncomfortable positions over and over and then lie on a hard table that hurt my whole body while the tech continued to manhandle my achy self in order to straighten me out while my barely 100 lb, skin-and-bones body tried to stay covered in an XXL gown, which was all they provided to accommodate the XXL Americans.
If your female body is half-exposed due to being underweight from a genetic disorder that takes away your ability to eat and digest food and the gown doesn’t stay on because you don’t eat yourself to the standard size, that’s your own fault I guess, but I didn’t complain and I just kept trying to cover myself up while making a joke about it. I am quite sure the imaging guy was disappointed he got stuck with short Olive Oyl after X-raying flirty Barbie Big Boobs with her head of platinum extensions and perky bustline. I could be legally blind and spot all that.
I was finally done after 20 minutes or so and as I headed out, I could see that Misty was gone, unless she gave up the corner seat to go have a slim n’ sassy Misty cigarette. Apparently, the important stuff she had to do really was top priority. I could only imagine what choice words she said on her way out. The front desk woman was now blabbing on her own cell phone—such professionals here, but I needed to make sure the report was going to my referring doctor. She looked up my name and said it would be sent—all while her friend was on hold. I told her I hoped she had a better day and was sorry she had to deal with Misty, which she appreciated, so I did my good deed for the day.
Here’s what I would love to know. What was so tragic about Misty’s life that she had to throw a barking, hissy fit over something so idiotic and ruin everyone’s day? Who doesn’t wait a minimum of 30 minutes for anything in the U.S.—especially when dealing with our healthcare system? What gives anyone the right to talk to an innocent party in such a demeaning way and disturb an entire waiting room due to their need for attention? This is not appropriate behavior and makes it harder for cordial patients, like me, to get treated with respect when I finally do find functional healthcare. There are standards that are followed in any medical center and this issue didn’t warrant any complaints. Of course, there are times when it is necessary to take a firm stance to get things done, but this didn’t fit the bill and it’s not how a decent person takes care of business, regardless.
If the Mistys of the world really want something to complain about, they should walk in my shoes for a day. I can only wear flats due to EDS, which may make it a little easier, but I doubt they would last even 10 minutes. Bark, Misty, bark—it isn’t going to get you out of this one, either.
Some matters call for drastic measures. They require you to reach deep into your bag o’ tricks to find a resolution. For me, this is where being a kvetch, or a kvetcher, comes in handy.
For those not familiar, a kvetch is a complainer and kvetching is what a kvetch is always doing, although a kvetch can also kvetch, so it is both a noun and a verb. A kvetch also kvetches, which makes this even more confusing. Allow me to provide a quick lesson through some personal examples.
My father is always kvetching; he kvetches if his Diet Coke doesn’t come with a lemon wedge.
Don’t kvetch so much! I have something even worse to kvetch about.
Why is my grandmother such a kvetch? She’s the biggest kvetcher I know and doesn’t have a care in the world.
As the Yiddish spoken in America became Anglicized over the last century and the majority of American Yiddish-speakers of yesteryear have passed on, it’s all taken with a grain of kosher salt. Fancy Schmancy was not a phrase used in the old country, after all.
Nonetheless, the term kvetch is used in a derogatory sense and is generally reserved for those types who chronically complain about everything in a very drawn-out way. At the right time, however, I put on the kvetch hat and make the most of it. You must kvetch with an end goal in mind, or else you might as well be a plain old complainer. Kvetching is an art and one must know when and how to use this craft.
I had to pull out the kvetch hat quite recently in order to remedy a problem. Refer to my last post for the whole saga, but in short, my corneal specialist just left me hanging over a week ago with a diagnosis of central corneal opacity in one eye, a type of corneal scarring that can lead to blindness and is a rare complication of cross-linking (CXL), which I had done 6 months ago for my keratoconus. He told me I had to go back to L.A. to see my CXL surgeon, which isn’t possible, and that was that.
I have been self-treating my eye with 2 prescription drops I had on hand since the Friday I was diagnosed with the opacity and was awaiting a response from my CXL surgeon, which I got in due time via e-mail. He told me that it didn’t seem that serious—as opposed to my local doctor, the corneal specialist, who told me I could lose my vision in a few weeks. He mentioned that he would be happy to see me, regardless. That got me nowhere since traveling to L.A. was out of the picture. Who was I to believe? I had to save my eye, so it was time to start kvetching, but to whom? This is not a solo sport.
Well, I got a second chance due to my local doctor’s assistant not reminding him at my appointment—despite reminding her—that this was my 6 month follow up for the FDA clinical trial and I would need the appropriate paperwork filled out and various tests done. My doctor didn’t do anything required by the FDA, so I was rescheduled to see the optometrist who works with the surgical patients this past Friday. That was just what I needed. A chance to perform the art of kvetching in all its finery.
In the meantime, I called the clinic the Monday following my disastrous appointment and left word for my doctor that I had contacted and heard back from my CXL surgeon, wanted to be treated with an ocular steroid and antibiotic and have a follow up in 6 weeks, and to have him call me back in regards to this. No call. I called again on Thursday afternoon and asked why he had not called back. The rude receptionist who answered told me, “Your message was very lengthy and he did get the message.” Perhaps he could get e-mail like my very busy CXL surgeon? Regardless, her response told me nothing other than that I was still left hanging and he wasn’t going to treat me. I let her know that I couldn’t go to L.A., he was my treating physician, and that I expected a call back in a not-so-nice-tone to mimic hers. This was more of a stern kvetch, kvetch, kvetch.
I got a voicemail from my doctor Friday morning, which was the next day, saying I needed to make sure to come in for my appointment with the optometrist that day, as well as a voicemail from the rude receptionist reiterating what he said and that my doctor would see me at the appointment, also. Maybe the kvetching was paying off? I called her back and told her that I’ve never missed an appointment and asked why these messages were being left, just to kvetch some more for kvetching’s sake. This was really just to add extra emphasis and be a pain in the ass, or more accurately, a pain in the tuchus.
I am always running almost-on-time due to my mess of a body from Ehlers-Danlos that is like the Tin Man from The Wizard of Oz, but I managed to print out the journal article written by my CXL surgeon with the case report and treatment protocol I was following for post-CXL central corneal opacity and also had a copy of his message from the e-mail in hand for the appointment. All bases covered. One must do this to be an effective kvetcher—kvetch in an informed manner and keep your eye on the goal.
I had been in a pissed off mood for a week due to this ordeal, so when the cheery front desk girl asked how I was doing when I checked-in, I didn’t give a nice response. Why lie? It was more of a kvetchy, I’d-be-better-if-my-doctor-gave-a-crap response, but she continued to act in an odd, overly nice way that I don’t normally see there. I took a mental note of that.
Luckily, one of the better techs called me back for the various tests I had to do and I started kvetching to him about my treatment there—or lack thereof—since he sees me often and is aware I am never like this at the clinic. I even told him, while he was making notes in my chart, that I was on the two new drops in one eye and was treating myself due to my doctor not willing to do so. Oy vey. Would he warn my doctor that a kvetch was in the clinic? I was betting on it.
The tech and I went into a little room to do the corneal topography and I felt someone rubbing my back. What the heck? I turned around and it was the front desk woman I normally deal with and know fairly well, so something was definitely going on. She had the sorry-you’re-dealing-with-this look, which wasn’t necessary, but gave me some reassurance that a resolution might be coming. How did she know?
Had the rude receptionist spread the word that I was a hugely dissatisfied, kvetching patient who could possibly be a yenta—a gossipy woman—and ruin my doctor’s reputation in this big-small-town in the Southwest? Did the 99.5% Latino, but primarily Latina, support staff have a hidden knowledge of Yiddish and its deeper meaning? Had they been throwing these words around all week in between English, Spanish, and Spanglish?
“Esa mujer que always está kvetching. Oy, I’m gonna go loca.”
All the better for me. Relax, I speak Spanish, was an expat in México, and love that America is a melting pot of cultures. Thanks to the Spanyidglish, the kvetching was definitely paying off.
From there, I was led to another room and told to wait for the optometrist. I planned on kvetching to him about the predicament I was in and asking for his advice while throwing my hands up in the air, rather than just shoving it down his throat. Again, there is an art to this all.
However, just as I sat down, my corneal specialist came in. I wasn’t expecting him yet, so I quickly prepared myself. I noticed he was more humble than usual and had a nicer demeanor, as his mood is unpredictable. Had he prepared himself, as well? I believe the yentas in the office had warned him about me, as well as the tech. I did kvetch about my predicament to an extent, but I was armed with the medical journal article and the e-mail message, all from my CXL surgeon. Perhaps this would finally be resolved. One must know precisely when to take the kvetch hat off, of course.
The optometrist quickly came in and now both doctors were tackling the opacity issue together and taking turns peering into my eye and talking in hushed tones. The optometrist could see the opacity but thought it wasn’t that worrisome for now. My specialist actually read the case report in the article I had presented and then agreed that the ocular steroid I was using was the best approach and said that he wanted to see me again in 6 weeks to recheck my eye. Was that not what I had asked for in the lengthy message? He even kept the journal article—fancy that! He reiterated that it would be best to go to L.A. as my surgeon has been doing CXL since the U.S. trials began, but my doctor is doing them now, so what will he do when this happens to one of his own CXL patients?
Who cares at this point? The kvetchy wheel got the grease again and that, my friends, is the whole megillah. What a never-ending story it is—similar to reading a long post written in three languages.
I don’t want to write this post. I had a preliminary, uneventful post floating around in my head regarding my 6 month, post-CXL checkup, but then the crap hit the fan, which I think happens in Airplane, as well. Oh, I so wish that movie could have been on any of the boring channels of Dish I get at the motel last night.
Once again, I am left wondering how this happened when I’ve been at my ophthalmology clinic at least every month since my surgery. As I was in a clinical trial for cross-linking (CXL) for keratoconus (KC), I have had post-op checkups at 1 week, 3 months, and then 6 months, which was yesterday. These are all done with my local corneal specialist.
However, due to the IPL treatments I’ve had every month or so for meibomitis, I have been seen more often by a different associate at the clinic. Since I pay cash for the IPLs and they bill insurance for the office visit, could he not do a 1 minute exam of my corneas to make sure all is well due to my status as a post-op patient? I also mentioned to both doctors I see there that I was diagnosed with Ehlers-Danlos syndrome (EDS) this winter, which due to poor wound healing, should have led to more frequent post-op checkups due to the complications I already had.
I went in yesterday afternoon expecting to wait hours for my usual 5 minute appointment, get no answers as to why my eyes are still so dry and the sun is still burning my retinas, read a big, lighted board with lots of letters for the FDA, and call it a day. Things started out fairly well. With great struggle, my visual acuity (VA) is largely the same. From right to left, I came in at 20/40 and 20/50. The 20/50 eye was 20/40 last month, but it fluctuates and this technician isn’t my favorite. I wan’t worried and that was my better eye pre-op. The fact that my bad eye is still holding at 20/40 when it was 20/100 pre-CXL is atypical and great news.
My doctor checked my eyes for dryness first. He said that my eyes were a 5 on the dryness scale due to the IPLs and possibly the Restasis and were around a 12 before—is that the 1-10 scale and was 12 added for emphasis? He noted dry spots on my left cornea, which was my better eye dry-wise and keratoconus-wise. Well, that’s strange. I was just wondering how I’m a 5 with no tears and mentioned I had ointment and liquid gel drops in my eyes, but he said he can see beyond that. That didn’t answer my question really, but I figured that this too shall pass.
Then his assistant put the yellow drops in my eyes and maybe another drop and then he did an in-depth corneal exam. It seemed all was well, until he stopped and told me I had central corneal opacity and a scar forming in my right cornea, or something along those lines, as I tend to experience hearing loss at times like this. At least he was talking and giving me more than 5 minutes this visit, so I asked what that meant as it didn’t sound good. He told me there was cloudiness in my cornea and something about a scar and that I needed to see my Top Doc CXL surgeon in L.A. He said, “When can you go… 2 weeks, 4 weeks?” Oh, this wasn’t good at all. Here is why:
Corneal opacity is a disorder of the cornea, the transparent structure on the front of the eyeball, which can cause serious vision problems. Corneal opacity occurs when the cornea becomes scarred. This stops light from passing through the cornea to the retina and may cause the cornea to appear white or clouded over.
There are many causes of corneal opacity. In some cases, your doctor can recommend a treatment that will reverse the opacity and lessen your chance of needing additional treatment, such as surgery.
I just kept staring at him and the gears in my head were going wild. CXL is very safe, I saw the best surgeon, and my right eye, which was the bad eye, was not in the advanced stage or super-severe stage of keratoconus. If it were, I would have been disqualified from the clinical trial and my surgeon would never have taken the risk and done a corneal transplant instead. Nothing was making sense. Would I get a blind, milky-white eye like that 200-year-old jihadist that died a while back? I thought keratoconus was bad enough?
I told him there was no way I could get back to L.A. again. I asked if he could send a letter and maybe my surgeon could explain what was going on from that and a record of my exam, but my doctor said he really needed to see my eye, but would send a letter, regardless. Forget the rides, the hotel, and paying cash to see the out-of-network surgeon who I had to sell a kidney for to get the bilateral CXL—now I’m having some possibly serious complication from my EDS as I have mitral valve prolapse, which is a type of heart murmur that has always been asymptomatic. I can’t see a cardiologist until the end of March and am hardly able to walk around the grocery store due to shortness of breath and horrid fatigue, which seems to be caused from the heart palpitations and regurgitation. This was enough worry for one month and now this?
I came back from the appointment in a state of shock and sent a 1,000 word count e-mail to my CXL surgeon, who luckily gave me his e-mail address months ago—fairly sure he’s regretting that one. I stayed up all night scouring scholarly articles in medical journals to try to understand this. I found a few things worth noting. Eyes with very thin and very steep corneas are more at risk of central corneal opacity and scarring. In one study, 8.6% of eyes developed significant scarring withing 1 year post-CXL as a result of this.
A dry article discussing this: http://www.ncbi.nlm.nih.gov/pubmed/20376462
My right eye wasn’t as advanced as these eyes steepness-wise per my topography and my surgeon’s remarks and although I have no record of my corneal thickness, it still made little sense. Could the EDS be behind it? I have Type II and have tissue fragility, poor wound healing, and terrible scarring from incisions, although I didn’t have any incisions with CXL. Why did this happen then?
I found 1 study indicating that patients who developed central corneal opacity and scarring had complete resolution within 1 year, but now the article is hiding in Google somewhere. I don’t recall the problem was connected to thin or steep corneas, either. I have to dig pretty deep to find these and forgot to leave bread crumbs for that article, which would be called bookmarking it. Great. That was my big ray of hope and don’t ask me how a scar resolves.
Regardless, some of these studies were older and with any new technology, one makes improvements. There is now a protocol using a hypotonic riboflavin solution along with the standard riboflavin solution to plump up the cornea during CXL to prevent opacity and scarring. It is also necessary to check for the flare to ensure the cornea is fully saturated with riboflavin and then to measure corneal thickness following that to avoid problems due to an overly thin cornea during the surgery.
Another dry article discussing this: http://www.healio.com/ophthalmology/journals/JRS/%7B58E0CCB5-5659-4AF9-94AE-FF77BCF1A775%7D/Stromal-Opacity-After-Cross-linking
Did my surgeon not do all that? I wrote about the flare in a past post, but I couldn’t remember anything about measurements and who knows what was going into my eyes? Why was I doubting one of the best keratoconus specialists in the world? Well, read my former post if you’d like to know why I don’t trust anyone with M.D. after their name.
Luckily, I found an article he wrote discussing the importance of all the above. Phew! Good doctor! I also read about a patient he had with the same problem, but shortly after CXL and they had vision issues from it. I presume I don’t since my VA hasn’t changed in that eye, not that I can see well due to the KC. He resolved it with long-term steroids and antibiotics. Hmmm…
Now, steroids (drops, pills, or whatever) make me very sick and I’m still losing my hair from those following CXL, but according to the article, this is only 2 drops a day and in 1 eye versus 4 drops a day in 2 eyes post-op, thus 2 drops instead of 8 drops a day. Could I pull it off? I have a full bottle of the exact steroid he used on this patient, as my local doctor prescribed it for the dryness and I stopped it withing 24 hours due to side effects, but I was on the 8 drops a day protocol. I even have a good antibiotic left over from my CXL. How is an antibiotic going to get contaminated—it’s fine. Why not?
So, as I am not one to sit around, like to be my own doctor and am damn good at it, would never be able to get a corneal transplant due to the EDS and cross-linked eye (yes, this appears to be causing rejection), and had a published treatment protocol to follow thanks to my surgeon, a medical journal, and Google—I whipped out my ocular steroid and ocular antibiotic last night and considered it treatment day #1. As a disclaimer, please do not follow any of my advise on playing doctor.
Oh Lord, tell me I don’t have to go to L.A. and that this protocol will work and not make me sick. I really picked the wrong week to stop sniffing glue, quit amphetamines, quit smoking, quit drinking…
Where’s a damn Blockbuster when you need one? It’s not like I can order Airplane from a motel room.