Category Archives: Miscellaneous


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Years ago, I needed a bottle of essential oil to ward off the desert spiders that had invaded my former rental.  I found it at a store that sold odd herbs, good luck charms, amulets, candles, things pertaining to black magic, and items usually used by fortune tellers, or psychics as they’re referred to nowadays.  There had been a sign in the window that there were psychics available, but I really couldn’t justify spending money I didn’t have on an unproven science, although I was curious.

So, I perused the hamsas and evil eyes after I grabbed my oil and then a woman with wild, blonde, curly hair came out from somewhere and looked at me and then started to talk. She had noticed my necklace and told me she was a Russian Jew.  I said that I was, as well, or at least most of my father’s side came from there.  Wouldn’t she know that if she were psychic? She rambled on a bit, presumably to get my business and then left while saying, “Jews are very psychic,” to which I replied, “Well, I’m not.”  I paid for my oil and never went back to that store, but I go to a shop in the same complex every couple of months and think about that comment.

I get premonitions.  When my paternal grandfather was dying in the hospital, I visited him every night after work.  He was on a respirator and pumped full of morphine and every breath sounded like his last, but I knew when he was going to die. No one had told me that it was probably his last night and he looked the same: a comatose body in a bed in the ICU, but I knew.  On that last night, I kissed him on his high forehead, not so different from my own, and said, “I love you, Papa.”  He died early the next morning and I wasn’t there, but at least I got to say goodbye.

When I was young, I had this premonition that the number 22 was bad luck.  On the 22nd of that month, my brother and his friend were sliding down our staircase on vinyl pillows—a rather stupid thing to do—and my brother’s friend didn’t land right and broke his arm.  That was just the beginning of bad luck with the number 22 and I wouldn’t even fly on that day. When I hit my head this January, it was on the 22nd.

Oh sure, most people probably can relate or have had similar experiences—I never claimed to be psychic if you recall, but I wish I were.

But, one premonition that came to me within the last 10 years seems to be coming true, once again.  I said that I wouldn’t make it past a certain age: a milestone birthday which most people dread that is just around the corner.  I’d make it to that age, but not any further.  Do I care?  No I don’t, as long as my cat is okay.

You might wonder about that.  Life is so great; there’s so much to do and so little time; there are friends and lovers and soul mates; there is travel and adventure.  That’s not my life anymore.

My life starts the same everyday and has for the last 13 years: I wish I’d died in my sleep as soon as the alarm wakes me up from my medication-induced shallow sleep and the chronic pain hits me like a ton of bricks.  The pain feels like someone took my skin off, shrunk it 4 sizes too small, and put it back on my body so that the muscles and fascia are literally bruised to the bone from the compression.  I have to get out of bed and move and try to see with the new vision I was also blessed with.  I need hours in a recliner with a down pillow to get my pain down to a level 7 on the 1-10 scale, but I have to keep getting up, moving around, and stretching or it just gets worse as my muscles chronically go into spasm. I have to figure out what to eat when I’m down to less than 10 foods, and I’ll still break out in painful rashes and my GI tract will be a mess all day and night.  And at some point—usually after midnight if I don’t have a ridiculous appointment, I have to shower and deal with the upkeep that a human body requires unless you want to look like the vagrants in the parking lot here.  Then, there are the chores that are so hard, like cleaning my 300 sf room here at the motel and using the laundry room down the hall.

Most people do all this everyday without a second thought.  I know, I used to do it too, and I worked more than full-time and went to the gym and hung out here and there and had friends that I did things with.  But, now it’s sheer torture to just get through a day filled with nothing.  There is no meaning in a life without purpose and to stay alive, whatever that even means, just to live everyday in a body that’s a torture chamber is beyond my comprehension.  And if anyone thinks there’s a meaning in any of this, I’ll let you know right now that there isn’t.

However, I try.  I’ve been trying since 2001 and while I manage to make it through this same routine, or add more fun to it by throwing in the painful sclerals if I go out, doing errands, rushing the routine to get to an appointment, driving a 5-speed with seats that feel like they’re made out of concrete, and on and on, I’m so very tired of it.

I forced myself out tonight, in fact.  It’s been a bad week, month, year, decade, 13 years.  There was yet another shooting around the corner off a street I refer to as The Jungle.  Gun violence hits way too close to home for me and the PTSD I never wrote about gets triggered and everything goes haywire. Then, a guy who stayed at this motel the 1st time I was here came back—fresh from being released from a mental institution, which is where he should have been for life.

Back in late 2010, he was my neighbor and threw me from one side of the hallway to another after I got on him about all his illegal activities and highly annoying behavior in here.  He also destroyed at least 3 rooms in this motel, had a huge Rottweiler at one point that was anything but trained, got his ghetto cousin and mother, who was an old prostitute, a room in here as well, and the general manager could have cared less.  He only left when the rent went up and most of his type of people couldn’t afford to stay, and I left a few weeks later as I’d found a cheaper and seemingly nicer studio down the street which later became a sea of raw sewage, but this guy left owing over $4,000 in back rent and damage.  Well, seeing that the GM has some sort of white guilt and just feels so sorry for this poor, half-black guy and his phony sob story of being a combat veteran which must be part of his delusional disorder, he’s now back and if I could see like I used to, I’d buy the .380 I had 20 years ago because I apparently could have been a sharpshooter I was that good.

But, I digress.  I forced myself out tonight.  I had to do a few errands and thought I’d stop at a relatively inexpensive clothing store and perhaps cheer myself up by buying a new top that wasn’t from the thrift store, and I rarely even do that.  I found a couple of things after a lot of searching because I’m picky and don’t like cheap looking clothing and extra small is not a common size in this town.  The prices were too high for synthetics and cotton blends, another favorite down here, and I sure wasn’t paying for a label at that store, but I headed to the over-lit dressing room, regardless.

And there I was in the mirror and I had my sclerals in.  The old, gaunt-faced skeleton covered in black bruises and aubergine purpura and a venous pattern like a road map all from Ehlers-Danlos syndrome.  Everything looked awful because I looked awful.  I wanted long sleeves to hide the blue veins and hundreds of weird wrinkles stacked on my elbows due to the faulty collagen in my skin.  I wished I could wear my winter gloves to hide the acrogeria on my hands that makes them look like an old lady’s.  I only like V-necks, but all I could see were the bones and veins in my chest and my neck that’s so thin and vein-y it looks like my head is too big and that it’ll snap in half at any moment.  That was enough.  I know what I once looked like.  I remember being attractive and normal and that was stolen from me like everything else.  No wonder someone found my blog by typing “Ehlers-Danlos freaks” into Google.

So, I bought a long sweater with a hood that wasn’t worth $30 bucks—when it’s already warm here and will be 115° soon.  I went to my car, got on the freeway with the cars speeding past me at 90 mph, and cried the whole way back to the motel with the mashugana who just got out of the cuckoo’s nest on the top floor.

I have a joke with the staff here that the only way I’ll ever get out of this motel is in a body bag.  It’s a family legacy: my paternal great-grandfather died of a massive heart attack in his suite at the Biltmore, where he was residing while doing business in another state.  But, at least he died in the Biltmore and not a 2 star motel that now serves as a halfway house for mental patients.

My, what a confusing post.  It’s going backwards and forwards and sideways, rather like how my brain is these days.  It’s no secret that I don’t like blogging.  I already tried to stop once and even wrote a post that I was, but quitting is for failures said my father long ago, and as all I’ve done is fail since getting sick due to my body being some degenerative thing that I’m just stuck in, I forced myself to keep going.  I had my search engine crowd who needed information and then I met bloggers along the way, which I didn’t even know was part of blogging as I’d never really seen a blog until my youngest brother created this very blog for me to document my corneal collagen cross-linking experience—and that I have done.

To tidy up this ridiculously long and rambling post, which happens to coincide with the one year anniversary of the death of someone I cared about very much and is just adding to my depressed state, I am bidding adieu to my blog for now.  I may be back in 2 weeks and I may never be back, but I need a huge break from it and from WordPress and this unsettling feeling of giving so much of my time to others on here and getting very little in return.  To the very few people who have been a friend on here, I thank you and am sorry I can’t be there for you right now, but I can feel the sand trickling through the hourglass—that old premonition—and need this time to focus on myself and fold my cards if all else fails.

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I’m hoping someone will find this, and I debated on whether to write this post in Spanish or English, but my Spanish isn’t what it once was and so English won out—even though it’s horribly awkward for me to tell this story in English as it occurred in Spanish, but here it goes: a glimpse into the best year of my life and the soul mate that I’ve lost forever.

Once upon a time, I lived in México.  After college and two stays in two cities, I left the States and returned to Puerto Vallarta, locally known as Vallarta, with no plans on ever returning.  That last time is when I really met the best friend I have ever had: Caguamo.  But Caguamo was so much more than a best friend.  His real name was Miguel Ángel Santos Nolasco, but everyone has un apodo, a nickname, in México and my best friend’s meant sea turtle.

The sea turtles of Vallarta.

Caguamo left school in junior high due to problems with a fellow student—I remember he pointed him out to me one day—and I suppose that’s when he headed to the beach to work. During all my time in México, almost all my friends worked on the beach, mainly in the parasailing business that’s so popular with tourists.


The guys who worked on the beach had this ridiculously bad reputation, mainly because they lived an alternate lifestyle, surfed, listened to Reggae, were poor, and possibly drank as much cerveza as every other Mexican, but they were real and had their own view on life that was so different from the other locals I knew.  And so, it was with these guys in both cities I had lived in where I fit in.

Caguamo was even more special and everyone knew him.  I called him El Famoso Caguamo, which was true—he was famous in Vallarta just for being the person he was.  For me, he was more like a soul mate and we had this instant connection the minute I really got to know him in 1998, when we were both in our early 20s, although I was older.

He was one with the sea, hence the nickname, and I couldn’t imagine him anywhere else.  He was kind and caring and didn’t have an enemy in the world.  He was funny and had this spontaneous, high-pitched laugh that usually left me asking him what he was laughing about.  He talked about the most random things and sang me a song about some fictitious person whose father was an imperialist one night. He had supposedly survived smallpox as a child, with the characteristic scars to prove it and no sign of an inoculation on his arm, but it had been eradicated by his birth.  He was deaf in one ear from a wave perforating his ear drum in the Pacific that was never properly treated and if I spoke to him while sitting to his left, he had no clue I was talking to him. He couldn’t sit still for five seconds and neither could I. We’d ramble in Spanish and walk the town all night long and were never bored for a minute.  But most of all, Caguamo was just so easy where I never was.

Compas 001

Caguamo and some friends.

I had a business that I’d about killed myself to open due to the corruption in México, being foreign even if I spoke fluent, unaccented Spanish and passed for Mexican, and because I was female, which is a real rarity.  I was well-known in Vallarta and would walk back and forth from my apartment to my shop with my dog who I’d rescued from the street of a former neighborhood and I knew every store keeper and many people I passed on the street and they knew me.  I’d return in the evening after la siesta and Caguamo would stop by and we’d talk and talk. After I closed up shop, he’d walk to a street called Olas Altas to meet our friends and I’d hike up to my big, studio apartment to take shower number three and get ready for the night, because in México, everything happens after the blazing sun sets.


Olas Altas

My dog and I would take the million steps to get down to Olas Altas and walk over to el puesto de tacos, the taco stand, of my friend Chore.  And there was the entire world: all my friends from the beach and my soul mate, Caguamo. The photo of my friends was taken at that spot.  After getting some cerveza and talking with everyone, Caguamo and I would start walking to el Malecón, the boardwalk, and find more friends to catch up with.  And so it went: walking for hours and talking for hours and stopping by Caimanes, a bar owned at least in part by a European, and petting stray cats or something along those lines.  We’d make our way back to Olas Altas and to the beach known as Playa de los Muertos, the Beach of the Dead, and my dog would run wild on Los Muertos while we wandered down el muelle, the pier, and the best spot in town was all ours.

El Malecón, prior to being demolished and rebuilt after I last visited.

One night, I lost my housing.  Before I got that studio I loved, I was staying temporarily with a girl I’d met from Cleveland who lived with her boyfriend, a local guy I knew but not well. They had a tiny, 1 bedroom apartment on another steep hill and couldn’t sleep in the bedroom due to the noise on the intersection below where kids played fútbol non-stop.  And since I slept like a log before I got sick, I moved right in for a couple hundred bucks a month along with my dog and a stray kitten.  So, there we were: 3 adults, 2 dogs (they had a huge lab), and a crazy kitten I wasn’t thrilled about.  What I didn’t know is that my best American friend who I liked so much was in an extremely controlling relationship to say the least and when I was deemed a threat, I got thrown out by her boyfriend while she just sat in a chair and stared at the floor. I heard they got married and he went back to the States with her.  She was a great friend and I so hated hearing that.

The details are blurry, but I think I made the long trek to Viejo Vallarta, or Old Town, looking for Caguamo on Olas Altas that night and he helped me get as much of my things as I could.  I know he found a friend with a truck the next day and we got the rest of it then.  We were loaded down with bags and boxes and I had my dog on a leash as we made our way down from that neighborhood, a huge hill known as El Cerro, and dropped off what I wouldn’t need in my shop, which was a simple store front secured with several, big padlocks.


El Cerro

It was Semana Santa, Easter week, and the town was full of tourists and I needed to find a motel until I could rent an apartment.  We ran into our friend Michael, a Belgian who had grown up in Vallarta, and he agreed to take my dog for the night as I knew I couldn’t take him to a motel.  I knew my dog would be okay with Michael and he was.  Caguamo and I walked the whole night stopping at every motel and hotel looking for a room, but everyone was booked.  At around 5:00 in the morning, I found a room at a tiny motel and stayed for a day until I found an apartment building adjacent to that great studio, both owned by a foreign doctor I knew who told me that I could keep my dog, but my cat had to go, so Caguamo took her.  We never really bonded, so it wasn’t a huge deal.

I never forgot that night because it exemplified the most important thing to me: having someone’s back—such a rare trait to find in another human being.  Caguamo would have helped me whether I had asked him or not.  He used to stay with me at night when I lived in the apartment building in a studio smaller than this motel room I reside in.  We slept in the same bed because that’s just what we did.  There were lots of chismosos, gossips, in that town and the rumors swirled about this odd couple—this Frida Kahlo and Diego Rivera without the grand love affair—but only Caguamo and I know the truth about being soul mates and how that really has no true label or boundaries.  It simply transcends friendship and romantic relationships.

Frida and Diego

Before that studio in the lot next door became available, the doctor became aware that a guy from the beach was staying with me at night and she told me directly that she didn’t want those types living on her property.  I thought that was ridiculous, but couldn’t risk being homeless again, so Caguamo could only hang out after that and I soon got the big studio with the lime tree right outside my door, where someone further up the hill blared Celine Dion’s “My Heart Will Go On” from The Titanic all day and night.

Chaim 001

My studio and my dog, who I usually called Stinky.

After nearly a year of hard work and being open for less than 6 months, I couldn’t make my business work.  I’d lost too much money by not getting open by the high season due to customs holding up my supplies and the bribes were just adding to the fact that enough revenue wasn’t coming in and everyone was hurting due to El Niño, which had caused a rare hurricane that year that I somehow survived, but had kept tourism low.  I told the landlord of my shop that I’d have to vacate, and up went the se renta sign.

Mi Local 001

My business in Viejo Vallarta selling raspados hawaiianos, or Hawaiian shave ice.

I didn’t want to go back to Seattle, but I had no choice as the ability to make a living in a developing country is slim to none, which is why all my friends lived with their families still. I sold what I could and packed up the rest as it wasn’t a huge deal to throw a giant suitcase and 4 huge boxes onto an airplane back then, as long as you had enough muscle to get it all out of baggage claim twice and through customs once. I knew another expat from Seattle named Freddie who drove back north before summer each year.  He agreed to take the rest of my things, like that hand-painted sign above my shop that disappeared in one of my many moves, in his covered truck with Washington plates and we made arrangements to meet when he returned, all in exchange for a mere $50.00.

My friend Chore’s helper at the taco stand said he and his family would take my dog because I had to go back to my mother’s and step-father’s and they wouldn’t let me bring him. It broke my heart as I’d taken this stray who was starving and covered with ticks, fleas, and lice and given him life, even if I could never tame him.  I had named him Chaim, life in Hebrew, because of his story.  I remember handing his leash to Chore who assured me his friend would get him that evening, but I don’t think he ever did because when I returned on vacation for Y2K, I came out of the hotel the night I landed and saw my dog standing on Olas Altas, the street I was staying on in front of the Los Muertos, and I turned and quickly walked the other direction before he saw me or I bursted into tears.  The dogs on the beach are clean and taken care of by the tourists, but it felt like someone had stuck a knife in my heart.

It was all over for me anyway.  I’ve said for years that my fate was sealed when they shut the door on that Alaska Airlines 737 and I remember the long ride to the airport in Freddie’s truck while he air drummed to Roxette blasting though the speakers and I tried to not laugh, but I really just wanted to cry.  I had no idea I’d get sick in 3 years and lose my whole life—that these were my last moments.  I wish that plane had skidded off the runway and burst into flames, but up and away it went as I looked out the window and tried to not panic due to my fear of flying until my town and the beach were swallowed up by the big bay and then the Pacific Ocean.

Where I left my soul.

I don’t remember saying goodbye to Caguamo, only to another friend named Badua, but I saw him when I went back for Y2K and a dreadful trip after I’d started to get sick in March of 2002. I was so sick on that vacation that I left early and that was the last time I ever saw Caguamo.  That night, I left him on bad terms.  We were at a new pool hall and he was beyond drunk and that was the only time I didn’t like to be around him and he knew it.  So, I left with an old boyfriend and went to Los Muertos.  Oh, I spent so much time on that beach at night and on el muelle, the pier, that jutted out from the most famous beach in Vallarta where Caguamo worked.

It was a fateful mistake and I went back to my little motel across the street from the beach that had a balcony with huge iron doors that I left open while I slept.  Around 3:00 in the morning, I awoke to someone calling my name but it took awhile to come to.  I finally made it around the bed in the tiny room and to the balcony, but Caguamo was gone.  I called his name but it was too late.  That was on me and he’ll never know I came to the balcony or that I forgave him over something so trivial.  I was sick and the change within me had started and I wasn’t the same person I had once been.

For years and years, I looked for Caguamo online.  I don’t partake in social media unless blogging counts, but hardly anyone even had a phone line down there due to the fee and while internet cafés opened up, he was hardly the type to use a computer, although I saw him use one—with one finger—that last time I was there in 2002.

I get this feeling when someone is gone, and I had that feeling for a long time about Caguamo.  I could never go back to Vallarta due to my health and the horrid humidity that never bothered me before, but he and my town were that tiny candlelight at the end of the seemingly never ending tunnel: that if a cure came in my lifetime, I could return and be with my soul mate in Vallarta where I knew everyone and everyone knew me and I once was happy.  It’s the reason I hardly have any photos: I’m not a photographer and was too busy living life, as I always was before I got sick.

And so, I guess I hadn’t done a Google search for Caguamo for nearly a year until last Saturday.  Suddenly, I got hits, but I read the same caption in Spanish and English and knew Caguamo was dead and I opened the first site and there he was—the photo on the top of this post, even if the date should say April 6, 2013.  I’d know his face even if I couldn’t see at all. This long “no” came out of my mouth and then the tears ran down my face and I didn’t even read the article for an hour and when I did, I wanted to throw up.

I read how Caguamo had been at Playa de los Muertos in a sea kayak, the latest adventure for tourists, when a speed boat crashed into him.  He had severe abdominal injuries from the impact, but the captain of the speedboat managed to get him to el muelle, the pier, and the paramedics worked on him and got him to CMQ, a private hospital I went to for X-rays once, and then the huge nightmare ensued over money.  I don’t know if Caguamo’s life could have been saved in that town even if they had tried, but if I had been there still, I’d have had my credit card for the damn deposit that he needed to even be admitted.  After taking it all in, I just cried for hours and talked to Caguamo in Spanish about what he meant to me, how sorry I was, the injustice of it all, how I loved him and had never forgotten him and never will, and in the end, that I wish he had just died on el muelle, above his beloved Pacific on Playa de los Muertos.

And since I never spoke to Caguamo in English:

Espero que haya un mar en el cielo y que te estés riendo por siempre mí Caguamito.  Nos vemos…


El Muelle on Playa de los Muertos, which was rebuilt after I left.

To read the English article detailing Caguamo’s tragic death and the injustice of being denied emergency medicine in México, click here.

Caguamo en el mar.

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As an American, I’ve known that I was different since I went to public kindergarten and was the only kid who didn’t celebrate Christmas.  Many of the residents of my hometown were of Scandinavian descent in those years, so if you look at class photos from the public school I attended through half of 3rd grade, I’m easy to spot with my dark, curly hair, light-olive skin, and ethnic features among a sea of lily-white towheads.

The kids at that school would pick on me—if not for my ethnicity then for the shape of my eyes, with their prominent lids in comparison to their slanted, lidless ones that I think were referred to as Norwegian folds.  They called me names since I was Jewish and I didn’t understand any of it. I was always a small, thin girl who liked art and books and they were so big and tall and sporty.

I remember that when I had a bad day, I would go home and look for my father.  On a day that I was teased about my eyes a lot, I recall I found my father primping in front of the mirror in the master bathroom—a testament to his vanity.  I told him about what the kids were saying to me at school.  I have my father’s eyes—right down to the unusual color—and he told me, “Actually, our eyes are very attractive,” while he continued to pick out his kinky hair.  I no longer cared about how different my eyes were after that.

However, the slurs got worse and I was sent to a private school halfway through 3rd grade.  Suddenly, there were Chinese kids and Persian kids and Jewish kids, too.  It was a Montessori school, which was a really good fit for an independent-type like me, and my father even entrusted me with the big, tuition check that I was instructed to drop off at the principal’s office.

I remember the Persian girls at my school, and there weren’t any boys for some reason.  They had come in ’79 with their families, fleeing for their lives after the coup because they had connections to the Shah.  I knew something had happened in Iran; I recall watching the blindfolded, American hostages and the huge banners of the Ayatollah on T.V. and thought Iran was the scariest country in the world, but my Persian friends were so American and they looked somewhat like my father and me.  They had different names, but they didn’t have accents and I had no idea they spoke Farsi, but they must have.  So, I never have really had a problem with Persians in the U.S., despite what people probably think due to Iran’s intolerable stance towards Israel.  In the end, this is America, and I’ve always felt more comfortable around other minorities.

After a lifetime of passing for so many ethnicities: Italian, Arab, half-black, Latina, Spanish, Greek, and yes, Persian, I found myself at my new, Persian kabob restaurant this week with the masses who don’t celebrate Christmas, as Christmas has somehow become a week-long holiday nowadays.  A party had been booked and the small, casual restaurant was packed full of Persians.  Most I have known aren’t religious, but all the women had their hair covered. They were dressed a bit more like Muslim-Arabs, but spoke Farsi.

I found this new spot a couple of weeks ago and after chatting with the owner, I learned he came to my city in the desert in the ’70s before the coup.  After I explained my food allergies, we haggled over a price for 3 orders of beef shish as they say—a shortened version of shish kabob.  It’s the only protein I get, so I’m a bit particular.  I didn’t want salad with mystery dressing, rice (mine is better), grilled onions and tomatoes, sumac, or secret sauce full of spices, all of which leaves me scratching my skin open for days due to some bizarre complication from Ehlers-Danlos syndrome.

However, when I made my way to the counter to order this time, a woman with very curly hair like mine was working, but it was naturally blonde.  She had an accent, but I wasn’t sure where she was from with her hair color and light skin.  She asked me in English if I was with the party and I said that I wasn’t.  She looked like an Israeli to me or possibly a Persian Jew since she worked at a Persian restaurant, but I had no time to ask since she was trying to charge me full price for only ordering the beef shish.  I was back to explaining my special order and haggling over the price, so I showed her my last receipt that I’d saved in the event the owner wasn’t in and then I saw him working in the kitchen and got a smile and a nod and all was settled.  I had my sclerals in since I had to drive and while I was waiting after I ordered, something amusing happened that represents my experience as a minority in America.

I was leaning against a curved, deli case at the side of the restaurant stretching out my achy back and I could see all the patrons who were gathered for this party.  Everyone had light-olive skin and dark hair, or at least the ones who didn’t cover their hair.  They had facial features that were not so different from mine and while they didn’t look like my people exactly and I didn’t see my eyes anywhere, there was a familiarity as there often is.  Yes, my sclerals work quite well at certain distances in dim lighting, even if my eyes hurt so badly I want to rip them out of the sockets.

I remembered how a former friend’s mother had once told me to become a spy because I could pass for so many ethnicities. I wondered if this huge group of people—all Muslims of Iranian descent—knew that I was different like all those kids back home did.  Was my Jewishness blinding them?  I felt at home with so many people who shared a similar look and regardless, the huge flock of Persians in Los Angeles ask each other if they’re Muslim or Jewish out of curiosity when they meet, so I wondered.  Would I pass for a Persian like I had so many times before?  Did I fit in, even if I was different?

Suddenly, an older woman with a headscarf looked at me a few times and then got up from the table and approached me.  I’m petite, but I seemed to tower over her.  She was very close to me, such a taboo in America, and spoke in Farsi.  I had a feeling she wanted to know where the bathroom was, but I don’t know any Farsi at all—only some words in Arabic. I told her apologetically, “Only English,” and she repeated a heavily accented, “English,” and we smiled and she found the woman with the blonde, curly hair and big eyes like mine and off to the bathroom she went.  I guess I should have gone with my gut and just pointed, but she quelled my curiosity: I passed.

Finally, my take-out order of beef shish was ready and the blonde woman rushed it over to me, apologizing for the wait. I asked her if she was Persian and she said that she was. She asked me if I was and I told her that I was Jewish, but people often think I’m Persian.  I said that I thought she was Israeli, but apparently not.  Then, she wished me a Merry Christmas—the two words I’ve heard non-stop the whole month—but she quickly corrected herself.  I gave her a big smile because for once, I didn’t have to do it myself.

I’ve never been much of a patriot, but the one thing I love about the States is that on the most boring of weeks for non-Christians, so many minorities can come together and find commonality.  At the end of the day, we all want to fit in one way or another in this country called America.

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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.

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.).

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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After 11 months, it’s time to give blogging a rest.  I need to take care of my cat who has cancer and myself—as I finally came to terms with the fact that I had turned blogging into a full-time job, which is typical of a workaholic who can no longer work.  I stared this blog right before my cross-linking surgery (CXL) for keratoconus with the aid of my brother from afar and only had the intention of posting on my experience with CXL, as I couldn’t find any patient-perspective information online.  Then, I researched a co-morbid condition, saw a geneticist, and was correctly diagnosed with Ehlers-Danlos syndrome after 11 years of illness, and thus the blog continued.

Personally, I don’t find writing posts cathartic or a form of self-expression for the most part like so many other bloggers.  I really didn’t even know much about blogging before my brother created a blog for me.  I wrote in my About section nearly a year ago that I am a scholarly writer by nature and a horrible perfectionist, and writing posts seems more like work to me, and I’m on disability due to my inability to work from Ehlers-Danlos syndrome.  Blogging has actually made my pain worse, yet I continued to write posts that were so carefully thought-out with over 1,500 word counts.  It may sound like a small feat, but for me, it would take a week to put a post together and hours upon hours of writing and editing.

However, what I finally found in my little life of solitude were some great friends on WordPress and they know who they are: the ones who always commented on my posts (and vice versa, of course) and have been there when no one else has since recently posting on my blog that my beloved cat, Moush Moush, has cancer again after 4 years in remission with an excellent prognosis due to an amputation.  Moush Moush’s story, which is really our story, can be found in this very long post.

As I can’t find any better way to manage blogging and I refuse to fold my cards due to the positive aspect of having friends on WordPress, I plan to stop posting indefinitely and continue to comment—or chat—with my friends on here.  I hope the day will come when I can figure out how to just write a short post and call it a day, but I think I would need a lobotomy for that.  I would like to again express my deepest gratitude to my true friends on WordPress, who are really the only friends I have. Living with a debilitating disease and losing a lot of vision has left me stuck in a motel room nearly 24/7, so this is my lifeline and I miss talking with people and sharing information and all that comes with finding people in this world dealing with the same trials and tribulations.  It makes me feel less alone and I hope my friends feel the same.

While I have been in constant contact with some, not everyone has had an update on Moush Moush, and I do appreciate everyone who finds my blog through search engines and hope this will be of some help to the cat-owner community, as well.

After seeing Moush Moush’s wonderful oncologist at the specialty center who dealt with her primary cancer—a myxosarcoma deep in her shoulder joint 4 years ago—it is suspected that Moush Moush actually has a type of vaccine-associated sarcoma (VAS) from when she was vaccinated in her scruff in the early 2000s and this created an area predisposed to developing these cancers, akin to a human having sunburns in youth and then developing skin cancer years later.  This was a concern 4 years ago, but the shoulder location was atypical.  Her oncologist feels this is possibly a new cancer and not a recurrence, even though it is in the area where her arm was, as the chance of recurrence after an amputation with wide, clean margins 4 years out is maybe 1%.

Moush Moush had a CT scan a few days ago which revealed 2 superficial tumors, one which was biopsied a couple weeks ago and one which just popped up.  The cancer is superficial and there is no sign of metastatic disease in her lungs or elsewhere.  This seems like good news.

However, due to the fact that the cancer is on her body where most of her connective tissue was removed during the amputation, it would be impossible to get the 3 cm margins needed without cutting into her body wall and ribs, which I wouldn’t do and her doctor agreed, but she was scheduled for less invasive surgery as I trust her oncologist’s advice. After the surgery was completed Friday afternoon, the surgeon called and said she did have some muscle left over her ribs after the amputation and he was able to remove some tissue under the cancer, as well as laterally, and he performed a scar revision on her recent biopsy, as that area would also be full of microscopic cancer cells.

Moush Moush did fine in surgery and in recovery and I was able to get her around 24 hours later, which was Saturday. She is 1/4 bald and has a long, arc-sharped incision going from her lower neck near her spinal column clear to the middle of her chest, which is almost a reversal of her amputation scar, which I can’t see.  I must say I wasn’t expecting that huge incision, but she is acting fine and is on a strong narcotic for pain, which gives her too much energy for her lounge-y self and then she passes out into a deep sleep, which is best as I’m supposed to limit her activity, which normally isn’t an issue.

We are waiting on the histopathology report to see what the margins show and to get a definitive diagnosis, although any type of soft-tissue sarcoma on the body, not just myxosarcoma, is essentially the same as far as surgery and prognosis.  If it is VAS, wide margins aren’t exactly curative, but I am trying to hold on to hope.  Looking at that incision, it sure seems like she had radical surgery, but I know she didn’t. Moush Moush will return to the oncologist in 9 days to have her stitches removed and hopefully start a targeted, cancer drug taken at home that was not available until 4 years ago and is now being off-labeled in cats.  It will be hit or miss if it works to keep the cancer in check, so I’m having to bet all my money on Palladia, this promising new drug, even if the efficacy rate is less than 50%.  There is little information on use in cats, but Palladia is being used on vaccine-associated sarcomas.  For basic information on Palladia, click this link.

I have primarily been updating on my friends’ blogs, but if you have a pet affected by cancer, please check back as I will attempt to update this post if I have good news, which may take awhile to determine, and I presume information will be in my comments, along with lots of unrelated chatter.

To end on a positive note, this post only has a 1,199 word count.

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Will my eyes ever have tears again?  Does anyone know the agony of having eyes that are as dry as a bone?  Am I the only one who has had this adverse side-effect from epi-off collagen cross-linking (CXL)?  Why can’t I find any answers, even from my doctor nearly 4 months post-surgery? Will I spend my life with onions taped under my eyes to get them to water?

Let me preface this by saying that I had a dry eye problem before I developed keratoconus.  Six years ago my eyes became very dry and I was having symptoms such as burning, irritation, pain, infections, my eyes being “glued” together in the morning, and whatnot.  I ultimately was referred to my current ophthalmologist 5 years ago and after a thorough exam, he told me I had severe meibomitis and it could lead to corneal ulcers if we didn’t get it under control. I had what?

Along the margin of the lids there are a series of small sebaceous glands called the meibomian glands. They create and distribute an oily substance called lipids. Meibomian gland secretions help keep the eye moist and protect the tear film from evaporation. Upon blinking the upper lid comes down presses on the oil and pulls a sheet of oil upwards coating the tear layer beneath to keep it from evaporating. Meibomitis refers to dysfunction and inflammation of these glands. Oil production by the glands decreases and the oils that are produced become thicker (looking like toothpaste). The reduction in the quantity and quality of the oily layer causes the tears to evaporate more rapidly and this leads to symptoms of dryness burning and irritation especially upon awakening.

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So, for the past 5 years I was on one protocol and drug after the next to try to control the meibomitis.  Nothing really helped and I just dealt with it.  Since meibomitis affects the lipid, or oil, layer of the tears (see the diagram above), it made my tears too watery, which is very different from my current complaint. As a result, I had “dry eyes” that watered to the point that tears ran down my face.  This is because I essentially had no lipid layer (oil) in my tear film to give it viscosity.  How ironic and irritating, but boy do watery eyes sound good right now.

Somewhere between dealing with the meibomitis and the freshly diagnosed keratoconus, a new ophthalmologist started practicing at my clinic.  Due to my upcoming CXL last September, I decided to make my doctor happy and get a new treatment for meibomitis called IPL (intense pulse light), which is normally used for dermatological conditions.  This new doctor was going to be doing the IPL procedures and I booked an appointment, even though it’s not covered by insurance.

This is where 2 brains are better than 1.  He disagreed with every treatment my regular doctor was doing since I also have rosacea and it had spread to my eyes.  Ocular rosacea can cause meibomitis and doing things like putting hot compresses on your eyes twice daily makes any type of rosacea worse it seems.  IPLs were the way to go.  Here’s how this fascinating, yet rather painful and nasty treatment works.

MGD [meibomitis] treatments with IPL equipment select a narrow band of light wavelengths (500-800 nm) to produce heat on the skin of the eyelids. The minuscule blood vessels directly under the epidermis take in the light and as their temperature rises, the congealed secretions of the meibomian glands begin to melt and the glands open up. The doctor then applies some pressure on the glands to remove all the troublesome secretions. The heat also drives out skin and eyelid microbes, such as parasites and bacteria that can exacerbate MGD [meibomitis]. If you think of the time-tested warm compress, you’ll find the IPL device is essentially its high-tech version.

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The new doctor gave me my first IPL treatment 1 month before my CXL surgery.  He thought I would be a great candidate for IPL due to having ocular rosacea, fair skin, and dark hair.  I thought I had won the jackpot for once. Normally, results aren’t noticed after the 1st treatment, but I did notice some improvement in my tear quality.  Oh, I was so excited!  Then I had the CXL and the water layer of my tears disappeared.  I’m also having a very slow recovery, which I presume is due to poor wound healing related to Ehlers-Danlos syndrome, but why is no one familiar with this problem?  Am I really the only one?

Since my surgery, I’ve had 2 more IPLs with more on the way, all 4 tear ducts plugged (already had 2 plugged), used every artificial tear known to man, had a chronic rash under my eyes from the aforementioned drops spilling out of my plugged up eyes, and gone through at least 35 tubes of eye ointment and gel, which is what I’ve resorted to in order to keep my eyes moist.  It looks great having all this goop in your eyes, by the way.  Now my doctor has me on Restasis® drops, which I had resisted for 5 years.  The active ingredient is cyclosporine.

The immunosuppressive effect of ciclosporin [cyclosporine] was discovered on 31 January 1972.  In addition to transplants, ciclosporin [cyclosporine] is also used in psoriasis…and, infrequently, in rheumatoid arthritis and related diseases, although it is only used in severe cases. It is commonly prescribed in the US as an ophthalmic emulsion for the treatment of dry eyes.

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From the manufacturer:

RESTASIS® Ophthalmic Emulsion is a prescription medicine that helps increase your eyes’ natural ability to produce tears, which may be reduced by inflammation due to Chronic Dry Eye.

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It usually takes 3-6 months to even see if it works and is not cheap, even with insurance.  Due to side-effects from Restasis®, my eyes are red and irritated, full of broken blood vessels, and burn all the time.  I’ve been on it for 1 month with no results and after the continuing nightmare of my hair falling out due to the ocular steroids post-CXL, I’m wondering what Restasis® is doing to my body?

One benefit, unless it’s my imagination, is that I can eat spinach again.  I normally would scratch myself silly after eating even a leaf of spinach.  Is it a miracle cure for my plethora of food allergies?  Speaking of food, I tend to eat a Mediterranean diet and am wondering if I can just ditch Western medicine, sterilize my 5 star olive oil, and pour it directly into my eyes?

Please don’t try this at home.

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