Bilateral Epi-Off Collagen Cross-Linking Failed

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I never wanted to write this post, but feel I must.  I haven’t blogged in nearly 5 years, but have chatted with many who have found my site looking for information.  Aren’t we all?

In short, I had bilateral, epi-off collagen cross-linking (CXL) surgery in 2012 in Los Angeles via a clinical trial that I paid a fortune for.  I have long-term side effects from CXL such as severe dry eye, corneal neuralgia (nerve pain), light sensitivity, and corneal capacities.  I saw the best of the best.  But, I also learned from that keratoconus specialist that I ought to see a geneticist where I finally got the correct diagnosis for my chronic pain and health problems: Ehlers-Danlos syndrome, classical type or the former type II.  I believe the latter is what has caused so many issues with my CXL surgery and possibly its ultimate failure, but nobody knows and my doctors have various theories.

In 2016, 4 years post-CXL, I noticed I had very poor vision in my left eye without my scleral lens in.  This had been the eye with the best correction via a lens and no longer was.  It was my better eye pre-CXL as it was affected last and it completely flattened after CXL and was actually too flat and that and the central scar from CXL were what made it necessary for me to wear a lens in it to see.   In essence, this eye no longer had any trace of keratoconus (KC) and was the last of my eyes I was worried about.  I wasn’t getting the best follow-up care locally as the years went on, but found a new optometrist ASAP when I noticed the diminished vision.  She did a topography that showed major steepening in my left eye and I saw a new corneal specialist after that and he confirmed that my KC had indeed come back and was progressing rapidly.  I wanted to just hang my head after all I’d been through.  He was stumped and told me to see my KC specialist/CXL surgeon in Los Angeles.  It is very hard for me to get a ride, but I did and my doctor there was just as confused and suggested not wearing my scleral lens for a few months in the event it was distorting my entire eyeball due to having Ehlers-Danlos, which causes me to have stretchy tissue and weak collagen and a million other issues (the thought was the lens could be squeezing the stretchy tissue in my eye and causing my cornea to cone which sounds very odd).  I followed his orders and drove all winter with no lens on an eye with advanced KC and have no idea how I didn’t get in an accident at night with the fireworks show going on in my left eye while trying to focus out of my right eye via my scleral lens.  Neither eye was ever 20/20 with lenses, either.

My left eye seemed to stabilize, however, and I thought I was out of the woods and got a new pair of scleral lenses by a fabulous, local lens fitter (optometrist) I stumbled across.  He noticed the acquired strabismus I had in both eyes from KC and it was very bad in my now legally-blind left eye.  The strabismus did go away with good lenses in, even if I didn’t have perfect vision (phew).  He also realized I had a 5th nerve palsy, likely from Ehlers-Danlos, which also causes my left eye to mildly turn down and to the left, although who knows how far to the left when I look like Biggie Smalls from the loss of vision.  Even better, he told me I always had intermittent strabismus (100% and Ehlers-Danlos thing) after I told him I spent my pre-KC days watching TV sideways and that my vision would get very messed up when I got tired and spaced out.  I told him I always thought I was crossing my eyes, but as I have exotropia, which is the opposite, my eye or eyes were really floating tot the sides.  I really hope I didn’t ever do that in public, but I did get a lot of comments about that sideways TV watching for over 30 years.  He was even able to make me a pair of glasses for nearsightedness and astigmatism with prism (for strabismus) that helped me see a little better while not wearing my lenses, even if mainly out of my better eye.  They were very off at first due to my high level of irregular astigmatism, hence needing to wear scleral lenses, but I got used to them within a month and they helped a bit.  The lens for the left eye was thicker than the frame and I actually cried when I first saw them as I had near 20/20 vision until this debacle started in my late 30s and was already so sick and now the KC was more than the icing on the cake as the visual image of the glasses through my scleral lenses screamed disabled at me.

Yet, I had finally found a great doctor here and things had stabilized and I was seeing better, albeit with painful eyes, and that was a positive, despite my emotional breakdown after seeing those glasses that didn’t even allow me to leave home with them on.  I should have held back my tears.  I could still use my adapted laptop, text on my phone on the largest font, read larger print on paper, take notes while on the phone, and watch TV and read the ticker tape–even if it was far from HD quality.  After all, I was the one who had very wonky vision when I started this blog, but could read 20/40 out of each eye post-CXL without lenses (I still question that as I couldn’t drive to save my life until I got lenses).  This was all about to change.

In 2017, once again in the summer, my right eye could no longer read the TV.  I thought it was from an eye drop I was using, but I stopped it and I still couldn’t read the TV.  My vision seemed worse all around, but it was a mild progression if any.  I made an appointment with my wonderful lens fitter and got the bad news that this eye appeared to be progressing based on some tests he did, but my cornea wasn’t any steeper so he said I needed a test from my corneal specialist as he suspected something else was going on.  My corneal specialist confirmed the progression of keratoconus in my right eye and while my left eye was still stable over 6 months later, it had thinned a lot when it started to go again and the right eye was now doing the same.  My corneas were just over 400 microns for my CXL surgery in 2012, but were now in the 200s and 300s.  Additionally, my right eye was actually thinning from the back, so posteriorly, as my lens fitter had suspected.  The topographies of my right eye are rather worthless, as a result.

I was closely monitored again and things stabilized for a few months.  In the fall of 2017, the vision in my right eye became poor and I could no longer function without lenses while home, not that I actually have a home, and as someone who produces no tears and is lens intolerant, this was the worst I could imagine as I functioned lens-free at home for over 5 years.  I actually wrote every past post on this blog without lenses in and with eyes coated in ocular ointment due to the severe dryness.  Now I couldn’t see my phone, my laptop, the TV, or much of anything else.  I clung to my ugly glasses hoping to see a tiny bit better and have been frustrated beyond belief as I was already disabled and can no longer live a normal, full life like others and am home in the latest motel for hours or days at a time in my ghost-y world of white light and faded shapes and colors during the hours before I shower and force my lenses in.

I did get yet another pair of sclerals in February of 2018 and had the best vision I have had with them via my great optometrist.  He saw me again in the early summer and I read 20/25 in both eyes still (I think that was a stretch and I took my time and had a lot of guesses).  I had moved out of a moldy condo in November of 2017 and he thought that my horrible allergies there had possibly set off the KC progression and now that I was back in an overpriced (post-recession) motel, maybe things had settled.  I had seen my corneal specialist in early 2018 and all seemed stable so he told me to see him in 6 months.  I’ve had chronic sinusitis for 3 years from that moldy condo and was healing from failed sinus surgery and dealing with the never ending infection.  I was trying to focus on that, my Ehlers-Danlos issues, my dwindling bank account, my loss of housing again, and my attempt at volunteering again so I had other fish to fry.  Little did I know that once again, the crap was about to hit the fan.

I had noticed the vision in my left eye was non-existent without a lens and diminished with my scleral lens in come July of this year (2018).  I do my makeup via a 20x magnifying mirror and also saw the my tear duct plug had popped out of my left eye and when that happened in my right, my vision got much worse so I presumed that was the issue.  My optometrist wasn’t in but I saw his colleague for a new plug and this time, my vision didn’t clear up right away when I reread the eye chart.  The doctor told me it might take a few days to settle, but I was nervous.  The vision never improved and I told my corneal specialist when I saw him for my 6-month follow up last month in August, just a month after noticing the huge change.  My topography didn’t seem to register (maybe the tech wasn’t the best), but like my right eye, the left is now progressing from the back of my cornea.  The black hole (area of extreme thinness) on the pachymetry for my left eye is much worse and in just 6 months, has thinned another 80 microns or so.  My doctor spent more time looking at my cornea via the slit lamp exam than ever before.  He told me the central scar had gotten worse.  As that eye has been staged advanced since 2016, it also has Vogt’s striae and a Fleisher’s ring.  Despite his saying that everything that can go wrong with a transplant will back in 2016, he now told me the time had come to do a transplant in my left eye.  These were the words I never thought I would hear.

While he’s a younger doctor who trained at UCLA (Jules Stein) and so on, he only does PK (full thickness) transplants which he feels give the best vision post-op.  I want DALK (partial thickness) as I heal terribly and it’s a speedier recovery.  I also have absolutely no help locally, so I need to be able to drive even if via 1 eye and be back in a lens ASAP and I know that can be over 6 months in someone who heals normally.  The mere thought of bad post-op vision and having the world see my cocked, Biggie Smalls eye makes me want to cringe and that’s if things go relatively well, as in the transplant doesn’t fail or reject.  I would need to get to Los Angeles for DALK and no one from my oh-so-helpful family in California is willing to drive me.  I also know how terribly painful corneal surgery is from CXL and while some do fine with transplants, I don’t think I will get lucky based on my CXL experience and I can’t take narcotics so the thought of traveling out-of-state with horrendous pain and light sensitivity is giving me pause.

This is where I am today.  I haven’t scheduled surgery yet and am waiting for my optometrist to go to a big eye conference this month to seek out a doctor who has knowingly done a transplant on someone with keratoconus and Ehlers-Danlos syndrome to get their take.  I have no choice as I’m at risk for corneal hydrops due to the thinness which is now well below 200 microns.  The lack of any help post-op and all that can go wrong mainly due to my Ehlers-Danlos have made me want a Valium drip 24/7.  I don’t know if my KC came back after several years of dormancy due to having Ehlers-Danlos, severe environmental allergies from the moldy condo, from the never ending sinus infection and antibiotics that have taken a huge toll on my body, a looming diagnosis of primary immunodeficiency disease which would explain the latter, or if I am just one of the roughly 30% of people who don’t get lasting results from epi-off CXL as the latest and longer-term studies now suggest, per my doctor and what I’ve read in studies, as well.  I also wonder if anyone in that roughly 30% have any of the above.

I still recommend epi-off CXL as a first line of defense for those with mild-to-moderate progressive keratoconus as no one has heard of or written about the long-term side effects I got from CXL and I still feel it is safe and largely effective.  However, as hindsight is 20/20 (yes, a pun), I would rather not have painful, bone-dry eyes and excruciating corneal neuralgia and I’d really like that kidney I had to sell for bilateral CXL back (that’s a sad joke and illegal in the US).

The only thing that hasn’t changed much since I started and stopped posting on this blog is that my posts are still around 2000 words long.  Sigh.

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PREMONITIONS & REALITIES

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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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18 MONTHS AFTER CXL & THE MONKEYS SCRATCHING THEIR HEADS

 

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

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

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

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

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

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

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

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

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

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WHY ARE YOU A DOCTOR?

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Recently, I had my follow-up visit with the PM&R doctor who agreed to see me after I was diagnosed with Ehlers-Danlos syndrome (EDS), classical type.  I had seen him a couple times prior to that and was originally his patient for my misdiagnosis.  PM&Rs are physical medicine and rehabilitation specialists, and I personally feel they can be a good fit for EDS patients as they specialize in people with chronic, debilitating diseases and conditions.

I originally saw my doctor before my collagen cross-linking surgery and long before I had my scleral contacts that I’m forced to wear when I have to go out and I literally couldn’t see his face or make eye contact with him.  However, it wasn’t solely due to my vision—it was also due to something I didn’t pick up on for awhile.  You see, my doctor has some type of social phobia and does things like stand as far across the room from me as possible, tear through my file like a mad scientist while not really looking for anything, avoid eye contact with me at all costs, and the most bizarre: putting his head down on the counter when we were in a very small room and he couldn’t escape my gaze or me.  So, the faceless doctor image could also be replaced by a faceless patient I suppose, or an image of this patient talking to the wall to not upset the doctor.

Now, his behavior makes any type of interaction rather difficult, but I’m not one to make fun of anyone with a phobia—I just think they should choose their profession better.  For example, as I tend to have panic attacks on airplanes and yes, I saw the news about the triple-7 that is somewhere at the bottom of the South China Sea southern Indian Ocean, I didn’t become a pilot. Perhaps, I would have been an excellent pilot as I’m very systematic and prefer to be in charge, but darn it, I just can’t get over that free fall back to earth.  So, I went into the non-profit sector instead.  I have many reasons to wonder why this man became a doctor, so here’s a rundown of how my appointment goes to justify my thoughts, and mind you that I have to drive about 45 minutes to get to his office with my less-than-stellar vision.

  • I arrive and have to fill out the same form that doesn’t really address any of my issues and is too hard to see and best of all, my doctor never even looks at it.

  • The medical assistant calls me back and then I get to sit and wait in a chair that kills my body in a boring exam room for up to 45 minutes, when I’d be more comfortable in the waiting room with padded chairs and a big plasma TV I can actually see.  Per the wait, I was going to be 5 minutes late once due to an accident and called from my cell (these are things I should not do with my vision) and my appointment was cancelled and then I was slapped with a huge, no-show fee that didn’t go away until I called someone I knew in the office who took it off my bill.

  • The doctor finally comes into the exam room and asks how I am.  How should I respond when I already wrote “the same” on the form?  I’m also in more pain and beyond irritated by that point.  So, I tell him that I’m hanging in there as he doesn’t really care what I say.

  • He doesn’t ask me about my EDS or how it affects me physically.  He doesn’t offer to get involved with my physical therapy to make it more effective, and he writes my scripts for it.  He doesn’t ask how my EDS affects me emotionally, even though I circled on the form that my anxiety has been worse since I saw him last.  I really question how much he knows about EDS, even though he said he was familiar with it before I saw the geneticist a little over a year ago.  He tends to speak in a hushed tone and when a medical student was with him once, I vaguely heard him say that people with EDS are tall. Sure, a subset of people with EDS have a Marfanoid habitus, but I’m not one of them—that was my maternal grandfather.

  • I basically try to think of something to say to make my appointment worthwhile, but what’s the point when you don’t have a doctor who cares or is interested?  I’ve even asked the one medical assistant I like if he’d rather not have an EDS patient since I formerly saw his nurse and now he’s stuck with me, but she said that’s not the case. So, what is the case?  And if you’re wondering why I don’t just go elsewhere, trust me that I’ve been everywhere in this town and this is as good as it gets.

  • I have my few prescriptions written and there’s a problem with them every time, but as my scleral lenses don’t fully correct my vision and other factors affect my near vision, I tend to need help reading them.  This time, he wrote the dosage of one of my drugs wrong, so I would have run out early.  His handwriting is awful even for a doctor and the assistant wasn’t sure what it said for a couple minutes, but then she rewrote it and had him sign it and he asked her what the problem was and she lied and said that the pharmacy would have trouble reading his handwriting which really bothered me, but I decided it was best to stay quiet about his mistake.  On another prescription, the medication was crossed out and then rewritten, so I hope that won’t raise any flags.

  • And that was it!  Nearly an hour of driving, who knows how long spent waiting to see him, five minutes or less accomplishing nothing in the exam room, and 15 minutes of wasted time and frustration dealing with his inability to write prescriptions.  Then, I had to check out with the rude girl who feels so important behind her counter—the same girl who had informed me on the phone that my fabulous nurse had left the practice and slapped me with the no-show fee in the saga that I wrote about in this post.

So, why is he a doctor—especially for patients like me?  I could easily walk into an exam room, naturally not look at people without my lenses in, not offer much help—although I feel I know much more than this one does—and then write poorly written scripts due to my vision just like him.  He’s not much older than I am so the burn-out hasn’t started yet, not that I like that excuse because I knew some great, older doctors back home.  And if you have a social phobia, then go into research, because those of us with chronic, life-altering diseases that will only get worse need empathetic doctors who actually care and can look us in the eye and put their hands on us in order to feel a pulled trapezius muscle, or tendinosis in a rotator cuff, or subluxated shoulder joints, or any of the other things my physical therapist does on a regular basis and all the doctors missed from day one.

If my PT could write my scripts and order the imaging I have to pull teeth to get, I’d just have her be my doctor because it takes a lot more than having the initials M.D. after your name to actually be one.  No one deserves such sub par care when they’re sick and in pain and the worst thing is that I could be writing some semblance of this post about the majority of the doctors that I have and the hundred I saw before them.

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I JUST WANT MY PAGER BACK

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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MY LITTLE ACCIDENT

Accident

This was my forehead after I spent 8 hours applying a compress to stop the bleeding.  I probably needed stitches, but I couldn’t afford to go to the ER so in the middle of the night, I super glued my forehead together, which is actually better than sutures for my fragile skin.  I heard this method of closing wounds was used during the Vietnam War, so good enough for me.  In fact, I can source that fact right here, although having training as a medic would’ve been helpful at the time.

I wasn’t in a car accident; I was trying to grab my cat’s litter box from under the built-in desk, but due to being visually impaired from keratoconus, I slammed my head into the sharp, laminate edge of the counter top and because my defective collagen makes my skin so weak from Classical Ehlers-Danlos syndrome (CEDS), I split my forehead in half, or however long that gash is.

Now, in the grand scheme of all my problems: living with severe, chronic pain, having a body falling to pieces, dealing with major visual distortion which makes it hard to tell how far away a counter top is, surviving off 6 foods, being semi-homeless and on and on, hitting my head shouldn’t be a big deal, right?  Well, it really is and here are a few reasons why.

People with CEDS, a genetic connective tissue disorder, have defective collagen V, which causes poor wound healing and wide, atrophic scars—also known as cigarette-paper scars—along with 1 million other things.  I think I hit my head 2 weeks ago or so and the scar is looking very purple and keloid-like right now, but if history proves correct, it will keep widening and then the center will turn into thin, papyrus-looking skin—right across the middle of my freaking forehead!

But, that is just part of my little accident.  I apparently hit my head so hard that my brain literally shook.  Yes, it took me a few days to realize I’d sustained a concussion from this thing once I could get back online and Google my symptoms.

At first, my forehead just felt like someone was driving a stake through it, so I went through every bag of frozen veggies in the freezer icing my head.  Then, I got v-e-r-y sleepy and just had to lay down and I fell asleep without Ambien CR for the first time in over 8 years and I kept sleeping like that: in 3 to 4 hour bursts throughout the day and night.

Now, while all this was going on I started to get really nauseous, which isn’t normal unless my pain gets above a level 9 on the Richter scale.  And even worse, the lights were driving me absolutely insane and I got double vision, so instead of seeing 6 of everything like normal, I saw 12. Therefore, I just stayed in this dark, distorted cave in my sleepy stupor with frozen veggies on my head and prayed I wouldn’t throw up, which I luckily didn’t.

Now, how many days was I in the cave?  I have no damn idea. I don’t remember much of anything, other than trying to text someone and not being able to do that at all, not that I can text well in general due to my vision.  I know I posted a draft that I had saved on my blog a few days out.  I also remember contacting my mother, but I’m not sure if that was by phone or e-mail.  I know I was trying to get help and she lives one state over from me and can drive here, but she was too busy getting some cosmetic procedure done to her face to be bothered, so as usual, I was in the cave all by my lonesome, aside from my beloved cat, who really could care less about her litter box being a little stinky I suspect.

To add insult to injury, literally, I got kicked out of physical therapy until I received clearance from a doctor stating it was safe for me to come back, but I had fired my rude and inept GP, so I missed a couple weeks of my much needed PT, not that I should have been doing any exercise, but my brain didn’t seem to comprehend that.  In fact, my brain wasn’t comprehending much of anything.  For example, I did a bunch of labs in December for a disorder associated with Ehlers-Danlos and I had to twist that doctor’s arm to even get him to order the tests for over a year.  However, I couldn’t recall what the tests were for all of a sudden.  How odd: this disorder I had researched in the medical journals for so long had just flown right out of my head.  It definitely started with an M, but what was it called?  Hmmm…

Since the concussion, I don’t sleep with Ambien CR anymore, not that I’m sleeping well and unfortunately, my circadian rhythm disorder is definitely here to stay.  I’ve also made some changes in my life, like deciding to not tolerate rude and discourteous people for 1 second anymore (yes, if you are one of them, goodbye) and getting rid of some useless online activities that were anything but helpful.  Who knew about the benefits of cracking your head open?

If you ever hit your head and anything in this article on concussion rings a bell once your brain is working a bit better, I hope you have the following if you are in the States:

Money 
Good insurance
A doctor
Transportation                                                   

My mother suggested that due to my disabilities, such a nasty word coming from her mouth, I should wear the following on my head.  Come join me so everyone will know how special the disabled are and you might just get a trophy, too!

For the 1st time, my home team won the Super Bowl! Go Hawks!

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UN MAR EN EL CIELO: IN MEMORY OF MY SOUL MATE

Photo source: http://www.banderanews.com

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.

Paracaidas

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.

carnaval2

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.

pvr20dowtown

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…

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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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A MILESTONE FOR MOUSH MOUSH

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Today, Moush Moush will be feasting on a meal of fresh rats if I can find some in this building.  It’s a celebration!  She had surgery for myxosarcoma 6 months ago and from her oncology appointment last month, she appears to be cancer-free still and has no signs of metastatic disease.  While her oncologist wasn’t doing cartwheels since he prefers to count years, I was doing them in my head.

The median recurrence for feline soft tissue sarcomas is 79 days, or less than 3 months.  So, while Moush Moush isn’t in the free and clear, she’s beaten the odds so far.  She is still taking Palladia—a newer, targeted cancer drug that works to prevent recurrence and even shrink inoperable tumors, but only if the cancer has a specific genetic mutation.  This was Moush Moush’s only hope per her oncologist.

We don’t know if Moush Moush has the genetic mutation, although I am hoping that reaching this 6-month milestone means that she does.  She had this same cancer 4 years ago, which resulted in an amputation of her front leg that should have been curative, especially after so many years, so if this were a recurrence of the original cancer due to the tumor being where her arm once was, it would be even more aggressive. Soft tissue sarcomas are very aggressive in general and have a poor prognosis if on the body due to the inability to get clean, wide margins—unless Palladia works, of course.

When Moush Moush’s regular veterinarian did a biopsy of the tumor I found this summer and called with the results, there wasn’t any hope and I literally fell to pieces as she’s all I have left, but her doctor told me to call her former oncologist just in case there were any new treatments.  I had little hope, but thanks to the fabulous, specialty surgeon, her oncologist, and hopefully Palladia—a magic bullet of sorts—I still have Moush Moush by my side.

We have an even closer relationship as I know how close I was to losing her and I can only hope that despite many more follow-ups and tests, this is truly behind us forever.

Perhaps we got a break, at last.

Update: As of today, July 12, 2014, Moush Moush has been in remission for exactly one year.  I hope with all my might that the Palladia continues to work to control the myxosarcoma she developed again a year ago.  I wanted to offer hope to my readers who are trying Palladia for their own pet(s).  My heart is with you…

Just a present.

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BEEF SHISH & FITTING IN… AMERICAN-STYLE

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

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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A FALSE ALARM, BUT KEEP YOUR SEATBELTS SECURELY FASTENED

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where all the answers are.

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