Category Archives: Horrible Healthcare


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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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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:

Good insurance
A doctor

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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Years ago, I needed a new doctor for my now misdiagnosis and I found a specialist for that syndrome, which was odd for this city.  He was a PM&R physician and did a very thorough exam, but somehow was yet another provider who failed to realize that I actually had a genetic disorder: Ehlers-Danlos syndrome, classical type (EDS).

I remember that at my first consultation and after my exam, he told me straight out that he had no magic pill for me, but that what he could offer was compassionate care.  It was what I—a patient with a chronic, painful, and debilitating illness—needed to hear, even if he thought I had something else.

No one knows what happened, but a year later, all of his patients received a letter stating that the doctor would no longer be in practice there.  No other information would be given and I was transferred to an associate, but that was the first time I had a complete meltdown over losing a healthcare provider.

Prior to getting sick, I just had the doctors most have and maybe saw them 6 times a year for annual exams, refills of a few medications I took, and then the endless upper respiratory infections I’d get from every cold, which only turned into massive bronchitis because I was too busy working to go to the doctor.  But, things change when you get a chronic illness. I now have more than 20 medications, I have over 10 specialists who largely do nothing for me, and I spend 3 or 4 days a week in some waiting room, which literally makes me sicker.  When healthcare providers become your entire life, and not by choice, losing one is utterly devastating as the process of finding another and dealing with records and forms I can’t see and every other hurdle you have to jump over in the U.S. is an utter nightmare.

I have been to 4 doctors for my EDS, formerly called something else, since I lost the one who disappeared and then the entire practice closed.  They were all inept or rude or left me waiting hour upon hour or all of the above. One, who I absolutely believe was an anti-Semite based on his country of origin and how friendly he was with everyone but me, actually said something so rude to me that a tear fell down my cheek in the exam room, and I wish with all my might that he had never seen that.

Right before my corneal surgery and my diagnosis of EDS last year, I found another PM&R who was willing to see me, as most weren’t interested in the misdiagnosis.  I had come from a rundown and horribly unprofessional practice where my doctor literally walked out the front door while I was waiting for him. I really didn’t know him as he spent maybe 2 minutes with me signing prescriptions and nothing else. The staff were rude and complacent and I was months behind in scripts for physical therapy and they could care less.

I knew this new doctor I had was smart and he actually questioned my misdiagnosis, but he seemed rather uncaring and disinterested by my second appointment like the others. I couldn’t see him well, but noted that he preferred to stand on the opposite side of the room and wouldn’t make eye contact with me as I can see color, like the sclera of the eyes.  If he has a social phobia, then he should have gone into research and not private practice.  It was a place to get my refills and scripts for physical therapy, which is how I view most providers in my life: robotic people who do the basics of their job while I get an extended stay at the Hanoi Hilton courtesy of my broken-down body.

One day, I was told I’d be seeing the nurse as the doctor was busy.  Well, that figured.  Unlike the doctor, his nurse was actually a person and she was friendly and talked and asked questions and was concerned.  So, I became her patient and didn’t see the doctor anymore.  I always took the last appointment since I can’t wake up and am really slow to get ready due to my pain and stiffness, and she would spend over 30 minutes with me and it felt like I finally wasn’t just a number or a nuisance anymore.

We tried a few other medications without much success as usual, she attempted to appeal the insurance issue with my physical therapy being cut-off, she was researching EDS as fast as I was, and since she was from Ohio, she always said she wished she could just stick me on a plane and send me to the Cleveland Clinic because she was so frustrated, and not by me, but for me.  I always left my appointment feeling better, even if there was no magic pill.  I had compassionate care again.

I’m on a 3-month schedule with the practice now and I had an appointment earlier this week.  There was a huge plumbing issue with the central line that affected my bathroom here at the motel, so I was running a hair late, but had enough time to get to my appointment if I drove fast and everyone does.  I get that I can’t see well, but I can drive better than the 20/20 crowd here and had my sclerals in, with enough lubricating ointment to make them somewhat tolerable, but it was like someone smeared Vaseline over the windshield.  The clinic is in a nearby town, so it’s a bit of a drive, but I can do it if I really try since it’s not in the direction of the sun.  What I didn’t expect was an accident on the arterial that leads to the freeway that created a backup for miles.

I called the clinic to let them know I’d be late due to the accident, but not more than 10 minutes, as everyone gives you a 10-minute grace period from my experience.  I was told that the doctor had to leave to meet with his lawyers and so I would have to reschedule.  I didn’t understand and had about gone through the wringer waking up earlier and getting ready and just driving.  I explained that I didn’t see the doctor—that I saw his nurse and I’d never been late.

It was then that the rude receptionist told me she was no longer at the practice.  It hit me like a ton of bricks, and she made up a lie as to why she was gone.  I knew I needed refills soon, so I was pleading with her, and she told me that I was talking in circles.  I just kept trying to be the squeaky wheel, but could hear my voice cracking and then hung up.  I was by a shopping center, so I pulled into the parking lot and just lost it.

How would I find my nurse?  Who could I talk to that would understand how complex chronic illness is?  Who would offer me compassionate care?  Certainly not anyone I currently see and not the doctor there.  My counselor, who is supposed to help me, has been putting me through the Inquisition for weeks and I rip the cuticle off my thumb in every session from the anxiety he’s causing me.  I felt abandoned, like I have felt my entire life.  The feelings about the former doctor disappearing came flooding back, as did everyone else in my life who had betrayed me: my family, my traitorous, best friends, the guys I had been with, the entire world.

I’m tired of this disease and the subsequent vision loss.  It’s been 12 years and there’s no hope.  The cure is not coming in my lifetime and the degeneration will continue—that much I know.  A million thoughts were flooding my mind and I went to a very dark place while sitting in my car, which is not uncommon—I’ve had enough and there is no meaning in my endless suffering.  I couldn’t breathe and was on the verge of having one of my major panic attacks.  I called the only person I know here—the one who gives me rides here and there—and asked that he take my cat, Moush Moush, but he wouldn’t.  I was begging him to take her to no avail and in the end, it was Moush Moush who saved me again, just like I am trying to do for her.  I promised her that I’d never leave her, and I won’t.

Very few people will understand this post.  A healthcare provider is someone most see for an infection or an injury or an acute condition that will either get better or kill you. There’s a gray area where those with chronic illnesses that steal your entire life live, and that’s my land.  I have staked a claim and it’s a lonely place that hurts my body and my mind. My nurse brought more light in, but now she is gone, like so many before her.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Some matters call for drastic measures.  They require you to reach deep into your bag o’ tricks to find a resolution.  For me, this is where being a kvetch, or a kvetcher, comes in handy.

For those not familiar, a kvetch is a complainer and kvetching is what a kvetch is always doing, although a kvetch can also kvetch, so it is both a noun and a verb.  A kvetch also kvetches, which makes this even more confusing.  Allow me to provide a quick lesson through some personal examples.

My father is always kvetching; he kvetches if his Diet Coke doesn’t come with a lemon wedge.

Don’t kvetch so much!  I have something even worse to kvetch about.

Why is my grandmother such a kvetch?  She’s the biggest kvetcher I know and doesn’t have a care in the world.

As the Yiddish spoken in America became Anglicized over the last century and the majority of American Yiddish-speakers of yesteryear have passed on, it’s all taken with a grain of kosher salt.  Fancy Schmancy was not a phrase used in the old country, after all.

Nonetheless, the term kvetch is used in a derogatory sense and is generally reserved for those types who chronically complain about everything in a very drawn-out way.  At the right time, however, I put on the kvetch hat and make the most of it. You must kvetch with an end goal in mind, or else you might as well be a plain old complainer.  Kvetching is an art and one must know when and how to use this craft.

I had to pull out the kvetch hat quite recently in order to remedy a problem.  Refer to my last post for the whole saga, but in short, my corneal specialist just left me hanging over a week ago with a diagnosis of central corneal opacity in one eye, a type of corneal scarring that can lead to blindness and is a rare complication of cross-linking (CXL), which I had done 6 months ago for my keratoconus.  He told me I had to go back to L.A. to see my CXL surgeon, which isn’t possible, and that was that.

I have been self-treating my eye with 2 prescription drops I had on hand since the Friday I was diagnosed with the opacity and was awaiting a response from my CXL surgeon, which I got in due time via e-mail.  He told me that it didn’t seem that serious—as opposed to my local doctor, the corneal specialist, who told me I could lose my vision in a few weeks.  He mentioned that he would be happy to see me, regardless.  That got me nowhere since traveling to L.A. was out of the picture.  Who was I to believe?  I had to save my eye, so it was time to start kvetching, but to whom?  This is not a solo sport.

Well, I got a second chance due to my local doctor’s assistant not reminding him at my appointment—despite reminding her—that this was my 6 month follow up for the FDA clinical trial and I would need the appropriate paperwork filled out and various tests done.  My doctor didn’t do anything required by the FDA, so I was rescheduled to see the optometrist who works with the surgical patients this past Friday.  That was just what I needed.  A chance to perform the art of kvetching in all its finery.

In the meantime, I called the clinic the Monday following my disastrous appointment and left word for my doctor that I had contacted and heard back from my CXL surgeon, wanted to be treated with an ocular steroid and antibiotic and have a follow up in 6 weeks, and to have him call me back in regards to this.  No call.  I called again on Thursday afternoon and asked why he had not called back.  The rude receptionist who answered told me, “Your message was very lengthy and he did get the message.”  Perhaps he could get e-mail like my very busy CXL surgeon?  Regardless, her response told me nothing other than that I was still left hanging and he wasn’t going to treat me.  I let her know that I couldn’t go to L.A., he was my treating physician, and that I expected a call back in a not-so-nice-tone to mimic hers.  This was more of a stern kvetch, kvetch, kvetch.

I got a voicemail from my doctor Friday morning, which was the next day, saying I needed to make sure to come in for my appointment with the optometrist that day, as well as a voicemail from the rude receptionist reiterating what he said and that my doctor would see me at the appointment, also. Maybe the kvetching was paying off?  I called her back and told her that I’ve never missed an appointment and asked why these messages were being left, just to kvetch some more for kvetching’s sake.  This was really just to add extra emphasis and be a pain in the ass, or more accurately, a pain in the tuchus.

I am always running almost-on-time due to my mess of a body from Ehlers-Danlos that is like the Tin Man from The Wizard of Oz, but I managed to print out the journal article written by my CXL surgeon with the case report and treatment protocol I was following for post-CXL central corneal opacity and also had a copy of his message from the e-mail in hand for the appointment.  All bases covered.  One must do this to be an effective kvetcher—kvetch in an informed manner and keep your eye on the goal.

I had been in a pissed off mood for a week due to this ordeal, so when the cheery front desk girl asked how I was doing when I checked-in, I didn’t give a nice response.  Why lie?  It was more of a kvetchy, I’d-be-better-if-my-doctor-gave-a-crap response, but she continued to act in an odd, overly nice way that I don’t normally see there.  I took a mental note of that.

Luckily, one of the better techs called me back for the various tests I had to do and I started kvetching to him about my treatment there—or lack thereof—since he sees me often and is aware I am never like this at the clinic.  I even told him, while he was making notes in my chart, that I was on the two new drops in one eye and was treating myself due to my doctor not willing to do so.  Oy vey.  Would he warn my doctor that a kvetch was in the clinic?  I was betting on it.

The tech and I went into a little room to do the corneal topography and I felt someone rubbing my back.  What the heck?  I turned around and it was the front desk woman I normally deal with and know fairly well, so something was definitely going on.  She had the sorry-you’re-dealing-with-this look, which wasn’t necessary, but gave me some reassurance that a resolution might be coming. How did she know?

Had the rude receptionist spread the word that I was a hugely dissatisfied, kvetching patient who could possibly be a yenta—a gossipy woman—and ruin my doctor’s reputation in this big-small-town in the Southwest? Did the 99.5% Latino, but primarily Latina, support staff have a hidden knowledge of Yiddish and its deeper meaning?  Had they been throwing these words around all week in between English, Spanish, and Spanglish?

“Esa mujer que always está kvetching.  Oy, I’m gonna go loca.”

All the better for me.  Relax, I speak Spanish, was an expat in México, and love that America is a melting pot of cultures. Thanks to the Spanyidglish, the kvetching was definitely paying off.

From there, I was led to another room and told to wait for the optometrist.  I planned on kvetching to him about the predicament I was in and asking for his advice while throwing my hands up in the air, rather than just shoving it down his throat.  Again, there is an art to this all.

However, just as I sat down, my corneal specialist came in.  I wasn’t expecting him yet, so I quickly prepared myself.  I noticed he was more humble than usual and had a nicer demeanor, as his mood is unpredictable.  Had he prepared himself, as well?  I believe the yentas in the office had warned him about me, as well as the tech.  I did kvetch about my predicament to an extent, but I was armed with the medical journal article and the e-mail message, all from my CXL surgeon.  Perhaps this would finally be resolved.  One must know precisely when to take the kvetch hat off, of course.

The optometrist quickly came in and now both doctors were tackling the opacity issue together and taking turns peering into my eye and talking in hushed tones.  The optometrist could see the opacity but thought it wasn’t that worrisome for now.  My specialist actually read the case report in the article I had presented and then agreed that the ocular steroid I was using was the best approach and said that he wanted to see me again in 6 weeks to recheck my eye.  Was that not what I had asked for in the lengthy message?  He even kept the journal article—fancy that!  He reiterated that it would be best to go to L.A. as my surgeon has been doing CXL since the U.S. trials began, but my doctor is doing them now, so what will he do when this happens to one of his own CXL patients?

Who cares at this point?  The kvetchy wheel got the grease again and that, my friends, is the whole megillah.  What a never-ending story it is—similar to reading a long post written in three languages.

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What do you call the person who graduated last in their class in medical school?  A doctor.  A good family friend, who is a retired registered nurse and was married to a doctor in the genius category, told me this about 15 years ago when I, an über-perfectionist, was beating myself up about something I no longer recall.  Little did I know what good advice that would be when I became sick in the United States, officially home to the most deplorable healthcare system in the modern world.

The medical care in the city I live in must be the worst in this country by far.  I had better doctors when I lived in the 3rd world and am sick of it—pun intended.  At this point, I simply refer to it as bad medicine.  A medical doctor isn’t required to have great bedside manner, but they do have to adhere to certain standards in America, including the obligation to do no harm. This all stems from the Hippocratic Oath, or some version therein, which medical doctors take before practicing medicine.

The Hippocratic Oath is one of the oldest binding documents in history. Written in antiquity, its principles are held sacred by doctors to this day: treat the sick to the best of one’s ability, preserve patient privacy, teach the secrets of medicine to the next generation, and so on. “The Oath of Hippocrates,” holds the American Medical Association’s Code of Medical Ethics (1996 edition), “has remained in Western civilization as an expression of ideal conduct for the physician.”

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While I have seen many doctors in this city act in complete contradiction to this oath, my primary issue is with failure to diagnose.  It’s not specifically spelled out in the Hippocratic Oath or the Optometric Oath that one cannot fail to diagnose, but it is commonly accepted to be a violation. As a result of numerous doctors failing to diagnose my keratoconus (KC) in a timely manner, when it was rather obvious and the first disease that should have been ruled out based on my symptoms, I have permanent vision loss and distortion that could have been prevented via cross-linking surgery (CXL) in the early stage of the disease.  My poor vision has limited my life even further and is absolutely inexcusable.

I know these doctors failed to diagnose me because I had to obtain and send my medical records to my cross-linking surgeon in L.A. and I reviewed them one by one.  The blatant inattention to the obvious symptoms in my records by numerous doctors was staring right at me through my distorted vision.  If I could read the medical assistants’ notes, then so could they.

Let’s start at the beginning.  In 2006, I developed meibomitis, a disorder of the meibomian glands which affects the lipid layer in the tear film and causes a multitude of problems. After seeing a ridiculously incompetent ophthalmologist in this city, I found my current doctor, who tried to treat it for years without much luck.  I was always given an eye test before seeing the doctor and my visual acuity (VA) was noted in my chart.

I also saw yet another optometrist in 2007 to try and get a new prescription for 21st century glasses due to very mild myopia I’d had for 8 years, but the glasses gave me headaches and made me feel cross-eyed as usual, despite numerous attempts to alter the prescription.  There went a chunk of change.  My prescription was slightly stronger at that time, but I could still see well with my very old, ugly glasses, so I relied on those for long drives at night.

Due to the meibomitis, I was at the ophthalmologist’s office several times a year.  As mentioned, my VA was noted in my chart with each visit, so I have a lengthy history of my vision. In 2010, I was transferred to a new associate, as he was a dry eye specialist and my doctor was a corneal specialist. He didn’t have a 3-hour wait and it seemed like a better fit sub-specialty-wise so I didn’t mind, but he left town as quickly as he came, which is typical in this city.  Then, in 2011, I got shifted to the fresh-out-of-medical-school doctor who sub-specializes in glaucoma.  This is the doctor who I primarily blame for failure to diagnose.

My vision just went over a few days in October of 2011, at the age of 37.  My night vision had slowly been getting worse, but this was really bizarre.  I was tired of the sub par optometrists, so I made an appointment with the new ophthalmologist, as I presumed this was not normal and much more than worsening myopia.  I saw the doctor that December and he told me my vision was blurry due to dry eyes from the meibomitis, which I didn’t buy.  My eyes weren’t any drier—it made no sense.

Thanks to the records I have, I now know that at that very appointment, my VA was 20/70 in my right eye and the doctor should have been aware I didn’t normally wear glasses or contacts, as that is also noted within the visual acuity section in my chart.  My right eye’s VA had been getting progressively worse at each appointment as well, unbeknownst to me. Regardless, a huge asymmetry in visual acuity is not normal and needs immediate investigation, although I had no idea I even had visual asymmetry at the time. I left frustrated and decided to try to get a prescription for glasses, as I had no idea what else to do.  That was failure to diagnose #1.

I found an optometrist who seemed to have good online reviews.  I saw him in January of 2012 and had some standard tests done, including getting K-readings via a keratometer. This measures corneal curvature and is primarily used to detect astigmatism, but will pick up keratoconus beyond the mild stage.  Following that, I looked through all the lenses he flipped in front of me with uncertainty and he simply told me, “You have amblyopia and mild astigmatism in your right eye and your eyes don’t like correction.”

The last statement made sense due to the glasses fiasco, but how did I have amblyopia as an adult when I never had it as a child?  I had vision tests each year in elementary school and at my pediatrician’s office and was screened for amblyopia, a condition in which the brain stops receiving signals from one eye via the optic nerve.  My mother has it and is blind in one eye as a result and if he looked at my family history, perhaps that was an easy conclusion.  That just sounds like bad medicine.

After getting my diagnosis 6 months later, it turned out I did have an amblyopia-type issue, but not true amblyopia that develops in childhood that the doctor diagnosed me with. Due to my massive visual asymmetry, my brain shut off the signals from my right eye so that I could see better and I soon developed mild, intermittent strabismus in the affected eye as my extraocular muscles atrophied.  I was not aware that I had monocular vision, or that the VA in my right eye had been diminishing for at least a year per my medical records.  My vision appeared relatively the same to me due to my tricky brain only using my left eye, until the keratoconus developed in that eye as well, which is what caused the sudden and drastic change in my vision.

Nonetheless, the optometrist gave me a new prescription for glasses that I could actually wear without discomfort so I thought I finally lucked out, but I didn’t have 20/20 vision with them, still had the odd monocular vision, and there was no improvement in my near vision, which just went when everything else did.  It seemed good enough, until the glasses just stopped working within 3 months.  Now what? That was failure to diagnose #2 and misdiagnosis #1.

I saw the ophthalmologist for the 3rd time in May and demanded he take my deteriorating vision seriously.  He dilated my eyes, which no one had done, told me I had crystals (drusen) on my retinas, and referred me to a retinal specialist. He also stated, “This is not amblyopia”—referring to the traditional kind, which was in my records as something I reported that the optometrist diagnosed me with. Why would an ophthalmologist just assume another doctor’s diagnosis was correct without any records to refer to or confirming this for himself?  He had a look on his face that told me he knew he had screwed up.  That was failure to diagnose #3, or #2 from this particular doctor, unless I lost count.

So, it was off to the retinal specialist in June and more waiting while I was losing a line on the eye chart every 6 weeks.  The specialist said that the drusen were benign and that he couldn’t find any problem with my eyes, although he did note that my VA drastically improved when I read the eye chart through pinholes.  The pinholes block more light, which leads to less visual distortion and increased acuity in certain conditions.  In my right eye, my record states that my VA was 20/100, but pinholed to 20/30 and my left eye had a VA of 20/30 that pinholed to 20/25.  Well, that sounds rather odd, yet he simply told me to return to the optometrist for a stronger prescription.  Did he even review my records, which indicated that I failed a pair of new glasses a couple months prior?  That was failure to diagnose #4.

I waited again to see the optometrist and had an appointment in July of 2012—9 months since I thought this all started.  I had lost even more vision by the time I saw him and ghosting, or multiple images, was about all that I saw at that point.  I had K-readings taken again and not one lens he flipped in front of my eyes helped me to see the eye chart. He abruptly stopped, looked at the little paper from the keratometer, and told me I had keratoconus.

He gave me little explanation and made no mention of it being a progressive disease or that CXL surgery would halt its progression.  He simply said that I needed medically-necessary contact lenses known as hybrids to correct my vision, which were not covered by my discount plan vision insurance, but that he sold, of course.  They are extremely expensive and would need to be replaced often due to my rare, late-onset, rapidly-advancing keratoconus.  That was a direct violation of the Optometric Oath #1:

I will advise my patients fully and honestly of all which may serve to restore, maintain or enhance their vision and general health.

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He did tell me I needed to see an ophthalmologist to have a corneal topography done for an official diagnosis and to assist him in fitting me with the contacts.  I told him the name of my clinic and he said to make sure my former doctor—the corneal specialist—did the test.  As I was no longer his patient, it was another 5 weeks for an appointment.

One question still lingers.  At my 1st visit, why did the keratometer give K-readings on my right eye that were low enough to be interpreted as mild astigmatism when my VA was so poor from my cornea turning into a cone that my brain had literally shut off vision from that eye?  I believe the assistant, who performed the test, made a mistake, unless the machine did. In any event, the doctor should have retested my eyes due to the keratoconus symptoms to be sure.  That was human or mechanical error #1.

That was when, despite my terrible vision, I did as much research as possible on what I had, learned it was progressive, discovered clinical trials for CXL to halt the progression, and the rest is history.  The cross-linking greatly improved my visual acuity, which is atypical, and I have binocular vision again as a result, even if it’s keratoconic vision.  My visual acuity pre-CXL, which I don’t believe accurately reflects keratoconic vision due to the distortion, was at 20/100 and 20/60 (right to left).  My VA less than 2 years earlier was near 20/25 bilaterally as the myopia I developed in my mid 20s was very mild.  This was a pure failure to diagnose by multiple doctors, bad medicine, an example of the abysmal American healthcare system, and whatever else can be thrown into the mix.

I know this to be true because a caring and competent optometrist in my hometown of Seattle, who happens to be good friends with my step-father, sent this e-mail regarding my situation shortly before my diagnosis.  Note that he never saw me or my eyes during this time:

There is only one word to describe this…OY…or OY VEY.. There are too many things going on. Amblyopia is a condition that one is born with. This would have been detected early unless the vision was 20/25 or so and wasn’t really a factor. She might have developed a corneal condition called keratoconus, which is a steepening of the cornea with distortion causing blur. This should have been detected earlier with corneal mmts. She may have/had an optic neuritis which is an inflammation of the optic nerve causing a loss of visual field. This is sometimes a precursor to MS. If this were the case, her MD should recognize this and any visual field loss or sudden change. This is all “rule out” testing. Who knows since she was bounced from one Dr. to the next. I would look for a corneal specialist or a Dr. specializing in dry eye.  This Dr. could also evaluate for any corneal irregularity such as keratoconus or irregular astigmatism which may/may not be a problem. I would also suggest a neuro-ophthalmologist to evaluate for any visual field loss or acquired “amblyopia.” They would also evaluate for any other neuro problems in the visual pathway through the brain to the visual center of the brain. In any event, she needs to find someone she trusts and stay with that person as none of these problems will quickly resolve… Thus..OY. 

That is an example of a good doctor—one who is well-trained in diagnostics and concerned enough to leave no stone unturned to achieve a diagnosis.  It’s a huge dose of good medicine.

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This title says a lot.  Of course, it’s my favorite Bob Dylan song, but it’s also where many of us dealing with a chronic disease or illness find ourselves.  We’re at the mercy of doctors who don’t have answers, medical research that hasn’t caught up, misdiagnoses, trying one overpriced medication after the other, navigating through insurance companies’ bizarre policies, and on and on.

A little over two weeks ago, I received a call from my ophthalmologist’s coordinator telling me that my doctor had a change of thought regarding my Intacs surgery and would call me personally that night.  It was a Friday.  I was out of options as far as my keratoconus goes, so I knew he would say he thought a corneal transplant in my worse eye was the direction we were going in now.  Needless to say, I was dreading the call.  I waited and waited and no call.  I waited all weekend and no call.  I called the answering service and he wasn’t on-call.  So, I waited until Monday.

I got an e-mail from the coordinator and a call from the doctor saying that their CXL trial was on hold even longer due to the FDA and I needed to go to Los Angeles as soon as possible to get the procedure done there.  I was given the names of two doctors, both of whom I recognized from all my online research.  One gave me an uneasy feeling, but I called both regardless to get the hard facts.

To protect everyone’s privacy, I went with the doctor that I had great faith in and even though I will be in a clinical trial, I can get the CXL done in both eyes on the same day and do all my follow-ups with my doctor here, which is great.  I am paying more, but was able to negotiate somewhat on the cost—doctors pad the price to cover all the follow-ups, which I wouldn’t be doing in L.A.  I am so glad that I got the facts and will not be seeing the doctor that sounds like a snake oil salesman.

Then the big stress came.  I had to figure out how to get to L.A., as I can’t drive except for short trips around town since my soft contacts don’t work for long.  I have a massive fear of flying and L.A. is a doable drive, plus I have a cat I’d rather bring since we’re inseparable.  I arranged for someone here to drive me to the Palm Springs area, where my mother has a winter home (currently empty) and then my mother will fly to her winter home and drive me to L.A.  We need to stay for 2 days so I had to figure out the hotel, etc.  Why does the sick person have to do all of this?  Well, that’s the way things go in my life and why the word “support” is some sort of foreign concept.

My exam/CXL procedure are all scheduled for 9/13/12 and then I return the next morning for a post-op and am on my way back to the California desert, which is hotter than here. I’m just hoping the monsoon will be gone by then, but it’s still lingering this week.  My cat loves it at my mother’s home in California—it’s on a golf course and she’s stuck on a dusty balcony here, so at least she’ll be happy since we haven’t been there in years.

The procedure will be the same as the CXL I was to get here, just in both eyes on the same day so I don’t have to travel to L.A. again.  I’m most concerned about the eye pain following the CXL, as I can’t take narcotics since they make me very sick. I am getting several Rx eye drops and eye drops for pain, so I hope I can tolerate that.

It seems this all should have gone smoothly, but it didn’t.  I had to get medical records from two doctors and there were errors and delays.  Then I had to make copies and organize those and get them in the mail ASAP.  I had all the “back and forth” with the doctor in L.A.’s coordinator to work out the kinks; she and my L.A. doctor are both great and on top of everything, unlike here.  I think it took three days to organize the people who are “helping” me to get to L.A.  I don’t know what took so much time and so many hours, but I don’t think I even ate for a week and my anxiety was through the roof.

It’s very hard to deal with so much all on your own when you are sick, but that’s all I know, and there isn’t anyone to help ever.  So, I just kept putting one foot in front of the other until I got every last detail worked out, including an itinerary since no one can seem to write a date in a calendar.  Having “low vision” makes things hard enough, but it’s the fibromyalgia* (see update) that really makes having to go into “overdrive” so difficult.  In my former life before I got sick, this would have been much easier to handle.

The other thing that is making me anxious right now is what I’m supposed to do after the procedure in order to see well enough to function.  I’m not doing that great right now as it is. I have my 1st two follow-ups scheduled—one is at day 6 to remove the “liquid bandage contacts.”

No one can really tell me when I can wear soft contacts again and I do know that my vision will be worse after the CXL due to the blurriness it causes.  I’m fine that first week since I’ll be mostly with my mother, but what do I do after that?  I have someone who can give me a ride once or maybe twice a week (doesn’t really want to since he’s stuck with driving me to California), but how will I get to my doctor appointments, physical therapy, the pharmacy, the grocery store, etc.?

I know that my corneas need to be healthy enough first, but even if they are at week 2, how can the optometrist get me into another trial pair of soft contacts—my plan until my corneas stabilize—if I have this blurriness problem, as it’s quite possible I will slowly get an improvement in vision and the current Rx I have will be too strong?  How will I even get there?  Again, having supportive people in your life would make living with any chronic ailment so much easier.  Of course, living in a city with functional mass-transit would also be nice.

*Update: I was diagnosed with Ehlers-Danlos syndrome (EDS) by a geneticist in November, 2012.  It is an inherited connective tissue disorder that is sometimes misdiagnosed as fibromyalgia and can cause keratoconus.  I have written about this on my blog.

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I saw the optometrist at my ophthalmologist’s office for a refraction on 8/13.  I was told this appointment was for “measurements” for the Intacs surgery and the fee was $79.00, so when I just got a refraction, which I had done 3 days prior with my personal optometrist to get the trial contact lenses, I was rather irritated.

An assistant did the whole refraction—not the optometrist—and he only came in for a minute at the end to review the notes.  He informed me that from there I needed to make another appointment with a different optometrist at the clinic to get these measurements I need for surgery.  I expressed my frustration about being given the wrong information by my doctor, but there was nothing to be done.

I went to the front desk to schedule the next appointment and to make sure they were aware that I had brought a copy of the records from my optometrist from the previous Friday, showing that I had “failed” the contacts as required by my insurance’s prior authorization process.  The woman at the front desk had no idea what I was talking about and said she’d never heard of insurance covering Intacs, but that she “works on the medical side of the clinic, not the surgical.”  I told her I had e-mailed the surgical coordinator with the information, but had never heard back from him.  Who was dealing with my much needed prior authorization?

Apparently no one.  I started to get really frustrated, as it had been one week since I saw my ophthalmologist and was told that I needed Intacs because he wasn’t confident that the cornea in my right eye would “hold” for 45 days, which is the waiting period for the CXL clinical trial. Someone should have called my insurance that day and all they would be waiting on would be the proof that I “failed” contact lenses.  I had another appointment scheduled two days later for an unrelated ocular disorder, and just left with hopes that things would be rectified by that time, as the woman at the front desk said she would give my information to the prior authorizations person.

Fast forward to 8/15 (2 days later) and I ran into the surgical coordinator while I was waiting to be seen by another ophthalmologist there.  He gave me some excuse as to why he hadn’t read my e-mail and reiterated what the woman at the front desk had said earlier this week regarding insurance not covering Intacs.  This was a complete contradiction to what my doctor had told me, and he was in the office that day, but has at least a 2 hour wait and you need an appointment to talk to him.  How irritating.  I asked what the cost of the surgery was—again, one eye only—and about died. There was no way I could pay for it without insurance, especially since I need to pay $2,500 for the CXL on my other eye if I get into the clinical trial.

I was really upset at that point, as the front desk wanted to schedule me for the measurement appointment, which would cost $250.  I reiterated again that I was told this would be covered by my insurance and asked what the prior authorization person had said.  She didn’t really answer my question, except to say that it’s usually 90 days to get approval from an insurance company and my eye can’t wait. I was so frustrated and said I wouldn’t have even paid for the contacts if I had known all of this.  Why had my doctor told me a different story?  The surgical coordinator’s advice was to call the insurance company myself, which I already had and was told they needed a code.  I don’t understand why this is my job.

I went home and called my insurance.  I lucked out and got a very competent and capable woman on the other end of the line.  She thought everything they told me was very strange, especially since without the Intacs my insurance will be paying for a corneal transplant in due time.  She got all of my information, as well as my doctor’s, and said she would research coverage on Intacs, contact her prior authorization department, and call me back the next day.

That was today.  Well, did I get lucky.  First of all, no one from my doctor’s office has even contacted my insurance company per her notes, so how could they tell me all that false information?  My insurance representative told me that Intacs for keratoconus were covered as long as I met the criteria, which wasn’t much, and the only thing I didn’t have on 8/6 was the “failed” contacts part.  I asked if she could e-mail me the document and fax it to my doctor’s office, which she did.  I asked her what the review time was, as I really doubt it takes 90 days.  It’s 7-10 business days or less than 48 hours if marked “urgent.”  I asked her to note that on the cover page in the fax. I thanked her a million times over for all her great research and follow-through, as that’s how I function in the world myself.

Now, since I thought a corneal transplant would be my only option yesterday, I made an appointment for tomorrow with my doctor to discuss Plan B out of utter desperation.  Let me say again that I was at the clinic on Monday, Wednesday, and might still be there Friday.  Ridiculous.  I didn’t get off the phone with my new friend at the insurance company until after 5 pm, so even though the office staff and doctors are still there, the phones go to the answering service.  I had them leave word with the woman at the front desk that a fax was coming and to please call me, as I needed to cancel the appointment with my doctor tomorrow since it was no longer needed.  She never called me, of course.

I also e-mailed a rather stern message to the surgical coordinator and attached the insurance document with instructions to “please get this into the right hands and expedite it ASAP.”  Now I will have to call in the morning and hope they don’t charge me for cancelling the appointment I never needed, thanks to them.  They get paid to do this job and it’s stressful enough to be losing your sight, especially without a true cure out there.

Sometimes I just want to give up due to peoples’ complacency, but I know I have to keep pushing forward and not let anyone get in my way.  I was never the type who needed to be everyone’s friend, and in this situation, my assertive personality (“the squeaky wheel”) has benefited me again, so long as my doctor’s office now sends the information my insurance company needs to get this procedure covered.

Feeling rather disgusted by nearly everyone tonight.

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I need to “fail” a pair of contact lenses in order for my medical insurance to cover surgery for Intacs for keratoconus in my right eye.  I was lucky enough to get in today to see my optometrist, just a few days after learning I needed this surgery.  Of course, none of the records from my ophthalmologist’s office were sent, the receptionist never recorded exactly why I was coming in today, and I can’t recall exactly what else went wrong.

I was escorted back to the exam room after having more corneal measurements taken and I explained to the medical assistant why I was there and that I needed my optometrist to prescribe “the cheapest contact lenses possible” (repeating what the ophthalmologist said), as they were just going to go in the garbage since my eye couldn’t go much longer without surgery.  She looked completely perplexed, but I don’t make up these ridiculous rules.  Blame the insurance companies who are now paying for two things instead of one.

My doctor came in and I explained the whole situation once again.  I was having Intacs in the worse eye and corneal collagen cross-linking (CXL) via a clinical trial in the better eye and I needed to “fail” a pair of contact lenses for my insurance to cover the Intacs (let’s repeat this one more time).  I was a little worried that he’d think I was making him lie, but I had copies of my corneal topography—thank the Lord I thought to get those—and he could see my eyes’ progression since this all began about 9 months ago, or at least compare the current topography with my K-readings. He agreed that Intacs were the way to go and would help him in fitting me with the hybrid contact lenses that I will eventually be wearing, since my cornea will be so much flatter in that eye.

My doctor did an eye exam and refraction and prescribed a trial pair of soft contact lenses, but with a stronger prescription than my glasses.  I’ve never worn contacts—and never wore glasses except for really long drives until this year, so his assistant taught me everything I needed to know about cleaning and storing them and how to put them in and take them out.  I had no idea it was such a big deal and figured it was a good primer for the hybrid contact lenses I’ll be wearing in the future.

After that, I went back into the exam room to make sure the prescription and fit were fine.  I wasn’t aware that I could see better, but I got to 20/25 on the eye chart with them in—using both eyes, and I’m at 20/50—using both eyes—with my glasses, which is no longer legal for driving.  Yikes! However, everything close-up looked fuzzy and I still had a lot of ghosting on the eye chart.  Ghosting is seeing the faint, double, or multiple, images of everything you look at.  I could also really feel the contacts in my eyes, but my doctor said that would go away.  Again, best to get used to it now.

Then I had to deal with getting samples of new eye drops since I have very dry eyes from a separate ocular condition I’ll write about at another time.  Apparently everything I currently use will fog up the contacts, but I barely get relief from my “liquid gel” drops as it is and now I’m back to the “regular” dry eye drops.  More frustration and I’d really like to just have my old myopia, or nearsightedness, back and wear my beautiful D & G glasses that cost a fortune a mere 6 months ago.

I headed to the front to check-out and asked what insurance this was going through.  Vision.  I said I thought these were “medically necessary” so my medical insurance would cover it at 85%.  Negative.  Well, there went close to $100 on a trial pair that provide better—but unstable—vision and are good for one month.  Then I asked who would tell my medical insurance that I failed these.  Oh, that needs to come from the ophthalmologist.

I asked for a copy of my records from today so that he’ll have it in writing.  Today’s records were about as botched as my last two, since there is nothing about failing the contacts and the “plan” is to just get medically necessary contacts; it actually says “plan.”  Sounds like he just negated what my insurance needs, but I sure hope it will suffice.

As I mentioned in my ABOUT section, I live in the desert SW and it was probably 110°F today and the sun/glare is a killer, whether you have keratoconus or not.  So, I reached for my sunglasses, but forgot there’s a prescription in the lenses. What to do?  Contact lenses in my eyes and now no sunglasses and it’s due west to get home at 5 pm.

Well, I did make it and noticed that things were clearer, aside from the blinding sun, which was odd.  I came home and could see the TV for the first time in months and the computer is much easier to see, too.  Of course, I have a stronger prescription and I could also see pretty well with my glasses prescribed 6 months ago before they failed me in less than 90 days, which is before anyone suspected I had keratoconus (can I get my $500 back?).

I see the optometrist at my ophthalmologist’s office in 3 days to get measured for Intacs and hope the insurance loophole can be cleared up at that time via the bizarre medical record I got today.  This will also be the third time I’m getting my eyes dilated—sans driver—in 2 months and I’m not looking forward to it.   I had the worst headache the last time, which I blame on the desert sun.

Now I wonder how I will be able to see after Intacs surgery since it’s only on one eye and isn’t a cure.  Do I pay for another trial pair of contacts until I get the cross-linking in the better eye, which hopefully will be within 45 days?  Once both procedures are done, I can get the hybrid contact lenses, but how do I manage in the meantime?

I think I need an Ocular Liaison if one exists.  I also need a rich benefactor, as all this “treatment” is adding up rather quickly.

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