Category Archives: Ray of Hope



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

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

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

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

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

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

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

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

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

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

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

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

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

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I recently created a concept I refer to as the Disease Swap Meet.  It’s as simple as it sounds.  Pay a buck, get in, and find a stall with a disease you want to swap yours for.  Step right up.

I had a few things swirling in my mind and while I did coin this term, its origins come from two distinct concepts I crossed paths with since becoming sick in 2001.

One is the bargaining stage of the five stages of grief, originally reserved for terminally ill patients.  It is now used with the chronically ill, as well, and is officially known as the Kübler-Ross model.  In summary:

Characteristics of the Bargaining Stage

The bargaining stage is characterized by attempting to negotiate with a higher power or someone or something you feel, whether realistically or not, that has some control over the situation. You may make promises…in return for the painful situation not to occur or for things to go back to how they were before the loss or change, according to Kubler-Ross and David Kessler.

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Like many, I didn’t go through all the stages of the grief process and the ones I did go through—and continue to go through—occurred in no particular order.  Regardless, I was in the bargaining stage for about 8 years, although in my mind it was more of a swapping stage.  After one of my imaginary swaps happened to my beloved cat, I put this whole concept on the shelf for a while.  Superstition.

The other origin came from a TV show I saw years ago, which featured Michael J. Fox discussing his early-onset Parkinson’s disease.  A question I no longer recall elicited a response I’ve never forgotten.  He was saying something to the effect that when someone gets a disease, a familiarity with their illness develops—as if it becomes part of who you are.  He explained it further by providing an example.

He said—if I recall correctly—that if a big circle were drawn on the floor and everyone put their disease in the circle, but with the catch that they had to pick a disease from within the circle in exchange, they would take their own disease back because they knew how to deal with it.  Essentially, they would not swap out their disease; rather, they’d keep the one they had based on familiarity.  I watched him say this through every twitch, jerk, and tremor of Parkinson’s.  No way.  I wanted a swap.

I learned the five stages of grief and watched this show while carrying a diagnosis of severe fibromyalgia, although I would find out years later it was a misdiagnosis.  I got the misdiagnosis in Southern California, where I had ended up living with my mother and step-father in January of 2003 since I could no longer function in any capacity in Seattle.  I had been climbing the career ladder and was a full-time graduate student with honors when my health took a nosedive one day in the fall of 2001, when I was a mere 27 years old.

Southern California is the Mecca of swap meets and I did manage to go to a few as the hot, dry air near Palm Springs offered some relief to my pain.  They are strange places with strange people—mazes of stalls filled with drek and snake oil salesmen.  The Disease Swap Meet really isn’t too far-fetched in my mind.

The doctor who diagnosed me—a rheumatologist—seemed good and ran a lot of blood tests and ordered MRIs of my brain and spine.  My presenting symptoms at the time, which simply started one day and spread like wildfire, were severe, widespread musculoskeletal pain that made me vomit most of the day, large and painful knots within the muscles of my upper back, shoulders, neck, and jaw, joint pain in my hands and feet, numbness and tingling of the extremities, extreme weight loss, some lupus symptoms that were gone by then: malar rash and a positive ANA, episodes of hives and allergic-type rashes, severe hair loss, and chronic insomnia.

The diagnostic tests came back normal and since he didn’t focus on my joints and I hadn’t yet developed skin or corneal abnormalities, he diagnosed it as fibromyalgia—a junk diagnosis in my opinion—simply to give it a name.  From there, I was a fibromyalgic and devoted my time to learning all I could about this neurological disease and trying to figure out how to get rid of it.  I had just turned 29 and had a life to get back to.  What was the misdiagnosis exactly?

Fibromyalgia syndrome (FMS) produces chronic body-wide pain, which migrates and can be felt from head to toe. Other symptoms include persistent fatigue, headaches, cognitive or memory impairment, morning stiffness and non-restorative sleep. The pain can migrate from day to day. Recent scientific research studies have shown central nervous system involvement in FMS.

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I can’t say it was a perfect fit for my symptoms.  My doctor also failed to tell me a few things back in April of 2003.  He didn’t tell me that in America, fibromyalgia is considered to be a psychological disease by most doctors and now that the general public has heard of it, they have jumped on the same bandwagon.  He didn’t tell me that when I moved to the city I live in now, I would have doctors refuse to take me as a patient or have people tell me to my face that I have a fad disease or that it can’t really be that bad.

I had no idea what this misdiagnosis would do to me emotionally over the next decade as a result of the stigma it carried.  I did know it was a neurological disease, just like Parkinson’s.  No one questioned Parkinson’s.  Why did they question me and treat me so poorly?

Then the anger came, especially as my body got worse and the few doctors who would treat me offered no answers.  I saw psychologists who found no evidence of any mental disease—I was simply mad as hell.  I would destroy the nasty condo I was renting and stuck in 24/7 due to my illness and inability to work.  After my rage, I was left to clean up the mess of broken glass and chairs thrown across the room and whatever else had been within my reach.  I punched the walls until my knuckles gave out.  Why did I bother?  No one cared about the sick girl with the make believe disease.  The entire world had abandoned me—a feeling I had known since I was a young child.

I wouldn’t even give my illness a name in due time.  I got so tired of the ignorant comments that I told people I had severe arthritis to shut them up.  I became a complete recluse and made sure no one could find me, especially online where people from my past could see how the 4.0 workaholic had to drop-out of grad school and was now living off disability and handouts in a motel by the airport in the crappy Southwest.  I still continue to live like someone in the Federal Witness Protection Program: hardly anyone knows my phone number or my e-mail and aside from a P.O. Box, I have no connection to my legal mailing address, except that I know the person who lives there.

I hated fibromyalgia.  I hated how my body betrayed me.  I hated my lost life.  I hated having a disease that people thought was all in my head.  I hated dividing my time between the doctors who threw medicine at me that did nothing or just threw me out of their office for having a disease they didn’t believe in.  I hated how horribly I was treated by my supervisors when I tried to keep working.  I hated that I no longer had friends or a social life.  I hated the monotony of doing nothing everyday.  I hated living with chronic pain and more and more symptoms that doctors just dismissed.  I hated my dysfunctional family and the fact that I had no support because of this disease and was just left to fend for myself, as usual.

This was no life and I wanted a swap.  I could care less about how intimately familiar I was with it and had no time for Michael J. Fox and his overflowing optimism.  I wouldn’t swap it for ALS, but if it were considered a real disease and I could be somewhat functional again, I’d take it.

Then, just 2 months ago, I got to go to the Disease Swap Meet for real.  It really does exist!  I finally got to swap diseases, but not in the traditional sense.  How so?  I got a correct diagnosis after 12 years of being sick.  Even if I ended up at the misdiagnosis stall—a swap is a swap.

If I hadn’t developed keratoconus and known how to do medical research, the stars wouldn’t have aligned and led me to the geneticist who diagnosed me with Ehlers-Danlos syndrome (EDS), which I’ve written about before.  EDS, says my geneticist who trained at Johns Hopkins—the best medical center for my disease—explains everything and why my symptoms no longer even vaguely fit the misdiagnosis I was given so long ago.  Good bye, fibromyalgia.  I won’t miss you.

Very quickly everything seemed to change, even though my symptoms were the same.  The Disease Swap Meet concept really worked!

First, there were the doctors.  The geneticist called two of them after the official diagnosis.  The rheumatologist, who had dismissed everything for years, was apparently very interested that EDS was behind my myriad of symptoms. He should have connected the dots due to his specialty.  No need to see him anymore!  My new PM&R doctor, who thought the fibromyalgia diagnosis was wrong when I met him and wanted to look into it, is familiar with EDS and has no problem continuing with my care.  Wonderful!  As a bonus, my great physical therapist, who helped start this journey by freaking out about my shoulder joints when I met her this summer, has some tricks up her sleeve to help my EDS symptoms.

Then there was the family, none of whom live near me.  After years of being discarded, yelled at, and told I needed an institution to deal with my psychological disease, they started to e-mail me inquiring about my eyes, which are still healing from cross-linking, and other specific health issues due to the EDS.  Quite interesting.

Is this what it feels like to have a disease that physicians and the general public believe is real?  Is this why people with Parkinson’s get the sympathy looks and I would get a lecture or worse?  What a great swap!  I’ve been sick for so long I no longer remember normal, so it’s good enough for me.

I started to notice my whole attitude was changing.  The anger was gone and this clarity and sense of peace came into my life. I’ve always been funny, but for years I hid behind my humor due to this experience and suddenly I was beginning to really laugh again, even if it’s at something funny I’ve said to myself or to my cat.  I’m also less worried about talking to people now.  This was always a fear because the first thing they ask is: what do you do?  How could I explain that I can’t work due to a disease no one thinks exists?

For 12 years I played the blame game: “If I just hadn’t taken that job in the sick building, I never would have gotten sick. I’d have finished graduate school and be running my own non-profit by now.”  That building was disgusting, but EDS is genetic—it’s in my DNA and no matter what I did, I would have gotten sick.  No one can blame me, not even me!  I was a ticking time bomb and that was that.  A weight was lifted off my shoulders knowing I couldn’t have prevented this.

The cloud of shame from the misdiagnosis was blowing away.

Now that I know that my body really is a degenerating mess due to a connective tissue disorder and I don’t just have a pain processing problem, I feel I have a wee bit of control—an issue I really struggled with due to the need for control in my life.

There are things I can do that give me some sense of control now.  I can clearly explain why things hurt and you can see a lot of my problems with MRIs and the like.  Proof!  I can exercise the right way and make my body strong which helps my muscles, as they are literally holding my joints together.  I can prevent injuries this way, like spontaneous pulled muscles and tendonosis.  I can also help stabilize my joints and heal the tendonosis by going to physical therapy and doing my exercises at home.  Amazing!

Aside from my semi-anonymous blog, no one can find me still, but I sort of feel like loaning out my picture as the face of Ehlers-Danlos syndrome, the disease I was lucky enough to get in a swap.  I think only someone who has been through this can understand my excitement or even why it makes sense.  After all, the disease process is no different and and my lost life is still gone forever—buried in a pile of lost lives that sits next to the dusty parking lot at the Disease Swap Meet.

Come on down.  2 for 1 tickets this weekend.

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I am not a positive thinker, nor am I a cynic.  Rather, I refer to myself as a cautious optimist.  I don’t like the idea that “everything happens for a reason” because it is a hard pill to swallow when something bad happens and you’re stuck muttering, “Why me?” over and over again.  So, in an effort to play this hand I was dealt, I tend to not be a trusting person, I’m ridiculously superstitious, and I refrain from saying, “What else can you put on my plate?” because something else will land there.

I was pondering many things the other day.  Is there a timing to bad things happening to us; is there any rhyme or reason? Does fate really exist?  I’ve tried to write that off. Why do good people get ailments and diseases that so negatively change their lives or take their lives forever?  It happened to me, after all.  For some reason, an old memory came to mind.  I remembered an X-ray from my childhood and some of my questions were answered.

In 1978, my parents and I moved into a new home that my father, a general contractor, had built.  He left the daylight basement unfinished, concrete floor and all, and I spent hours in that oddly-shaped room roller skating to disco on the radio. On one wall was a beautiful, black lacquered cabinet that had belonged to my great-grandfather.  It was a treasure chest of sorts and held all of my father’s memorabilia.  He had his high school yearbooks, a metal dog collar that said “Waif,” his beloved, childhood pet Boxer, and a big, film X-ray.  I would look through his things and wonder about this X-ray.  Why was it in there?

The X-ray was of my father’s small intestine.  It was from the summer of 1962, not long before he grew out his kinky hair and “conked” it (a chemical relaxer) to look like The Beatles. He was 17 when it was taken and was a recent high school graduate working at the World’s Fair held in Seattle that year. The X-ray revealed a duodenal ulcer that took a year to heal due to the lack of effective medications at the time. Apparently, antacids were all that were available to cure an ulcer in the early ’60s.

As required by law, my father registered with the Selective Service when he turned 18 in the fall of 1962.  He was in his 1st year at the University of Washington with plans to major in accounting due to his brain being a human calculator. Unfortunately, my father wasn’t a very good student and decided to sleep late instead of going to school to take his final exams for his 2nd term.  It literally was a mistake that could have cost him his life.

1963 was a pivotal year in America.  President Kennedy was assassinated and the Vietnam War was escalating.  A draft had already been established.  My father was issued a draft number, but being a university student could keep you out of the war in the early years.  When he dropped-out, however, the draft board sent notice that his number was up. Knowing my father, he must have looked into every way he could to get out of being drafted.  Even his shorter stature was above the cut-off mark and he knew it.  It seemed he was out of options.  My father, however, had one thing the draft board might not like: a duodenal ulcer.  Perhaps it had just healed, but it could come back and with records from a good physician, the ulcer could be a golden ticket out of Vietnam.  Make that a silver ticket.

My father showed up for his appointment with the draft board with a giant X-ray under his arm and sweat pouring out of his armpits.  Would the ulcer suffice?  Would he get medical clearance and be saved from certain death in Vietnam?  In the end, it did.  I think they took one look at this short kid with severe anxiety (all that sweat) whose only athletic talent was playing on his high school’s golf team and figured he’d be more likely to shoot himself than any Viet Cong hiding in the jungle.

My father is now 68 years old, still nostalgic, and still has that X-ray.  He’s a smart man, but not a deep thinker so I do that part for him.  He knew that ulcer had a deeper meaning though, which is why he always kept that old black and white film of it. As for the ulcer, it never did come back, but my father got GERD instead.  For years he’s been on proton pump inhibitors (PPIs) and heartburn-free thanks to modern medicine.  For him, putting up with a burning pain in his gut and drinking and chewing chalky antacids around the clock for a year changed his fate in life (alright, so maybe it exists).

The ulcer had a silver lining.

I honor the bravery of every Vietnam Veteran and the memory of those who never returned home.  This is a true story and it was necessary to write about the sentiment many young men had regarding the draft at that time.

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