Tag Archives: chronic illness

PREMONITIONS & REALITIES

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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WHY ARE YOU A DOCTOR?

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

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

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

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

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

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

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

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

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

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

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

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

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MY LITTLE ACCIDENT

Accident

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

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

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

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

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

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

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

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

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

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

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

Money 
Good insurance
A doctor
Transportation                                                   

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

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

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ON LOSING A HEALTHCARE PROVIDER

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

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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GOOD YONTIF, MY FATHER

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Photo: My father and me on Mt. Rainier in 1978.

It’s Yom Kippur today, or was: the Day of Atonement and the holiest of days in Judaism.  I’ve been very sick the past two months due to the never ending monsoon where I live and its affect on my body due to Ehlers-Danlos syndrome, on top of other issues in my life.  It’s been very difficult, painful, and depressing, so my mind has wandered to my father as I’ve sat for months in utter isolation, even though we are estranged yet again and have had no contact in months. Last night, before the sun set on Erev Yom Kippur, I sent him an e-mail.

This is a time for reflection: to think of where one has erred and where one can improve.  I wasn’t expecting a reply to my e-mail; I just wanted to share my thoughts at this time.  I was raised Reform and am not overly observant, but there are traditions I choose to follow.

I wrote in the subject line of the e-mail the traditional greeting on Yom Kippur: Good Yontif, my father—anglicized Yiddish for Good Holiday. The rest was highly personalized on purpose, as I know how to get my father to understand my point, if nothing else.  So, I wrote:

My thoughts this Erev Yom Kippur:

My father taught me to be strong and tough, so I am.

My father taught me to be outspoken, so I am.

My father taught me to be responsible, so I am.

My father taught me to be the squeaky wheel, so I am.

My father taught me to be funny, so I am.

My father taught me to be a Jew, so I am.

My father taught me to be affectionate, so I am.

My father taught me to love doo-wap and Motown, so I do.

My father taught me to not let others disrespect me, so I don’t.

My father taught me about tzedakah, so I give back.

My father taught me business sense, so I use it.

My father taught me to speak up against injustice, so I do.

 

My father taught me to be stubborn, so I am.

My father taught me to talk down to people, so I do.

My father taught me that asking for help is a weakness, so I don’t.

My father taught me to hold grudges, so I do.

My father taught me to not rely on people, so I don’t.

My father taught me to cut people out of my life, and so I do.

 

I learned all of these traits—both good and bad—from you.  I atone the latter: these horrid traits that go back generations. My mother taught me very little that I can recall going back to 1977 and I have few memories of her and so many of you, a man who is long gone now and who has no memories of my formative years.  I have many traits that you don’t have and vice versa, but I am my father’s daughter, and it wasn’t from mere observation.  You wanted me to be like the man you were years ago before you lost interest, and so that is what I became and still am, despite becoming debilitated and disabled so early in life.  I don’t know who you are now, but I knew who you were back then: a father who, despite having many flaws, loved me and who I could always rely on, and who I loved in return.

May you be inscribed in the Book of Life this New Year.

Your daughter

My father replied to my e-mail today and let me preface this by saying that list was abridged and purposely focused on the good traits he taught me.  He apologized for some things, which was unheard of, and made excuses for others, but then the e-mail turned sour and was focused on how my family had reached out to me and that this was the time to not be so strong and tough and to let others in, which is just absurd and completely false.  I was also told I needed to learn how to apologize. To whom do I need to apologize—my grandmother who told me I was “the broken tile in our family’s mosaic?”

My father stopped talking to me, and by that I mean by e-mail, because I hinted at the fact that my physical therapy benefit was cutting out and as my income is mainly from SSDI—federal disability that pays for my prescriptions and little else—I would need help paying cash for my much needed physical therapy.  My father was a successful businessman who lives a very comfortable life, so this was not asking for much.

I won’t even touch on the lack of emotional support from the bulk of my family in general or the verbal assaults thrown my way simply for falling ill due to a genetic disorder.  As the day progressed, the back-and-forth e-mails got downright offensive and I was told to not contact him again—all for speaking the truth.

I tried and failed and the impasse continues, and on a day when things should be resolved, as is our tradition.  I’m left with a heavy heart and am as frustrated with this relationship as I am with this disease, both of which are utterly incurable.

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AN ANEURYSM? ADD IT TO THE LIST.

Image Source: http://www.commons.wikimedia.org

I really thought I had an honorary M.D. after my name by now. I’ve only spent 12 years of my life researching a misdiagnosis, and now a correct one—digging deep into medical journals with such frequency that I only speak doctor talk even if discussing the weather.  Well, apparently I needed a good dose of reality.

After 5 months or so and two or three cancellations by the clinic, I finally had an echo of my heart and saw a real cardiologist.  Omg.  I know, I thought this was America—land of the world’s best healthcare system per the wealthy conservatives.  What was this, that maple leaf country to the north or something?  I had an echo twice in the past 10 years and was told I had trace mitral valve prolapse and mild tricuspid valve prolapse with regurgitation and a slightly enlarged heart chamber as a result.  Well, apparently the cardiologists who interpreted my former echos needed a good dose of reality by way of more CEU credits.

Now, these are both consistent diagnoses with Ehlers-Danlos syndrome (EDS), not that I can find that information anywhere at the moment.  For a broader description of the typical cardiovascular issues that can occur with EDS, click on this link and scroll down to Cardiovascular.  Please keep in mind that Type IV (VEDS), which has a shortened life span usually due to cardiovascular complications, is included in this description.

Regarding cardiovascular issues, I know what a stroke is.  I couldn’t claim to have an honorary M.D. without that basic knowledge.  My grandfather who had EDS had one, but he was a chain smoker.  His mother had one, but she was a rather zaftig woman from photos I’ve seen.  I recently heard some random, first cousin once removed that I never knew of died of a stroke in her late 30s or so, but she’d been a former drug addict it seems.  Did any of these women have EDS?  I have no idea and I really don’t know my mother’s side of the family, with the exception of my late uncle and grandparents.  Then, we have aneurysm.  I always thought an aneurysm was when a blood vessel in your brain bursts due to a weak spot and then you go bye-bye.  I do recall that it is a type of stroke: hemorrhagic stroke.  Due to my very leaky blood vessels, I figured this would be my one-way ticket out of here.

So, what is an aneurysm really?  According to the NIH:

An aneurysm is an abnormal widening or ballooning of a portion of an artery due to weakness in the wall of the blood vessel.

Source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002109/

It’s before the artery bursts, if it does.  Well, you learn something new everyday.  In fact, I learned I have an aneurysm in my heart.  It’s in the septum dividing my right atrium and left atrium, or the atria as the docs would say.  I apologize that the septum isn’t labeled in the colorful image above; I think you need to dissect the heart to see it.  The aneurysm is in connective tissue as it’s in a septum—what a surprise, but that means it’s not in an artery if it’s in a septum (see aneurysm definition).  Odd?  What about the deviated septum in my nose?  Now, I always thought that was just a nuisance, but my snotty cousin had to get a nose job on account of hers.  On to more pressing matters, I have a bulging balloon of who knows what size in some connective tissue dividing my atria.  More precisely, I have a congenital heart defect called an interatrial septal aneurysm. What does that mean?

I don’t really know because even though the older cardiologist was nice and knowledgeable and had seen three—make that four—EDS patients in his entire career, he never mentioned the heart defect.  Did it slip his mind?  He even took me to the back to view my echo and was considerate enough to ask if I would be able to see it due to my keratoconus.  I do okay with computer screens if I’m viewing larger images and he pointed out this and that and used doctor talk—oh, goodie.

The cardiologist did tell me my heart was fine, and while I don’t have any prolapses, I do have leaky mitral and tricuspid valves with mild regurgitation, but no enlargement of my heart chambers.  He suggested we do an echo annually to monitor things and due to my leaky blood vessels, I need to stay away from aspirin and omegas and everything I already know turns me into more of a black and blue (and purple) mess.  That sums up the consultation, which was very pleasant aside from the long wait.  In the end, I happened to see mention of the heart defect in the report when I got home as the font was large enough for me to read.

Of course, I hit up the medical journals as soon as possible to figure out what this aneurysm was.  Would my heart burst open at any moment?  I did find a connection with EDS—how could I not?  Here’s what I found, or rather didn’t find, as every site refers to atrial septal aneurysm, so what is the “inter” that is before “atrial” in my report?  I did read a non-scholarly article that referred to this septum as interatrial, so are they synonyms?  Where’s a medical thesaurus when you need one?

An atrial septal aneurysm (ASA) is a rare but well recognized and localized saccular deformity of the atrial septum that bulges into the right or left atrium with uncertain clinical significance. Although these abnormalities are considered clinically benign entities, they have been independently associated with ischemic stroke. 

Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3327030/

Ischemic stroke?  I went right past the benign part.  Wouldn’t you just get a hole in your heart if that thing ruptured?  Well, that’s what medical school and those residencies are for.  I do believe an ischemic stoke is what my grandfather had, not that it killed him.  He just had a miserable downward slide until he died from pneumonia after his electric scooter tipped over, shattering his hip and leg due to early-onset osteoporosis—the latter presumably due to EDS.  So, what will it be?  An ischemic stroke or a ruptured aneurysm in my brain due to my weak and leaky blood vessels as presumed. Blood thickeners or blood thinners?  The doctor said taking vitamin K would probably be beneficial when I asked, but what about the ischemic stroke risk?  It’s the ol’ Catch-22.

Maybe I should just start smoking, but then I’d have to go out to the freaky parking lot with the wandering junkies and it’s nearly 120°F here and it doesn’t cool down at night.  I possibly used to smoke years ago and may have enjoyed it. Something menthol-y rings a bell.  Lately, cigarette smoke makes my nose stuffy and my eyes burn, not to mention all those wrinkles and other bad stuff, but my grandfather smoked like a chimney and lived to nearly 80.  Oh, what to do when you can’t be healthy even if you try?

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COCONUT-LACED MEMORIES & HOW PHYSICS IS RUINING MY LIFE

shutterstock_121977952

Photo Source: http://www.tiana-coconut.com/

“What is your depression like?  We’ve never discussed that,” asks my newer counselor at the not-free free clinic. They are post-graduate level interns, which hasn’t done wonders for me in the 2 years I’ve gone there.  At least they know that depression accompanies chronic illness like a fever accompanies the flu.

“It’s like a dark cloud over my head and everything goes black—the light at the end of the tunnel went out years ago,” I reply. “Then,” I say, “I go to the past—before I got sick—when my life was good.”

I get a stare.

“What about the future?” my counselor asks.

“I never go to the future anymore—it’s too scary.  The future means more illness, more pain, more medical bills, maybe living in my car next month,” I answer matter-of-factly.

My counselor says, “Most people are stuck in the past and the future.”

“Not me,” I reply back. “I just go to the past and I’m stuck with the present, but I never go to the future.”

“The past is just an illusion—it doesn’t exist,” states my counselor.  It feels like I have been socked in the face.

“WHAT?” I reply, and give a thousand examples proving otherwise.  My counselor’s explanations make no sense while my brain goes through those thousand memories like still photographs in my mind.

I’m supposed to appreciate small things in the present.  I already gave the example of my cat weeks ago.  My eyes wander in the small room and then to the bushy, palm tree blowing against the window that I can see fairly well.

“I like that palm tree,” I tell my counselor. “Those trees have the fronds that look like a fan.  You need the fan-shaped fronds to build a palapa—those thatch roofs made of palm fronds in México.  I had one built and they had to go high up in the jungle to get to those trees.”

“You found something simple that gives you joy,” responds my counselor.

“It makes me happy because it takes me back to a better place—a time in my past,” I reply back.

I leave the appointment with my head swirling.  Did I have anything left?  Where was my past if it was just an illusion?

I came back to the motel and Google spied on an ex from over 15 years ago who I’d been trying to find forever—and finally did.  A little trip down memory lane.  Then, I was even more depressed that the only Jewish guy I ever dated—even if he was so neurotic that I dumped him—hadn’t turned back into the Super Size American he was before I met him at 22 and that he was married and actually had his good hair still. His face had aged and I really didn’t recognize him very well, although I have a photo of him somewhere from the brief time we dated so long ago.  Was the past an illusion, after all?  He wasn’t the same.  How different do I look?  At least his wife was a hot mess—he used to tell me I looked like a supermodel, minus the height thing.  Then, I had my usual meltdown.  So much for memory lane.

So, today I Googled this concept that makes no sense in my mind: the past is just an illusion.  An illusion is a rabbit in a magician’s hat.  I figured this is what I get for going to the not-free free clinic.  It’s actually physics it appears.  I underestimated my counselor.  Albert Einstein first described it in his theory of relativity.  Stephen Hawking and all the big physicists follow the theory that all time is an illusion: the past, the present, and the future.  Einstein said, “The distinction between the past, present, and future is only a stubbornly persistent illusion.”  For those science-types who would like to learn more, you can read this boring article.

I don’t have any interest in the theory of relativity.  It’s not going to give me my life back, which is all I really care about anymore, aside from my 3-legged cat.  I hate physics and I never even studied it.  Physics is that weird uncertainty principle on that huge blackboard in A Serious Man that Larry, the physics professor, dreams about—as seen in this clip. Throughout the movie, he always asks, “Why?” and never gets an answer.  It’s a Jewish thing—this need to know why all the time.  Maybe I would have done well in physics.  I was only one of two students in my class to pass logic in college and with a 4.0.  My friends watched as I wrote 20-something page solutions and were convinced I could crack codes for the government.

Maybe physics is logical, but it seems abstract—like why I can’t see anything due to keratoconus despite my good visual acuity per the eye chart.

“High order aberrations,” said my dry eye doctor when I decided to ask him 2 weeks ago due to my inept corneal specialist. “It’s physics.  Let me give you an example.”

He mentioned waves and I was already lost.  I even took oceanography.  He drew side views of misshapen corneas like mine, which I’ve seen and I understand.  I’m a visual learner. Aberrations are refractive problems, which leads to less-than-perfect vision.  In my case, light isn’t refracted correctly due to my Rocky Mountain-shaped corneas, or one of them after cross-linking.  This creates a high order aberration, or more specifically, a vertical coma.  Due to keratoconus, I also have nearsightedness and farsightedness, which are low order aberrations.  It’s all just physics.

“Why can I read 20/40 then?” I implored.  Actually, I read 20/70 that day, but the DMV doesn’t need to know that, or that I drive in two lanes.

“Well,” said the good doctor, “The exam is under optimal conditions—it doesn’t represent how you see in real life.”

Finally, an answer to my why.  My distorted vision isn’t an illusion—or is it?  My brain remembers that there is only one moon, not the several moons that I now see in the night sky. Maybe my entire life has become an illusion.

This is what I know.  I am who I am because of my past.  The good memories gave me life and the bad memories made me a survivor in every sense of the word.  Some events from years ago are so clear they play like a video in my mind. Certain smells can transport me in time or bring people back from the dead.  The simplest things can trigger a memory from my past. They are as real to me as the present moment. No illusions and no smoke and mirrors.  The past is so tangible to me—it is alive for as long as I remember it.

I remember when my father was a dad.  I remember when I was a roller skating queen.  I remember when I had acquaintances and best friends and boyfriends.  I remember when I fell head over heels in love.  I remember when I went out on the weekends—every weekend.  I remember when I drank too much and I don’t care.  I remember when I had fun and laughed all the time.  I remember when I spent the whole afternoon at the mall.  I remember when I sat for hours people-watching.  I remember when I was in college.  I remember when I had old apartments in Seattle that I loved to decorate.  I remember when I was a good cook and could eat almost anything.  I remember when I read books and sipped soy lattes on the weekends in coffee shops in rainy Seattle.  I remember when those who are now gone were alive.  I remember when I enjoyed the present, but lived for the future.  I remember when I was an expat in México.  I remember when I had a life.

And I remember that every Sunday in my early 20s, when my business was closed like nearly every other in the pueblo, my stray dog and I walked to the puesto de cocos—the coconut stand—and I would buy un coco and the vendor would hack the top off with a machete, give me a straw, and my dog and I would walk to the sandy beach on the warm Pacific Ocean and I’d drink the water from my coco and talk to my friends while my dog ran free and life was as picture-perfect as a postcard.

This was real.  I lived it.  I can’t go back, but I can re-live it in my mind and I am someone again—someone who was healthy and pain-free and not visually impaired and didn’t stay in a motel and lived life to the fullest and could be anything I dreamed of.  That is where I go when the sky becomes black and the light at the end of the tunnel is still gone and there is nowhere else to go because the present is a nightmare I can’t wake up from and the future is a slow and painful death.

Physics answers the big mysteries of the universe and explains why planes don’t usually fall out of the sky.  It doesn’t delve into the human experience and try to make sense out of the nonsensical.  Isn’t that what counselors are for?

By the way, according to the theory of relativity, everything you just read is an illusion—it’s in the past now.

The MarineI dedicate this post to the memory of my beloved, paternal grandfather, whose yahrzeit—the anniversary of one’s death in the Hebrew calendar—falls today.  I lit a candle, said Kaddish, and made a small donation at sunset, when everything begins. This is what we do.  My grandfather was larger than life, the strongest man I ever knew, a traveler of the world, and as seen here, a self-enlisting Marine in WWII who fought in Okinawa and survived.  He died the year I got sick, but the smell of rye bread brings him back in an instant.

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PLAYING DOCTOR OVER SHARK FIN SOUP

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

Getting a diagnosis for a chronic illness is everything.  It does not mean you will get better per se, but you finally find that weird box that all your symptoms fit into and some solace comes from that.  When I connected the dots after getting keratoconus and stumbled upon Ehlers-Danlos syndrome (EDS) and had my “Things that make you go hmmm” moment and then got a diagnosis of EDS type II (classical type) confirmed by a geneticist, it all made sense. I have zero doubts about my diagnosis and personally, I think my textbook case should be used in the textbooks so doctors can learn to connect the dots, as well.

It seemed like a closed case 6 months after my diagnosis, but EDS is a genetic disease—in type II it is autosomal dominant—and aside from those who are born with it via a spontaneous mutation, you only need one parent to carry the gene and the chance the affected parent will pass that gene on to their offspring is 50%.  Flip the coin.  It is quite clear that EDS type II came from my mother—who has a rather mild form but some obvious type II symptoms—and she inherited it from her father, who had a more severe case. This is documented in my genetic report.  More information on classical EDS (types I and II) and basic, genetic information can be found here.

Just to up the ante, I do not have a good relationship with my mother.  She never bonded with me, I have little recollection of her from my early childhood, and then have awful memories of her from around age 11 on as my father took an emotional hike and I got stuck with her until I decided that chillin’ in skeezy, 1980s, downtown Seattle at 13 via a bus pass and living with friends was a better option than dealing with my mother and the dysfunction in my home.  As an adult, she was a chronic burden, and I got stuck raising my younger brothers for awhile when I was in college due to her inability to do so after my father divorced her.  Then, I had to deal with her chronic phone calls for no apparent reason while at work during my pre-illness, workaholic, career years.  She was a ball and chain tethered to my ankle for too many years to count and she was supposed to be the parent—not I.

Once I became sick, things deteriorated further with my entire family and her lack of ability to be a mother was more apparent than ever.  She did take advantage of my illness to bolster her poor me story, however, which is the only story she seems to tell.  She has many acquaintances, but no close friends due to her closed off nature, yet in time her entire circle knew about her hard knock life due to her sick daughter, although they had no idea that she did not even have a relationship with me. Nonetheless, this became her story for over a decade as it apparently worked for her—ol’ Johnny One Note.

Suddenly, however, things began to change once I got a diagnosis.  My mother revealed more and more EDS symptoms that she had, which she previously dismissed when I inquired about them for myself.  She would call my cell and not pick arguments with me for the first time in my life and while she is a passive listener who never has any suggestions or advice, at least she was not verbally abusing me on the other end of the phone.  Dare I say she had a guilt complex that my 12 years of torturous pain, illness, and now impaired vision—not to mention losing my career, financial security, and entire life—were all from her defective genes? After all she had done, or not done, for me—I do not hold her responsible for giving me EDS.  She did not even know she had it herself and we thought a lot of my grandfather’s symptoms were from his rheumatoid arthritis.  Who would really know about Ehlers-Danlos back then?  Most doctors still do not know what it is.

Well, all good things come to an end, of course.  My mother, who is passive and does not have a voice of her own or an opinion on anything for the most part, was just trotting around China with my step-father, a retired physician, as they take extravagant vacations a couple times a year.  She does not have a clue about medicine or medical research, let alone how to use a search engine or a library.  Somewhere on the guided tour in China—so typical they take tours—she met all sorts of new friends from Australia.  Note that making new friends is her entire reason for living and then she needs to tell everyone about how popular she is.  Obviously, my mother told the sob story to her new friends.  Well, as a result, she soon learned—possible over a lunch of pricey, shark fin soup—that one of her new BFFs had Lyme disease and my mother hung on to every word.

Let me preface this by saying I was tested for Lyme disease twice within the last 10 years, although it was the test that is not very sensitive.  I had a couple of positive antibodies each time, which is not uncommon, but when discussing if we should order the pricey, sensitive test the second time around, my doctor and I decided to pass as I had no symptoms of Lyme disease, never had a bullseye rash, and the tick that carries it and transmits it to humans is very rare in any area I have lived in or traveled to.  If I look at the symptoms of Lyme disease even now, it is so far out in left field I would never consider it.  Therefore, it was crossed off the list.

My mother knows my EDS symptoms, or at least I told her what they were a thousand times.  The more I research EDS type II, the more and more it fits.  How she heard this new BFF describe Lyme disease and then came to the conclusion that this is really what I have and that my textbook EDS type II is all wrong is beyond me.  Was my Johns Hopkins-trained geneticist having an off day when I saw her, as well? Now, I would so love to blame this on her lack of knowledge on everything aside from shopping, lunching, and throwing parties with lots of pricey alcohol, but I suspect she decided to play doctor for a reason, without the honorary medical degree I have acquired after more than 10 years of hardcore medical research on the wrong disease: my misdiagnosis. Why would she even be interested in my health when she never was before—and now that I have a clear-cut diagnosis, why would she question that?

It is so obvious, after all.  It is all about her, like it always is. She gave me a genetic disease and now she is not able to tell the sob story without implicating herself in the process. Instead of acting like a mother who offers support or even someone who can relate to a couple of my symptoms as she has the same disease, even if in a non-disabling form, she is now set on finding a differential diagnosis in order to not be the one responsible for my illness and disability.  That is precisely why she was never a mother to me and never will be, not that I would have a clue what having a mother is even like.

The final stage of the five stages of grief is acceptance.  It seems that a genetic disease, as opposed to my former misdiagnosis, would be a hair easier to accept.  There is literally nothing one can do to prevent it, so it removes all of the, “If only I had done x, y, and z.”  Yet, how can I learn to accept all that has been put on my plate if some people cannot even accept the diagnosis?  I would so love to put my mother on the next cargo ship back to China, but as she cannot do anything on her own, I presume she will fall overboard, be eaten by sharks, and then be ladled out as shark fin soup to the next round of wide-eyed tourists savoring the exotica in Hong Kong.

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AND THEN THERE WAS FIRE… A REAL ONE!

Fire

Photo Source: Me!

A fire broke out in a boarded-up hotel next to a gas station that sits kitty-corner to my motel recently.  The deserted, ’70s-era structure, built under old building codes and with no functioning sprinklers, turned into an inferno in minutes and the entire roof collapsed.

It took over 100 firefighters to make their way through the busy, backed up street to get to the hotel and attempt to get a hold of the fire from the building’s exterior due to the roof, and the next day they were still pouring water inside the smoldering structure from a tall ladder, as they couldn’t enter the building due to safety issues.  I took this photo 15 minutes after I smelled smoke and the firefighters had already done a great job of tackling the bulk of the inferno within a short period of time.

It was mid-afternoon and I was up as I had to get my X-ray reports.  I was about to shower and smelled bacon—and I don’t eat pork.  My motel has kitchenettes, which is why I fork over extra dough to stay here due to my food intolerances and allergies and the cost of eating out—and I was pissed off that some neighbor was frying up swine and stinking up my room. Within one minute, however, it smelled like my home state of Washington, which is like an earthy perfume with a base note of a wood burning fireplace.

My brain screamed, “Fire!”  I looked out the window, but it was daylight and I get a whiteout effect.  I had noticed it was a hair overcast earlier, as clouds equal more pain, but when I went to the window, the sky was black and the smoke was blowing toward me, but the corner of the building that juts out was blocking my view.  I thought a plane had crashed, but my brain said, “Burning wood.”  I flew out of my room and went to the hall around the corner that has a window that faces the same direction and presumed the fire was from that boarded-up hotel, even though I can’t see far and it was so black out from the smoke.

Then I panicked.  I knew there was a gas station right next to the hotel and figured the whole ‘hood was going to blowup.  I went back down the hall to try to find someone, but I can’t see people well, just figures and color.  I noticed a guy with a big cart of sorts, and know there are a couple of employees who clean up the halls and rooms after someone moves out. I made an educated guess and yelled, “¡Oye!  ¿Qué pasó? ¡Hay un gran fuego afuera!”

The unknown employee came down the hall and told me in Spanish that the gran fuego afuera (big fire outside) was from the old hotel and then shut the window, so he didn’t seem too worried.  I told him how I was afraid of fires and didn’t know what had happened.  The whole motel smelled like a bonfire by then, including my room, but I threw on my sunglasses and grabbed my camera which I never use and went downstairs to get photos.  This is when it no longer looked like a 787 Dreamliner—currently grounded—had crashed while trying to land at the nearby airport, but it still looked and smelled awful.

The last time I lived here, there was a small fire on the top floor caused by one of the resident meth addicts lighting up a garbage can.  Their other hobbies include chronic pacing and dragging furniture across the floor 24/7, as I have lived below 2 meth addicts now—and one was in a rental condo. As a result of the burning garbage can, the alarms went off in the middle of the night throughout the building and in my room—same one as now for good luck—and the fire doors in the hallways slammed shut and the elevators shutdown.  I was still awake, but it was scary as hell.

I was worried the sprinklers would go off, so I shoved all I could under the table and covered the rest with garbage bags and grabbed my purse that holds a lot of what I need, my medications I can’t live without, my laptop, and my beloved cat, who I stuffed screaming into her carrier, and got into the stairwell to get to the nearest side exit and sat on the curb with the other residents who stay at the front of the motel.  I should add that my vision was near 20/20 less than 2 year ago.  The firefighters were everywhere by then and were going in and out that same door by where I was sitting and trying to reassure us.  I didn’t know what was really going on and no one was talking to me.

I used to have a buddy in here on the top floor at the back of the motel—a cool guy who went to UC Irvine and had a life spiraling downward like mine.  We used to lay for hours in the lounge chairs by the pool in the middle of the 100° F summer nights talking life and politics and discussing things like the ridiculousness of Reaganomics and the craziness of the Nixon-Agnew Administration, although neither of us were alive during the latter (well, I almost was). He texted me while I sat on that curb to see if I was alright.  I texted him that I was and he said he was too, and that he and his neighbors were all outside at the back of the motel. Nearly 2 years later, I still have those texts in my cell.

My experience was a far cry from the 4-alarm fire in the boarded-up hotel, which is presumed to be caused by the squatters who had been living in there and roam this neighborhood.  This is why a ghetto is a ghetto and they are not created on their own.  This building owner, like others, was allowed to let the hotel sit boarded-up for nearly a decade and the city turned a blind eye, as they don’t care what it looks in my neighborhood.  However, now that it is unsafe per the code, the city has ordered the owner to demolish it, which would have saved them and the tax payers a lot of money if it had been done nearly a decade ago and never would have caught on fire.

I equate my life and chronic health problems to a fire a lot.  A fire just starts suddenly—often when you least expect it—and destroys everything in its path.  It provokes fear and anxiety. It’s unpredictable and volatile and is affected by many things, like weather conditions and people—who either help put it out or stand by and do nothing.  It changes the way a building once looked and how it functions and people get displaced. You lose things in a fire you will never get back, which is why you instantly grab what is most important   It is a split second decision, so you better get it right.  You have to know what to hold on to and what to leave behind, and have the sense to know what matters for your survival.  By all means, hope that you have at least one person who cares that you made it through alive, even if in time they disappear into the smoke.

When the fire continues to smolder like it did in this building and has in my body for 12 years, keep fighting because with every flame you extinguish, another shows up right behind it. A fire can become an eternal flame and that is where things get tricky.

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ALL BARK & NO BITE: I JUST NEED A SPINAL X-RAY!

Photo Source: http://www.petsbest.com

I live in a weird city with weird people.  I also live in the ‘hood, which is an ethnically diverse mix of undesirables and makes it even more interesting.  It’s not the South Side of Chicago by any means.  The Southwestern U.S. was largely developed in the latter-half of the 20th century, so imagine rows of mid century, rundown strip malls filled with liquor stores, pupuserías, laundromats, payday loan shops, and taquerías jammed between big box stores and junkies roaming around every parking lot trying to hustle a buck off you.  Due to my low vision, lack of rides, and the sun setting later, I’m stuck attempting to drive during the day, which has forced me to access the medical care in this stellar part of town whenever possible.

I have needed an X-ray of my spine since I got sick 12 years ago, as I have a bizarre vertebra jutting out to the right in my lower cervical spine and mild scoliosis in my thoracic region, combined with unrelenting back pain from Ehlers-Danlos syndrome (EDS).  I finally got my new PM&R doctor to refer me to an imaging center and I found one within a mile of where I stay.  It is also the only place that takes appointments, so I wouldn’t have to sit for 3 hours, which really hurts.  I called and asked for the latest appointment, which was at 4 pm and the receptionist told me the X-rays would be taken at 4:30 pm—typical of how imaging centers work so that everything runs on schedule.

As I have difficulty filling out forms due to my vision, I picked them up a week prior so I could take my time and fill them out in the best light.  It took me about 1 hour to find the place as I can’t read building numbers or the signs that say what is in the buildings.  Just trying to drive is enough of a nightmare. After numerous attempts and driving in circles, I eventually went into the right building and found the center, but it was closed.  I tried another day and finally got the forms.  It’s part of life with keratoconus, so I didn’t make a big deal about it, although my low vision made me rather depressed that day.

This Friday, I had my appointment for the spinal X-ray.  I was running almost-on-time, but got there 1 minute late and had all the forms filled out already.  I gave the front desk woman the forms, with a brief explanation as to why I already had them, handed over the necessary cards, and was told I was after Barbie Big Boobs—a typical look in the ‘hood due to all the strippers and hookers—I mean escorts, and that it would just be 15 minutes or so.  Wonderful!  I didn’t have to wait 3 hours like I do at the eye doctor or would be doing at the walk-in imaging center across the street.

I wasn’t feeling well as I’d pulled several muscles that go from my ear down to my shoulder joint in my sleep (again) and my whole body aches chronically in general.  It’s all a typical day with EDS.  I just wanted to get the X-rays over with as I had to get my brake light fixed and then go to the pharmacy and blow more cash (again).  I also hadn’t slept much due to the steroids I’m on (again), which doesn’t help anyone out.  Yet, I complained to no one and had my smiley face on while I took my seat.

There was a woman in the waiting room I’ll call Misty, a creative, white-girl name like her real one, who was blabbing with her friend on her cell phone in a very loud and annoying voice and using words that were definitely not appropriate in a small, public place.  I could sort of make out her face and she looked like the dog above.  As a disclaimer, if your name is Misty, don’t take offense.  I know a woman named Tiffani—that is an i at the end—who is nothing like her name.

Suddenly, Misty got off her cell and began to yell at the front desk woman from her seat.  It appeared her complaint was that she had an appointment on Sunday for an MRI, but they had called to let her know there was an opening on Friday if she would like to reschedule.  Obviously she rescheduled, as she was sitting a few seats to my right.  She went on and on about how she was told her appointment was at 4 pm, not 4:30 pm. She told the front desk woman to, “tell the guy in the back to hurry up,” which the front desk woman stated she couldn’t do. She also added that the MRI of her back would take 2 hours and she couldn’t be there all day.  That’s amazing as I’ve had an MRI of my back done in 30 minutes or so.

She demanded to know who had told her to come in at 4 pm as she had stuff to do.  The woman calmly told her it was someone in scheduling.  Misty demanded she give her the phone number and she whipped out her cell phone again. She seemed to think her cell phone was akin to a Glock 9.

Someone must have answered in scheduling and Misty said she wanted the supervisor.  She abruptly had a calm, quasi-professional voice, aside from her confusion of past participles as she stated, “I wouldn’t have drove all the way over here to wait 30 minutes.”  It’s driven, Misty, driven!  She went on and on again about her predicament and was so infuriated that her appointment was really at 4:30 pm. She told the supervisor how the front desk woman would do nothing and wouldn’t even go to the back and tell the imaging guy to hurry up, despite her asking.  She had a fondness for ending every sentence with, “You know what I’m saying?” and there were a lot of uh-huhs on Misty’s part as the supervisor must have been trying to appease her. She just felt so special that someone was listening to her sob story.  Did it ever occur to her that she would be waiting 30 minutes on Sunday, as well, if she hadn’t rescheduled?

Now, I am one who often jumps into weird situations in this weird city in a “What Would You Do?” scenario, but I just decided to sit there with my finger in my ear in attempts to block out Misty’s ranting and hope the tech would soon be done with Barbie Big Boobs, who was also there for a spinal X-ray, presumably due to her Super Size implants causing an achy back or possibly her 6″ stripper boots throwing her off balance.  Poor thing.

I couldn’t help but take stock of my situation at that moment. How many hours of frustration did it take for me to get and fill out the forms due to my low vision?  While sitting in the waiting room, I wasn’t able to see the TV or read a magazine or do much of anything.  I still had a racing heart from driving there in daylight and pulling a U-turn on a major thoroughfare and praying there weren’t any oncoming cars that I couldn’t see.  I kept rubbing deep into the knots in my neck and shoulders and wishing that for once in 12 years the pain would stop.  I was worried about what else the X-rays might reveal, as I already have 2 troublesome spinal issues.  I spent over $13,000 USD on medical bills last year.  I live in a motel due to being broke, on disability, and other factors.  Unlike Misty, I have no friends to call on my cell phone, which is actually good as I don’t have many minutes. It’s not a smarty-pants phone and I don’t pretend it’s a Glock 9.  I wasn’t complaining to anyone about anything.  I just sat there in the distorted-looking room while forced to listen to Misty’s temper tantrum over nothing.

Finally, my name was called and I got changed and went into the X-ray room.  I had to pose in bizarre and uncomfortable positions over and over and then lie on a hard table that hurt my whole body while the tech continued to manhandle my achy self in order to straighten me out while my barely 100 lb, skin-and-bones body tried to stay covered in an XXL gown, which was all they provided.

If your female body is half-exposed due to being underweight from a genetic disorder that takes away your ability to eat and digest food and the gown doesn’t stay on because you’re 1/3 the size of the average American male, then that’s your own fault I guess, but I didn’t complain and I just kept trying to cover myself up while making a joke about it.  I am quite sure the imaging guy was disappointed he got stuck with short Olive Oyl after X-raying flirty Barbie Big Boobs with her head of platinum extensions and perky bustline.  I could be legally blind and spot all that.

I was finally done after 20 minutes or so and as I headed out, I could see that Misty was gone, unless she gave up the corner seat to go have a slim n’ sassy Misty cigarette. Apparently, the important stuff she had to do really was top priority.  I could only imagine what choice words she said on her way out.  The front desk woman was now blabbing on her own cell phone—such professionals here, but I needed to make sure the report was going to my referring doctor. She looked up my name and said it would be sent—all while her friend was on hold.  I told her I hoped she had a better day and was sorry she had to deal with Misty, which she appreciated, so I did my good deed for the day.

Here’s what I would love to know.  What was so tragic about Misty’s life that she had to throw a barking, hissy fit over something so idiotic and ruin everyone’s day?  Who doesn’t wait a minimum of 30 minutes for anything in the U.S.—especially when dealing with our healthcare system?  What gives anyone the right to talk to an innocent party in such a demeaning way and disturb an entire waiting room due to their need for attention?  This is not appropriate behavior and makes it harder for cordial patients, like me, to get treated with respect when I finally do find functional healthcare.  There are standards that are followed in any medical center and this issue didn’t warrant any complaints. Of course, there are times when it is necessary to take a firm stance to get things done, but this didn’t fit the bill and it’s not how a decent person takes care of business, regardless.

If the Mistys of the world really want something to complain about, they should walk in my shoes for a day.  I can only wear flats due to EDS, which may make it a little easier, but I doubt they would last even 10 minutes.  Bark, Misty, bark—it isn’t going to get you out of this one, either.

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