making it worse before it gets better

I once had a boss who was the epitome of a douchebag.
Seriously.

The day he decided to make my life a living hell was the day that the head surgeon/chair of the department joked to him while I was taking pictures at a 'chi-chi" event.

"Mark, you better be careful or this young lady is going to take your job soon!"

ha ha ha ha

laughs all around.

But it was true. Or could have been.
I worked the room like a smooth ass teflon Don politician. Everybody liked my unobtrusive yet charmingly quirky demeanor. Everybody wanted me to take their picture. The night was a huge success. The head surgeon/chair came up to me near the end of the event: "it is a pleasure to have you working with us."

well, that didn't last long...

Shitforbrains flipped and began to panic because the big cheese was on my side. Loved me and said hi every time he came into our office. Turdo didn't even get so much as a mumble.

And he hated me for it.
Or shall i say abhorred me for it.

He sabotaged me in every way he could. Tried to break me every way he could.
I just had an operation that left me weak and ill, and he used that to his advantage.
I broke and he fired me. Just one day shy of being unionized.

I should have known that it was coming down the pipeline.
"It's only gonna get worse..." was his sick and fucked up mantra.

No wonder he was a miserable fat sloth moron.

But I digress from venting...

It's only gonna get worse ...


I find myself saying this right now as i try to march stoically through these horrendous side effects of my GERD medication.

I tried to explain to my gastro doc that I felt like i had been run over by a buss. That i was putting on weight like a rowboat in a monsoon. That i was becoming moody and manic.

"well, i've never heard of those side effects before"
(ergo - they don't exist)

But now thanks to the internet, more and more people are chiming in about the wonderful world of heavy duty meds and the delightful cornucopia of pleasantries that twist your insides and outsides into a wet noodle.

(taken from Wikepedia: Thomas A. Scully, head of the Federal Centers for Medicare and Medicaid services also criticized AstraZeneca for their aggressive marketing of Nexium. At a conference of the American Medical Association he went so far as to suggest that Astra was using the new drug to overcharge consumers and insurance companies. "You should be embarrassed if you prescribe Nexium," he claimed, "because you're screwing your patients and you're screwing the taxpayers.")





GERD can be a serious thing. I was rumored to have Barrette's esophagus, which is one step away from esophageal cancer, but a biopsy showed that the tissue was not diseased, but was told that I would have to go in every 6-8 months for a gastroscopy to make sure. Getting a tube/camera shoved down your throat is not a fun experience. I would rather have 10 colonoscopies to one gastroscopy.  Yes, that many. Being awake for both, the sensation of having your throat and thorax scraped with a toilet bowl brush over and over again is not my idea of a good time.

It's ironic - i never was a smoker, or a drinker, yet I have what most smokers and drinkers suffer from. Oh if i were only able to say that i had and once enjoyed those vices, perhaps the intestinal prodding would seem more tolerable. Perhaps it's all made worse by the fact that I have a Hiatus hernia...


It's only gonna get worse ...


These pills - nasty pills. Have caused my fybromalgia to flare up in a serious way. I have to actually walk with a cane. Standing causes me to help in pain with each step, sitting is tantamount to sucking my skin and muscles into the floor with an industrial vacuum cleaner. And sleep? Well, I'll have none of that. The brain is mostly made of water, but is also a muscle, and with fybromyalgia, all muscles hurt, a lot. Including my brain.


It also triggers my bipolar.
Not a pretty sight considering I am already fighting that on a regular basis.

No more sunny days, no more walking with flip flops, letting the warm weather wrap me in its arms like a bright candy colored flannel blanket.

Fall - cold, damp, grey.
All my enemies for so many reasons.

I had an alternative, but that is even more scary than what i'm on now.

I had taken it once before, and had to get off after the third dose. My doctors thought i was crazy. Well, this crazy lady now has back up.

Astra zeneca has now packaged a long list of troubling side effects, preceded by the warning: Consult your doctor if these conditions occur or become worse.

Well, all the ones I had once tried to explain were all there in mauve and white.

Pretty packaging, not so pretty side effects.

It's only gonna get worse ...




I can hear people saying: "at least you don't have to go through chemo!"
Well, if this condition worsens, i may just have to...

But yes, it is gonna get worse before it gets better, and i have to take this bitter pill, my medicine, but why does something that is supposed to heal you make you more sick than what you started with?

Isn't that backwards?
Oh modern medicine, why must you be such a motherfucker?

A letter to a friend

a letter to a photographer friend today - a reply to his message after seeing my film
Clair Obscure.

I was surprised by what gushed forth
sometimes I surprise myself, in a good way :-)

Oh Dave,

you have no idea how much your message has touched me. So many emotions. I don't know where to begin...

first, I'll start from the end...

Interesting you picked up on the whole doc/60's-70's feel. I guess my religious viewing of films such as shock corridor (Sam Fuller), Titicut Follies (Frederick Wiseman), 2001 (Kubrick), A woman under the influence (Cassavettes) and of course, One Flew over the cuckoo's nest (Forman) and Let there be light (Huston). Film has been a huge part of my life. When my parents divorced, i was 11, and my weekly father's visits consisted of dinner @ Wendy's or McDonalds followed by a movie. That's all we did. That was his way of connecting. After watching a film, we'd go for ice cream and have our own "At the movies" critique session. You can imagine how interesting they were when we saw 2001 a Space Odyssey and Apocalypse Now (he snuck me into that one. Opening week - crazy insanity. He literally snuck me underneath his coat!!)

And when I did film production @ university, we were old school. 1990. Cutting film was an organic experience. Almost spiritual.

manic depression is often a ticking time bomb, present in the family tree and detonated during or after a traumatic event - my detonation was my parent's split. After that. puberty wreaked havoc until I was 19. That's when I had my full blown breakdown. It was ugly. It is truly a miracle I lived to tell the tale. I should have been dead by now, more than half a dozen times over...

After almost a year of being shuttled from emergency room to another, I was helped by a doctor who was starting a crisis clinic at one of the hospitals. She was a pioneer in her field and research into bipolar. It was the light at the end of the tunnel, but little did I know, the tunnel would be filled with sewage, rot and stigma. (funny enough - while I'm writing this, I just realized that the whole scene in the tunnel might have been a subconscious link to that...)

I was hospitalized for a week and then a day patient for a month. The big mental hospital is actually an old mansion on the mountain. Ornate, yet now devoid of all its glamour, it was a hollow shell of a once grandiose existence - so much like the life of a person with bipolar - after the crash...

I knew I was not 'crazy/over the edge" as some of the people there were, but i was not far from it. I had actually looked into the abyss. Stood on the precipice of no return. It was a welcome end to an existence filled with pain, confusion and relentless chaos. That ledge was so narrow. Despite my new 'medicated lithium state", it was terrifying to actually know that i was so close to jumping into an alternate reality because mine had become a living hell. The woman who sat in the waiting room, in the buss, arranging her groceries, watching out the window as the world passed her by, letting the wind blow through her hair. That could have been me. In that waiting room, in that other world...

what brought me back, i still don't know. But to this day, I am forever thankful that by some divine intervention, i returned. Perhaps it was the will to live, my higher reptilian brain telling me to push through. Or perhaps it was my old soul telling me it was my gift to be able to share this experience with the world. That my suffering was indeed necessary to be able to coherently explain life "on the other side" and to give others hope, and others insight into an existence that is nothing short of hell on earth...

Your relationship with your ex-girlfriend - bless your heart. We all need somebody as understanding and loving as you are to her. You are insightful and kind to realize that bipolar is something bigger than we are. It is bigger than our logical mind. It is our emotional mind on crack. It's the vortex of fear and isolation, of gravity and pain twisted around synapses that fire furiously, out of control, without a plan. Rabid. Paralyzing. What we say and do during our mixed states is not of our own consciousness. It is the muddled kaleidoscope of isolation, broken dreams and terror.

And ADD, I suffer from that too, albeit a mild version but  I know all too well how that can turn a normal task into a labyrinth of confusion and complication.  Mine runs into elliptical and illogical ruminations about death, paranoia and other worst case scenarios. Sometimes, I can't even step out of the house because I'm afraid that the earth will open up and swallow me whole, or that I will spontaneously combust. My mind checks over the details like a mega processor, but the computations never add up but information spews forth at random, adding to the confusion and chaos in my brain.

Dysthymic  Disorder - that languid melancholy, worn like a wet overcoat. How it turns the most beautiful sunset into a realization that another day has passed and life is that much shorter.  How the excitement of a new day is filtered through the density of apprehension that what we didn't do yesterday is yet another reason to put off what we could have done to what we should do, but then as the sunset begins, we get lost in an endless cycle of regret and what seems like idyllic hope. I really hope that you are able to manage those episodes. That you have found a medication to ease the pain. I have found that CBT (cognitive behavioral therapy has helped me a lot), but as with all ways of seeing and learning, it takes practice. The key is to stay positive and focused. Which for people like us, is nothing short of a hurdle in itself. Having friends who understand and believe in you are key.

But I think the worst part is dealing with the people who think "it's all in your head". Yes. It is. But despite that when they say : "just snap out of it" - mental illness is a chemical imbalance. The brain is a complex system of nerve tissue, fibers, neurons, dendrites and synapses - all working together or against each other. Even in the 21st century, science is still in the initial stages of comprehension and unraveling the mystery that is the human mind. I have had to deal with people who say: "just get a grip on life", "everybody has problems", "it's all in how you deal with it" or the best one: "buck up and face your problems like a man/woman".  It is my hope that one day, people who are these ignorant naysayers live one life in the mind of somebody who suffers as we have. I have no doubt that they would quickly change their mind and opinion, but until then, I try with my photography and films to drive the point home.

Did you see my "blue series" on flickr? I have a bunch of other "self portraits" that try to illustrate life on the other side of sanity. With each shutter click, i hope that one day I will get closer to being more cohesive, better at expressing my experiences. It's important that people know and understand. Ignorance breeds contempt and hatred. Our world is filled with enough of that. 
People who suffer by no will of their own need a fucken break. 

All my life i've had to deal with people labeling me a "weird/off/strange/psychotic/wacky". A good friend of mine from high school with whom i recently reconnected with said that people often came to her and asked: "why are you friends with her? She's pretty messed up." But she stuck through, believed in me and said - 'that's why she's so special. And that's why she's my friend." If only i had that kind of unconditional acceptance from my friends and family. 

After a nasty court settlement when i turned 20, my mother, father and both lawyers on both sides sat in our lawyer's office and when asked if we had any last words, I looked at him and pulled out a piece of paper.

"dad, you think that this is all in my head - this depression. this mania. my suffering. Here is a list of doctors that will tell you that I am in fact suffering from bipolar disorder. That it is real. I encourage you to get in touch with them and talk to them yourself."

without looking at me, he packed up his briefcase, took the paper, folded it into a tiny square and shoved it in his pocket. 


"Well, if I were to ask the doctors when all my problems started, they would say that it all started when you were born."

And with that, he left the room. His lawyer, my lawyer and mother all stood there, silent and shocked. His lawyer apologized profusely. So did our lawyer. So did my mom. It was something I would have to get used to.

How ironic is it that to this day, my dad, even though he has seen my film, still does not believe that what i suffer from is a legitimate and medical condition.

It is still something I am getting used to. But if my film can touch one person, then all of this will have been worth it.

And your message has made me smile.

I'm so happy that it touched your life. That means everything to me.

Please stay well Dave, and i have faith that one day, we will be able to share our stories on the battle field. We have come through the difficult task of survival, overcoming the stigma, and through that, will inspire others.

hpk

and that's 200$ please

"the visit is covered by medicare, but that's another 200$ for your next ultrasound of the breast tissue..."

200$ for the follow up ultrasound from last year's 2nd biggest scare (first, the precancerous cells on the cervix, lump in breast tissue, a close 2nd, but not by much)

waited 3 hours for my GP today. Was in tears when I saw her.

The pain, unbearable.

Spoke with the nurse there, told her my symptoms. She was from Syria and trained to be a doctor (women's health) but decided to become a nurse instead.

We both theorized what this could be. We both ran down the symptoms. We were both perplexed.

"and all the ultrasounds and MRI and CT scans found nothing?"

I was used to saying this.

"no no no - nothing at all"

"But you are in so much pain. Your blood pressure is up. It's obvious you are suffering a great deal."

"heavy narcotics help, but only so much..."

"I hope they find out what this is."

me too...

Breast doc next week.

G-scope in two mondays, and then surgery two days after that.

Must remember to take the paper that says I'm "a bleeder". Don't want a repeat of the last surgery where i needed 4 pints of blood to stabilize me.

I should bank my blood. Get some cash to pay my medical bills.

Wait a minute, I can't sell it. I have Von Wilderbrand's disease.

It would be so very fucken nice to be healthy, and to have money to pay for all this care...

exhaustion...

geeze.
Can't spell anymore...


well, spoke with the doc's secretary. Surgery scheduled sometime during the last week of the month. G-scope same week. I'm aiming for that golden bedpan - frequent flyer miles except this one is for hospital visits.

The last scope revealed nothing. The gastro doc had mentioned that I should see a urologist to cover all my bases. What's next? Heart? Lung? Brain?

Ouf. Just should have a scan done of the whole body. That's it, that's all.

Seeing the breast doc in two weeks to address the lump issue.
Psych doc will just have to wait. Unless i have a meltdown before then. Fingers crossed that it does not happen...


What is keeping my spirit up is the hope that I will be well enough to visit my family in B.C. And if things go well, E will be heading down to California for work, so that means I could hitch a ride with him. It won't be in L.A, but close enough to the shore for me to enjoy it. Just hope to GOD that it does not slide into the water while i'm there. With my luck, it might...

And also have been looking at images from the tourist videos of New Brunswick. Every time i watch this, it brings tears to my eyes. The sheer beauty is something that I want to experience in person before I die.

E is on board with me on this, but thinks that we will have to do it next year (hoping he will get some sort of raise, because after 6 years of nothing, we are getting pretty desperate. No money in the bank at all. Zero. Living from paycheck to paycheck) also because to hike to the best spots, is a 4-5 hour uphill journey. He has trouble going up stairs now. I don't want to kill him!

but i look at this and hope for the best, cause that is all I can do. That is all we can ever do...

inconclusive

the MRI results - inconclusive...
they can't find anything that is out of the ordinary.

I think I'm gonna push for a PET scan, and the exploratory surgery.

The pain is incredible and I can't believe that there is nothing going on underneath the surface.

something is not right here and i need to find out what it is fast.

it has hampered the quality of my life. I can't sit, I can't walk, i can't move much.
I have become a prisoner of my own home.

and for somebody who is bipolar, staying indoors is NOT a good thing to do, especially during the winter months.


I'm slowly going insane.

I used to love to run, to go to the gym, to take long walks in the park, the crisp snow squeaking underneath my boots. Cleaning out the stale air from my lungs.

But that is become a chore. That has become almost impossible.

What next?

What next...


I'm pushing to to have my next surgeon's appointment pushed up from the end of March to an earlier date, but like with all doctors, their availability is limited to one day a week, and there are so many people who are perhaps even worse off than me who are also waiting...

Happy year of the Tiger.

Rip my insides to shreds, as if you are not already doing so...

insane

the wind is whipping the snow across the streets like an rabid and terrified angry mob.

The sun is trying to peek through the thick translucent veil of luminescent haze.

Can you hear the muffled wailing through the wind?


the pain is unbearable.

the snow squall is beginning to slow down again

flash flood of frozen condensation

and my pain, it comes and goes, weakens and strengthens in intensity, not dependent on anything except chance and fate

the rhythms of the body and mother earth
different yet so much the same

the same
the same
yet different...

medicate me

after a week of the emergency wards of the hospitals here being my revolving door, it took me fainting from the unbearable pain to get admitted in the hospital (2nd time's a charm...)


Complications. Medications.
Waiting, waiting.

I feel as if I have been run over by a steam roller.
One week of blinding skin-ripping-open pain has exhausted me.

At least I've got pills, and was able to walk out of the E.R (well, wheeled out).

Close call indeed.

There may be complications down the line because somebody missed the diagnosis. Some things you just have no power over I guess. Not even your own body.

we shall see.
Rest rest and rest.

The painkillers are making me manic and induce anxiety attacks. Trading apples for oranges - mental pain or physical pain. Which is the lesser of the two evils?

My cervix is falling! My cervix is falling!

Phew...
went to see the doc yesterday cause I thought I was getting some sort of nasty infection - or something. My hoho didn't feel right - felt as if it was going to fall out. Seriously. The most bizarre sensation that I have ever felt in my life. Funny thing my body, up to a week before the operation, I was blocked up solid. A few hours after? I'm running to the bowl non stop. And the final last push often had me wailing in pain. "This can't be happening! Not now!" I shouted to my mom as she sat perplexed and helpless in the next room.

"Oh my dear! Is there anything I can do?"

And really, there was nothing that she could have done.

I popped immodium like a kid eating candy on Halloween, which, normally should have blocked me up till next year, but alas, the surgical assault on my body put my inner plumbing into overdrive - dry heaving after the three needles to numb my stubborn cervix, kept on pumping out the sewage at record speed.

not fun.

but a few days later, the storm subsided and life seemed to return to normal, until Tuesday, and the chaos began again...

I began to bleed - really bad. A lot. More than usual. A cause for alarm. Felt weak, about as strong as a wet piece of paper. Dizzy and clumsy. Exhausted and foggy. Was I hemorrhaging? I couldn't tell for sure. Did all that pushing finally shake something loose inside? Was my cervix really falling this time? (I knew it wasn't but it sure felt like it...)

The pain became almost unbearable. That ripping, shredding sensation was surreal and I began to panic. Was this normal? So long after the procedure?


Called the office - the nurse said to come down right away. An infection at that site could be really tricky to deal with if it's progressed to the surrounding tissue. Just what I needed...

Got there - this place is always full. Makes me think of what a betting area of a race track would look like. A hodge podge of anxious faces, waiting to be seen as soon as possible. The wait, an obvious strain apparent in their vacant stares. Almost full term mothers about to pop, pre, perio and post meopausal women fighting off hot flashes in this overly chilly air conditioned room, and a handful of anxious your ladies coming in for their first gyno exam or pap. All wanting to be seen as soon as possible. Get this over and done with fast. As soon as possible. Time is ticking, and the suspense is killing me...

I mean, who looks forward to seeing their gynecologist!?
I know I don't...

An uppity high society woman sat next to me, tapping on her pristine copy of the latest issue of Vogue magazine. Huffing and puffing into the air.
"this is ridicilous! I'm going to get you into see another doctor!"

She strutted up to the window and leaned in, ready for a catty confrontation.

"Excuse me miss. My daughter and I have been waiting here for the past hour and a half. What is the holdup?"

a muffled voice from behind the glass replied.

"yes, but she has school and I have to get her back to class. I don't understand - people have been coming in and out, many who have just come in and are being seen before us. Why is this happening?"

mumble mumble, doctors, mumble mumble, best we can, mumble mumble, please mumble mumble, as soon as possible...

She was pissed.

Her shiny Gucci loafers stomped back to her spot in the chair next to me. Huffing and puffing like a locomotive at rush hour, she snapped: "this is absolutley ridiculous!", making sure everybody around her and on the upper floors heard.

You can imagine my surprise, and fear for my life when just 15 minutes after my arrival, and two minutes after her tirade, my name as called. I was sure that the back of my head was going to be her target for the hard spine of a flying magazine...

The nurse was sweet and concerned. I gave her the rundown. She told me that everything would be okay and that the doctor would be in to see me shortly. I shivered beneath the thin cotton gown, another draped over my legs for warmth.

On the monitor in the corner was a still shot of a previous exam. I'll spare you the details, but it was not the kind of information I needed to see about the previous patient...

what a horrible looking desktop image i said to myself. Couldn't laugh too loud. But what a funny thought. Was thinking of passing that by the doc, but wasn't too sure if he would have found it as funny as I did, so I decided to keep it to myself.

He came in and said hi, a young intern, stiff and freshly academic by his side.

How are you Miss K? What can we do for you today?

i gave him my shopping list of symptoms, and questions. He was kind and concerned, but assured me that there was no real cause for alarm. After some poking and prodding, examining and having a session of medical show and tell, he surmised:

"well, you just have your period. There are no abrasions or cuts from the site, just a little tenderness, which is to be expected. I'm going to give you some antibiotics just to be on the safe side"

So that was it. Nothing to be worried about. Phew!
I was still in pain, and bleeding like a river, but at least I was assured that the healing had begun.

I thanked him, he told me to make sure to come back for the 6 month follow up and then was on my way out.

Walked up to the nurse (who's name was exactly the same as mine, and she was really sweet) and told her what happened.

"I know the other secretary told me that if they get the results, and everything is normal, they won't call, but can you call me nonetheless? I'm going to be waiting on pins and needles for the next 4-6 weeks, I just want to be sure."

"Oh no problem at all! I'm happy that the exam showed nothing serious. Take care of yourself. Everything is going to be alright." she squeezed my hand and smiled. I'm sure that I'm not the first worried woman she had encountered today.

and as I turned around to go, out of the corner of my eye, I saw madame vogue and her now teary eyed teenage daughter, who almost 45 minutes ago saw me walk down the hall into the examining room, coming back out again, look at me with daggers in their eyes. My wobbly legs were way ahead of the rest of my body in trying to find the nearest exit to escape to!