Wednesday, March 15, 2017

The Mole

Greetings three readers I have left!

And welcome to another installment of "Erin's antibiotic illness."

In today's entry, we will explore my latest breakdown - one I'll heretofore refer to as "The Mole."

Since childhood, I've had this silly mole on my right forearm that always insisted on growing two long, silky, black hairs.

These hairs grew at an incredible - record-breaking? - rate so, no matter how often I shaved them, my constant companions would return within days.

Until Cipro.

Since my poisoning in 2015, I have steadily lost the hair on my head - to such an astonishing extent that I cut my always-long hair short and now use powders to cover the bald spots. But, through it all, The Mole hairs stayed. Like weird beacons of hope, they stayed.

They're gone now.

In fact, my arms have become completely hairless.

I've been sick now for 19 months - 19 months to the day, in fact, of when I took my last dose.

In what might startle some, and always makes me exceptionally sad, I ask God to send me signs on the anniversary days - the 15th - of the month, to show me whether or not I am getting better.

Call it psychosomatic if you like (I really don't care what you call it), but on these days I have unfailingly been given signs of increased illness.

On July 15, 2016 - at exactly 11 months - when I asked for my first sign - I completely lost my sense of taste and smell. Completely gone. Overnight. This lasted for six months.

On Sept. 15, 2016 - 13 months to the day - my menstrual cycle arrived impossibly early, signaling the hormonal deficiencies I was developing. I also got piercing ear and neck pain at this time, which, to this day has not dissipated.

Today, The Mole stopped growing its hairs.

...

Friends, to this point I have fought and fought - haggardly holding on to the hope that this was going to improve. That my body was going to beat this thing and rebound.

That I'd be one of the ones to get better.

Sadly, this is not the case.

For many who suffer the poisoning, they catch it early and cease the medication.

Though I had symptoms from pill two - none of the doctors I consulted about the symptoms thought it was the meds. So I was continuously dosed. And, when I got incredibly sick and was hospitalized, I was dosed with more, powerful antibiotics and steroids (which are counterindicated with Cipro).

I was left completely disabled.

And completely unbelieved by a majority of the medical community.

Since that time, I have been consulting with other victims (most of whom saw some level of improvement) and doing my own research.

What I've found isn't promising.

To begin, I have permanent CNS damage. Know what the CNS is? It's your brain. I have brain damage, and that shit don't heal.

It's why I can't sleep. It's what's causing my vision issues. It contributes to my constant tinitis, sound sensitivity and headaches.

Secondly - and why so many are crippled for life - Cipro can alter your mitochondrial DNA. Mitochondria are the building blocks of, well, basically everything. If the DNA of the mitochondria is damaged, your body begins producing damaged cells to replace those cells that are dead or dying. So instead of receiving a steady stream of healthy replacement cells like all of you do, I'm getting damaged ones. And those damaged ones are making more damaged ones. Which make more. And now the damaged ones are outnumbering the healthy ones. Which is why I am getting ever-sicker.

Well, that and the oxidative stress.

Oxidative stress, for those who don't know, is something we all have. But the body uses things like antioxidants to combat the oxidative stress, so you don't break down over time. Naturally, to remedy my oxidative stress, I have attempted to up my intake of all antioxidants. But, as Cipro is the gift that keeps on giving, it has screwed with my body's ability to absorb and utilize antioxidants.

It has also affected the way my hormones etc attach to proteins.

This is a known side effect of Cipro, but it is nowhere on the patient leaflets.

It's also nowhere on the patient leaflets that it can permanently affect how your hormones attach to proteins and therefore distribute throughout the body. So, basically, my body is producing adequate hormone but, as it cannot attach to proteins, it's not getting where it needs to go to get used. And therefore healing isn't happening.

My bloodwork shows my body is doing everything in its power to heal. My histidine levels are through the roof - histidine is used by the body to create healthy tissues and protect nerves (I also have peripheral neuropathy from this BTW. Lovely.). But again, the histidine isn't being utilized properly by my body to get where it needs to go to heal me.

So my poor body exhausts itself with fighting - and I cannot sleep (Brain damage! GABA receptors destroyed) to rest and replenish it.

...

All of this I see when I look down at The Mole.

Or in the mirror at my balding scalp.

Or at anything really, as my vision is so profoundly affected.

...

I am struggling.

I am hurting - physically, emotionally, and spiritually.

But there is no help for me.

And, sadly, if my path follows those of so many other severely poisoned persons, I will likely continue to get worse and not better.

I'm not sure what I want from you readers. Love and support, yes. But, most likely, a testimony for when I am gone.

I want you to know what brought me down.

I want you to know what took me.

I want you to know that, no matter what happens, I did not go gentle into that good night.

I fought the only way I knew how.

I never fully abandoned God, though I question whether He abandoned me.

I held out hope, not wanting to be the "sore storm".

I loved with all I had, in my very imperfect way.

...

I guess all I ask is that you remember me.

Cipro has taken so much, but please don't let it claim the memories you have of me.

Sunday, February 26, 2017

Cruelty

Life's not fair.

But I was never warned that Life was also indiscriminately cruel.

Life gives lymphoma to children and "life" to Charlie Manson.

Life gives eviction notices to families and North Korea to Kim Jong Un.

Life delivers stillborn babies and $ billions to oil magnates.

Some turn to God for restitution and solace.

for earthly injustice and inequity are rectified in the skies.

But still, there are others

those in whose numbers I count myself

for whom Life and its monstrosities will not be metered out.

I harbor no illusions of a divine salve for my sufferings, Solomon's parsings over my plagues

Rather, I attempt to savor

grotesque beauty from the horror

Gossamer appears the chalk line

between Life's pleasure and His pain.

Tuesday, January 31, 2017

17.5 months out from Cipro Poisoning

Everything with an * is a symptom of dysautonomia/POTS, which I developed from the use of Cipro.

Vision blurs (Aug 2015)

Visual snow (unsure)

Visual light sensitivity (unsure)

Lightheadedness (late July 2015)

Syncope (Late July 2015)

Dry eye (Aug 2015)

Stomach pain/nausea (late July 2015)

Insomnia (August 2015)

Panic (Nov. 2015)

Burning in hands/feet (Aug 2015)

Numbness in hands/feet (Aug 2015)

"Queasy quads" quad pain (Aug 2015)

Daily fever (unsure) *

Tachycardia (Aug 2015) *

Variable blood pressure (Aug 2015) *

General flu-like feeling (unsure)

Profuse sweating (Aug 2015) *

Muscle spasms (unsure)

Heart pain/shortness of breath lying down (unsure but definitely by Dec 2015)

Hair loss (Aug 2015)

Tremors (Aug 2015)

Nerve pain throughout body (Nov 2015)

Vaginal pressure (Oct 2015)

Frequent urination (unsure) *

Cracking joints (March 2016)

Reynaud's Syndrome (2016)

Palpitations (Aug 2015) *

Flushing (unsure) *

Extreme dry mouth (April 2016)

Back Pain (March 2016)

Ear pressure/pain (April 2016)

Tinnitis (April 2016)

Burning pain in the skin (Feb 2016)

Osteoarthritis (April 2016)

Period discrepency (July 2015)

Widespread joint pain (April 2016)

Widespread tendon pain (April 2016)

Tooth pain (April 2016)

Head pressure (Aug 2015)

TMJ (April 2016)

Extreme dry skin (April 2016)

Tooth breaking (April 2016)

Bodywide itching (April 2016)

Extreme dry nose (May 2016)

Complete loss of sense of taste (July 2016) <-this has gone away

Complete loss of smell (July 2016) <-this has gone away

Burning like acid in the muscles (Oct 2016)

Goiter (Sept 2016)

Hyperthyroidism (Sept 2016)

Very sensitive hearing (Sept 2016)

I am terrified. I seem to match the progression on this chart - the blue line. The worst of the worst, according to "The Flox Report."

Sunday, January 29, 2017

Riddle me this...

Quick riddle:

When I pray in my Temple, it's in a foreign tongue spoken fluently (almost exclusively) in The Middle East.

My holy day is not Sunday.

Many of the devout of my faith wear hair coverings.

If you trace it back far enough, all of my ancestors are immigrants.

What am I?

I am a Jew.

But I could just as easily be a Muslim.

Given our present political climate, I think about this often.

As so many, including my rabbis, have pointed out - it was not so long ago that these anti-immigrant sentiments and fears were levied against the Jews - to catastrophic results. When we say "never again," we mean "never again TO ANYONE." Human beings have always feared - and persecuted - that which was different, that which the majority did not understand. And I see it happening today, even on my Facebook feed. Yes, to the Jews, but also to an alarming degree to Muslims. To this I say "never again."

I'm so tired. I am tired of trying to explain these things to people who refuse to see them. And I am also tired of trying to explain to persons of the majority what it is like - the little daily reminders - of what it means to live in any way outside of the majority. As I was not born Jewish, I believe I have a unique perspective on this. I lived as a member of the majority for 20-something years, and it's amazing how things begin to change the moment you decide to venture away from the majority path. It's an eye-opening revelation that cannot be fully appreciated unless it is experienced.

So I suppose, for the majority, the best way I can phrase this is as one, rather famous Jew said to the masses: "Love one another, as I have loved you." Majority folks (in the US, that means "Christians"), you profess a belief that a Jew - one chosen by God Himself - died to buy mercy for your immortal soul. To truly live his likeness - what does that call for in this situation? Jesus was willing to submit to very literal, physical torture, not for those who already believed and practiced as he did, but - more powerfully - for those who did not believe and practice as he did.

Sundays are the Sabbath for the majority.

So there's a Sunday thought for you.

Wednesday, January 11, 2017

Eulogy

Lord, imperfect beings, we

the faults within our stars

Heaven, it elusive be

from Venus and from Mars.

Celestial orbs bespoke our Fate

before Began was lost

Faulty though our model, make

Our cognizance, our cost.

...

When and how and if I go, let it ne'er be said

That I went gentle into that good night

Silent in my bed.

Instead I rage the Heavens down

or call the Darkness up

The ripple that becomes the wave

I take THY bitter CUP

Lord, imperfect beings, we

the faults within our stars

Fate these orbs to me bequeathed

the tortured soul of Mars

Furious I run into

The battle YOU have wrought

Like so many other of Your soldiers Time forgot.

And while I may not understand

the whys of Your great plan

the battle fraught with danger

is where I make my stand

And though I know I will not make

it to the Promised Land

I scream my screams, and reap my waves

As Samson, son of Dan.

Crushed beneath my arrogance

Your gifts, Lord

and Your punishments

My dying breath it will be spent

screaming

raging

fighting

beneath Your battlements

Like so many other of your soldiers Time forgot.

Saturday, December 10, 2016

NEED AN INTERPRETATION FOR A DREAM

I am in my new house (the one in which I currently live) and expecting company - Calvin - my hairstylist (who, in real life, I had just spoken with that day about purchasing a wig because so much of my hair has fallen out). Calvin arrives, but I am falling asleep and would like to stay asleep (even in the dream, I realize how precious sleep is, because even in the dream I remember I can never sleep bc of my brain damage).

So I am alternating at this point between trying to sleep and trying to entertain Calvin/show him around.

We go upstairs and Reba Olcott is there. (Reba is a friend from The Mayo Clinic pain management program, where I spent all of last April, being treated like a non-compliant hypochondriac). Calvin is in another room, so I continue the tour with Reba.

The house morphs and somewhat resembles a home I lived in at the end of high school.

We go into a room that is within the house where my brothers, sister and I lived previously (small), but in this dream it is a very large spare bedroom with walls made out of the drop-down ceiling material. I remember even in the dream being impressed at how large this spare bedroom was.

I go into the room and above the bed there is a lofted space with another bed. This shocks me. I never knew it was there before, but I smile. "This was Madison's secret room" or something like that I say to Reba.

For those who do not know, Madison is my sister who passed away in a car accident in 2007 when she was only 16.

At this point Calvin joins us just as I am wondering how to get up to Madison's room.

I see what appears to be a wire way up to the lofted bedroom on the back of the closet door, which most people would just hang shoes on. It was a shoe rack, but somehow I could climb it? I use that to climb up.

Calvin and Reba cheer me on from the ground, as suddenly the staircase becomes, like, some sort of bungee/highwire thing that I use to swing up to Madison's lofted bedroom.

When I get up there, there is a clear glass jar encased inside a giant grandfather clock. The clock is ticking, but I am staring into the vase, as I see Madison's reflection - a reflection of a picture she took in high school which now is carved into her tombstone - reflecting at me through the vase.

"Madison is here!," I say. I look down at Calvin and Reba - "Can you see her? She's right there! Can you see her?"

They both answer that no, they cannot.

I need to say here that this was a reflection of a picture - Madison was not trying to actually communicate with me in any way...

But then I saw it - from the urn inside the grandfather clock - there was a vein pulsing in Madison's neck. And the vein got bigger and bigger and bigger - pulsing as if it was going to explode.

And I realized, it was not a vein, it was MY GOITER - the one I developed back in September when the thyroid problems started coming on.

I woke, terrified.

I am frightened of what this means.

I am frightened it means my time on earth is limited, and something having to do with the goiter or some other part of my illness (the sleep, the pain stuff) is going to kill me. Or leave me bed bound, as I was in a secret bedroom.

I know it sounds like mumbo-jumbo, but Madison hasn't appeared in one of my dreams since right after she died. And the context of this dream was not comforting. It was not healing. It was terrifying.

And there is so much symbolism - the clock, the urn, the tombstone picture, the bedroom in the sky...

Clock, urn, bedroom in the sky - is this a death omen?

Does anyone out there have the power to interpret dreams?

Thursday, December 8, 2016

And you can tell everybody that this is your song

I have a debilitating chronic illness that I fear will kill or forever disable me.

That said, I am the luckiest woman alive.

See, in His infinite wisdom, God saw fit to grant me YOU.

You, friends, at whose wisdom, caring, compassion, patience, parenting skills, generosity I marvel.

Sincerely, I sit in awe of you.

I spend the hours that I am not terrified being instead humbled and amazed.

I know some people who are truly so remarkable that they may - and must - be among the greatest on the planet.

That is not hyperbole.

Shit situations tend to bring out the best and/or the worst in people.

And make no mistake, I am in a shit situation.

But from this situation I have gained perspective.

Not that I didn't know that you were amazing before... but perhaps my new situation gave me more time to truly ruminate on it. And gave you chances to shine through my darkness.

Either way...

As I type, I think of those persons who passed on before me and the lessons they taught. The bravery they showed. And I hope to one day even be a pale imitation of their example.

I think of those whose lives, lived however briefly, nonetheless had a profound impact on me.

And I am grateful.

I am grateful to those of you who stepped up and forward when I got sick - offering support from sometimes the most surprising of places.

I thank you.

As I type, I have friends going through the greatest of adversities - one friend suffered the loss of her husband and then was robbed within the same month. Her resilience is astonishing.

Another friend is donating a body part to a complete stranger.

Given a thousand lifetimes, I will never be able to fully comprehend that level of compassion. Or why someone so spectacular has found it in her heart to love me.

Another friend fought her way through every kind of abuse and through homelessness to become the first college graduate in her family. And though it was a different fight than my own, I hope one day I can show even one iota of her strength.

I have a student in my life who has grown into the most incredible young woman. As smart and beautiful as she is brave, it is a goal of mine to one day be actually deserving of her admiration.

And then there are a few who have stepped out from the shadows to offer me kindness and support when they know I am not able to return it. Each of you taught me the meaning of true, selfless caring and compassion.

It is through YOU I have seen God's grace.

For the past year and a half I have prayed over and over and heard nothing.

I have felt God abandon me to my fate.

But when I look to the left and right of me, I see the Gifts of the Spirit shining through people who, for whatever reasons, were placed in my life, and my resentment turns to gratitude.

I passionately love each and every one of you.

I stand in awe of you.

Thank you.

Thank you.

Thank you.