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.

Saturday, November 12, 2016

When something is actually important, I can never find the words

Jesus healed the sick.

Moses parted the Red Sea.

And, now, ladies and gentlemen, I present my own miracle:

I successfully changed someone's mind via Facebook.

...

No, seriously.

...

Over the course of my life I have received a handful - maybe 8? - letters from people whose lives I have somehow touched.

Tonight, I received one such letter.

The note came to me via Facebook, and thanked me for having the courage to stand against the closed-minded and combat them openly with reasoned argument.

This stranger, who lives in Michigan, said she was moved by my stance, and would no longer be silent should she ever again witness inequity or injustice.

Though still extraordinarily sick in my body, in my heart I feel better than I have in a long time.

For why are there 7 billion of us on this planet if not to interact with and learn from each other?

And the idea that some - however few - of my ideas and experience are worth learning from is incredibly humbling.

And awe-inspiring.

In truth, I cannot fully grasp the concept that there is power in my ideas...

I don't think there is a greater calling than to positively impact the life of another.

That said, I want to publicly (as much as is decent) thank the woman for reaching out. For in doing so, she touched me as well. She brightened my day. She gave me something of which to be proud.

So I was blessed by her outreach.

There are likely a thousand lessons that can be extrapolated from this interaction. Glean from it those lessons that strike you as most profound for your own situation.

But in the mean time, I hope this little missive has convinced you that there are, in fact, modern day miracles.

Now go forth, my friends, and argue on Facebook!

Thursday, November 3, 2016

Perspective: That's One Way To Look At It.

Throughout my illness, I have wondered "why me?". What happened to me is relatively rare... Many of you have taken the drugs that decimated me. So why did you escape unscathed?

But here's the thing - I had the craziest, most lunatic thought - all of the terrible shit I am experiencing - most if not all of you will never experience it. I envy you this... but it also makes me... special. Freakishly special, but special. It gives me a unique perspective that most will never understand or be able to share.

Don't get me wrong - I'd trade my immortal soul to undo what's been done - but it's something positive I've been able to take from this. I've always valued experiences over all else. I wanted my experiences to be all adventures. And in a way, this is an adventure. A terrible, godawful, wouldn't wish it on Pol Pot adventure.

This adventure might kill me. That's not hyperbole. But then, I've skydived and that might've killed me. And bungee jumped. That might've killed me.

I told Scott the other day that, had I remained healthy, I would have lived the last year and a half completely differently. Had I, there's no telling what could've happened to me.

Not to trivialize, but it's sort of like that not-so-great movie "Sliding Doors" where Gwenneth Paltrow's life is greatly altered by whether or not she catches the train. Each "life" that follows - the one where she makes the train and the one where she doesn't - has its positives and negatives. I guess that's the nature of life. All of us will be dealt a mixed hand.

I'd do anything - anything - to change the hand I've been dealt. But even now - with every system of my body affected - with no help of treatment - with little recognition of my man-made "disease" - I live. It's a life of pain... but...

My sister died in a car accident when she was 16. Fortunately, she was killed instantly and did not suffer. But she only got 16 years. I was granted 34 healthy years. I still feel robbed. 34 is still so young. But I got more than double what Madison got. Why?

These are my attempts at positive thinking.

They're feeble - I'm aware of that.

But, frankly, I am very low on hope. The more that goes wrong, the more I fear and despair.

Maybe I shouldn't be so candid about these things. But "Tuesdays with Maury" was a best seller. I think people are actually very interested in people's perspective's when they're sick or dying. Whether it's healthy or not, I think people kind of want a mental crash course for when or if it ever happens to them.

And, after all, I didn't think it would happen to me. Odds are very good such a thing will never happen to you.

Please count your blessings every day. No matter how small.

Things I took for granted all of my life - like a good night's sleep - would be so precious to me now.

Embrace your children. Some don't have the luxury of having them.

Clean your home. Some people can't.

Love your body, no matter its imperfections. You may have to lose 30 pounds. Who fucking cares? If you can walk and sleep and breathe and see... you have no idea how lucky you are.

I never thought my "happy thoughts" would be along the lines of "I may go blind. Helen Keller was blind. Erin, you may have to learn to navigate the world with no eyes. If you do that, you'll be one of the strongest people you know."

I've always said I'd rather be weak with an easy life than strong with a difficult one. Life thought otherwise.

Pray for me. Pray for you. And for each other.

Things have gotten so contentious lately. People hating each other over the growing political chasm. Realize your hate is a luxury. That you can focus on and have the feels about the shit spew a politician oozes... this is a luxury. If you thought you were losing your eyes... suddenly there are bigger things than small people with small ideas.

I'm rambling. I've likely lost you by this point.

I don't want to fade.

I don't want to die.

If I go, will you remember me?

Is my struggle worth something? Or is it for naught?

I just wanted a home and a family with my husband.

I don't want to fade.

I don't want to die.

If I go, will you remember me?