Saturday, December 10, 2016


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?

Wednesday, November 2, 2016

Desperately seeking something

I can tell you about the pain

the torment

the fear

but is that all I have to say?

Where once my mind was free to ponder the intricacies of the universe and the human condition - at least as I understood (or tried to understand) - them

it's now consumed with fear

of what horrors await me

and regret -

most potent -

of what I would do differently

of the signs I missed or ignored.

Occasionally I allow a dalliance into the life I'd have

if I hadn't taken the pills

or if I'd stopped at two

when the side effects started.

The memories are so vivid,

I feel I could reach out and touch them

which makes me think I can change them

because they're still within reach.

Aren't they?

But then, I always feel this way

with every tragedy of my life.

For years Madison seemed to be just beyond the veil

a mere inches from my fingertips

just past the curtain on the plinth.

I know I want to say something

that will stand the test of time

and tell my story when I am gone.

I want something to stand here in my stead

when I can no longer stand

or speak

or think.

I want immortality in that way.

I want to matter.

I thought, when I took those pills, that I had more time

to make myself matter.

But Madison already taught me better.


We lost Andrew too early.


Yes, I cannot say I was not presented with the lesson

the question

of legacy.

And what will mine be?

A tragedy?

One defined by its ending?

By its sharp curve in the road?

By what should have been?


I see them sometimes - the children I might have had


I have to stop there.

Even I have things I cannot share.

I can tell you about the pain

the torment

the fear

but is that all I have to say?

Thursday, October 27, 2016

I want to know what love is. I want you to show me. Or - how do you admire something you do not understand?

Often when a loved one is ill, those closest to him/her say something along the lines of "If I could take it away, I would." or "If only I could carry this burden, then you wouldn't have to."

Such statements baffle me.

Frankly because - if the are true - they mean you, whoever you are, are LIGHTYEARS more selfless than I.

Because if someone I loved got hit with what I presently have... I would struggle mightily with being able to say that I wished it was me instead of the other person.

I'm quite certain this makes me an asshole.

But this is a confession of sorts.

My attempt at being true.

I love my husband, my dog, and my family with an intensity that I cannot explain... but if I had the chance to be rid of this cornucopia of maladies by passing them off on another, I would.

It'd be with a heavy heart, mind you. I'm not a complete monster.

But if I could reclaim the health I lost by transitioning it off on a good samaritan offering to carry my load, I would in a heartbeat.

So for everyone who's offered to take this on for me, you best be glad God doesn't work that way... 'cause I'd feel bad about it, but I'm pretty sure I'd hand over this shit to anyone willing to take it.

That also said, if someone I loved was suffering, I don't think I could say with sincerity that I'd be willing to take on their burden.

Help to the degree I am able?


Step up my game? Provide love and support? Even fucking COOK for them?

I'd do it.

But I would want to walk in their shoes.

And I cannot imagine a love so selfless that someone - anyone - anywhere would want to walk in mine.

Maybe y'all are just WAY better at this than I am.

Maybe you know what love is, and I don't.

Maybe your soul is more grown up than my soul and maybe I'll get there someday.

I don't know.

But for now, you should know, you're better than me.

And I can't say I even admire you for it.

Thursday, October 20, 2016

Anywhere is

Thousands - maybe millions - of people suffer from chronic illness.

We are not alone.

But we are so desperately, hopelessly alone.

I am desperately, hopelessly alone.

Both in my daily solitude - laying or sitting at the house, feeling a constant mixture of terrible and terrified

But also when in company.

It's not your fault... but I look at you... and I see what I used to be.

What I used to take for granted.

What I'd do anything to recover.

When you speak to me, despite your attempts to draw near, we remain helplessly, hopelessly galaxies apart.

It's not a competition - suffering

But even among my chronically ill friends, I seem to be separate.

For there are meds and methods and BELIEF for your illness

An illness, which, most times, your own body caused.

You bear no guilt

for your organic sickness.

But me?

Medicine made my illness

But it will not or cannot unmake it.

It certainly cannot manage it.

You cannot manage what you do not understand...

"I think I have an infection" - the words ring in my ears every day.

Not even the tinnitus can block it out.

My guilt.

I broke my beautiful body.

And it's still breaking...

Like my heart and my spirit.

I am so miserably, desperately lonely.

So often I have thought of Jesus - deferential Jew left lonely on the cross.

Joined by two others, yes, but still hopelessly, helplessly alone...

"My God, why have you forsaken me?"

I am in despair.

I am Judas.

But I cannot see the way out of my cage.

Physically and emotionally damned.

Each time by my own hand.

"Despair is the ultimate development of a pride so great and so stiff-necked that it selects the absolute misery of damnation rather than accept happiness from the hands of God and thereby acknowledge that He is above us and that we are not capable of fulfilling our destiny by ourselves."

I am alone in this cell.

Even among visitors, I am alone.

We all die alone.

But I never wanted to live this way...

Wednesday, October 19, 2016

Death becomes her?

Sometimes, when I look at photos from before I was poisoned, I feel so far removed. Like the person in the photo isn't - and wasn't ever - me. Whoever she is, she's a stranger. And she's dead.

She'll never be in another picture again...

Tuesday, September 27, 2016

Please God intervene

Cipro has given me thyroid issues now.

I am continuously declining.

Please, please, please pray for a miracle of healing for me.

This is my fault.

I asked if I could have an infection, despite having no signs of infection - increased white blood cell count, fever etc - and doctors took me at my word.

Now I am poisoned.

And it isn't acute.

It's getting worse as time passes.

Please, please pray for a miracle.

Tuesday, September 13, 2016

The price is too damn high

You already know I blame myself for this.

I blame myself for walking in the doctor's office and asking if it was possible that I had an infection.

I blame myself for taking the drugs despite reading the warnings.

I blame myself for pursuing hospitalization because I was so scared and sick.

My only defense really has just been that I was sick and scared and wanted help.

My ignorance lead me here.

But today I checked in with a former doctor of mine to see what kind of antibiotic I had been given in the past which may well have saved my life (I had been getting worse and worse from an infection that no specialist was recognizing as such. Finally a doc gave me a trial of antibiotics, and I was healed.) Anyway, this antibiotic is Clarithromycin.

When you read the fine print, clarithromycin can cause severe allergic reactions, infection with other bacteria (Clostridium difficile-associated disease), ear problems (dizziness, hearing loss, ringing in the ears [tinnitus]), liver abnormalities (cholestatic hepatitis), lower numbers of platelets in the blood (thrombocytopenia, lowered clotting ability), inflammation of the pancreas (pancreatitis), slowed heart rate...

That's some scary shit.

And THAT is why I agreed to take Cipro, even having read the side effects.

Because seemingly all drugs - especially antibiotics - come with terrible potential side effects including things like - and I swear this is true - GOING DEAF!

But I had never had a problem with any antibiotic. So I thought I'd be fine. I also thought that, if I DID have a side effect, I could just stop the drug and the side effect would go away.

How very, very, very wrong I was...

And maybe that's what separates the quinolone class from other antibiotics. With many of the others, if you have an adverse reaction, it ceases when you cease the medication.

Not so with Cipro.

I know the guilt is merely another layer of awful I shouldn't take on.

I already hurt so much in so many ways.

But I miss who I was and what I used to be able to do... like sleep. And walk without any pain. And have a full head of hair. And see clearly.

Not a day goes by that I don't go back to late July 2015 and scream to myself, "Don't take it! Throw it away!"... Sometimes it almost seems feasible. Like if I want it bad enough, it will happen. Like it's all just been a bad dream. Like I can will myself into time travel...

Please pray for me.

Please know that if you lose me to this that I really did try as hard as I could.

People tell me I'm strong, but I don't want to be strong... I don't want to have to be, I mean.

I just want to be well...

Tuesday, August 16, 2016

the Woe of Leigh

Vivien Leigh was manic depressive. The disease was very misunderstood in her time, and she was subjected to electro-shock therapy. The damage was such that she would have episodes of insanity, where she truly believed she was the characters she played.

I think about Vivien a lot these days. I wonder if she would have been okay if not for the shocks. I wonder how many lives "modern" medicine has ruined. And yes, of course, I know... there are many it has saved.

Still, I can't help lamenting Vivien's fate. I can't help lamenting my own and the fates of others who were the "rare" cases of disastrous medical calamity.

I really need prayers, guys. I've had more than a year now to find the words to convey what is happening to me. They fail. For you can't write horror in words. Not really.

Maybe if enough people ask on my behalf... maybe then God or the Fates or the Universe will agree to mercy and healing.

For perhaps the first time in my life, I wish I were nothing at all like Vivien Leigh.

Thursday, August 4, 2016

Severus Snape

I'm afraid God is calling me to suffer like Severus Snape.

I made one enormous, unforgivable mistake, and now I must live the rest of my life paying for that mistake.

There is no healing.

There is no comfort.

Just the knowledge that I screwed up royally and, no matter how much I may wish it, I can never take it back


I wanted to be Fawkes, rising from the ashes, reborn.

But Dumbledore remains mostly silent.

And when He does speak, it isn't words of comfort.

I am not the chosen one.

I will not die then rise again.

The poison is in me.

It's IN me.

Killing me slowly.


And Dumbledore isn't here to help me...

Tuesday, July 26, 2016

Mirrors hurt...

My hair continues to fall out.

My scalp continues to look angry and red.

11 months of this.

I feel so ugly and so sick.

To the left is an image of my hair just two months ago. On the right is my hair today.

I am only 35.

So ugly. So sick.

Sunday, July 3, 2016

Do no harm


Sleep deprivation is considered torture for a reason.

In the past 18 days I've slept 97 hours with the use of heavy, prescription sleep aids.

Assuming the average person sleeps 8 hours per night, the average person got 144 hours over the past 18 days.

Friends, I feel like I am dying.

Very sincerely, I feel like my body is slowly rotting away.

Between complete inability to sleep and the other more than 50 symptoms of pain and body-wide dysfunction, I am astonished I am still, in a medical sense, alive.

I lose handfulls of hair daily.

The bald spots have gotten so bad that even my comb overs aren't hiding the loss anymore.

I look like a cancer patient.

And, in some ways, I may be.

Because Cipro has been proposed as a cancer drug. Why? Because it prevents DNA from replicating.

For a true cancer patient this could be good - miraculous even. It could stop tumor cells from replicating.

But what happens when you give it to a healthy person?

Healthy cells stop replicating.

Hair falls out en masse.

Unrelenting insomnia sets in.

Soft tissues - tendons, cartilage, organs - all destroyed.

Nerves are destroyed.

Eyesight is ruined.

Even bones submit and deteriorate.

If you're lucky you're only given one or two pills...

I took 14.

Plus 6 other very strong antibiotics.

Plus IV steroids.

My body has been annihilated.

Those who have seen me say I "look healthy". Maybe a little tired. Maybe a little worn.

But they can't see the terror - because lately I have tried to hide it.

I try to hide the sick inside because no one wants to hear it.

No one wants to see it.

No one wants to be reminded of mortality or of the fact that I am sick.

Because Erin Greer wasn't sick a year ago today.

A year ago today, Erin Greer had no idea what was in store for her.

She was planning on attending Fourth of July festivities.

She was blissfully healthy and happy.


On July 12, 2015 she noticed abnormal uterine bleeding.

On July 18 she made her first trip to the ER because her abdomen was swollen, the bleeding hadn't stopped, and she was fainting.

On July 28 she made the fateful trip to the gastro who would prescribe her 5 meds with no tests. She'd doubt his efficacy and methods, but she'd take the Cipro anyway.

In three weeks, she would be one hospitalization, 7 antibiotics and IV steriods into what has since been a life of indescribable pain and disability.


But she smiles when she sees you.

She wants to spare you her pain.

She wants to spare you the glimpses into the life that was decimated.

She, instead, brings her worries to God.

He doesn't answer.

Or - worse - His answer is "no."


With no sleep and with my body becoming "immune" to the meds that help - with daily pain and dysfunction and hair loss - with crippling fear and anxiety - and with the knowledge that many people with Cipro poisoning continue to develop new symptoms and disorders for YEARS after taking these medications ... knowing all of these things, I fear I may not live through 2016.

That I express these fears in any way publicly dismays my family and those who love me.

But if it comes to pass that I pass... well, I don't want it to be such a shock.

I love life - I loved the life I had with Scott; adventuring and loving and looking forward to a life with a happy home and family.

Those were the things I prayed for.

Nowadays I just pray for relief.

I pray for those things I always took for granted - 8 hours of sleep, the ability to see clearly, the ability to walk as much as I wanted or go where I liked, the ability to eat what I wanted...

Please pray for me.

Ask God please to speak to me. To comfort me. And - if it be His will - and I hope against hope and pray against prayer that it is - that He heal me.

I am not well.

And my body tells me every day - every sleepless night - every limp lump of hair that circles the drain - that I am very, very sick.

I don't know what else to say or how long I have left to say it...

Wednesday, June 29, 2016


In any narrative, I try to assess which role, if any, I would play. In the HP series, I most identified with/saw myself playing McGonagall, the smart, shrewd, strict headmistress with a soft heart and an ability to transform herself when she saw the need.

But there was always another character with whom I identified - it was just a role I never thought I could play...more on that in a minute...

Vivien Leigh once said Scorpios use themselves up and burn themselves out. Vivien played the first character with whom I ever identified - Scarlett was truly the start of my "game" - and that quote of hers always struck me. While not a Scorpio, I also use myself up and burn myself out. But what happens once someone burns themselves out? Sadly, I know the answer for poor Vivien, but that cannot be the answer for me.

I cannot be broken that way...

In any narrative, I try to assess which role, if any, I would play... and there was always a character with which I identified... a character who, even more than Dumbledore, filled me with peace, strength, and hope. It was just a role I never thought I could play.

But I've played a bird before...

And now I think it's time. I think it's time to try. For I have been burned out... but there is hope, power, redemption, and life among the ash...

Tuesday, June 21, 2016

Living Water

June 10 I took a spiritual step I've worked toward for five years.

After defending my choice before three rabbis, I immersed in my mikvah bath and became a Jew, recognized by the Jewish people.

That evening, I stood before the congregation, held the Torah, and received my blessing as a daughter of Abraham and Sarah.

It was a truly blessed event in my life.

I know I'm not going into great detail here. I may, at a later time, in Convert The Masses, but I wanted to share this important aspect of myself with my readers.

Please let me know if you're interested or have any questions.

Wednesday, May 25, 2016

Fluoroquinolone poisoning and fear

I need to get out of this nightmare.

But there is no way out.

All there is is time, and whether or not time will provide me with healing or will leave me as one of the disabled ones.

In recent weeks, I have developed severe dry eye, dry nose, and dry mouth.

According to The Flox Report, these are bad prognosticators with regard to potential recovery from my fluoroquinolone poisoning. Click on the images below to view larger).

I haven't slept in 2 days despite multiple sleep aids.

Why? Because fluoroquinolone antibiotics can cause - and have caused in me - central nervous system damage.

I have a "floxed" friend who still cannot sleep more than 2 hours a night. She took her fluoroquinolone antibiotic 7 years ago.

This scares the shit out of me...

Frankly, many of the people I read about who get better are people who have a severe acute reaction, but who are improving by 6 months or so. The Flox Report has a chart for this also. Basically, if you're seeing improvements by month 6, that's a good sign. If, like me, you have new and worsening symptoms by month 6... well, it's bad.

Many severely poisoned persons like myself never get better. Some do get better, but it takes years. Because of my dry eye, nose, and mouth syndromes, I am very very frightened that I may never improve. I have between 40 - 50 symptoms presently, and new ones come on all the time. I have huge bald patches on my head.

I have so many symptoms that only the worst of the worst poisoned people get.

I need help, but there is no help for me.

Fluoroquinolones damage mitochondrial DNA. If too much is damaged, you live a life of disability.

All of this pain, and I never even had an infection...

Here is a rundown of recovery for severely poisoned persons, if they ever recover at all.

I fear I may, based on my timeline and symptoms, be the blue line on this graph. Which is, according to the report, the worst you can be:

I pray, I try to eat well. I supplement. I try to take as few medicines as I can just to make it through the day. Nothing helps.

If it'll let you know what I am dealing with, here's a relatively comprehensive list of my symptoms, though I am sure I have forgotten some:

Blurred vision

Inability to see clearly

Floaters in vision


Pain behind the eye

Severe dry eye

Dry mouth

Dry nose

Severe insomnia



Extreme panic attacks

burning in the hands

burning in the feet

numbness in the hands

numbness in the feet

"queasy quads" - a feeling as if my quads are being electricuted

Fevers or chills every day - temps range from 98 degrees to 100.4 degrees


Variable blood pressure

General flu-like feeling

Profuse sweating

Muscle spasms

Heart pain/shortness of breath

Extreme hair loss

Internal tremors

External tremors

Night terrors

Nerve pain throughout the body. Feels like sunburn or something.

Vaginal pressure

Frequent urination

Cracking joints throughout the body

Reynaud's syndrome



Back pain

early onset osteoarthritis

Ear pressure/ ear pain


widespread joint pain

body-wide tendon pain

tooth pain

Tooth breaking

head pressure


dry skin

Bodywide itching

Each day I feel as if I am dying. And I cannot even get any sleep.

You know the above is not even a comprehensive list of everything fluoroquinolones can cause?

I am really, really struggling. I am really, really suffering.

Doctors often don't believe me. Or they will try to associate 1 or 2 symptoms with something else instead of looking at the whole picture. Like with my hair loss. They keep saying stress can cause hair loss. Well, yes it can. But it doesn't also cause scalp redness and baldness in patches. It also doesn't explain my other 50+ symptoms that all came on after taking the fluoroquinolone and steroids.

Someone please tell me I will still get better. Even if I am the worst case scenario in The Flox Report. Please, please - even with the dry sicca syndromes - am I going to get better? Please don't let me be permanently disabled and bedbound. Please.

Monday, May 16, 2016

Game of Thrones

In my house, the forbidden 4-letter "F" word is "film."


Because FUCK film, that's why.

As a youngling there was nothing I wanted more than to be involved in making movies.

That may be a lie. I probably would have accepted life as a mermaid or the gift of my very own personal unicorn at some point... But at least by fifth grade and my first viewing of "Gone With The Wind," I knew that set life was the life for me.

What are you in fifth grade? Like, 12? So I guess by 12 I knew that magic - at least the mermaid and unicorn kind - wasn't real. But movie magic sure as hell was, and I wanted to do it.

You know when Blanche DuBois says,"I don't want realism. I want magic! Yes, yes, magic!"?

Welp, that was me.

And for those of you astute enough to be counting, that's my second Vivien Leigh reference. For those even astuter (or just more well-versed in Erin's Inspiration Trivia), you'll know that Lady Olivier is the nail in my proverbial I-wanna-make-movies coffin.

But The Vivling isn't why I am writing this post.

Game of Thrones, ladies and gentlemen.





So I am new to this bandwagon.

Don't get me wrong, I tried to jump on when everyone else did, but those bastards killed a dire wolf in episode two and that pretty much killed me, so I couldn't go on for a few years.

But now, at the insistence of my brother, Hack McNaggins, I've decided to give the series another go.

And it's awesome.

The writing is (usually) superb, the characters well-defined and well-acted, the sets and special effects immaculate, and if the DPs aren't award winners they sure as fuck should be.

What I am saying is, I am really enjoying the show.

But that's not why I am writing either...

Remember at the beginning of this ramble when I said, "Fuck film"?


Those who know the Vivien facts also likely know the film facts - that I gave it up a few years ago. That the fake people (there's another vulgar "f" word for you), the backstabbing, the insecurity... I just couldn't take the people or the tripe.

I've always been a writer. Even back to my mermaid days - the days before GWTW and my obsession with film - I was addicted to a good story and I knew I wanted to write one.

Or one thousand.

But, like Margaret Mitchell, I figured I could settle for one.


That's about as arrogant as I get, folks.

It makes me laugh.

To think I would "settle" for a story like "Gone With The Wind."

I must be out of my damned mind.

Anyway, story was and remains important to me.

And I wanted to get involved in film to tell stories.

A naive purist, I thought filmmaking was about making art - telling a poignant story in the most artistic way possible.

Folks on sets weren't "crew", but "artisans." Michelangelos bringing the plot points to life. Builders of worlds. Makers of dreams.

I wanted to do that.

So I studied and practiced. I performed. I became an apprentice at a professional theater company. I got an agent. I got a Master's Degree in film.

And I got disillusioned.

My experiences on professional sets were not movie magic.

More often, they were exercises in frustration.

I've gotten into the intricacies of those frustrations in other posts, but the Cliff's Notes version is that, like Blanche, I don't want reality. Reality bites. I want magic. And you don't get magic from snipey tripe. You just don't.

Anyway - Game of Thrones.

So, I'm into it, and I am feeling the magic.

I know, I know, days on set are likely long and arduous and there are fights.

It's real - dammit all.

But I am presently watching the Making of Game of Thrones.

It's G.O.T. from the vantage of the magic makers - the cinematographers, the prosthetics masters, the costumers, the set designers, the CGI folks...

THIS, ladies and gentlemen, is where the magic happens.

The glory typically goes to the actors - the folks whose faces you know and recognize.

And they play their parts - double entendre intended.

But I find myself really drawn to those folks behind the scenes. (Again, double entendre intended).

For these folks, the art lives. And the art is the driver.

Watching these folks in their workshops inspires me.

It reminds me of why I pursued film in the first place.

And I miss it.

Finally, years later, I miss film.

I never thought I would.

I never thought the film flame would flicker in me again.

But it has, and it does.

And I am thankful. Thankful in a way I don't really understand as yet.

I just know I like the feeling.

Thank you, behind-the-scenes artisans.

You've allowed "film" to rejoin the other 4-letter "f" word in returning to my good graces.

Maybe one of these days I will make some more fucking films!


Tuesday, May 3, 2016


I cannot seem to stop reliving the past - specifically, the mistakes I made that lead me to this...

I must confess, I feel it is my fault. Or, if not my fault, then certainly the result of action I took, which, at the time I hoped were in my best interest.

Hindsight is 20/20.

And so was my vision - before I was given 7 potent antibiotics plus steroids last August.

How did this happen?...

Well, this story actually likely starts back in 2009...

In 2009 I had a tooth pulled. No muss, no fuss.

But in the days and weeks following the pull, I noticed I was getting headaches every day. And that's not normal for me. As the headaches progressed, so did a pain that ran down the entirety of my left side (the side from which they pulled the tooth). I had head pain, neck and shoulder pain, and then pain that ran down my left leg. My vision went blurry.

I knew something was terribly wrong so I went to the ER. Twice. They found nothing wrong.

I went to neuro specialists. They found nothing wrong.

I asked one: could this be from the pulled tooth? Might I have an infection?

If you had an infection, you;d know it, came his snide reply...

Finally I went to an internist who listened to my tooth theory. While she couldn't prove infection, she prescribed me antibiotics. One to two months' worth, in fact.

By the end of the two months, I was completely healed. No more pain, no more headaches, no more blurred vision.

Antibiotics saved my life...

I think it's important to keep that in mind as I tell the rest of my story...


July 12 - black uterine bleeding presents. I've never had this happen before and am terrified. Call my OBGYN. Office girl says it's normal and it should subside.

So I wait...

July 18 - black bleeding still present. Suddenly abdomen balloons. I get very nauseous. It becomes impossible to eat. After just a bite, I feel uncomfortably full and nauseous. I am shaking and sweating profusely. Fearing something is very wrong, go to ER. In the ER they scan and find I have cervical polyps - this is the cause of the bleeding. No cause is found for nausea. Sent home with nausea meds.

July 20 - Have polyps removed by Gyno. Am assured I will be feeling 100% ASAP. Says not to expect more bleeding but he will send off my polyps to have a lab confirm they are cervical and not uterine.

Week of July 20 - nausea, profuse sweating, belly distention and high heart rate continue. As does bleeding. Start to feel woozy often. Polyps come back from lab. They are uterine. I will need minor surgery.

July 24 - Go to the ER again for same symptoms. Again, they can find nothing wrong in blood tests. See another gyno for second opinion because first gyno says nausea etc are all "nerves." Want to make sure he is right and that the polyps are my only problem. Second gyno confirms polyps are all she can see and prescribes a hormone to help stop my bleeding.

Weekend: take hormone, have leg cramps. Call second gyno who says leg cramps are not a side effect of hormone. I tell her I have the side effects sheet and it lists leg cramps as side effect of hormone. She informs me - very rudely - so much so it made me cry - that I should 1. never read the warnings and side effects because doing so would just make me never want to take medicine again and 2. that my nausea, sweating, fainting etc are "all nerves", but if I "insist" it's something else, I should go see a gastro.

I should stop here for a moment and say this was a deciding factor for me - this advice. Not only did it lead to everything that followed, but it also played a role in me taking meds I didn't trust. Why? Because I didn't want to be ridiculed my doctors again.

July 27 - make appointment with gastro. Make sure gastro is in same system as other docs so everyone has all records. Full on faint for the first time and spend the rest of the night nauseous, unable to eat, in the bed.

July 28 - Another ER trip. Same results. Can't figure out what's wrong. Go to gastro. HERE IS WHERE MY MISTAKES BEGIN. I tell gastro of the medical history thusfar. I tell him I cannot eat, am nauseous all the time, am fainting, am bleeding. I tell him the nausea etc came on about a week after the bleeding started. I tell him I think I must have an infection, because it came on so suddenly and I am feeling so terrible. Gastro gives me 5 prescriptions. 5.

At this point, I already think this is overkill. He does not tell me what's wrong with me. He doesn't even do any tests. He tells me he wants me to get a colonoscopy (why?) and an EGD and in the mean time to take the meds.

Cipro 2x a day for 14 days. Flagyl 3x a day for 14 days. Reglan multiple times a day. Prevacid. And I think the last med was a nausea med or a constipation med.

I get the Cipro, Flagyl and Reglan filled. The Prevacid he gave me in samples. I read the warnings on each med. Each of these meds has a BLACK BOX WARNING.

This is my second mistake.

I don't trust this dr. I know he hasn't done any tests, and I think 5 meds is crazy to give someone. Even if something works, how do you know which one it is?

At this point I also didn't know what a Black Box Warning was. But I saw that all of my scripts had one. So I thought - damnit - that every med had this kind of thing on it. I thought that because, as I said, all the meds he gave me had one.

Among the warnings were: Cipro - could cause tendinitis. Flagyl - could cause neuropathy. Reglan - could cause uncontrollable muscle spasming. I remember telling Scott I was scared of these side effects. I asked if I should take them... but I was feeling so bad - and I had never had a problem with antibiotics before - so I did as the dr. said.

Week of July 28 - I emailed the gastro several times, both to report my progress (I was feeling better, but I didn't know which med was doing it) and to report that I now had numbness in my hands and feet (this was a HUGE warning sign that he and I missed. He told me I should see a neurologist about the numbness. He didn't tell me it was the meds he prescribed that could be causing it) and a lump in my throat that wouldn't go away. The doc said to cease Cipro because it could cause the throat lump, but I found by process of elimination that it was actually the Reglan that was causing the lump in my throat. But ceasing the Reglan also made the nausea come back full force.

I reported this to my gastro.

This was an important clue. Reglan is used to treat gastroparesis. That it was helping my symptoms was a neon flashing sign that what I was suffering from was gastroparesis - where your stomach and intestines are not moving food through quickly or efficiently.

The gastro said he had an alternative for Reglan - erythromycin - that he didn't want to start me on because erythromycin is an antibiotic and I was already on the Cipro and Flagyl. He should have discontinued C and F and moved me over. If he had, none of the rest might have happened.

Aug. 2 - Back at ER. Despite C and F I am still crazy nauseous, lightheaded, faint, sweaty. My belly is still distended (again, from gastroparesis). ER gyno on call comes down, gets me off the C and F and instead puts me on Doxycycline. This is a just in case measure, it seems, because none of my cultures come up as having an infection.

Aug. 7 - surgery day. I still feel godawful and cannot wait to get these polyps out so everything will be back to normal. I remain convinced that when the polyps go, they'll take the nausea et all with them. While under anesthesia, I am given an antibiotic to prevent infection. For those of you who are counting, that makes 4 antibiotics in about two weeks.

Week after Aug. 7 - I am told the bleeding will cease in a few days. It doesn't. As I said, I believed the nausea et all would go away with the polyps. After all, the two gynos had said it was just "nerves." Now that everything was over and done, no more nerves right? So why was I still so freaking sick?

Aug. 10 - Still bleeding. Still distended stomach. Still nausea. Still faint. I email the gastro. He wants to start me on erythromicin. I am scared and skeptical because he has already prescribed so much. So I don't follow up with him. I likely should have gone with the erythromycin, based on what happened next.

I call the gyno office because I have been having some difficulty with pain during urination. In retrospect, this was likely from the surgery and should have gone away in time. But this was my NEXT BIG MISTAKE. I told the lady on the gyno phone that I was having difficulty peeing and it might be a UTI. She said she'd prescribe me an antibiotic. I told her I had some antibiotics at home since I had been given some previously. Which ones, she asked. Cipro and Flagyl, I said. Cipro oughta do it, she said.

Aug. 15 - I am in Baltimore with Scott on a trip we'd planned for months. I seldom leave the bed. I cannot eat. Suddenly the numbness in my hands and feet becomes burning pain. And my quads feel like they have been ripped to shreds while inside my body. I have no idea what's going on but I am very, very sick. And still bleeding. I finish the Cipro.

Week of August 15 - I go to Urgent Care about the blood and the pain. I am terrified something is very wrong. I am terrified I have something like Pelvic Inflammatory Disease because I am still bleeding and shouldn't be, and I otherwise feel so bad I am in sincere panic that I may die. Scans continue to show nothing. No one can tell me why I am so ill.

I go to see another gyno - one my mom recommends. The woman gives me an exam, sees how sick I am, and hospitalizes me. While in the hospital I am given 3 more antibiotics via IV (in the event I do have Pelvic Inflammatory Disease, despite negative cultures) and also a hefty dose of steroids so that I can take an iron infusion because I was so low. I go along with all of it because I am so sick and I think if I am in the hospital they are going to "fix" me.

This was likely the nail in my coffin.

Three days later I am discharged, still sick as ever, and suddenly my vision - again, 20/20 previously - goes blurry and won't correct.

Since then, I have been stumbling from dr. to dr., research to research, to figure out what the hell happened to me.

To this day, I have no idea why I continued to bleed for 70 days. Or why my period - once regular as clockwork, went haywire and hasn't recovered.

But what I have learned is this - I had a very stressful 2015 - moved twice, switched jobs, planned a wedding. I got sick a lot in 2015 as well. And for those illnesses was given antibiotics.

When the polyps came I think my body just broke. Anyway, I got dysautonomia, a rare neurological disorder wherein the autonomic nervous system (which controls digestion, among other things) stopped working correctly. It gave me the gastroparesis and fainting symptoms...

I never had an infection.

I never should have been given 1 antibiotic, much less 7.

I certainly shouldn't have been given Cipro.

But my question to you today, my good people, is - is this my fault? Did I do this to myself by going to multiple doctors? By not challenging what they prescribed me? By not listening to my gut?

Did I do this to myself?

At least in some way, I think so.

And the guilt is perhaps the only thing that weighs on my as heavily as my ongoing illness...

Thursday, April 21, 2016

Goodnight, Sweet Prince


The bend on Valley Tarn road.

A vacant lot.

The house would come soon.

The materials were there, beside the hill of churned Georgia Red Clay.

Atop a plywood "stage," a young ballet dancer choreographs.

The duet of one.

For an audience of only herself.

For hours.

She spins, she twirls, she loves

A Man she's never known.

She dreams...

To "Diamonds and Pearls." ...

Sunday, April 3, 2016


Friends, I am getting worse.

As some of you know, I was seeing some small progress though January, and was very encouraged.

But then February hit and, like a bolt from the blue, brought with it new symptoms - namely, the neuropathy pain I felt in my hands and feet in the mornings spread to encompass my entire body - trunk, legs, arms, even head.

And worse, the one med I had found that was helping...just...stopped.

I told myself it was just a weird phase. To hold on and hold out, because relief was on the way.

I tried many new meds - many of which, if they worked, only did so for a few days.

In a matter of a few short weeks, I went from being on one med for sleep/pain and one med for my nausea, to taking eight meds regularly, with no relief.

Then, this past week, even more symptoms started piling on. If it wasn't enough to have dry eyes, I now had to have Sahara Desert eyes AND mouth. It's like my body stopped producing any of its juices.

It became hard to eat.

It became impossible to sleep.

And then came the joint and muscle pain, and the back pain... And night and nights of meds with no sleep...

Frantic, I turned to my doctors, including the ones at Mayo, for any indication as to why I would be spiraling downward. They were as perplexed as I was.

But when the joint and muscle pain came on - when the back pain spiked and the water works turned off - I remembered something: The Flox Report.

Written by a citizen journalist for people who suffered antibiotic poisoning, specifically antibiotics in the fluoroquinolone class, The Flox Report details the typical symptoms and progressions of antibiotic poisoning.

I first read it in September, and it scared me to death because I knew I was experiencing adverse reactions to the 7 - YES, 7!!! - antibiotics I was given in August. In addition to these antibiotics, I was given multiple steroids, which are counterindicated with fluoroquinolone antibiotics. Add to that a couple of high radiation tests, and you have my recipe for disaster.

In any event, I returned to The Flox Report and was heartbroken as to what I found: my new symptoms are not random at all. Rather, they are accurately predicted (down to the month of onset) in The Flox Report.

And here's the worst news - my symptoms are indicative of a very severe "floxing" - ie. a very high antibiotic toxicity.

According to the report, this could take me 5 - 8 years to recover, if I recover AT ALL.

I know everyone is different. I know no one has a crystal ball. I know some people have, indeed, gotten better. I also know that some never will.

But friends, please sit with me for a moment and ponder - how would you feel about this news if you had at least 30 (yes, I counted them) symptoms that came and went everyday? 30 things that, any one of which, would have bothered you when you were healthy but, now that you are not, are compounding to make your body feel like a torture chamber? How could you bear the weight of knowing that, not only is it likely to get worse (The Flox Report says new symptoms can come on as late as 4 years after the antibiotic ingestion), but it is likely to get MUCH worse? That many people are bed bound and completely disabled by the end of it?

Aside from one or two obligations, I have not left the house in three days.

I stay in the bed.

While it's not comfortable there, it is the least uncomfortable place to be.

I am more tired than I have ever been in my life, and I cannot sleep.

I have the symptoms of Reynaud's, Sjorgen's, Chronic Fatigues Syndrome and Fibromyalgia, but I do not have any blood test indications that I have any of these.

The thought of eating or brushing my teeth makes me tired.

Most of my meals lately have been liquids.


Why am I writing this?

Why am I telling you things that will likely bring you down?

Why am I "putting this all out there"?

I don't know, except to say this is what I have always done.

I have always put my thoughts and feelings out there for others to read.

So I guess it only makes sense that I should do it now...


Scott and I are scheduled to go to Mayo Jacksonville next week so I can take a course on chronic pain management.

I hope it is helpful, but I have my doubts as to how much I can give to the program. I haven't even been able to get down a glass of water and a banana today, and it's already noon.

Friends, I am hurting so much - both literally and figuratively.

Meds don't seem to be helping and, in truth, it was the meds that did this to me in the first place.

Not the dysautonomia. My body did that to itself. But the antibiotics. I took them - all of them - even after reading the warnings about ligament tears and neuropathy. That's so unlike me. I used to refuse any meds at all because I was so scared of the consequences.

But then the dysautonomia came on and I was desperate. I took whatever they gave me. And now I am sick beyond my wildest dreams.

I did not know it was possible to be this sick.

I did not know it was possible to feel this bad all of the time.

I did not know there would be a time when I could not walk without pain or could not sleep despite being to-the-bone tired.

I could use prayers I guess... but I could also use some help.

I have discovered positive sites, like, which provide some comfort, but unfortunately for me, most of those stories are of folks who had a very severe acute reaction that calmed over time.

My symptoms are increasing - and the ones that are the most dangerous according to The Flox Report - are the ones I am developing.

I will include The Flox Report here. If you want to know what I am babbling on about, the predictive factors are on pages 40 - 60. Note that the development of dry eye and dry mouth are very bad predictive indicators. As is progression of symptoms past month 6. (I am at month 7).

If you're wondering how a drug that I took so long ago can still impact me, The Flox report answers the question, but I'll just go ahead and address it here: basically fluoroquinolones contain fluoride, which, in large doses is toxic to the body. It destroys mitochondria, meaning that, when your cells replicate themselves to form new cells, the cells of a "floxed" person are replicating damaged cells. Or not replicating at all. which has profound consequences down the line. Links have even been shown to diseases like Alzheimer's and Parkinsons.

So yes, I am terrified.

And tired.

And I hurt all over.

And I go back in time everyday and reread that damned warning that I talked to my husband about.

I relive my decision to take the medicine anyway - not once but TWICE in the same month.

I sob repeatedly, because I know that, with that decision, I gave this pain to myself.

If I could go back in time and change just one thing, it would be this - I would never have taken those poisoned pills. If I hadn't, I wouldn't be in this spiral that's robbed me of my life and my plans and my goals.

Anyway, here is The Flox Report:

I have to go force feed myself this banana.

Sunday, February 28, 2016

Milestones are millstones

Tradition tells us that milestones are measured in birthdays and babies, graduations and career moves, weddings and first homes. Shiny, happy memories full of smiling faces, handshakes, and the passing on of age-old wisdom.

Tradition, it seems, missed the memo:

I'm sick.

And, as such, many of those milestones may never brighten my horizon.

At best, my milestones may be a mixed bag - in addition to marking the anniversary of my wedding, for instance, I will also be marking the one-year anniversary of the onset of the mystery illness that would completely overtake my previously presumed birthday and baby-bound future and replace it with pain, terror, and sadness.

Turns out, not all milestones are blessings.

Many milestones are millstones.


I'm a believer in signs...and while that acknowledgement may make you write me off as a lunatic, let me please assure you it wasn't always so (the belief or the lunacy).

There was a time in my life where a certain song coming on the radio at a certain time was mere coincidence, where a timely phone call from exactly the right person wasn't a life-saving sign but rather a lucky break.

Life has taught me differently.

So maybe I should have seen the sign - in this case a very literal one - when I received this as a wedding present:

Now don't get me wrong, the gift is gorgeous - a lovely marker for a lovely milestone.

But now, in the wake of my wake of my previously healthy life, I can't help but look at the sign and ask myself if I should have seen the scary future in the E.M.S. hanging on my wall.

After all, I think we hung it mere weeks before my first of many trips to the emergency room to receive my emergency medical services...

But I'm not a soothsayer. Just a girl who believes in signs. And I saw what I consider to be another one today.

After yet another night with little to no sleep, I woke from the 30 minutes I was able to get this morning with a jolt.

I am not unaccustomed to such an awakening - but it usually results from this: in my dreams, I am still healthy and well. When my body wakes and finds it is not so, it very literally jumps at the recurring realization.

Today's jump was different.

I fear today's jump was a sign.

Because this morning, in my dream, I was not well. I was sick.

And I woke to the realization that I no longer get a reprieve from this sick sentence...

Perhaps this isn't so much revelation as intuition. Perhaps it's not a sign so much as a milestone.

Either way, I acknowledge that my subconscious has realized what my conscious mind already knew - that I am sick, and for the foreseeable future I will be.

And while I continue to hold on to hope that tomorrow will be brighter, easier, healthier... I admit my grasp on hope is much sweatier and more precarious than the strangle-hold I have on my present reality...

I know how this sounds.

Helpless, hopeless, hurting.

I am all of those things.


Maybe that's what prayer is for.

When milestones become millstones, maybe that's when the miracles come.

I hope it is.

And there you have it: hope.

Hope from the girl who staggers under the weight of the millstone.

And maybe that's a sign.

Sunday, January 31, 2016

Mayo update

So I've been waiting to write this.

And I'm still not ready.

I'm still processing.

Still questioning.

Because I don't believe in "the big reveal" with regard to health status, I will lead with this: the trip to Mayo was a positive one.

To begin, I really liked my doctor, Neurologist Elizabeth Coon. Not only is she a specialist in autonomic disorders, but she's also a wonderful listener and a compassionate healthcare provider. She and I had two appointments, and during those appointments, I felt I could trust her. Most importantly - and most unusually, given my experience with local doctors and with Mayo Jacksonville - I felt believed.

Throughout this illness, perhaps the hardest thing to endure aside from the symptoms was the brush off I received from physicians who simply refused to believe anything was wrong with me. After my Tilt Table and ANSAR tests, however, my dysautonomia could no longer be denied.

So I should say, that is my definitive diagnosis from the Mayo Autonomic Specialist: dysautonomia. Which, by this time, shouldn't really surprise any of my readers. What may be surprising, however, were the subsequent findings:

1. that my dysautonomia has hyperadrengenic qualities (like POTS - postural orthostatic tachycardia syndrome - but my heart rate fluctuations are not quite as severe). If you want some medical jargon about it, here goes: "These patients have similar HR increment to nonhyperadrenergic POTS, but tend to have prominent symptoms of sympathetic activation, such as palpitations, anxiety, tachycardia, and tremulousness. These patients have a larger fall in BP following ganglionic blockade with trimethaphan, and higher upright plasma norepinephrine levels than did nonhyperadrenergic POTS patients, presumably indicating a major role of orthostatic sympathetic activation. Elevation of plasma norepinephrine ≥600 pg/mL) was documented in 29.0% of patients tested in a recent study.

So that's that.

2. And this one is a big one - despite my symptoms of hyperhydrosis and pain/burning/numbness in the hands and feet and crawling/weakness sensations in the quads, Mayo's neurology tests conclude I DO NOT HAVE NEUROPATHY.

Friends, this finding alone was worth the trip.


Because neuropathy is bad. Left untreated, it can get real bad. And, as my dysautonomia is not caused by something treatable, like diabetic neuropathy, me having it would be real, real bad.

If you'd care to read more about the testing I had done, you can read about it here.

So those were the significant findings - based on those findings, Dr. Coon believes I have a good shot at improving. That, obviously, is exceptionally good news.

But try as I might, I just can't seem to get too excited.

Why? (You ask again, astonished)

Because I still feel like shit everyday.

And, despite Dr. Coon's thoughts that I will likely improve, I know that improvement - if it comes, and PLEASE GOD LET IT COME - will take time.

And a lot of effort.

And there's very little they can do in the mean time to help me feel more comfortable - ie. not crying in pain everyday from enduring a collection of the following symptoms:

Tachycardia, insomnia, variable blood pressure, blurred vision/inability of eyes to adjust to varied light sources, nausea, abdominal pain, early satiety, feeling of burning or nausea in the stomach, incessant sweating from the hands and feet, burning pain/numbness in the hands and feet, feeling of weakness or creepy crawly sensation in the thighs, daily fever, dry eye, lightheadedness, occasional syncope, panic attacks.

Likewise, I am concerned because some of the things I have read say the tests I had (referenced in detail above) are not particularly reliable for measuring neuropathy, which, of course, still scares the shit out of me. Is it neuropathy? I cannot seem to find it referred to as anything else in various medical journals. And, if not, then what is it that is presenting as neuropathy but isn't?

Lastly, I read this article by a Dr. Blair Grubb, who is renowned in the field. He says hyperadrenergic types of POTS are the worst of the kind, and will likely require lifelong treatment. You can read about that here. LIFE. LONG. TREATMENT. That's a scary prospect. And also one that carries with it potential problems. Because every med they can offer me has side effects. I actually thought I found a really good med about 2 months ago - and then, two months in, I'd gained 10 pounds, my breasts were very swollen and painful, and my hair started falling out en masse. So I am more than just a little scared of the medicines and their potential side effects.

I am hopeful but confused.

Happy but still scared.

And still in a lot of pain.

And likely will be for a long time.