Random Thoughts

November 6, 2011

Random thoughts.  They are like pop ups on my computer screen.  They distract me from the stuff I am supposed to be focusing on.

Jingle Bell Run.  Every time I log into Facebook this past two weeks, there is a post about the Jingle Bell Run. 

Every morning in November 2004 you would put on your tennis shoes, push the ipod speaker buds into you ears and head out for a 2 mile jog on the country roads in Rochester—training for the Jingle Bell Run.  I’d drive by you on my way to work. We would wave to one another.  November 2004 two months before you found out you had Lyme disease.  Two months before you had a needle stuck in your spine.  Two months before you would call me from the isolation unit at the Emergency Rooms somewhere in Norfolk--the doctors suspected meningitis.    

Norfolk.  And why do I keep getting information about Norfolk on my Facebook page.  It isn’t a common city name like New York or Boston or San Francisco-- Miami.  How many times did I fly in and out of Norfolk International Airport to visit you?  And leave one week later, waving and smiling at you from the curb outside the departure gate for American Airlines—only to become a walking waterfall of tears as soon as I turned away.  Some child would invariably see me as I attempted invisibility, privacy in my state of outright sobbing.   

“Mommy, why is that lady crying.”  She would ask.

Mommy would grab the child’s hand, pull her into her.  Whisper something into the child’s ear I could not hear.  

You never knew how much I cried for you.

Veteran’s Day.  Specifically, Veteran’s Day 1981.  The year I was your sister’s Blue Bird troop leader.  Every Tuesday, seven little girls gathered around my kitchen table for a Blue Bird meeting while you tried to stretch and turn inside my growing womb.  Safe within my belly, you listed to muffled sounds of horse hoofs, marching bands, the calls and tapping shoes of drill teams, honking horns as I led my troop of six year old Blue Birds in a parade down Main Street, in Auburn, holding a banner honoring veteran’s, they had painted with bright poster paints.

Tortillas.  Maybe I should make flour tortillas tonight.  Your favorite.  Form the little balls of dough, roll them out, cook them on a cast iron grill.  The smell of hot flour and lard and baking powder.  Can you smell them where you are?  

All week long I have been presiding over a hearing.  Trying to ferret out the truth of the matter from bits of evidence elicited by series of questions.  It is my job to find the truth in opinions, conjecture, each side’s recitation of the facts from their perspective. There is only one person knows what really happened.  That is the Appellant.

These decisions, this deciding, weighs heavy on me. 

I need to get it right. 

Hospitals.  Good Sam, St. Joe’s, St. Pete’s.  We were on familiar name basis with all of them. 

I feel it starting in my belly, wrapping itself under my ribcage pressing out.  The pressure is overwhelming.  It pushes up through the middle of my chest, rests there—collecting, building.  I am afraid to release it.  Afraid it will cause destruction.  Break windows with the sound of it, rattle ground with the physical intensity of it.  That it will flood and change the course of shorelines.

No body can contain this. 

I feel the slow release.  A leak.  It seeps out a little at a time.

Last night I read you Mercer Meyer’s When I Get Bigger before I went to sleep.    I read bedtime stories as much to myself, as to you.  Falling asleep I thought…

“When I get bigger my daughter will die when she is 27 years old.  Everything I thought I knew, will become unknown.  There will be no order to anything.  There will only be degrees of this rising up of feeling collecting in my belly.”

I wish that story could be rewritten.  I did not like the ending.

My throat constricts, the last defense against this physiological, emotional event.

There are no instruments to measure this.  Only I feel the force, the destruction, the exhausting cleansing from this.

Talk to me, I will respond.  I will smile.  I will laugh. 

I will seem normal.  

But I am invisible.  I cannot scream.  I cannot walk around with rivulets carving waterways across my cheeks, dripping from my jaw line, onto my breast bone, down my breasts collecting like the leakage of mother’s milk.

My grief is as private as your conception.

It is Saturday.  I am alone.  The sun is shining.  There is blue sky between bare branches.  Great pools of brown, gold leaves break on frosted green.  It was 32 degrees this morning.

I am leaking. 

I am remembering.

I am not blocking.

Doctors.  All the king’s horses and all the king’s men couldn’t put Humpty together again.  They all have an opinion about Humpty’s fall, what injuries he sustained, what illnesses he suffered from—whether he can be put back together again. 

It all depends on the diagnosis.  There from flows the treatment.  If there is no diagnosis, if there is disagreement about the diagnosis, the patient continues to suffer.  Morphine infusion to alleviate the pain while a doctor forms an opinion.  Luck is when there is a definitive diagnosis.  That everyone can agree on.

That was the problem.  The disagreement.  And all the while, you laid in a hospital bed, pumped full of morphine and dilaudid while the doctors argued about your diagnosis.  Multiple Sclerosis.  Lupus.  Lyme Disease.

Lyme Disease.  You were a patient caught in the controversy of its existence and its treatment.

A six week course of antibiotics.  You will be cured.  That is the majority opinion.

February 2008.  A call from St. Joe’s Emergency Room.  They did a spinal tap.  You had meningitis.  More plaques on your brain.   A disease was progressing.

This was my first lesson in hospitalists—the doctor in charge of your care when you are admitted to the hospital.  He is not your doctor.  You did not choose him—or her.  The hospital and schedule of a doctor’s rotation determined your doctor for you.  He can choose to listen to your treating doctor.  The doctor you see on a regular basis.  Or not.  He, or she is taught to look at everything and make his own diagnosis. 

Two words come to mind.  Pompous and ass.  Your hospitalist at St. Joe’s.  He did not “believe in” Lyme disease.  Refused to do any research on it.  His mind was made up. 

The infectious disease specialist he called in did not believe in Lyme disease either.  She determined you had to have multiple sclerosis or lupus and wanted to do further testing. 

You’d been through all the testing.  You had a positive titer for Lyme disease.

The infectious disease specialist--you could not have Lyme disease.  You had a six week course of antibiotic treatment.  She would not buy the argument that Lyme disease is often misdiagnosed as Multiple Sclerosis, as Lupus.  She had formed her opinion.  There would be no further consideration of other evidence. 

While you argued with the infectious disease specialist about your diagnosis, the hospitalist pumped you full of morphine and dilaudid.  You begged him to talk to your Lyme doctor in San Francisco.  He was not going to consider the opinion of a doctor in another state—no matter his credentials.  No matter his purported credentials and years of treating Lyme disease.

The Lyme doctor said you needed antibiotics.  You begged for antibiotics.  I begged for antibiotics.  I considered smuggling them in and letting you administer them to yourself behind the locked door of your hospital room bathroom.

It was the hospitalist’s opinion you needed to accept his diagnosis, based on the diagnosis of the infectious disease specialist.  Based on her opinion.

Challenging the medical profession from a hospital bed, or as the mother of a sick child is never a good idea.

They drugged you until you almost stopped breathing.  I sat by your bed and jostled you, put my hand on your chest to feel it rise and fall, dug my finger tips into your wrist, feeling for a pulse.  Afraid every breath could be your last.

How is it possible to live with this?  This memory of the slow death of you I could not see, but felt as surely as those first butterfly movements you made inside of me..  I would talk, you would talk, few doctors would listen.  The mind was already made up.  Within their knowledge, their frame of reference, they had formed their own opinion.

When I could wake you, I made you do laps around the hospital floor.  I checked you out to take you to the cafeteria, the gift shop where I bought you magazines and Soduku puzzles you could not stay awake long enough to read or do.

Morphine.  Dilaudid. 

Perhaps if I take an Ativan right now, I can quell the energy seeping up my throat, forming sound.

It was a standoff.  You would not buy into their new diagnosis of Multiple Sclerosis, Lupus.  They would not buy into yours, of Lyme disease.

Even though your head was pounding with the hooves of bands of wild, running horses, the hospitalist wanted to get rid of you.  He wanted you off his rotation. 

You were no longer a patient.  You were a plaintiff—he a defendant in a potential lawsuit.

No other hospital wanted you as a transfer.  You were trouble.  You were disagreeable.  And then there was your mother.

“We believe your daughter is an addict.”  The doctor told me.  “She exhibits drug seeking behavior.”

This, after he had been pumping morphine, dilaudid in your veins for seven days. 

This, after days of begging for antibiotics you knew would stop whatever inflammation process was going on inside your brain.

“Excuse me!?”  I was incredulous.  “Whenever I am here, which I may point out, I almost live here, the only thing I have ever heard us beg for is an antibiotic.  An antibiotic you refuse to give.  I do not know many drug addicts that are coming to the hospital seeking antibiotics.”

You stirred in bed, riveting the doctor’s attention from our conversation.  He and I watched as in you laboriously sat up, turned and put your feet over the side of the bed.  You tried to speak.  Nothing you said was understandable.  Your words all slurred together. 

“Look at her.”  He pointed at you contemptuously.  “She is nothing but a drug addict.”

It was all I could do to keep from pulling his hair, gouging at his eyes, kicking him in the groin.  The only socially acceptable response existed in words.

“For the past seven days you have written every prescription for pain medication.  You have had drugs brought up from the central pharmacy, authorized the nurses to pump my daughter’s veins with two highly addictive pain relievers.  My daughter can barely breath, can barely move you have her so drugged up.  And you dare to call her a drug addict.”

The doctor left the room.  The nurse came back with discharge papers.  And written prescriptions for morphine and dilaudid.

Three weeks later.  A call from the ER at Good Sam.  Clots in both your lungs.  A week’s stay in the Critical Care Unit.  A hospitalist that accepted the Lyme diagnosis.  Treated you accordingly.

St. Joe’s.  This is where the cycle of ER visits, hospital stays began. 

This is where the constant battle began.  Multiple Sclerosis.  Lupus.  Lyme Disease.  Each doctor with his/her own opinion.

You with yours.

Me with mine.

And always the shots of morphine, dilaudid.

There is nothing that eases the pain of this. 

Pop Ups.  The ones I can see on my computer.  The ones that flash across the inner workings of my brain. 

I have to let this grief be heard.  I have to give it a voice.  It is stuck in my throat, lays heavy out across my shoulders, pins me to this paper.  I feel a sharp tingle in my nose.

My grief has its own words.  The only socially acceptable response. 

And even words sometimes, are difficult to read or hear.

Focus.  Ignore the pop ups. 

It is time for me to take a walk with Sadie.  I know a place where I can let this all out.  I can scream as loud as I want.  The squirrels and the birds will stop and listen momentarily, determine I am not a threat, go back to what they were doing.  Once in awhile, one will answer—call back to me.  The trees and fallen leaves will absorb some of the energy of this. 

Doctors.  Shots of morphine and dilaudid.  You laying in a hospital bed.

Fighting.

For a definitive diagnosis.  One everyone could agree on.  One there was a course of treatment for. 

One you did not have to fight about with each new doctor that you saw.

I love you Andie.  You were much braver than I could have ever been. 

                      You are always in my thoughts—Mom.

Dancing Shoes

October 22, 2011

Red patent leather open toed 3 inch heels, a micro mini black skirt and a blonde wig (that is unless she is blond already—then she could just go with the heals and the micro mini).  Several things every woman should experience at least once in her life. 

Today, that would be my advice to you.

Took me 56 years to learn that. 

And at least 6 years before I wore those red patent leather shoes with the 3 inch black heels.  I put them on last night, the first time they have been on my feet since you sent them to me for my 50^th birthday.  The spring you got back the results from your Lyme disease titer.

I am going to dance tonight.  In my red heels, in my little black skirt and I’m going to be blonde.

If you had not died, I would not be here, sitting on the end of Steve’s bed, getting ready for a night on the town with him.  In these heels you bought me and I have never worn. 

And I’ve been thinking a lot, lately, about this letter that you wrote on MySpace in April 2009. 

…………………………………….

I saw a post on a Lyme support board that got to me... I realize that not everyone knows exactly how extensively Lyme disease has affected me, and I can't believe I'm going to just put out there for all to read what I've gone through, but maybe it'll help someone... Maybe it'll make a difference... Maybe the next time I'm down someone will recognize the signs, print this out and march me into the hospital... I don't know what will come of this... Maybe future employers will find it and choose not to hire me. Maybe my retirement will be effected. The fact of the matter is, it's too much to continue to hide from my friends.

Know that these feelings do not define me as a person on a daily basis, just as the disease I am plagued with does not define who I am... It is a constant battle that I fight trying to be who I want versus who Lyme has made me, but it's a battle I am determined to win. Those of you who know me, know I am way too strong to let something like this shape my life.

All that said - here you go (keep in mind this is the answer to a question about whether or not other patients have thought about suicide).

"I sure haven't been posting as often as I used to, but that's because there have been a myriad of changes in my life...

Lost loves, never ending hospitalizations, a swift downward spiral into self-destructive behavior...

I've been there. I think my first attempt was in June of 2006. My boyfriend at the time walked in on me at the kitchen table with a knife, an empty bottle of pills, and a half-eaten bean burrito. I learned then exactly how to manipulate the mental health professionals into believing that I was fine.

For years now, that's what I have done... I get really sick, begin to shut down, attempt self harm or suicide and wiggle my way out of situations. If I can't wiggle out right away, I offer to go in for evaluations voluntarily, knowing that at some point I'll find the weakest link and be able to manipulate my way out of the situation.

One mental health professional actually recognized what I was doing while I was inpatient, and still discharged me.

I don't lie anymore. When I'm having a Lyme fit, I get in my car with various bottles of pills and drive... I call select few who I think can help me - because I do recognize that the real me would never want to ruin such a precious life, no matter how terrible it may seem - and I tell them what I'm up to. Sometimes I tell them where I am, sometimes I don't.

When I hear a siren, my friends know that calls are cut short because I disconnect my cell phone battery and drive away again. I run until I'm so out of breath and broken down that I have no energy to harm myself. Then I ask for help.

It's happened so many times that I feel stupid at the end of every fit. I can never believe that I'm strong enough to keep myself from downing the bottle of pills on my passenger seat, but not strong enough to openly ask for help before loading up the car and leaving.

When my friends try to talk to me about what they could have done differently, I always tell them that I need to just be held down and hugged, but in all actuality, it'd be like trying to cram a shark into a goldfish tank because I'm always filled with so much rage.

This January was really rough. Bad news kept piling on top of me and I'd been drinking and partying way more than I should have been... My judgment was impaired and I tried to go to a friend for support, but no one is able to drop everything and focus on a single human being at the drop of a hat.

I drove off... Parked my car on the side of the road, and started popping pills. I kept track. I kept close track... I knew that if I took a certain amount of this or that I'd simply fall asleep and maybe things would get better when I woke up.

My friend turned me in to the local authorities, I was taken to the local hospital and manipulated everyone into believing that I was OK. I must have thought and talked about attempting suicide every day for a full week. I was surrounded by county sheriffs at one point - I think there were 4 cars total, and able to manipulate them into believing that I was mentally sound. I had a paramedic knock on my car window (after noticing the alcohol and pills) and I somehow managed to get out of going in.

It seems like suicidal tendencies increase when I'm put on any form of antidepressant. I think it's because I always picture the commercials where people are running through fields of flowers smiling while taking the medications, and I wonder why I don't feel that way. I put a lot of pressure on myself. So much, that when I let myself down, I figure it's time to go.

As I'm writing this, I'm realizing that I've never spoken so candidly about what has gone on mentally. I mention breakdowns, I mention that I'm not mentally capable of completing something, but I never openly say it's because I'm struggling to keep myself alive.

That's what I do on a daily basis... I try to be more of who I was and want to be, and less of who the Lyme makes me. I just took a month and a half break from medications - after a 2 week stay in the hospital - and I think I came out of the break with a much better perspective on this disease and the way my body and mind deal with it.

The biggest thing I discovered is that you don't know how strong you are until strength is all you have left.

I'd love to say that I'll never be in the dark places I've been again, but I realize that because of my own negligence I am now a lot sicker than I should be. I realize getting better is not going to be easy. It never was... I realize that there'll be many more long, dark nights and there may be one that I don't come out of, but I know how much I look forward to the future these days and how disappointed I would be if I didn't fulfill every last one of the goals I've set for myself.

Future... A new option for me. I realized during my break that I'd been living in anticipation of dying. I've come so close, medically speaking, that I couldn't help but think every night when I closed my eyes they wouldn't open again in the morning... Right out of the gate, when I was diagnosed, the doctors matter of factly told me that I was not going to survive my stay. That's what I've thought the entire time I've had Lyme - that I wouldn't survive my stay. I've thrown out the earlier calculations that I wouldn't make it past 30, and at my 27th birthday dinner, I proposed a toast to the future, I mentioned how happy we'd all be the day I turn 31... Though I know that the doctors that made those calculations were idiots, I can't help but keep the number in my head. It's been there for so long... Now it's there as a milestone. My friends dread turning 30, when I think that my 30s will be the happiest decade of my life...

As best as my body has tried to shut down, It hasn't, and I don't think it's going to. I'm certainly not planning on letting it..."

I'd like to add for those of you that haven't witnessed this side of me, or for those who have, that when I go into these extreme bouts of "Lyme Rage" I come out not remembering a lot of the details. I know that I can be extremely mean and vindictive, I know that I say and do things that I would never actually believe I could do in my normal life... It's always a lot to process... Sometimes I come out of a fit, just to find myself right back in one because I can't process all the information I have to process. Most of the time, I just want to walk away and pretend it never happened. I mean, if I don't remember - it didn't happen, it couldn't possibly be THAT bad, could it??? My friends that have witnessed it, know that it is THAT bad. It's terrible to not be in control of your body and mind at any given time. It's even worse to not to remember throwing the match down and burning certain bridges.
Andrea

……………………………………….

I stand up in my red patent leather high heels you gave me in May 2005.   The diagnosis of Lyme disease.  The beginning of the end. 

April 2009 you began injecting crushed morphine pills into your port-a-cath.  The talc from the pills clogging your lungs, slowly smothering you.  No one knew.

Today, these shoes mark a new beginning.

How come I did not see this letter until after you died?

This year, in December, you would be 30. 

I teeter, not used to wearing heels.  It is hard to walk.  The micro mini skirt keeps crawling up over my butt and bunching up around my waist.  The long blond hair falls in my face, gets stuck in my mouth and blocks my vision.

I am going to look good, even if it pains me.

Pulling my self up tall, I stand and wait.  Find my point of balance.  These are shoes you walk slowly in.  Being a 56-year-old blond babe in a micro mini shirt is a moment to savor.
Steve sees me in my outfit for the first time. 

He laughs in absolute delight.

“Damn.”  Is all he can say. 

“What’d you say your name was?”  he asks.

“Nadine.”  I tell him coyly.  “My name is Nadine.”

“Damn.” He laughs again wiggling his hips.

I want to tell him the shoes were a gift from you.  It is enough, though, that I know.  That in this moment I can stand straight and count my blessings.

Tonight, he and I will dance—me tall and steady in my new red shoes. 

Tonight—I will be someone new.

                                   Love You,
                                   Mom.