Broken Hearts and Grocery Carts

A disclaimer: This isn't meant to paint anyone in a bad light, it's just how I remember what happened.

Here's where we left off: I was diagnosed with lyme, ehrlichia, babesia and bartonella, and I had just started IV Rocephin in the early spring of 2006.

So, I hadn't been on IVs for more than, I would say, a month when I started to think that my boyfriend was cheating on me.  And looking back, I think he was just someone who couldn't handle this kind of stress in a relationship.  Let's face it, it's a lot to ask of a partner.  Now, before you start sending me angry feminist hate mail, I'm not saying it was okay.  All I'm saying is that some people have marriages and a dozen children and never have to go through this kind of trauma.  So relax.

Right, so around the same time I start getting twinges in my chest.  People with a lower pain threshold would probably call them sharp shooting pains, but they did just start out as twinges.  And when you have a plastic tube shoved up your arm and into your heart, what's a little twinging?  Then, at some point, even I had to admit that the twinges were shooting pains, and then that the shooting pains were the kind of pain that knocks the wind right out of you.  But that all progressed over a couple of weeks.

So picture this (unless you're related to me, in which case, please skip this paragraph):  My boyfriend has stayed the night at my house, and I wake up from a dream in which he was cheating on me.  And I turn over and I say, "Hey, you were cheating on me!"

Here's a list of things he doesn't say:
What are you talking about?
Why would I ever cheat on you?
Oh please, I love you too much for something like that!
Have you lost your mind?
I would never!
Alessandra!  How could you say that???

Here's what he did say:
Him: What?  Who told you that?
Me: No one.  It happened in my dream.
Him: Oh.  Why would you listen to a dream?
Me: I was just joking.
Him: Well that's stupid.

Uh-huh.  That week, somehow, I found out for sure that he was.  I don't remember how, and it doesn't even really matter, although I do remember thinking that I had suddenly been dropped into an episode of Maury Povich.  What happened though, was that it broke my heart.  And I don't mean figuratively.  I mean literally.  I felt it shatter, and I started having something like heart attacks.

I get this intense pressure and pain in my chest, and my face turns completely white, and I vomit because it hurts so much.  All in all, it's a pretty sight.  Me lying on the floor, puking my guts out, shaking and screaming.  The last time it happened, I ended up banging my head over and over against the back of the toilet, because it hurt so much.

As you can imagine, many trips to the cardiologist ensued.  As best they can figure, it is the perfect storm that causes them -- heart block coupled with pericarditis and costochondritis -- basically everything inside my chest is inflamed, and then any irritation at all (it can be moving a certain way, a sudden change in temperature, or my being alive) causes this sort of cramping.  It's like the world's biggest charlie horse, but in my chest.  Oh lyme disease, you are nothing if not full of hilarity.

And that is how, after I won my first National Specialty ever with the fabulous Miss Marge, I ended up on the floor of the hotel bathroom begging my mother to kill me.

Since they began, I've had over 30 of them.

Now, I feel like between this post, and my last post that I've been a total downer.  So, here's something that happened later that year.

One of my friends, Andrea, had picked me up so we could go grocery shopping together.  We drove in her car to our usual grocery store, and each got a grocery basket.  I left the produce section, and started wandering up and down the aisles getting the things on my list, when I noticed a woman following me.  So I started skipping aisles and then doubling back, and she just sped up, and stayed on my tail.  She kept creepy staring at me, and then following me.  It was really starting to freak me out, and just when I started to get really worried, she came flying up an aisle towards me.  I did what any reasonable person would do.  Screamed like a banshee.  I screamed like a girl getting killed in a horror film.  I screamed and screamed and screamed, and she wouldn't back away.  And even though she was really startled, she reached out, and touched my arm and said, "Alessandra, it's Andrea.  Remember?  We came here together."

I'm still banned from that Stop and Shop.

Present day...for a minute...

Well, I know I have a long way to go to actually get from where I left off in the last post to the present day, but a couple of things have happened recently, and I'm having a hard time focusing on the past right now.  So, I'll just go with the present.

Two Fridays ago I went to see a different doctor.  Partly because I was so drastically sick and couldn't get in to see Dr. R, and partly because Dr. R. and I have been looking at each other (mostly lovingly) for 6 1/2 years, and I thought that a second set of eyes couldn't hurt.

There isn't a good way for me to explain how I feel every time I try something new.  I believe, down to my very core, that this is going to be the thing that works.  I think I have my own cheering squad that keeps yelling over and over, "THIS IS GOING TO DO IT!!!  THIS IS GOING TO BE THE ONE!!! THIS TIME IS IT!!"  So that later, when it seems, inevitably, this wasn't the thing to do it, I am devastated.  And lord knows, I'll try anything.

(Weird) things I have tried:
Massage
Reiki
Acupuncture
Cranio-sacral massage
Chinese Medicine
Tibetan Medicine
Having some woman rub crystals over a dried spot of my blood 3,000 miles away (story for another day)
Laying on some machine that is supposed to make your cells vibrate at the right vibration
Raw milk fast
Saunas
Barbara Brennan Healing
Gluten Free diet
Sugar Free diet
Energy healing
Nutritional Supplementation of all kinds
Etc., etc., etc...

So, I went to see Dr. C., also very highly regarded in the field of persistent Lyme Disease.  And the whole way there I thought, "THIS IS THE ONE!!!  HE'S GOING TO DO IT!!!  HE WILL FREE ME FROM THIS!!!"  I figured that Dr. R and I must have missed something.  That we must be just one small thing away from being able to solve this whole problem.

The gist of what happened was this:

Dr. C: Alessandra, did you really think that I had some trick up my sleeve that Dr. R hasn't already tried?
Me: That's what I was hoping.
Dr. C: We've all learned most of our tricks from him.
Me: So what?  No magic wand?
Dr. C: No.
Me: Damn.

And then later:

Me: Do you think Lyme is cure-able?
Dr. C: Oh absolutely.  Just maybe not for you.  Your case is complicated by the length of time you went without diagnosis, and the fact that you were given a year of steroids and other immune suppressants in the meantime.
Me: Oh.

I couldn't hear anything else the man said.  Just maybe not for you.  It just keeps ringing in my ears, and brings prickly tears to my eyes every time I think about it.  Why not for me?  WHY NOT FOR ME???

And to be honest, that's all I want to say about that right now.

But then something else happened last night...

I was flushing my PICC line with saline and heparin, and I got this pain and intense pressure that ran up my neck to my jaw.  Great.  Seriously?  And of course on a Sunday night, too, not a Tuesday afternoon or anything like that.  So I called the Nurse on call, and I think to myself, "these poor women, I call them with the craziest sh*t".

So, I explain to the nurse what happened.  She sighed, said that she had no idea, and that I should probably go to the ER.

I hate the ER.  With a burning passion.

So, I called Dr. R's answering service.  I explained what happened, and they connected me right away with Dr. R himself.

Dr. R: Well, hello Alessandra!  What's going on?
Me: I just really missed you.
Dr. R: Well, I miss you too.  I'm so glad you thought of me on a Sunday night.
Me: I just thought you might be lonely.
Dr. R: You're always so considerate.  Is there anything else?
Me: Yes.  I flushed my line, and now there's this pain and pressure (okay, I was more specific at the time)
Dr. R: Well, it sounds like the trauma has passed, so why don't you take an aspirin, and call me back in 2 hours.
Me: Okay.

2 hours pass, in which I call my mom, and I can't decide if I'm getting better or not, because I'm freaking out about a clot lodging itself in my brain, and all I can think about is Emily telling me about this woman in Boston who was being treated for Lyme with IV antibiotics who died, because her PICC line threw a clot last week.  Sure Mom, I'll just relax...

Dr. R: Well?
Me: Well, I'm not worse.  I might be getting better, but I can't tell.
Dr. R: Here's what I think happened.  I think you had a mini-clot which is nothing for you to concern yourself over.  Here's what it's like, Alessandra (and what follows is why I will always love my doctor the best). It's like stardust.  Some stardust falls off of a meteor, and sure it causes confusion where ever it lands, but it turns out, it's actually no big deal.  Now, a big fuss would be a meteor flattening people's houses.
(And more doctor/patient talk ensues, wherein we decide that I am not dying, I do not need immediate medical attention, and the best course of action would actually be going to sleep)

I woke up several times in the night, and thought to myself, "thank goodness, I'm still alive".  But then it occurred to me each time that I could have had a stroke, and wouldn't know, because I wasn't actually talking out loud, but each time I would fall back asleep before I could get anything out.   I am fully functional this morning though, even if I do feel a little rough.

So, between these two things, I just haven't really felt much like talking...

Discoveries...

At the time, Dr. R. was in Stamford, CT. I took the ride down there with my mom. At this point in the journey, I had pretty much given up hope that anyone would be able to tell me what was wrong with me. It was liked being trapped in your own private hell -- one that has no name and no explanation. It also had no validity to me. If you don't know that a tree is a tree, when it falls in the woods, does anyone give a crap?

My appointment was with Dr. R's PA, Natalie. She brought me into her office, and asked me to tell her what was going on. I took a deep breath, and started speed talking like the Micro Machine's guy (remember him?)  to fit everything into what I was sure was going to be a 15 minute appointment. She started to giggle, and told me that she had 3 hours blocked out for me, so I could take a deep breath and slow down. We would take as long as it took.

We laughed, we talked, I told her everything that had happened, and everything I was feeling. She wrote pages and pages of notes. And since I have recently gotten copies of my office notes, and I have decided to tell the truth as best I can, let's see where I started (Natalie's notes are italicized to italicize the innocent):

Current Symptoms (on 2/15/2006)
- Extreme fatigue
- Irritable and easily angered (no comments from the peanut gallery, please)
- Confusing words and objects (calling a pen an elephant)
- Not knowing herself (as in sometimes I didn't know who I was or what my name was)
- Becoming completely lost and confused
- Word retrieval problems (what?)
- Headaches (which is an understatement)
- Light and Sound Sensitivity
- Waking up feverish
- Non-restorative sleep
- Low energy during the day
- Pain in the soles of her feet, especially in the AM
- Continual foot pain, ankles, knees, back, shoulders
- Knees, hands and ankles swell
- Short of Breath
- Sharp shooting pains around chest cavity
- Palpitations, racing heart
- Numbness/tingling in hands and feet
- Heat sensations in night on legs that wake her up
- Hospitalized for vommitting blood (now, that might be considered over-sharing)
- Always low grade fevers

Recent Symptoms
- Bell's Palsy (the right side of my face would go completely numb and useless...hot, I know)
- Trouble speaking and would lose herself in the middle of a sentence
- Walking difficulties, using a walker
- Muscle weakness and coordination problems
- Extreme weight loss and gain
- Extreme joint pain
- Skin painful to touch and clothes

I think, in short, I'd call myself a hot damn mess!

Four hours later, Natalie said that we'd need to do confirmatory blood work, but that her opinion was that I had Lyme Disease, and probably at least one Co-Infection.  I looked at her, and burst into tears.  I cried for all of the times I had thought that maybe I was just crazy.  I cried for all of the doctors who had brushed me off.  I cried for how horrible I felt.  I cried for all of the fights this had caused in my family.  I cried for all of the friends that I lost.  I cried for all of myself I had lost.  And mostly, I cried out of relief that this finally had a name, and that I could say it out loud.

The blood tests (that had to be sent out to a specialty lab, since the ordinary blood test is only about 45% accurate) would later reveal that I had Lyme, Babesiosis, Bartonella, and Ehrlichiosis.  I was disappointed not to have Rocky Mountain Spotted Fever too, since I think there is some sort of prize, if you get all 5, but people accuse me of being an over-acheiver.

I was so drastically ill that it quickly became apparent that I would need IV antibiotics.  So, in went my first PICC line.  A PICC line is a peripherally inserted central catheter.  In short, the tube that sticks out of my arm goes all the way to my heart, so that the IVs are inserted directly into my heart.

The man who put in my PICC line (Tom, maybe?) was chatting with me while he was putting it in.  It's a weird feeling.  They numb up right at the insertion site, and then stick a fairly large needle in your arm into the vein, and then snake a PICC line that has a wire in it up your arm and across to your heart, and then take the wire out, leaving the PICC line in place.  And yes, you can feel it in there.  Especially when they pass your neck.  You can feel the blood flow decrease.  After about a week though, I don't feel anything at all.  Just the occasional twinge when I forget about it, and pull on it.

Wait.  Where was I?  Oh right...Tom.  He asked what drug I was put on.  I told him Rocephin.  He looked at me, deadpan, and it went something like this:

Tom: You look really upset.
Me: I am.
Tom: Well, the good news is, you might feel like shit, but you can whore around all you want to.
Me: What???
Tom: I'm just kidding.  Rocephin is used to treat all the STDs.
Me: Well, at least that's something!

I thought my journey had finally come to an end.  I had a diagnosis, and I had a cure.  After all, that's how medicine works, right?  I had no idea what was in store, and that instead of a tidy end, I found myself at the very beginning all over again.

Seeing Someone Else

I have always thought that a good friend and a good laugh can get you through anything. That has never been more true than the time I spent with my friend Megan. Three of the most ridiculously funny things happened when we were roommates in Providence (almost as funny as the week I lost any kind of control over my bladder, but that's a story for another day). I will forever be in her debt for keeping me in my best humors during some very black times.

Megan and I met while we were both working for City Year, just after college. City Year is an AmeriCorps program that runs after school programs for under-served schools and communities. Their logo is red, yellow and black. This will be important later in the story.

One afternoon we were working in the office, and Megan asked me what was wrong (apparently I looked funny). I told her that I was having chest pain. It went kind of like this:

Megan: You look bad. Are you okay?
Me: I'm fine.
Megan: No really, what's wrong?
Me: I'm having some chest pain.
Megan: What kind of chest pain.
Me: You know, just regular chest pain. My arm kind of hurts too.
Megan: Which arm?
Me: My left one.
Megan: HAVE YOU NEVER WATCHED A PUBLIC SERVICE ANNOUNCEMENT?!?!? WE HAVE TO GO TO THE HOSPITAL!!
Me: I'm fine. I don't want to go to the hospital.
Megan: I'm not going to sit here while you die. We'd never get your body down the stairs without having to nudge you over the edge and letting you roll. And that's just undignified.
Me: Fine.

So, we go to the hospital. My chest pain gets worse. And then I can't catch my breath. And we are in the Emergency Room of Rhode Island Hospital, which is full of gun shot victims and crazy people, and that's about all I remember, because soon after I was taken into triage, I blacked out. I remember coming to briefly, and a nurse yelling at me to calm down (which I didn't really think was calming), and then blacking out again.

What was, apparently, hours later, I woke up and eventually Megan came into my room. She looked really drawn, and I asked her what was wrong. It went sort of like this:

Me: What's wrong with you? I'm not dead.
Megan: Well, David (our boss) is here with Mark (another boss).
Me: Why?
Megan: They're worried about you.
Me: Tell them to go away.
Megan: I can't really. I just wanted to prepare you.
Me: Prepare me? For what?
Megan: You'll see.

Well, we walked out into the waiting room together, and nothing could have prepared me for what I saw. Two grown men, huddled together in the middle of a bustling room full of grieving and sick people, with a giant bouquet of black balloons. Apparently, black was the only color left after the last City Year event. It was made funnier by the fact that they didn't really notice how shockingly and wonderfully inappropriate their death balloons were.

The second incident was a 3 am visit to the Miriam Hospital emergency room with chest pain.

I was laying on the exam table waiting for a doctor and trying not to die. Megan just returned from procuring delicious peanut butter and jelly sandwiches (I'm pretty sure she bribed someone), and looked over my head and started laughing. You know how there are things medical professionals use to look in your ears and eyes mounted on the wall in hospitals? Well, this wall had the SUCKUTRON 3000. I can't really repeat what jokes transpired, but needless to say, we were hysterical puddles on the floor by the time the doctor came in.

And the third incident was the look on Megan's face when she saw the size of the needle for my lumbar puncture. We decided then that she shouldn't play poker.

It amazes me how steadfast and good humored she stayed, even when I was crawling on the floor to go from the couch to the bathroom, because I couldn't walk. Even when I thought that I might just be crazy. Even when I lost the ability to talk. Even when I wanted to die, she always made me smile.

I think the cycle of crashing and getting well is one I probably would have stayed in forever, as I'm sure do many undiagnosed or misdiagnosed people, except that my mother has the world's most annoying habit.

It used to bother me, to no end, that my mother would talk to complete strangers about the intimate details of my life. One day my mom called to say that she had been talking to the receptionist at her vet clinic about me (Mo-om! Stop talking about me to strangers! Geeeeeez!). It turns out that the receptionist's sisters ex-boyfriend's aunt's gardener -- alright, not quite, but it seemed that way -- goes to a Doctor in New York City.

Mom: She thinks you have Lyme Disease.
Me: Uh huh.
Mom: You should go see this Doctor.
Me: Uh huh.
Mom: Well, he can help figure out what is wrong with you, even if it's not lyme.
Me: uh huh.
Mom: Just do it.
Me: Uh huh.
Mom: ALESSANDRA!
Me: Fi-ine.

So, I called. And that's the beginning of how Dr. R. saved my life, and how I lost it again.

Where shall we start...

For years, my mother has been "suggesting" (read: bugging) me to write about this. She thinks it is an issue of public health, and that my story could help other people. I'm hoping that my story can help me. Not that I don't love all of you, but I really could use some help.

I've never written about this before mostly because I could never figure out where to start, and frankly, because it's really painful for me. But I'm hoping that if I go back over my story, maybe I can find my own answer. And for that, I need to find my own beginning. Here are some options…

DRAMATIC: I found myself lying on the floor of the bathroom in another hotel, crying, screaming, begging my mother to kill me, because I was having another heart "attack", just hours after winning my first National Specialty with the Marge.

It happened, but it seems like a little much to ease into this story.

I could start funny...

HUMOROUS: I named all of my PICC lines. First was Geronimo, and every time I would attach my IV Rocephin drip, I'd yell out "Geronimooooooooo". A few PICCs later was Charlene, and let me tell you, she was a bitch. She was always stingy, causing problems at the site, just a general pain in the ass....etc, etc, etc.

The only problem is that I'm not finding all of this funny right now.

I could start griping...

MOAN-Y: There are things that someone inevitably says to me at least weekly. And I know that these comments come from a place of "love", or more likely, wanting gossip, but every time someone says it to me, it turns another little piece of my soul black and writhing to get out and strangle someone. Things like, "oh, aren't you done being sick yet?", and, "goodness! You STILL have that lyme thing?!?”, also, "well, I guess you'll never have kids", or my personal favorite, "oh you must be feeling better, because you look so good". If the day ever comes that I don't have to deal with this, I'm going to hire a sky writer to tell every single person I ever met, so please just assume I still have it until you see something else scrawled across the sky.

Or I guess I could just start somewhere near the beginning of this all going wrong...

My freshman year of high school, my knees started giving out from underneath me, and I was tired all of the time. I had been someone who bounced out of bed every morning before my alarm, eager to greet the day, and I increasingly became someone who would have to get prodded and yelled at repeatedly in order to peel myself out of bed.

My knees got to be so painful, as did my hands, that I went to UMASS to see a rheumatologist. He shrugged it off as growing pains, and said that since I wasn’t a basketball player or anything, and I was "just a pianist" that it didn't really matter, and I would outgrow it.

The fatigue became overwhelming. I had all manner of blood work run, and I was told that I was "just a teenage girl".

As high school wore on, and I wore out, my grades started to plummet (from an A average to a C average). My teachers called me lazy. As I was getting kicked out of AP English, I told my teacher that I wasn't lazy, that trying to read was impossible, because all of the words just floated around and didn't make any sense. He told me that if I wasn't lazy, then I was just stupid.

I told my doctor that I wasn't sad, but I just started bursting into tears all the time, for no reason. She told me that I was "just a depressed teenager", and prescribed anti-depressants, which I took. And then I was bursting into tears, exhausted all the time, with an angry edge of someone taking crack. My mom and I were getting along fabulously then!

I faked my way through high school, which was no small feat, and that preparatory school did prepare me for the future of having to fake it through college.

I went to college, and my mystery "disease" progressed to the point that I named it "The African Yellow Bellied Eating Sleeping Disease". It was awful. My clothes hurt on my body, I had uncontrollable muscle twitches, I had word retrieval problems, sensitivity to light and sound, and on and on. And it was really in college that this disease started taking away my life, piece by piece.

The first thing to go was my ability to play the piano (I started school as a music major). My hands burned all the time, and hitting a key was blinding pain. So, I thought, "that's okay, I can sing nearly as well as I play", so I sang, and sang, and sang, until the beginning of my sophomore year, and I developed vocal chord dysfunction. Basically, I would sing a note in my brain, and something entirely different would come out of my mouth. So fine. Fine, mystery disease, I'll just act.

Now, I was good. I mean nominated for the Irene Ryan Kennedy Center Scholarship twice kind of good. Asked to go intern at the Royal Shakespeare Company sort of good. I got every part I ever auditioned for. I'll say it to you now, even though it's hard for me to think about, I was downright brilliant.

I didn't know what true love was until I found myself wrapped up in Shakespeare in front of a live audience. And yes, I'm crying while I write this. I didn't know what it meant to give yourself, to bare yourself, to be yourself, to be everything outside of yourself, to be whole, and to accept that you find yourself in pieces. My god, I loved the stage. I loved creating with reckless abandon, getting to be evil, and good. I loved the parts of me that are Juliet and the parts that are Lady M.

And then one day, I walked out on stage, almost to the end of a run of Midsummer Night's Dream, and all the words were gone. Every single last one of them. I had no idea where I was, or what I was doing there. And it only lasted a few moments (which seemed like an eternity), and I realized then that the mystery disease had taken this too.

I muddled my way through my last year and a half of college – mostly with the help of my roommates and sister. And every day I would wake up worse than went I went to bed. And every one had an answer – stress, chronic fatigue, MS, brain tumors, rheumatoid arthritis – but none of them would ever hold up.

So, I went to Brigham and Women's to see one of the countries top Rheumatologists (since the only thing anyone could ever find on my blood work was an elevated rheumatoid factor). She declared that I had rheumatoid arthritis, and put me on prednisone. When that didn't work, she increased the dose. When that didn't work, she put me on Humira -- an injectable immune suppressant. All well and good, except that it says on the box, "do not use if patient has an active infection". We used the hell out of it. Sigh.

Fast-forward a few months, and I'm sitting in the Rheumatologist's office, and I say, "you know, my joints do feel better, but I poured an entire pot of boiling water on my hand, before I even noticed." She said, "that's not my problem. I only deal with bones, you need to see someone else". When I asked her who I should see, because I'd already seen Neurologists, Internists, Rheumatologists, Psychologists, Physical Therapists, psychiatrists, shamans, acupuncturists, traditional Chinese medicine practitioners, chiropractors, and dozens more, she just said, "well, someone else."

Which I suppose is the start of Chapter Two...Someone Else.