Misdiagnosed

As many of you know, I was diagnosed with Rheumatoid Arthritis by both my surgeon and rheumatologist nearly two years ago.  Treatment included steroids, chemotherapy drugs, juicing, and physical therapy.  I was a strong advocate for the Arthritis Foundation (which I continue to support) and even moved across the country so I could focus on my “return to wellness” instead of my exorbitant Manhattan rent.  Arthritis became my nemesis and I was determined to annihilate this genetic abnormality.  A surgeon, a Harvard-trained rheumatologist, and genetics had me convinced I had found the cause of my unrelenting and, at times, debilitating joint pain.  And they were wrong.

Whether or not my arthritis is RA, psoriatic, or osteo is still up for debate, but what I am 100% sure of is that the major cause of all of my GI, neuro, vascular, skin, joint, muscular, dental, and ocular issues is the result of a condition known as Ehlers-Danlos Syndrome.

While 1% of the population suffers from Rheumatoid Arthritis (which I may or may not have), EDS is extremely rare and goes unnoticed by most physicians.  My doctors viewed me as a hypochondriac because I was dealing with so many issues throughout my body, and they never considered the possibility that my symptoms could be related–the result of a single syndrome.  As many as, 0.0067% of the population suffers from Ehlers-Danlos and most have never heard of it.

So what does one do upon learning she was mistakenly diagnosed with RA and prescribed chemotherapy?  I lost patches of my hair, my freedom (I could not work), spent nights sleeping on the bathroom tile, and learned where each of my organs is located because of the pain.  Do I blame the doctors or praise them for trying to help me as best they could?  The arthritis that was removed on March 19, 2014 hardly helped my knee (it clicks each time I straighten it), and my surgeon will not release his surgical report.  My entire body’s general pain is worse than ever.  I do not remember what it feels like to not hurt…even admitting that hurts.  Despite the misdiagnosis and horrific treatments and procedure following the surgeries, I understand the doctors and surgeon were clearly attempting to reduce my pain.  Neither RA or EDS is curable: they both have controversial treatments and could possibly be related.  It will take a few more years to confirm the RA diagnosis is working in conjunction with the certain EDS…until then, I will trust my current rheumatologist and focus on Ehlers-Danlos.

All I can offer is my advice: keep getting second, third, fourth, and fifth opinions.  I will never trust a doctor based on his or her collegiate pedigree again.

***for more information on EDS, visit: https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/                                                                                                                                                      

My Magic

When I was little, my mother often asked why i stared at the clouds and everyday objects/occurences…I whispered, “I see things no one else sees…it’s my magic.”

FullSizeRender 2A painfully shy child and young adult, I sat and watched the world in which I only existed–the people around me living full lives; the bubbling creek behind out house; how slowly/quickly the clouds above moved through the sky.

The same intuition I used as child is the reason why i attend screenings of indie films before they become blockbusters, see rainbows in the sun’s rays through a lense when the glaring white light blinds me, and explore pictures from angles others would ignore.

I contain magic because i am jaded.  I don’t see  big pictures…only theIMG_0748
minutia of everyday life.  I see gold in straw, stained glass in amber colored maple leaves, rainbows on dry days…the perfectly quiet, final moments of my beloved dog cuddling with my mother.

No one finds magic where he or she expects it, and being cognizant of the pain and joy surrounding me is often as painful as it is rewarding.

My point is: Listen to the quiet, count your deep breaths, and take an actively passive glance around you–observing the world and its people is magic.

 

When You Fail at Love

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No one understands better than myself the feeling of being in love with someone who does not want you anymore.

Someone is scraping your insides, cutting holes in you with a knife…and you suddenly appear to the world as an interesting creature of substance when, actually, you are completely hollow: with the rejection of love, you’ve become a jack-o-lantern.

Personally, I am terrified of love because the outcome results in a pain, which, at such a degree causes more grief than the moments of bliss were worth. It also reminds me that my existence in my lover’s life did not matter.

My grief has evolved over the years and I have only felt at peace when the one I loved coincidentally loved me back. Self-love has been as dissatisfying as self-loathing…I’ve relied on others to find the good within me and remind myself I am worthy…that I am lovable.

My goal in life is love, and I am a difficult case.

The ones I have loved were never privy to my insecurity—my need for assurance and acceptance; my cracked heart; my incurable, progressive disease; the desperation to be heard and understood and accepted; forgiveness for not being the exact girl they thought I was.

My first true love promised we would stay friends for life and never spoke to me again. The next made excuses and apologies he obviously did not mean.  Another was verbally abusive. Another was scared. They did not know the pain they inflicted.

I’m damaged goods. I do not trust. I don’t really matter enough for them to deal with—even after promises. I have never lied about my mindset or feelings, but I have been victimized, abused, and ignored. Because, in my mind, I don’t matter.

So what do I need?: someone to be my date at a family or holiday dinner; to receive appreciation over a cooked meal—even a thank you; to know I am actually loved and not just a long-term hookup; for promises to be kept.

I have known what it is to be rejected since preschool. I realize I am not normal. I understand I fall in love quickly and out slowly…I am a wild card and I won’t apologize.  I am passionate.  I’m good at a lot of things…but watching someone move on so easily without me will always make it hard to breathe.

All I want is unwavering faithful love. My only desire in life.

A Moment of Personal Triumph

As I write this, happy tears are rolling down my face because I just biked two miles.  I’m sure this seems like a ridiculously small distance to most of you…but hear me out dudes…

After my second knee surgery confirmed my diagnosis of Rheumatoid Arthritis, I knew there would be hurdles, but I was still new to the life and body I inherited from RA and I underestimated just how difficult normal living would become.  I had no way of knowing I would own four canes by the time I was thirty, nor that Rheumatoid Arthritis is often treated with chemotherapy drugs…canes and chemo became my best friends and worst enemies only months later.

A year ago, I walked with a cane 80% of the time, took chemo three days a week and spent my waking hours in agony and/or vomiting.  I gave in and I gave up,  I did not see a way back from this, despite what I wrote for my friend’s blog.  My account of feeling better was basically a lie…I was losing faith in myself and faith in others.  I was in mourning for the life I had before and the life I had dreamed for myself.  Every day was a walking death.

Today I proved myself wrong.  I rode my bike four times and during the last ride, I nearly reached the mountains and returned…I may have wobbled a bit (concerning two 12 y/o boys enough to follow me a bit to make sure I would be okay), but I did it on my own.  I smelled a cookout, received barking enthusiasm from several dogs leashed by invisible fences, felt cool air on my face, waved at a teenager bringing in the mail…and I felt free from arthritis for just a few minutes for the first time in almost two years.

Wednesday, 9AM

When I compare moving to a death of sorts, way too many people are offended.  I refuse to become defensive because unless one has spent his/her formative years in a constant state of upheaval, the concept of personifying a location will seem bonkers.  In this respect–I’m bat sh*t crazy.

This is an indisputable and eternal fact: New York is the love of my life…so boys, get in line.  I rented a storage locker the other day to fill with my packed belongings and I am semi-terrified I will lock myself inside on moving day and cross my fingers no one checks it out for awhile.

I want to roll around on the uptown “6” platform in Union Square and climb atop the boulders in Central Park where my Multicultural Literature professor recited Reinaldo Arenas so beautifully, tourists would pause to listen.  I want to create performance art at midnight in Madison Square Park and run through Bryant Park on my birthday.  I want a security guard at the Met to yell at me for not having a metal clip with “M” attached to my sweater.  I want to share a cab with a stranger and for him to pull over to get my number before he drives off.  I want to bring my dog into every store I frequent.

I’m not very good with making and keeping friends…the ones I am able to grab ahold of for awhile are treasures.  Because of this, my city has become part of my identity.  I hope to be back in a year…there is no certainty, however–I expect only the unexpected.  But I can dream.

The Most Familiar/Dreaded Sight In My World

and all i see are bare walls

white clouds blind me

white clouds blind me 10/12/15

only bare walls, once again, all i see

industrial

shiny

white

a blank canvas comes to light as i spin all alone

no beginning

no end

always white shrieking–

lacking fulfillment

a soul always shrieking–

low-lit empty hollows

always, i am shrieking–

starting over again?

again?!?!

my industrial heart cannot be painted anew

he tries anyway

whitewashing my life with the salt from my tears

he still tries

Do You

My left hip is screaming at me.  On nights like this, I allow myself 60 seconds of self-pity as I dissociate from any ailing body part.  Despite this mental amputation, I cannot sleep. I lie in bed, contemplating all I need to do this week–all I want to do.  Crying was not on the menu tonight, but sh*t happens.  So I flip through memories like a storybook and appreciate the friends (old and new) who, this weekend alone, unknowingly helped me find some of the pieces I lost this year.

IMG_0138Last Friday, my partner in crime (Peter Dizozza) swung by my place in his super-efficient Fiat and together we embarked on what will forever be known as The Weekend of Magic on Candlewood Lake.  Joining us on this journey was a man I have heard about for 8 ½ years (and likely met at some point)…the ingenious Steve Espinola.  I have always enjoyed my mini breaks in Connecticut with Peter–trying out new music, canoeing, landscaping–but never had I shared these weekends with a third party.  

It was crazy awesome.

IMG_0221_2I did not think I would ever meet a composer/lyricist/musician on a par with my dear Peter, but Steve was a welcomed and welcoming surprise.  Although normally a bit shy around strangers, I was immediately at ease with this kindred spirit…and I finally figured out why: both men accept my crazy and run with it…and then run ahead of it.  The two are brilliant to the point of near insanity…a quality I admire and look for in a friend.  What can I say?: bonkers attracts bonkers…and intelligent, artistic, and insane individuals are just more fun…

Adding Steve to the mix reminded me of first getting to know Peter and realizing I didn’t need to dim my star just to fit in.  If I am running with a certain crowd who won’t accept my eccentricities, I need to keep searching for the Peters and Steves who will embrace the awkward, cerebral, creative chick who rambles incessantly and talks to her dog all day.

Then, I need to do a cabaret with them.

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picture by Steve Espinola

Why I’m Leaving, What I’ll Be Doing

Rheumy visit

Rheumy visit

As a victim of autoimmune slavery, I am living a life I did not want, subject to the whims and sway of a tyrant.  After my last blog, I received emails, texts, and social media messages asking my reason for leaving New York–plain and simple: Rheumatoid Arthritis.  

I do not intend to diminish the atrocity of human slavery by comparing it with my own condition–my intent is to clarify that my life is now dictated by a body plagued with a rogue immune system.  Unfortunately, my immune system is nearly as talented as myself and refuses to let up and allow me even a brief remission.  Because my condition only continues to worsen, it appears I have a progressive form of the disease…however, this could change one day if I find the right treatment.  Still, I wouldn’t wish this on anyone.

Yes, I talk about RA nonstop on social media and occasionally on this blog, but I write about my life and what is on my mind.  Arthritis is the only thing I think about 24/7–excruciating pain is difficult to ignore.  The stress keeps me up all night; packing/moving is torture; someone telling me to meditate more is asking for a toothbrush shank to the face.  Unless you have experienced years of chronic pain, you cannot dismiss it as “just arthritis” without being an ignorant d*ck.

Luckily, I have amazingly supportive parents (as they should be considering this is a hereditary condition) who want me to see a million specialists this coming year…I will embrace the plan in store because I’m tired of feeling like sh*t.  Hello nutritionist, I will eat as many beets as you prescribe.

hello peace

hello peace

Trainer, bring it!  Physical therapist…we will see.  Rheumy, please don’t give me methotrexate.  Acupuncturist, nothing new. Dad, thanks for the bicycle…I just need a basket for Delilah.  Mom…I will try not to fall through the ceiling again…especially if my brother-in-law isn’t there to save me.

I will be leaving in sixteen days (sobbing).  I will take pictures of the mountains and people falling off their treadmills at the gym…because that’s just hilarious.  I will take my niece and nephew trick or treating, participate in my beloved Jingle Bell 5K for Arthritis in Memphis with my sister and mom, and binge watch the cable shows I have not had access to for so long.

Even with the thought of rest and healing, I can’t help but die a little inside knowing I will miss my favorite time of the year in my favorite city in the world.  Fingers crossed I return healthy to enjoy Fall/Winter 2016.

LEAVING NYC…THE ONE THING I SWORE I WOULD NEVER DO

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Spring 2014 with Alan Cumming as the MC!

In about 2 ½ weeks I will be leaving the only city and state I have ever considered home: my beloved New York.  Due to corporate moves on my father’s part, I lived in seven states by the time I was nineteen, so I never felt like I belonged anywhere.  Making new friends was extremely difficult for me to begin with and I could not blend in if I let me do me. New York was number seven and I have been here for over eleven years. It is the love of my life.  New York taught me what bagels and pizza should taste like, ingrained in me an understanding of which corner I am on when I get off the subway, that you arrive at your destination faster if you ask your cab driver about his/her day and life story…

So, the highlights of the last decade+ and why I thank New York:

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Hidden West Village alley

I didn’t really start to get a sense of who I was/am until I was twenty-eight and the man I fell in love with encouraged me to express my opinions and embrace my brand of crazy.  He didn’t judge my quirks, spontaneity, dreams, ideas…he loved me more for them.  It took me twenty-eight years to trust someone with every piece of my life…my secrets…my heart.  It took twenty-eight years, but the first time I felt beautiful was the first time he looked me in the eyes.  New York gave me 2 ½ years with someone who encouraged me to break down nearly three decades of walls and let my rambling, loud, neurotic inner ribbon dancer shine (and still fit in because New Yorkers are crazy!!!)…

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NYU Hospital: my second home

I was a college dropout when I moved here, and after waiting tables became the bane of my existence, I enrolled in Hunter College as an English Literature, Criticism, and Composition major.  I cannot tell you how amazing it was to be one of the oldest students in all of my classes.  Contributing during classroom conversations (crowds in general, really) was a lifelong struggle, but because I was older, I didn’t give a sh*t about what anyone else thought because I had way more life experience.  I intimidated my classmates and had no qualms about flirting with my TA’s because they were all around my age (and I love nerds).  Hunter College also reignited my passion for writing and reading…turns out, my professors (and hot TA’s) didn’t mind my terrible grammar and constant overuse of dashes and dots.  Going to school in New York gave me a voice and rediscover a passion.

Rheumatoid Arthritis hijacked my body while living here, but one of the most rewarding experiences these past few years was sharing my story with the Arthritis Foundation and receiving a call from Bianca, the Manager of Community Development telling me I won a free massage!  The Jingle Bell Walk and Walk to Cure Arthritis were a ton of fun and raised my spirits.  Seeing so many participants at those events reminded me I’m not alone in this struggle and there are men and women without arthritis who understand how important it is to find a cure and support those afflicted.

Walk to Cure Arthritis 2015, Brooklyn Bridge

Walk to Cure Arthritis 2015, Brooklyn Bridge

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Empire State Building…my neighborhood as seen from Roosevelt Island

Living in New York granted me opportunities to attend events and experience things afforded to a fraction of the planet: NY Fashion Week after parties, the Met Costume Gala, sing for one of the most famous singers in the world while on a date with a guy in his band, participate in crazy performance art outside without receiving a single odd glance…it has, at times, been quite remarkable.

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M34 Bus

I will miss the noise, the winter beauty with twinkling lights on every tree and christmas shops set up in every park, dragging my dog along on my 4AM visits to the pharmacy, watching Delilah waddling in snow boots like a platypus, being able to walk home, cabs, public transportation, singing with Peter, INDEPENDENT THEATER!, my eclectic group of fantastic friends who accept me, falling in love with someone on the street…even if for only ten seconds.

So, GOODBYE NYC.  On to the next chapter…be back in a year (RA remission please!!!)…

This One’s for the Girls

IMG_3210I completely endorse women holding the power at the beginning of the relationship–a girl can always nag her star to shine a little less bright–but it is not only a power play, it is also a sex play.

No woman wants to be the chick wearing the granny panties that are being discussed next to the water cooler…we want to be the hot chick with an awesome rack and granny panties being discussed next to the water cooler!  Any chick that says anything contrary to this statement has never experienced the laced, satiny flow of her granny’s nether-region panties, down below…

This post is short and sweet, as is my topic. Hey dudes: girls like lacey, soft, lingerie.  So stop checking out Vicky Secret (I actually worked there), and do some research in any department store’s “intimate collections”…I suggest black because I recommend anything morbid and dark.