Lost and Delayed

October 5, 2016

I hate who I’ve become on days like this. Anger seethes barely under my skin and I bark, forgetting the words I am responding to belong to another person with feelings.

She whimpers with tears welling below her lids and I feel like a monster. My mother is sick and fragile in body and spirit, and I am harsh and abrupt. She is scared to call for me to momentarily emerge from my lair. “Do you like who you are?” she asks. My eyes burst, followed by my heart…lastly by my brain. But I have already erupted. It is hard to breathe during the pain I feel and what I inflict on the one who loves me most in the world. So I cry alone and sleep.

When I snap, I immediately regret my words and actions. Even more, I regret how they hurt the one who grieves from them. I’ve been lost in a personal hell…living with my parents in a state I hate; where I have no friends; where I have no future; where I am trapped and will continue to be trapped. Life is a burden most days. I’ve stopped crying every day, not quite complacent with the life I’ve been forced to accept. A life where oxygen is always five steps away and new york is on the other side of the world—a world in which I simply exist and do not know how to live anymore.

When I drank too much, I slept like a baby. My mother doesn’t understand it. She’s never asked why. I needed to fall asleep—to fall away from the world and dream I was 28 again. When I lived alone in a studio apartment in Midtown, had hope for my future, and had someone I loved beyond comprehension—people aren’t supposed to love someone who is not a blood relative this much. I felt destined to be lonely when he showed up one day. Suddenly, my life turned on the “life” switch.

It was an adventure—cliché, but true. I was young and vibrant and he helped me realize I was worth being wined and dined once or twice a week. He was my best friend. He was loved more than life. He broke up with me twice. It crushed my soul. I refused to respect myself after that. Suddenly I knew he’d figured out I was a fraud…pretending to be this special person while I was just a giant mess of immaturity and emotional baggage. He woke up one day, and knew…and it took him a few months to gather the courage to do it. When I think of him, I feel dead inside and my throat closes. I stop breathing.

Being sick is stupid hard. I never feel even close to decent. It leaves me exhausted with a glass of wine, writing a confessional at the airport. So here I am. I am in a cubicle workstation, mascara running down my cheeks, nose dripping, waiting to escape the country for a week. I can be someone else for a few days. I am someone amazing and alive.

This Was Not Supposed to Be My Life

IMG_2920At one point I was extremely open on this blog–too open–and I hurt people I loved and still love out of hurt and what I considered “artistic expression” (aka deleted blogs).  I wrote things that belonged in a personal diary and which should never have been published publicly in a state of passion.  But my health is my own…I am dealing with issues and emotions too many people are dealing with and experiencing, themselves.  So tonight, in a fit of passion, I am angry and blabbing about it as I tend to do.

On March 19, 2014 I was diagnosed with Rheumatoid Arthritis after my second knee surgery (I know the date because it is my best girlfriend’s birthday).  Soon after, I saw a rheumatologist (joint doctor) and began a chemotherapy drug called methotrexatea medication originally used to treat pediatric leukemia.  I would ingest it Friday evening, Saturday afternoon, and Sunday morning.  This doctor-prescribed medication left me in agony for almost half of every week.  I slept in the bathroom, curled around a toilet; I lost hair on my arms and patches of my scalp.  Rotted teeth and seared organs, I went without sleep and the ability to pick myself up off the floor due to a medication which was being used to manage my RA.  As I’ve said before, the doctors were clueless as to how my symptoms were threads woven to create my actual illness.

I was told I have Ehlers-Danlos Syndrome two months ago and upon hearing this change in diagnosis, I am shocked that doctors prescribed me chemotherapy without being 100% sure I had Rheumatoid Arthritis.  So, do I have arthritis?…yes, but is it a type which would have benefited from chemo?…not sure.  Could doctors have put the pieces of my health history together and figured out a certain diagnosis to replace or add to what was assumed?…absolutely.

Drugs like methotrexate have serious side effects.  As with any chemotherapy medication, one experiences nausea and digestive pain to a degree which makes it hard to breathe…so severe one’s boyfriend has to pry him/her from the bathroom tile.  In my case, I had a fifteen-year history of severe acid reflux or GERD (gastroesophageal reflux disease), and methotrexate destroyed my already-compromised GI system.  On Tuesday, I had another Upper Endoscopy (aka gastroscopy).  It is the most recent of over a half-dozen I’ve had since I was fifteen and it was mind-blowing, yet expected: my esophagus looks like hamburger.

My doctor has been scoping me for eleven years and he did not sugarcoat my situation.  My esophagus (the pipe which attaches one’s throat to his/her stomach) has been so traumatized since I began and ended methotrexate that I have to completely alter my diet and lifestyle, have another gastroscopy performed in three months, and possibly endure surgery in order to prevent a condition called  Barrett’s Esophagus and/or esophageal cancer.

So, I was continually diagnosed with a crippling autoimmune disease which could not be proven, I pumped my system full of chemicals designed to kill one’s immune system for said disease, and now the side effects haunting me from methotrexate and other issues could potentially lead to cancer.  I don’t know who to blame other than myself for trusting a surgeon and doctors who refuse to answer the phone or forward my medical files to a new team of doctors or myself.  I  have certainly never lived on water and bread, but it is clear past prescriptions only exacerbated my issue.

And so my epic continues.  I wrote a blog about being misdiagnosed and I thought that would be the extent of the story, but I now feel completely trapped in a body I do not recognize–a body that is slowly trying to kill me.  Where does this end?  One never expects his/her health to begin failing quarter-life, or that one’s quarter-life could become midlife.  At thirty-one, I assumed I would be married and have a stable career…or any career, really.  No matter how smart you are or where you end up going to school, life will always surprise you.  No one knows whether or not they will live the life they expected… I can only hope this life becomes the life I want to live.  I am banking on it.

 

My Depression Is Not Taboo

I’ve never been “normal”—literally, never.  So many people have struggled with depression at one point or another for who knows what reason.  It feels uppity to claim my story is worse than any other story reported in history…but just functioning is a IMG_1581struggle for me.  Thirty-one years of sobering/stoned horror can be relived in my journals and notes from countless therapists and psychiatrists.  Time does not heal all hurt, however, and I can admit from the depths of my soul:

Depression has been the biggest struggle of my life.

For thirty-one years, my mental health has been a total lie.  My quiet “perfect” persona was completely manufactured—a handful of people have ever seen who I am with no barricades, cautionary signs, etc.

 I have been asked what thirty-one years of chronic depression feels like, and the only response that does not offend the general public is: excruciating. Existing day-to-day is almost numbing—I have learned to disassociate from my body. This is how I live.

In no way do I expect anyone (outside my medical team) to understand my physical/mental/emotional issues, but I do expect tolerance and an open dialogue when confusion surfaces.  I cannot count the number of times doctors would view my chart, see a list of antidepressants and antipsychotics, look me in the eyes and say, “but you’re so pretty.”  I’m sorry, I will come back next time my face looks jacked.

My writing about pain tends to come across as cold and factual—it is this way for a reason: I can only expose my weakness if writing from a distance because it makes others more comfortable. I will work on that.

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!!!)…