Endo-ME-triosis

It has been one week since I saw Dr Seckin in New York City and my belief that I have Endometriosis was more or less confirmed (technically speaking Endo can only be confirmed when the tissue removed during surgery is analyzed – but the symptoms make it very obvious).

During this past week I have felt several different things, in stages, such as experiencing grief.

I have been trying to understand where the me comes into this disease. How has this disease shaped me in the course of 15 years (or perhaps my entire lifetime)?

Endo is a mysterious disease that hasn’t really been figured out yet. Where does it come from? Who knows. Is there a cure? Not yet. Is is common? YES. 176 million women worldwide and 1 in 10 in the United States have it.

There is this idea that if I am “cleaned out” I will be better. I will be rid of the disease. I would have to have deep excision surgery for this to be so, but it is expensive (out-of-pocket $25,000!!!) and no Endo surgery guarantees that the pain will go away or that the disease won’t come back.

How do I manage and live with it is what I keep coming back to. Even if I have surgery, will I still technically have the disease in my body for the rest of my life? How does that define me?

Tuesday, fucking Tuesday!

Part II of my trip to NYC. Once again from the train (thanks for the free, good WiFi Amtrak):

I have stage one Endometriosis (out of four – four being the worst)! It feels so good to say that.

After 15 years of bullshit, Dr Seckin told it to me straight. I have it, he can clean it out with deep excision surgery (not the all too common and harmful laser) and then I should be good to go.

Of course he can’t guarantee that it will never come back during my life time, but I have lived with it for 15 years too long. If I can have 15 years pain free after surgery I’ll take it!

It could be done as soon as May or June, but financing is the tricky bit. I’m getting all the info sent over from the office tomorrow, so I don’t know the cost yet. But he works out-of-network with all insurances, meaning you have to have good out-of-network benefits for any or all of it to be covered. I have Rhode Island Medicaid, which has been great in Rhode Island, but obviously will not work whatsoever in New York. So, I could likely change to a plan that might cover some of it, but how much would that cost per month and what would it cover?

I’m not worried about any of that. I’ll figure it out. I have followed my gut and stuck to my guns on this journey thus far, so I will continue to do so.

Fucking Tuesday for the win, am I right?!

Tuesday

Good things happen on Tuesdays. Airfare is cheap. It’s a good day to travel. It’s an unassuming day. People are just getting on with things on Tuesday.

For me, this might be the most important Tuesday in 15 years. I am on the train to New York City to see the Endometriosis specialist Dr Seckin.

I get really anxious when I go to the doctor. The thing with me is, is that I tell doctors everything that is going on and suggest what it might be. I dare say I know more than them when it comes to my health. In fact, I was the first person to figure out I might have Endometriosis, years before a doctor even used the term. I’m agressive.

After years of feeling like I was not being listened to by most medical professionals, I adopted this behavior. I feel that it got me to where I am today, on this train, going to see a specialist.

But every time I see any doctor I get anxious. I’ve been let down so many fucking times I barely have any hope left each time I have to talk about​ my symptoms again.  Will they listen to me this time? For real? Will they just tell me how to manage my “condition” for the next 6 months, next year, next five?

I hope today is different. I hope today is the most important Tuesday in 15 years.

Drafts

I have so many potential posts sitting in my drafts folder. There has been a wide variety of strange occurrences in my life in the past few weeks, and I simply cannot wrap my thoughts up tight enough to conjure a single-subject essay of any kind. This week, instead, seems like a good time to share a poem.

 

Masculine energy

Is ever prevalent

In myself

In them

And the female president

 

It’s no comfort

To be accosted

With the deep sounds

Of patriarchy

 

This bench

I chose

Serves it’s purpose

Or so it goes

 

I will not budge

I will not fight

This bench

Is mine

It is

My right

 

This bench

I chose

Serves it’s purpose

Or so it shows

 

Masculine energy is

Ever prevalent

Sinking deeper

And deeper

Into the pavement

 

Off they go

And I still reside

On this beat up bench

That I found

Outside

 

 

Let’s Talk About Stress

This week I thought I would be sharing how my appointment went with Dr. Seckin, the Endometriosis specialist in New York City.

However, last week (literally the last week of winter) a snow storm by the name of Stella hit everywhere between D.C. and Boston. It conveniently shut shit down the day before I was supposed to travel and just two days before my appointment.

But I didn’t let my adrenal glands kick into high gear too quickly. I took a deep breath…

Then mumbled to myself “You’re testing my patience Endometriosis”, whilst calmly making all the needed changes to my itinerary.

I really feel like I handled the whole situation well (no stress-induced headaches involved), and even got to treat myself to finally seeing the beauty that is the film Moonlight.

But I was tested again, because I still went to NYC for 26 hours, just two days after the storm.

Why the fuck would I do that?

Because I couldn’t miss seeing Patti Smith, amongst others, play at Carnegie Hall for Philip Glass’ 80th Birthday Celebration!

This was scheduled for the day after my appointment and was one of two planned “fun things”. The other was a free taping of The Daily Show with Trevor Noah, which was cancelled anyway (one day, Trevor… one day).

Luckily, this was also the one day I was there with friends, who brought light to the darkness that is Manhattan (because the buildings there are so goddamn tall the sun barely hits the streets).

So I conquered the shit out of that city. I walked slow. I was nice to people. Oh and I smiled while I was there. I’m sure no one noticed though. For a place with such tall buildings, no one looks up enough.

I asked, “What would His Holiness The Dalai Lama do whilst here?”

“He would laugh!”, said one of my friends.

So I sat in the back of a taxi moving one inch per minute, and laughed. I laughed at the kids on the school bus making funny faces at me. I laughed at how ridiculous it is to take your dog out for a poo in a concrete jungle. I laughed at Iggy Pop shaking his bum on the stage of Carnegie Hall.

Erin 1, Stress 0.

Human

On my recent travels I found myself at an airport. After the TSA agent looked at my license for a little longer than usual and commented that “hairstyles change so fast these days”, I was granted access to the vulnerable, makes-everyone-feel-like-they’re-a-criminal shit show that is security.

I was behind a woman with skin just a bit darker than mine; hair just a bit darker than mine. She went through the machine that is probably giving us all cancer while the TSA agents ogle at our naked bodies, and was then told to wait. She was taken aside by a (white) female agent and patted down completely, all the way to her god-damned ankles, checking her socks. 

Watching this as I waited my turn alarmed me. Going through security always makes me a bit uncomfortable, but I’ve never had a single problem and I know it’s because of the color of my skin. I think that’s what makes me uncomfortable; watching others be treated like they are less-than because they are not white.

My turn comes and they tell me (aka ma’am) to move my hair from the side to the back. Duh, my braided hair is where I’ve stashed all the drugs I’m trying to smuggle. 

I step out of the machine, a (white) male agent takes one look at the screen, and says I’m good to go. No pat down by the (white) female officer, no suspicion. My screening took at least a minute less than the woman in front of me.

This is but a small example of the racism and fear of “other” that is very present in the United States and is for some fucking reason accepted, with heads down, by society. 

We are all immigrants (unless you are Native American). How has this simple fact been missed? 

We are all human (unless you are a Cyberman from Doctor Who). How has this simple fact been missed?

United States of America, we need to get our shit together.

I AM A WARRIOR

Chronic pain is a lot of things, and it obviously makes you feel a lot of things, but most of all it’s just an annoying little bitch.

I could go into the depths of my pain, but quite frankly I’m tired of talking about it and would like to just get on with things. I don’t think humans are designed to fully understand each other’s pain. It’s a unique experience; solitary.

Piggybacking on last week’s Bad Ass Book List, I thought I would dive right into another list. This time I’d like to share the music I listen to that makes me feel powerful and hopeful in times of pain. I feel like sharing what we love about music is a really positive thing to do, and I think it’s really important to spread little bits of positivity about whenever possible.

POWERFUL:

Warrior by Aurora

From my favorite album of 2016, All My Demons Greeting Me as a Friend, Aurora suggests a kinder approach to being a warrior; a warrior of love. Aurora exudes love not only in her recorded music but also in her live performances. The chorus of this song also makes for a really great pick me up whenever you need a boost.

 

Cool Slut by Chastity Belt

Chastity Belt take back the word slut by making it fun and positive. That’s powerful. “We just wanna have some fun, try to bone everyone.”

 

People Have The Power by Patti Smith

This song is actually both powerful and hopeful, because people have the power to redeem the work of fools (YA KNOW WHAT I MEAN)! Patti makes the world make sense.

 

HOPEFUL:

From Nowhere by Dan Croll

It’s not so much the lyrics in this one that make me hopeful, but the music and what Dan created as a whole on his debut album Sweet Disarray (and what is to come on his upcoming second album). As an added bonus, I was introduced to him live, opening for none other than Aurora. At the time I was not feeling very hopeful about anything (probably because this was the weekend before Election Day in the USA), so you can imagine my renewed sense of hope after letting Dan into my heart.

 

Lucky by Aurora

Another track from the wonderful  All My Demons Greeting Me as a Friend, Aurora sings about troubles past, present and future, but with an understanding that she is simply just lucky to be alive.

 

Serenading In The Trenches by Sondre Lerche

I just love Sondre’s new album Pleasure so much I wanted to share what might be my favorite track and video. Sondre himself sump up the video best: “I wanted to play out romantic relationships, sexual relationships, even a father and son type thing – to really have us touch on almost any kind of deep relationship that two men, or even a woman and a man might have. We [Sondre and his drummer Dave, who co-stars in the video] know each other so well, and we enjoy each other so much, I thought it would be really beautiful for us to take on all these different relations in a video.”

Bad Ass Book List

Let’s take a moment to acknowledge the beauty that is the public library. I read a lot, and without access to free books I don’t think I would be able to do so. The opportunity for anyone, at any age, to learn about pretty much anything is life changing. Here is a list of some bad ass books I recently read courtesy of the public library, in handy subcategories, with links!

Feminism:

How to be a Woman by Caitlin Moran – An amazing take on what feminism actually means. Skeptical? Then take this quiz from the book:

“So here is the quick way of working out if you’re a feminist. Put your hand in your pants.
a) Do you have a vagina? and
b) Do you want to be in charge of it?
If you said ‘yes’ to both, then congratulations! You’re a feminist.”

Moranifesto by Caitlin Moran – In this most recent collection of columns from The Times writer, we get a fantastic read on a broad spectrum of topics. From misogyny on the internet, to Benedict Cumberbatch, Syria, how the Oscars are evil, wind energy and of course, her very own manifesto.

Bad Feminist by Roxane Gay – In this collection of essays, Roxane points out that it’s totally OK to suck at feminism sometimes, because at least we’re trying.

Punk Rock:

M Train by Patti Smith – My guiding light, Patti, invites us into her life of cowpoke dreams, a beloved cafe, routine solitude and detective shows. I loved this world so much I was sad when I finished it in a few days. I have since read it again.

Girls to the Front: The True Story of the Riot Grrrl Revolution by Sara Marcus – Music would not be where it is today without the women and girls of the Riot Grrrl movement. I bow to them whilst loudly playing my electric guitar.

Memoir:

Just Kids by Patti Smith – The story of Patti’s beautiful relationship with Robert Mapplethorpe in 1960s and 1970s New York City. “I imagined myself as Frida to Diego, both muse and maker. I dreamed of meeting an artist to love and support and work with side by side.”

Born a Crime: Stories from a South African Childhood by Trevor Noah – There can be only one man on my list, and that man is Trevor! In his first book, the comedian tells us about his early life of being born during Apartheid in South Africa to a black mother and white father. It is a wonderful story about identity, solitude, the power of language and loving your mother. He grew up to be a really great human.

Fiction:

How to Build a Girl by Caitlin Moran – The first novel from my love Caitlin was slightly inspired by her own British working class upbringing, and very nearly makes me want to go back to being 16. It is a true inspiration at any age, really, about being yourself and having a bit of fun along the way. “You must go out and find books and poetry and pop songs and bad heroes—and build yourself.”

Awareness:

Zero Waste Home: The Ultimate Guide to Simplifying Your Life by Reducing Your Waste by Bea Johnson – When I’m not smashing the patriarchy, I’m trying to protect the environment. Actually, I do both of these things all the time, every day, with every ounce of my being. Bea has helped me become further aware of the problem of waste and how to change it. Yes, we can all make a difference! It starts with you.