I Am Waiting

I’ve spent a lot of my life waiting

To see if the pain will stop

To see if I’ll feel better

Waiting

For them to love me

For them to come home

For them to let me go

Waiting

For a true purpose

For the wind to stop blowing

And the weather to get warmer

Waiting

For a parcel in the post

For an epiphany to solidify I am human

And not a ghost

Waiting

For my plane to arrive

And waiting to take off

I’ve spent a lot of my life waiting

For things to begin

And end

 

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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?

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.”

Pain in the Uterus!

It seems as those women are expected to endure pain. From high heeled “shoes”, to underwire bras, to corsets (the original underwire bra), to form fitting clothing that cuts off your circulation. We’re pretty much tough as shit because of this, so what’s a little uterus or ovary pain, right?

My mom shared an astonishing article (here) with me about how a woman with extreme abdominal pain had to “wait her turn” at an EMERGENCY room in Brooklyn, New York, because the EMTs, doctors and nurses all down played her pain and they were overcrowded with patients. Lucky for her, her husband was there to advocate for her, as she was in so much pain she was left unable to barely communicate. That sounds like an emergency to me, emergency room personnel!!! And maybe that’s just it. We’re dealing with “medical professionals” who are not taking people seriously anymore. It’s like they think we enjoy coming to the emergency room just to mess with them and that nothing is ever wrong with the human body. If they don’t see blood spewing out of you, then tough luck. This woman was not even physically examined until a male doctor clocked out and a female doctor clocked in right after, showing immediate disbelief at the situation. It turns out that the male doctor said “it’s kidney stones” and basically sedated her with pain killers. It turns out she had something called ovarian torsion—the fallopian-tube twists, and cuts off blood. There was no saving that ovary. They had to take it out and they should have done so 14 hours earlier (the overall time this woman ended up spending in the ER)!

I have been lucky in my recent hospital visits to go to one specifically designed for women and all that goes on inside our nether regions. From one visit, I recall in my oxygen-high stupor, the male EMTs having never seen such pain from a female related issue and looking just as scared and baffled as I, the one with the heart rate of 46. The one female EMT looked calm and said she knew exactly how I felt. The female doctor who saw me did an ultrasound. My current (male) gynecologist doesn’t see a reason to do an ultrasound, MRI or CT scan to look deeper into my pain.

So, what’s the deal gents? Do you need to literally walk a mile in our shoes before you can take our pain seriously and provide us with better medical care? You’ve been warned, they fucking hurt.