Endometriosis and The #ENDENDOMARCH 2015

I registered for the EndEndoMarch2015 in Washington D.C today, and though it seems like something I cannot physically handle, I am telling myself, indeed, I will be able to when the time comes. I will march for myself, and those that can't. I will march for the children I wasn't able to carry in my womb. I will march for my future children, that they will not see a sick mother, not able to play or take care of them. I will march for the seventeen years of missed or incorrect diagnoses, and missed opportunities. I will march for every woman that has to have a hysterectomy at 28, like I did. 

I will march for my college years cut short; for the teaching job I had to leave. 

I will march for everything endo took from me. 

I will march for my mom, who worked her tail off with Endometriosis growing inside; three jobs, including taking care of three growing girls. 

I have been trying to find the words to explain my frustration with this disease and those that deny how entirely heartbreaking it is. Because of the way I was raised, (by a Vietnam Veteran. A Marine, no less), I have a tendency to hide the pain I feel. I know a lot of chronic pain sufferers do the same. 

Please say that you will just listen. That is all we really need. Let me cry. 

There is struggle with it, that effects the WHOLE body, not just reproductive organs. 

Extremely painful. Yet I have those that doubt me, and my strength. You have no idea. 

It is. If it isn't the cramps, it is body pain. It is the fight to get your physical strength back that the cramps depleted. It is the lack of sleep, trying to function while in a pain fog. It is the pain of losing friends and partners that do not understand or support our diagnosis. 

This was one of my favorite lines from one of my favorite episodes of Buffy. You cannot get stuck in the pain cycle, instead we must find hope and LIVE. Find answers. Find support and reach out when you are feeling alone, scared, frustrated, at your wits end. It is in this way that we will heal ourselves and others.  

Call me selfish, but I am marching for me. For all that I have been through the last sixteen years. 

For the doctors that want to help. I want to find a cure, a cause of this disease. I don't want anyone else dismissed, or made to feel less than. I don't want any other woman to feel the crushing loneliness I did, or still do. I don't want anyone else forced into choosing to conceive or have a total hysterectomy, like either will be the cure. THERE IS NO CURE. 

Please show your support. 

If you cannot make it to the march, consider wearing yellow for your endosister, your friend, mother, sister, or woman you never met. Consider wearing yellow for us. 

More info here : Why We March

More info on EndoMarch

Basic Info on Endometriosis

Of Labels And Identity

Of labels and identity
   'I am' is a powerful statement. 'I am'/'you are' can explain and label a variety of things, including emotions, vocations, lineage and culture, ailments, etc. But, simply saying “I am’ without the need of anything else taps into your true self, the Divine soul expressed inside. Because all those things describe your physical body, and often limit you as a infinitely beautiful soul.

These labels often get confused with our sense of self, of restrict us from learning about our potential entirely. 

    

 Also, consider the labels others use to describe you.. Do you come to accept them as part of yourself, without really examining them, or even realizing that they are just that person’s limited point of view, as dictated by their life’s experiences, beliefs, upbringing, etc? 

What happens when you are no longer what you've come to identify with? Do you experience the crisis of identity? Is it possible for you to move on from that and grow into your being, or do you hopelessly hold onto that label. Causing yourself stress and anxiety? 

Here, I express the labels I've heard about myself, or those that I've given myself for years, the stories attached to them, and those that hindered my growth. 

When we strip away all of these words, we are bare and  more vulnerable. It can be scary, but also liberating. And When we remove the labels we give others, we are forced to really ’see’ them just as they are.  Without preconceived notions, judgments, boxes, or labels. 

                      Open your eyes. See with your heart.

I am/not

  

( Not to be confused with ‘‘Is/not”, written by the brilliant Margaret Atwood )

I am

Water of the streams

Particle of the stars

Breath of the Divine

Roots in the Earth

Fire in my belly

                         I am

I am not:

Lazy, broken, or incomplete

I am not half of a whole

A doormat, 

Without purpose or drive or focus

I am:

 woven in the blanket of my ancestors

Your ancestors

A fine thread indeed

connected in this great web of life

A living expression of the Goddess and God
   I am

I am not:

Too Sensitive

Unworthy of respect or care or kindness 

Nor am I a sinner, or savior, nor needing saved

I will not go elsewhere to ‘find myself’

I am not lost

  I am right here

                     I am

I am the morning dew

The willow leaves

The evening fog

The comfort of the campfire

Breath of  Gaia

            I AM

     

I am
shining stardust
         I am

More than you percieve
I am
a river of emotion
I am
the dance of the Divine

                

                 I am

Backwards thoughts, Future Tense

I've been doing things a little backwards. Instead of writing my thoughts, and getting them out of my head, I've been letting them sit and stew. Or, I just ignore them completely. I know better. I'm not going to experience any healing, or work through anything without the process. I lost two of the most important people in my life last May. My grandparents both passed, and I was in shock for a long time. It isn't like me to ignore my emotions, or not to work through things; being someone with chronic health issues, I rarely have the choice. Holding things in equals pain. For me, it manifests with migraines or fibro flares. More than usual. I do so much to improve my health, but my mental health is just as crucial. So, expect me here more often, spilling my thoughts into the internet. As if there isn't enough people doing that.

All of my Loves

I go to Polyvore and Pinterest on low spoon days.(see bottom if you do not know what I am referring to) This way I can still be creative, and share ideas with others. On Polyvore, I like to create sets I would actually wear in real life. There's no heels in my current life; pants and bottoms tend to be loose fitting. Case in point, the harem pants. They don't put pressure on my abdomen and hips, which is great! Comfort is key, so maxi skirts, hoodies, etc. I have worn sarees on special occasions, so that's totally justified in my collections. I am extremely passionate about dance. I began learning around five yrs of age, and never wanted to stop, even when my parents couldn't afford lessons anymore. One of my biggest heartbreaks when I started getting sick was not being able to dance anymore. Endometriosis and Interstitial Cystitis took over my body and life; It took years before I started to dance again. It is the fire in me. Whether others think I am talented or any good, it really doesn't matter. I honestly feel the spirit move through me. A connection to all things. I am determined to learn Kathak and Bharatnatyam, two of the eight classical dances in India. (represented by the gungroo (dancing bells) and statue of Nataraja) Hailing from the North and South, respectively. More about my love of India another day! My desire for travel and adventure is represented by the photo of the open road. So many places on my bucket list! How would you define me, with just the images below? It all boils down to living with an open heart and mind for me. By the way, If it looks like I cannot separate my paragraphs, it's because my blog hates me today. No, really. Maybe it's the link from Polyvore?? Who knows.

All my Loves by willowsong81 featuring bronze bookends

"Spoons as illustrated in the Spoon theory http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ This literally changed my life

In Case You Missed it...

In case anyone missed it...

If you're not familiar with the work of Ms.Jenna, she happens to cuss now and again. But, the message remains very powerful. I completely agree, even if I have trouble being my authentic self. I recognize that it's a process, and am not exactly at the point of awesomeness that Ms. Marbles. And that's ok. BUT, I am further along, and that much closer to finding the real me.

Surprisingly enough, it was going through the extremely difficult times at the onset of  illnesses that I had the most growth. I started to see the friends who only appreciated my skinny, blonde, healthy, party-girl persona, and the ones who could care less if I was in sweats.  Even the family members who were using me for their own selfish ends; the ones I was no longer able to do favors for. 

It has been a very painful (in more ways than one) decade. Following almost as equally painful teen years. However, it was not in vain. I am proud of me for still standing. Or hunching over in pain. Whatever. 

She makes a brilliant point about it being lonely being yourself and not listening to others. I know for a fact that I am unique, just as you are, but if I had stayed with a particular group of friends, I would not be the super-amazing chic I am today. Or follow my passions and dreams. For instance, I can't count the times others have made fun of me for wearing mehndi or bindis , listening to Hindi music, having purple hair, etc. Someone will always have an issue with something you do. There will be someone that doesn't understand. I am not harming anyone. I do not use aspects of other cultures for my own gain or because I think it's "cool" or "trendy." On the contrary, I tend to gravitate toward things that is against the grain. Especially for my b.f.e town.  

She also brought up a another good point. Being your complete self assures you that the people that do love and care for you, love the real you! It comforts me to know the people I surround myself with, and actually let see glimpses of the real me, really love me for who I am. 

In the Light of Darkness

    In the Light of Darkness

She walked through the field alone,
She stretched and Shook the stardust and dreams from her flowing hair,
 Uncertain of the path before her.
It was barely visible; the weeds and weather had covered what was once a clear trail.
She looked back at her  past self, and all the obstacles she had faced thus far.
‘poor thing,’ she muttered, ‘so bruised and beaten. It’s a wonder she made it as far as she did.’
Then she felt the Goddess speaking from inside. From her heart? Her mind? She wasn't sure which.
  “Tell her. Tell her how proud you are of her for carrying you as far as she did. Assure her that she did the best she could with what she had. Tell her she is, was, and always has been beautiful, radiant, smart, special, and talented...just the way she was. Tell her I never left her side. Speak honestly. Speak frankly, but be gentle. She has been through so much. She needs to hear it.” 
   She gazed up ahead, through the fields of flowers and brush. She rested her eyes on an endless ocean, kissed by the milk-dipped moon. And here is what she said--
 “ I am so proud of you for all that you have done. You've been through so much, and I know it was part of your path. You got me to where I am today, and I am thankful. You are beautiful, little one. Inside and out. It pains me that you never saw it,” she choked back tears as she continued, “I wish you didn't let others make you feel unwanted or not good enough. There were those that liked, even loved you for you. We have that now. It might not be who you wanted, but it’s who we need. Please don’t be sad, or feel ashamed. For anything you've done. I know now. I understand.” She kept her gaze steady on that reflection of the moon. Focusing on its quiet, receptive energy, she poured her heart to the weary traveler behind her.
“I know the pain you've felt, and the loneliness. I don’t know how you did it. I don’t always know how I will get through it myself. But you did, and I will. Just please, don’t ever think of yourself as weak. I know many that haven’t made it as far as you have, and could survive all you did. You are such an amazing person. Don’t let anyone tell you any different. We need to let those things go now. Let the waves wash over us, and carry away the sadness, anger, and hurt.”
  She turned on her heels then and faced her former self. At that moment, other versions of her past self stepped from the shadows. She tilted her head, as if listening for more guidance, but nothing came. In an instant, grasped them by the hand, indicating for them to form a chain. No longer dusk, she led their way through the darkness of night, with only the moon to guide her. Once, twice she stumbled over rocks and brush. Her long, flowing skirt got caught in the thorns, but still she pressed on until they reached the sleepy ocean.
  Once they arrived, she finally let go of their hands. She motioned for them to sit along the shore as one, letting the waves tickle their feet. She heard giggles from her youngest self. Her teenage self was crying; surely a release of emotion. She watched the sickly one dance in tide-pools, and another curl up and let the waves wash over her bruised shell. Soon, all of them were shining with the light of the moon. The bruises were gone. The tears washed away. The hate, pain, sadness, and anger had dissipated with each crashing wave.
Satisfied, the woman walked out as far as her legs could reach the sandy depths, and plunged head first into the healing waters. And she smiled.

Inbetween

  

Inbetween


Inbetween- where you will find the fairies,
the mermaids, the dryads.
And this is where you will find her.
Is she a changeling, you ask?
Was she switched at birth, so a human child could be taken,
To the thinnest veil of existence?

She is so often between worlds, times, places, faces, and feelings.
A human body with a restless spirit,
Not of this world,
But a world between.

Hope and heart, Mind and soul,
Have little meaning when you put force to them.
Can someone truly understand a spirit such as hers?
To dance in the palest moonlight, and sings songs to the trees.
To whisper secrets to the streams, and delight at the humming of bees.

Inbetween what she once was, and who she is,
Between love and fear,
Girl and woman,
Free and shackled.

Hope and heart
Mind and soul
Have little meaning when you force them
Or When you take them separately.
She demands and admires respect.
Ask for permission, and share in the beauty of it all.
For this is the way of her kindred,
And the spirits inbetween.