Monday, December 8, 2014

My TRIP TO THE CENTER FOR ENDOMETRIOSIS CARE (CEC) Part One




PART ONE: Getting ready for our trip
2 weeks until departure for Atlanta, GA
November 18 2014- December 2, 2014
Long Island, New York

The past two weeks have been a frenzied whirlwind of lists and errands obviously too arduous for my aching and exhausted body to accomplish. I have poured every fiber of my being into planning our trip down to the very last detail while simultaneously devising strategies to ensure that the kids will have a smooth and tear-free transition to their Grammy and Poppy’s house for the five days Elie and I are away. I credit a combination of my obsessive personality, adrenaline, and pain killers for the seamless way it all seems to be transpiring. The truth is, I know I should be taking some time to think about the upcoming surgery, carve out a few moments to prepare myself for the emotional and physical toll it will take on me but my mind has strategically sequestered all thoughts that threaten my peace of mind and only allows the logistical details of our trip to trickle through.
 It’s not until our plane is gathering speed on the tarmac that all of my ‘to do’ lists evaporate from my brain and the sudden realization of the gravity of the upcoming event takes their place. ‘What-ifs’ in every shape and size flood my mind, nauseating me as I wonder what I would do if the surgery is not successful.  How will I return from Atlanta to all of those who helped me get there and tell them it was all for naught? What will I do if the doctor tells me he found nothing in my insides that could be causing pain and has no idea where my pain is coming from? How will I find the strength to continue to fight if the current physical and emotional agonies that dictate my life have no foreseeable end?
As my terrified thoughts multiply, the cool hand of my levelheaded husband slides its way into mine, slowing down my manic brain and heart.  Together with his indisputably reasonable and comforting words, I am able to tentatively land my thoughts in optimistic territory.  It will be alright, I tell myself firmly; It has to be.

Thursday, March 6, 2014

WHO IS AN ENDO-SISTER?

Who is an endo-sister? She is a strong, determined woman who fights fiercely and loves deeply. She tries her best. She is not lazy or pathetic and she doesn’t give up. She may not sugarcoat the painful emotions and terrifying symptoms that she deals with. Her honesty may even frighten you. But when you meet an endo-sister, you are meeting a proud, indomitable warrior. A soldier who goes into the fire on a daily basis and emerges with a thicker skin time and time again. A woman who should not be pitied for her pain, but admired for her ever-present resilience and strength. THAT is an endo-sister.


Friday, November 22, 2013

My Husband




I think the title is self-explanatory...

I’m broken and shattered
Feel beat up and battered
I just cannot do it
Preparing to lose it
Darkness abound
There’s no hope to be found
My overstuffed load
Is about to explode
No good is left
I’m completely bereft
Lost all of my might
Lack desire to fight
Falling down fast
Don’t think I will last.
Then you hold me tight
Remind me to fight
You dry up my tears
Allay all my fears
Despite all my pain
You make me feel sane
It’s just what I need
Feel my sadness recede
My heart opens wide
And lets sunshine inside
From the end of my rope
I see glimmers of hope.







Tuesday, November 12, 2013

My Angels

Last night was one of the best nights of my life. The Endo Warrior's launch party was inspiring, uplifting and a total blast! It was truly humbling to see the amount of people who came out on a weeknight to stand up to endometriosis and support those who have it. I was honored to be asked to speak at this party and I wanted to share my speech with all of you. Please note that everything that I say is, as always, 100% true and from the heart.

(The following link can be used to listen to a video of my speech. It's hard to see anything, but the audio is there: htt://www.youtube.com/watch?v=AOWw1rJVA-M&feature=em-share_video_user )

It is night. Impenetrable darkness thicker than cotton engulfs you as you frantically struggle to find your way. The blackness around you seems foreign and foreboding, causing your heart to beat wildly and chills to dance a steady waltz on your back. Your movements are frantic but purposeful as you propel your body forward into the unknown, determined to find your way. You reach out, desperate to find a tree to lean on or a stump to rest your aching body on. But there is only the impervious night, stretched out in front of you like a dare. You are lonely, so lonely, and afraid, so terribly afraid. Branches snap sharply under your feet, startling your already terrified heart, and for the millionth time that minute, you find yourself wishing you could give up, lie on the frozen ground, and let yourself go. But instead you continue on: stumble, trip, fall and rise, stumble, trip, fall, and rise- a morbid dance that never seems to stop.   Until one moment, when instead of rising, you find yourself falling further and further into an abyss, as if you are being pulled down by an imperceptible weight. Your body feels heavier than its usual immensity, as it pulls you lower and lower until rock bottom becomes a terrifying certainty. You shout a desperate prayer to whomever or whatever you believe is out there, I cant do this any longer! Help me! Dont let me fall! as you concede to yourself that your situation can only get worse.
And then it happens. At that very moment when you have officially let go, that moment when you brace yourself to hit rock bottom, a miracle occurs. A flock of gorgeous angels ventures towards you, each angel a different color and size, unique in her own beautiful way. As the flock approaches, you begin to notice that your body feels suddenly lighter, less exhausted and less painful. "You can do it," you hear them whisper intensely, "we're here for you." And just as your body grazes the bottom of the abyss, you repeat their mantra, "I can do it, and they are here for me." To your delight and astonishment, the moment you finish the last word, a set of wings, fiery yellow and stunningly bright burst from behind, and you begin to fly up, weightless and secure. The pure light of friendship and belonging guides your way as you fly off with your new flock, not completely healed, but certain of one thing: you are no longer alone.
--
I have been living with the incapacitating and overwhelming disease of endometriosis for the past fourteen years of my life. I began displaying symptoms at age fifteen and was diagnosed at twenty six after a long and arduous journey. It took ten years of my life to convince doctors, my family, and myself that there was something wrong with me and that the symptoms that I was experiencing: infertility, excruciating and debilitating pain, fatigue and bowel and bladder issues, were not normal.  I was sent from doctor to doctor, gynecologist to gastroenterologist, neurologist to urologist and finally, to a psychiatrist. I was told the only way to "fix" me would be to put me on antidepressants, as the symptoms I had were "all in my head."  I frequently visited the hospital, sometimes for many days at a time as I could not function with the pain. The day I was diagnosed with endo was one of the most liberating and validating days of my life. Unfortunately, the days since then have been much more difficult.

About six months ago, I felt as though I was walking in the pitch dark.  I was depressed, overwhelmed, lost and hurting. I couldnt take care of my children or give them or my husband the love and attention they deserved. I could barely take care of myself as the pain and fatigue I experienced every minute completely debilitated me. Everything is my life felt upside down and out of control. No doctor seemed to be able to help, despite the three laparoscopies and a hysterectomy that I endured. It was though I was falling down a hole, on my way to hitting rock bottom with no hope for the future.
It was at that desolate and dismal time that I found my angels. I was doing some research online for the book I am writing about endometriosis when I discovered a group of women called the Endo Warriors, led by the immensely special Nichole Malachi, Jill Fuerich and Jordan Davidson. I was thrilled to learn that they were having a support group three days later in a place that was very close to where I lived. I signed up and counted down the days to the meeting. Just having the event to anticipate gave my life a weightlessness and purpose that I hadnt had in a while.

 I wish you could have all seen me during that meeting. I had a ridiculous smile on my face the whole time and kept yelling out things like, hey, me too! and yea, I know what youre talking about! My world was suddenly like a newly painted picture, bright, cheerful, and finally complete. I finally felt like I could go on with my life; that I had women who understood just what I was going through, who would never leave me or let me let go.

In a selfless, comforting and knowledgeable way, the Endo Warriors have given me my life back. They have provided me with information about dealing with endometriosis, named doctors for me to go to, connected me with other women who are struggling, and given me a reason to live beyond the suffering. They let me know that I am not alone, that any time I cry, any time I hurt or lose hope, they are right there with me, holding my hand, or carrying my broken heart. Without them, I dont know where I would be. They are my supporters, my best friends, my beautiful angels.


 Please let me know what you think!! I would love to hear some comments!