Wednesday, August 28, 2013

The Task At Hand

The following are your tasks, my friend, if you so choose to take them...

You are living with symptoms that don’t add up to any well-known disease. You have terrible pain either in conjunction with your cycle, or sometimes all the time, pain during intercourse and bowel and bladder problems. Your period is often heavy or irregular. You are constantly fatigued and nauseated, and, to your immense unhappiness, you are having trouble conceiving.

Convince a doctor to figure out what is wrong with you. Go to specialist after specialist and describe your symptoms.  Don’t get frustrated when he or she sends you to a different doctor, saying that whatever you have is not under their jurisdiction. Try not to become overwhelmed when you are sent for MRI’s, CT scans, X-rays, sonograms, and blood tests and they all come back negative. Pretend to be strong when you are told time after time that nothing is wrong with you. Try not to kill the doctor who tells you that your symptoms are all in your head.  
Imagine your abdomen and pelvis are indeed encased in barbed wire so that the spikes of the wire are actually piercing them, stabbing them sharply every time you move. Now imagine that the barbed wire is actually attached to some sort of electrical current that shoots electricity through the spikes, increasing the intensity of each penetration. Next, add a machine that alternates shooting the electrical spikes into the body and pulling them out again in random intervals, thus adding a surprise and shock factor to the pain. Lastly, in addition to the shocking electrical stabbing pain, there are deep, underlying waves of pain that crush and release the muscles, causing a cramp so excruciating it takes your breath away.

 Live with the aforementioned pain for a minimum of one week of the month, and for maximum of every day of your life.  Act normally, smile and say “great” when someone asks you how you are, or carry on a three minute conversation. Perform every day activities, like food shop, or make dinner. Go out with your friends a night, see a movie and try to sit for the full two hours without fidgeting. Go to work and act like all the other employees, make sure no one knows you’re in pain.  Go on a date with your significant other and make love to him or her without mentioning the agony you are in once.
You have been in excruciating pain for the past three days. You’ve tried every method of pain relief possible, from a hot water bottle to heavy-duty narcotics. Nothing has helped.  You are at the point where you would wish you were not alive, and you decide to go to the emergency room.

Wait three hours in the waiting room, writhing in agony until you are triaged and they decided you are in enough pain to earn a coveted bed in the emergency room. Change into gown while you feel like you are going to pass out. Next, drag yourself over to the bathroom to ensure that you get your all-important urine in a cup before you even dare to think about receiving pain medication.  Stumble your way over to your bed and try to hold your screams in while you are prodded and stabbed with an IV needle.  Wait another hour before a doctor actually saunters over to you like he has all the time in the world. Try to explain to the doctor how much pain you are in, what endometriosis is, and how much medication you need, and then try again after he accuses you of having ‘drug seeking behavior’. Try for the third time after he prescribes Motrin for you instead of the narcotics that you most definitely need. Wait another hour to receive the narcotics you so valiantly fought for. Attempt with all your strength to not yell at the nurse who goes on break instead of getting the pain medication that she promised to get you.  And lastly, continue to be optimistic as you leave the hospital while contorting in agony, no better off than when you came.
Your body feels as though you are nine-months pregnant with quadruplets. Your limbs feel like they are wrapped in lead, and your eyelids covered in cement. All you want to do is climb into bed and sleep for sixteen hours. In addition to the exhaustion, you are immensely nauseated at all times. Every item that you place in your mouth causes you to either become nauseated or throw up.

Make sure that you do not slack off while doing any of your everyday activities. Ensure that you eat enough to keep your energy high. Go to work. Fulfill every task you have there without once slowing down. Do not drink any caffeine, as it makes you sick. Go out to eat with friends but don’t let them know that you can’t eat anything on the menu.  Don’t get hurt when they call you “flaky” for cancelling on them. Play ball and horse around with your children, if you are fortunate enough to have any. Feed, bathe and dress them and put them to bed. Ensure that they are unaware of your exhaustion. Spend time with your significant other without yawning. Sleep six hours a night, wake up refreshed and repeat.
You are tried for many years to conceive. Despite numerous medications and shots, intrauterine inseminations and in-vitro fertilizations, you still remain childless.

Pretend to be happy when your friend is pregnant. Paste a smile on your face and hug her without letting your jealousy and anger emanate through. Jump up and down and scream when your sister or sister-in-law has a baby and jump at the opportunity to baby sit whenever you are asked.  Continue to spend as much time as you can with all your pregnant and parent friends and ooh and ahh over their children’s pictures when they are shown to you proudly. Never, ever let it slip that you wish you had one of your own.
Make sure that your relationship with your husband remains sensual despite the constant need to plan sex. Don’t let your sex life become all about getting pregnant, and try not to remind him that you are ovulating when you are making love. Try not to focus too much on the all the money you have spent on trying to become pregnant. And don’t allow yourself to become too disappointed when you get your period every month.

Would you choose any of these tasks if it were up to you?

Tuesday, August 27, 2013

Endo Warriors

Hello all. This past Sunday I went to a support group led by a group of women called the Endo Warriors. These meetings, led by three unbelievably knowledgeable and capable women, are a medium in which women with endometriosis can join together to give and receive emotional support. Seeing such an eclectic group of women gather together to help each other is both inspiring and uplifting and each time I'm there I find myself amazed at the amount of strength and inner beauty these warriors have.  I leave each meeting feeling like I am fortified with enough unconditional love, knowledge and support to last a lifetime. I am so proud to call myself an Endo Warrior.

Deeply dedicated
Resilient and strong
Readily available
Immensely knowledgeable
Overwhelmingly supportive
Radiant, powerful

Friday, August 23, 2013

a little business...

Hey guys,
I just wanted to let you all know that if you are interested in donating some money for my book, you can donate at: . Anything and everything is incredibly helpful and appreciated!!

Tuesday, August 20, 2013

Minor Details

For me, and many women that I have spoken to who have endometriosis, a difficult part of living with endo is the feeling that everyone around us is busy changing, growing and enjoying themselves while we remain unchanged, just trying to focus on making it through the day. Sometimes, it's as though the world is turning while we stand still...

Minor Details. The little things in life that are often left unnoticed. The middle toe on my daughters foot thats bigger than her big toe, the way my sons fine blond hair forms a triangle at the nape of his neck,  and a birthmark, no larger than a grain of barley, on the inside of my husbands ear. Those tiny little oddities, undetectable unless deliberately searched for, that individualize every person, situation, and object.
Ive been noticing the minor details a lot more often these days. All of those imperceptible building blocks that make up each part of my life with endo. The way I blink twice as often as usual nowadays since I am inexplicably and unbearably exhausted. The exact way I can curl my body while lying on the couch so that the pain that courses through it becomes a tiny drop less agonizing.  The way the crack on the ceiling that I stare at for hours when I am bedridden looks just like a bunny. And the way my daughters smile falters, just slightly, when I tell her for the umpteenth time, that I dont feel well enough to play with her.

You see, when the world passes you by, second by second, minute by minute, as you lay glued to your couch or bed in a fetal position, you begin to notice the little details in your life that have changed without your involvement. You suddenly become aware that the tree that stood bare and severe yesterday has grown a tiny, fragile bud, and it occurs to you that you completely missed a winter of building fat snowmen and drinking hot chocolate while you screamed hysterically in pain.  You notice that your son is tying his own shoe and a stab in your heart reminds you that someone else taught him to do it while you slept the day away.  You observe the tiny orange-brown freckles on your daughters nose, and realize that it is summer, and your daughter graduated preschool while you lay in a hospital room receiving IV narcotics.

Minor details can be used to create depth and dimension to make life a little more beautiful, giving a sense of individuality and uniqueness to every person and object. But for me, it is through the little details that I comprehend the harsh and painful truth about my life with endometriosis: as the world changes and morphs consistently and predictably, as my family grows, develops and improves with each passing minute, I remain stagnant and unchanged, fighting for the day in which I will notice each miniscule detail of my life and feel proud that I was involved in creating them.

Saturday, August 17, 2013

Dealing with Infertility

Did you know that endometriosis is the third leading cause of infertility in women? I hope you find that the following post gives a voice to the many women who struggle daily with the burning desire to conceive.

My period begins again…as does the heartache, the emptiness, the letdown, and, of course, the excruciating pain that rears its ugly head along with it. I am a vacant container without a purpose in this desolate existence.  My heart, once full of happiness and vivacity, is a stormy wasteland.  The bleeding flows, as do my tears. They gather in the emptiness that is my heart and drown me. I am drowning in pain, too empty to fight for air.

I have no purpose in this world. Others don’t understand. “You have so much else in your life,” they say, “focus on something else, forget about having a baby.” But my one desire, the sole yearning that fills my heart, is to have a child.  And every month, the blood arrives and my hope flutters away. 

Jealousy creeps through my veins and freezes my heart. One more hit and it may just shatter into a million translucent pieces. My life is an endless circle right now, delicate hope bleeding into complete devastation and then drying up into fragile optimism once more. I am dizzy with the constant cycle of despair and anticipation that fills my days. I despise the fortunate women who carry life inside them.  What makes them worthy while I am so undeserving?

 I ache for the day that I can hold my baby in my arms, the day that I become sure that I am not a purposeless, empty shell but a significant, fertile life-giver. And I know that despite all odds, I will endure each month with my head held high. Because I will never let go of that whisper of hope that still remains.

Thursday, August 15, 2013

Does My Pain Define Me?

I am a slave to my pain. My every action, every choice, every decision is dictated by my pain. My pain is a tyrant, a merciless, iron-fisted ruler who fights ruthlessly and takes no prisoners. I am a peasant, a humble, lowly serf who is swayed and controlled by its master’s every whim. I am a marionette and my pain is a cruel puppeteer, causing me to twist and gyrate frantically across the floor with the mere flick of a wrist. I struggle to pull free, but I am ensnared in the ropes and only cause myself more pain. 

My parenting, sleeping, and daily living are all controlled by pain. I don’t know how to speak to my children anymore. I merely allow myself to lose all control and scream at them constantly. And then at night, after they go to bed, I watch their serene faces, smooth with sleep and beautiful in their innocence and I cry hysterical anguished sobs at the way I treated them that day. But was it me who spoke to them that way? Was it me who lost her temper when they made a mess on the floor? Or was it a wretched, anguished woman who doesn’t know how to deal with life anymore? I am unable to tell the difference.  I am that pathetic woman. It is the pain that has done this to me.

 My kind-hearted innocent husband suffers from my pain as well. When was the last time I allowed myself to display the passionate love I feel for him? When did I last let him take me in his arms and adore me? The pain is my lover now. It is a jealous abusive lover who pummels my body, riddles it with beatings, and comes back daily with more. And yet I am intertwined with it, defined by it.

But I cannot allow it to conquer me. Instead, I need to prepare for battle. I must take my aching, beaten body, gird it with strength, and begin to believe in myself. Because in the end, having faith in myself, a strong, courageous, and proud woman, will help me emerge victorious. And pain: merciless and cruel, will never again define me.

Wednesday, August 14, 2013

My Best Friends

                                                      My Best Friends      
Welcome back my friend Sorrow
how I’ve missed the way you hug my body tightly and never let go.
Pleasure to see you Worry
my mind has felt empty without your constant conversation.
So glad you’re back, Pain
I have felt confused without your consistent reminders.
And greetings to you Sadness
it’s been lonely without your ubiquitous shadow.
I am so lucky to have you, my best friends,
I can always count on you to return
unlike my old friend Hope
who always leaves me when I need her the most.

Confession time

Confession number one: I procrastinate. Not very often, and not for too long, but I am finally admitting to the world, that I am a procrastinator. Or maybe not the whole world, because I have no followers yet, but I'm hoping that will change.

I've been thinking of making a blog for awhile now. "You gotta make a blog!" all my friends keep telling me, "If you want people to know about you and your book (more on that later), then you have to write a blog!" Of course they're right. But between dealing with chronic pain (more on that later), and taking care of my children (no, they are not the chronic pain that I am talking about), blogging just sat on the back burner.

Until now. The time has officially come for me to produce a blog. "Why?" you ask. "what is it about you that warrants a blog?" Good question. And so I am brought to confession number two: I need publicity. Lot and lots of it. You see, I am writing a book. A book about a disease that affects about 8.5 million women in North America alone, myself included. And that, my friends, brings me to confession number three: I have endometriosis.

Here's a quick crash course on endometriosis (please be aware that the information that I am giving you is in no way a full picture of the endometriosis disease): Endometriosis, or endo as it is often called, is a disease that affects woman from as early as age eight. The name endometriosis comes from the word ‘endometrium,’ the tissue that lines the inside of the uterus. This tissue builds up and sheds each month during the menstrual cycle. When a woman has endometriosis, this lining, which is only supposed to be in the uterus, grows in other areas of the body, such as the ovaries,  fallopian tubes, bladder, and bowel. As a result, tissue develops into what are called lesions, nodules, implants, growths or tumors. While not all women experience symptoms of endomtriosis, those who do  have symptoms such as excruciatingly painful menstrual cramps, irregular or heavy menstruation, chronic pain in the lower back and pelvis, and pain during and after intercourse,. Endometriosis is also one of the top three causes of female infertility.

So why do I feel the need to write a book on endometriosis? To answer that question we are brought to my fourth and final confession: There was a time in my life, when I was first diagnosed with endometriosis that I was so miserably lonely, so sure that I was the only one who suffered, sure that no one could understand what I was going through. I was so despaired, so alone, that I wanted to take my own life. I didn’t want to live in the solitude that I felt like defined me.  

But against all odds, here I am. Alive, strong, and happy. Why? Because of other women’s support. Because of the knowledge that I discovered: I AM NOT ALONE. There are millions of warm, knowledgeable, wonderful women with endometriosis who are thrilled to share their stories with other women and girls so that we don’t feel alone. And now I want to give back. I want to take these beautiful women’s stories, shape them into a book, and share them with others who are in despair. Share them with those who feel their lives are defined by the misery and solitude of this disease. Teach them that they are not alone. Every woman with endometriosis has a unique story to tell, each with its own innate set of learning experiences, each with its own strength to draw from. I feel that a book is an unbelievable way to collect these stories of strength and fortitude and share them, not only with those who have the disease, but with those who need to understand.

So please, follow my blog as I write about my experiences with endo, the painful, the hopeful, the dark and the light. Share your stories and experiences here with me, so that I can learn from you, and find strength and solace in your words, as you find the same in mine. I can't promise you that each post will be cheerful and upbeat, as life with endo rarely is, but I can promise openness, honesty, and a sense of belonging for all of you who choose to join me on this journey. 

And when the time comes for my book to be published, with G-d's help, I hope that you will read it and share it so that together we can make a difference in the future of those with endometriosis.

Thanks for reading,
Rachel Cohen