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.

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 can’t do this any longer! Help me! Don’t 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 couldn’t 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 hadn’t 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 you’re 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 don’t 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!

Endo Warriors: the song

Hey All,
My very talented friend Casey (author of the blog chancesour.blogspot.com) wrote a beautiful song about what it means to be an "Endo Warrior." I was honored to be asked to sing it, and we recorded it and posted it on you tube. We would love for you to watch it and share it!

 http://www.youtube.com/watch?v=ZTltZ84T-7M

Here are the words: 

People say I’m crazy,

That I’m just not strong enough.

People say I’m lazy,

That it’s time that I get tough.

They don’t understand,

This pain I can’t ignore.

It hurts with every breathe,

I can’t take it anymore.

Chorus:

I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.

But, I’ll no longer listen to your words that are only hurting me.

I am a warrior you will see.

 

Surgery after surgery

The many scars run so deep.

And yet it always seems,

Nothing brings relief.

Hard to keep my head up,

Feel so all alone.

Countless hours spent,

With my heating pad at home.

Chorus
I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.

But, I’ll no longer listen to your words that are only hurting me.

I am a warrior you will see.

Bridge

It’s time we come together and stand as one in pain.

It’s time for once our cries aren’t heard in vain.

If we lean on each other our power will not wane.

 

The mountains I have climbed,

One day you will understand

Then you’ll finally know

How strong I really am.

Chorus:

I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.

And I’ll keep fighting this disease that has completely ravaged me.

I am a warrior you will see.

Endowarrior you will see.

**Please let me know what you think!!**

The Emotional Suffering of Women with Endometriosis

Your friend tells you she has endometriosis. Being the wonderful friend you are, you know just what to do. You go online, type in “endometriosis” and begin to read what you should expect her to be dealing with. Alright, you think to yourself, she has irregular and painful periods.  Continue on to the next line. Oh, that really stinks. She may have some trouble conceiving and I’ll bet she has pain during sex. You read on. Bowel and bladder issues? Fatigue? Wow, you muse, genuinely distraught, I sure am glad I don’t have endo!

Of course you’ll be correct about all those symptoms. After all, when has the internet ever been wrong? And you really are a great friend for caring enough to research what she goes through. Unfortunately for your friend, and for the rest of us who suffer from endometriosis, the internet does not tell the whole story. You see, for every physical ailment that infiltrates the life of a woman with endometriosis, there is an emotional component that is equally, if not more, devastating.

GUILT

Guilt is like an itchy woolen sweater that is two sizes too small: suffocating, uncomfortable, and in desperate need of being shed. It permeates the many aspects of the lives of women with endometriosis and makes us miserable.  Some of us feel guilty for just having the endo to begin with, as we erroneously wonder what we did wrong to deserve this disease.  Guilt is common for those of us who are spouses or girlfriends and cannot give our significant others the emotional or physical attention they need. We feel guilty that our close friends and family have to spend their days taking care of us when we are incapacitated. We also feel guilty when we feel as though we are idling around the house while the rest of the world is working hard.  We feel guilty for canceling plans that we made weeks ago, or not being able to make plans to begin with due to pain. Guilt crushes those of us with children when we cannot take care of them the way they deserve to be taken care of. It can sometimes overwhelm us when we are asked to play with our kids or put them to sleep, and we can’t even get off the couch. When we are trying to conceive unsuccessfully, we feel guilty for not being able to give our spouses the children they so desire.  Guilt is a truly ubiquitous feeling in the lives of women with endo.

ANGER

Imagine being told that the agonizing pain you feel every second of every day is not real, that you are making a big deal out of nothing. How would you feel?  Anger? Rage? Imagine being told that you are a “druggie” when you ask your doctor for pain medication to ease the misery you are dealing with. Anger again? Or how would you feel towards “God” or “The Universe” if you let your mind wander to the opportunities you would have if you didn’t have endo? It’s hard not to be furious when you think of everything you are missing or losing due to this disease. What if you’ve tried for years to get pregnant with no success or just miscarried the child you’ve wanted all of your life. And imagine being so debilitated by your symptoms that you are unable to perform your everyday activities. How would you feel? Frustrated? Angry? That’s exactly the way we feel.

JEALOUSY                                                                                                                                       

For women with endo, jealousy rears its ugly head when we see other people performing activities that we are too sick or fatigued to perform. It is hard not to be jealous of a healthy person when you are stuck in bed, too exhausted to move, or lying on the couch, writhing in pain.  Jealousy is also inevitable when we see other people with their two children, or pregnant with their third while we would give our right hands just to conceive one child. Just seeing someone go food shopping without discomfort causes jealousy within us, as we would do anything to be able to perform everyday activities without pain.

LONELINESS

Yes, many of us are lucky enough to have some sort of support system in our lives. And don’t get us wrong, we are enormously thankful for that support. But there is a profound, hollow loneliness that sometimes overwhelms us when it occurs to us that despite their best efforts, our loved ones cannot fully understand what we are going through. It is impossible to fully convey the physical and emotional turmoil that we deal with on an everyday basis. Even our endo-sisters cannot completely comprehend our individual suffering, as every person suffers uniquely. We are therefore sometimes led to feel as though there is no one as miserable as ourselves, no one going through what we go through.  And there is no thought lonelier than that.

MOURNING/LOSS

There are many women whose lives with endometriosis are full of loss and mourning. On a basic level, any woman who lives with endo might feel that they mourn the loss of a “normal”, illness-free life. For those of us who are prevented from having the spouse or significant other we desire, the loss of partnership is profoundly felt. Women who are trying desperately to conceive but are unsuccessful mourn the loss of their motherhood. Additionally, those of us who have had the miserable but common experience of having a miscarriage feel a deep, inconsolable loss that remains with us forever.  Lastly, women who have had hysterectomies often mourn intensely as they experience personal loss in two ways: the loss of potential children, and the loss of their womanhood.

EMBARRASSMENT

It’s very simple. Endometriosis is a disease that has to do with menstruation, sex and female body parts. Should we be embarrassed when speaking of those things? Absolutely not. Does society teach us to be? Unfortunately, yes. So while we endo-sisters attempt to speak to others about our illness and educate them, we are often met with embarrassed or disgusted looks. And that causes us to be embarrassed about having a disease that we obviously did not choose to have.

DEPRESSION/HOPELESSNESS/DESPAIR

Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. Depression is a very common symptom for those who suffer from a chronic disease, as there is no tangible hope for a cure. For women with endo, depression can be caused by many different things. Being alone all the time, not being able to spend time with family and friends due to pain, fatigue or other symptoms is depressing. Excruciating pain is depressing. The possibility of us never being able to have children or a family is depressing. Feeling like our illness is misunderstood is depressing. Feeling like we need to be embarrassed of our illness is depressing.  And lastly, the thought that there might be no hope for our recovery, that we might have to deal with the incapacitating symptoms of endo for the rest of our lives is the most depressing thought of all.

FEELINGS OF INCOMPETENCE

Due to the symptoms of endo such as pain, bowel and bladder issues, intense fatigue, and pain during sex, women with endo often feel inadequate. We feel like we lack the ability to do anything important, like our jobs, or household work.  Relationships with our spouses, kids, parents, siblings or even friends are often placed on the back burner as we struggle to merely exist in our difficult lives. This inability to maintain relationships, keep our jobs, take care of ourselves or family members or even have sex with our spouses overwhelms us with feelings that we are incompetent, useless, and valueless. Some of us even feel as though our existence on this earth is pointless if we can’t be functioning members of society. Feelings of incompetence can also lead to depression, embarrassment, guilt, and rage.

So there you have it. Women with endometriosis suffer on two levels: the physical and the emotional. While the physical symptoms are more commonly spoken about and documented, the emotional turmoil that we go through is often neglected. So, the next time you try to give your friend or relative the support she needs and deserves, try to remember that there is a very strong emotional component to this disease that should never be overlooked.

**Are there any other emotional symptoms that you think should be on here? Please feel free to comment and let me know!**

Topics

The following topics are going to be the chapters in my book. I will be having about five to ten women write for each of the topics. I have added questions under each topic to give you some guidance as to what to write about. Remember that they are only suggestions and do not have to be the only questions answered. You can write anywhere from a few sentences to a couple of pages. Try to be original and stay away from just writing your basic story. Instead, try poetry, pros, journal format etc. as they are all great ways to express yourself and tend to be a bit more interesting.

TOPICS TO WRITE ABOUT

1. People telling you that the pain and suffering you experienced was “all in your head”

-How did it make you feel when they said that?

-Who told you that?

-Did you believe them?

-If no, did you fight them on it?

-Did it delay your diagnosis or treatment seeking?

2. The journey towards getting a diagnosis and the day you found out you had endometriosis

 -How did you find out you had endo?

-How old were you when you were diagnosed?

-What made you seek out a diagnosis to begin with-what were your symptoms?

-Was it difficult to get a diagnosis-how long did it take before you were diagnosed?

-Had you heard of endo before you were diagnosed? What had you initially thought it was?

-How did you deal with telling your family/loved ones that you had this disease?

-Did you research it after you found out/was the research what you expected?

-How did you feel: relieved, devastated etc.?

3.  Pain/pain medication

-How would you describe the pain?

-How do you deal with pain?

-What does the pain prevent you from doing/ how does the pain affect your life?

-How do pain meds affect your life?

-What are others reactions to you taking pain meds (family, friends, doctors, strangers…)?

-Difficulty/non-difficulty in getting pain relief?

-How do you feel about taking pain meds?

-Stigma regarding those who take pain meds/being labeled a “druggie”

-Getting meds at the ER or in the hospital

-Alternative methods of pain management

4. Treatment options, hormones and medications

-What treatment options were presented to you by your doctor?

-Which did you decide to do?

-Did you try Lupron? How did it affect you?

-How did the hormones affect you and your life?

-What side effects did you experience from the medications other than hormones? How did they affect your life?

5. Infertility, wanting a child, not being able to conceive

-What emotions do you feel when you are waiting to see if you would get your period?

-How do you feel when you find out that you are not pregnant again?

-How does infertility or trying to conceive affect your relationship with your significant other? Other family members?  Friends? Strangers?

-What does it feel like to be around people who are pregnant or have little kids?

-How do people who know you are trying to conceive treat you?

-What have people who don’t know what you are going through say to you?

-What is the actual experience like when dealing with shots, pills, hormones, ovulation predictors etc.?

-How does infertility or trying to conceive affect your everyday living: job, friendships, finances etc.?

-What has it done to the way you view yourself: self-esteem, self-worth, self-love?

6. Sex/ relationships

-What has endo done to your sex life?

-How do you keep a romantic relationship going when your life is consumed by the endo?

-What methods do you and your significant other utilize to make sex easier/less painful?

-What has it done to your relationships with your significant others, family members, friends, coworkers bosses, strangers?

-When in the relationship do you tell your boyfriend/girlfriend that you have endo?

-How does endo affect your dating/social life?

-What does your spouse think of your endo/ how does he or she deal with it?

-Which relationships in your life have been supportive throughout your ordeal?

-Which relationships were destroyed due to endo?

-How do you like the significant people in your life to treat you?

-What are some things that the significant people in your life do to show that they are there for you?

-Have you made any relationships because of the endo?

7. Hysterectomy

-What made you decide to have a hysterectomy?

-Who of your close family/friends did you consult when deciding whether to have it?

-Did you get a second opinion?

-How did you feel in the days leading up to the hysterectomy?

-How did you feel after the hysterectomy?

-Did you have or want any children before the hysterectomy?

-Do you find yourself wanting (more) children now?

-Is it painful to see pregnant women or women with little children?

-How did your significant other feel about the hysterectomy?

-Do you stand by your decision to get a hysterectomy or do you regret it?

-Did you get a hysterectomy thinking it would ‘cure’ your endo?

-Did the hysterectomy help with the endo/ do you still have pain?

-Did you use hormone therapies after? Why or why not?

-If not, do you have menopausal symptoms?

-How has your life changed since the hysterectomy?

8. Hospitalizations/surgeries

-What hospitalizations have you had and why?

-What does it feel like to be in the hospital because of endo?

-What were your experiences like in the hospital?

-What surgeries have you had and why?

-Were they helpful?

-Did you try other treatment options before you decided on surgery?

-How did you feel before the surgeries? After?

-Did you have any unique experiences with any of your surgeries or hospitalizations?

9. Life with endo

-How has having endo affected your daily living?

-How has having endo affected your job?

-Have you connected with others who have endo?

-Do you have a support system that helps you cope?

-Have you joined any support groups? Do they help?

-How do you deal with being a mother, daughter, wife, sister etc. while having endo?

-What are other symptoms of endo that affect your life (fatigue, stomach issues…)?

-How do those symptoms affect you and your life?

10. Overall words of wisdom

-What words of strength do you tell yourself to help you get through the day?

-What have you learned from having endo?

-What would you tell someone who is newly diagnosed?

-Have you learned anything from other women with endo?

-How do you stay strong when the going gets tough?

-Do you have a faith or religion that helps you stay strong? What does it teach?