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Five Hundred Twenty Five Thousand Six Hundred Minutes – How do you measure your life in infertility treatment?

March 26, 2015 | By:

 

Five Hundred Twenty Five Thousand Six Hundred Minutes

How do you measure your life in infertility treatment?

How do you measure a day, or a year?

 

Five hundred twenty five thousand six hundred tests
Five hundred twenty five thousand moments, oh dear
Five hundred twenty five thousand six hundred dollars
How do you measure, measure an IVF year?

In daylights, in sunsets
In phone calls, in cups of coffee
In inches, in pounds, in needles, in surgery
In five hundred twenty five thousand six hundred minutes
How do you measure, a year of infertility?

How about love for the baby you’re creating?
How about love for the people helping you conceive?
How about love for your partner or a friend?
Measure in love

Cycles of love
Cycles of love

Five hundred twenty five thousand six hundred blood draws
Five hundred twenty five thousand follicles to count
Five hundred twenty five thousand six hundred heartbeats
How do you measure the life of an infertile woman or a man?

In diagnoses that she learned
Or in times that he cried
In money they lost or the day the baby died?

It’s time now, to sing out
Though the story never ends
Let’s celebrate
Remember a year in the life of our infertile friends

Remember to love
Oh, you got to, you got to remember to love
Remember to love
You know that love is a gift from up above
Remember to love
Share love, give love, spread love
Measure in love
Measure, measure your infertility in love

Cycles of love
Cycles of love
Measure your infertility, measure your life in love

Inspired By Rent — Seasons Of Love, Lyrics

 

 

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The Risk of Choosing The Mindset of Infertility

October 24, 2014 | By:

I’m back (after a blogging break) and I’m mad.  Very mad.  I am mad at doctors, mad at the media, mad at the reproductive community, mad, mad, mad!  Why am I mad you ask?

Good Question.

It took me awhile to figure it out, which makes me even . . . madder!  Okay I know that’s not a real word but you get my point . . . I think it’s been building up inside me for . . . oh about 15 years.  Because 15 years ago (give or take a few years) I was officially LABELLED as INFERTILE.  It is not a nice label.  It is not a label anyone ever wants.  And yet there it is.  A LABEL in my medical chart.

It’s like having a huge tattoo on my forehead that screams to doctors and the world:

INFERTILE:  WILL NEED HIGH-TECH EXPENSIVE MEDICAL TREATMENT TO EVER HAVE A CHANCE TO CONCEIVE AND CARRY A CHILD.

This is a label which makes your doctor look at you differently.  A label which makes YOU look at YOU differently. A label which makes you look at your partner differently, and makes your partner look at you differently.

The LABEL stuck with me for over 15 years.  And indeed, after years of IVF those labels became so convincing to everyone, and I mean everyone, that no one believed there was any hope for me.  It was like getting put into a closed box which doctors didn’t even want to try to open.

I listened to doctors, and nurses, and even friends, as they recounted the statistical UNlikelihood that I would conceive and carry a baby, as the statistics of the likelihood of what I wanted more than anything, became smaller and smaller, and smaller.  I let them convince me it was impossible.

The list of reasons they gave me was huge.  Insurmountably huge. And so I believed them when they told me I wouldn’t conceive.  I believed them when they gave me diagnosis after diagnosis.  I didn’t question their opinions or their conclusions.  I didn’t challenge my own belief in the power of my mind, the power of my body, the power of ME!

I BOUGHT IT ALL HOOK LINE AND SINKER!

And that’s why I am mad.

I let them compartmentalize me.

I let them put me in a box with a label and give up on me.

I let ME give up on ME.

Today there are countless ways to build a family.  IUI, IVF, IVF with donor egg, IVF with donor sperm, IVF with egg and sperm donor, embryo donation, gestational surrogacy (with any of the aforementioned IVF combinations), traditional surrogacy, domestic newborn adoption, foster-care adoption, international adoption; and there are more options than what I have mentioned.  It is a colorful and beautiful world filled with reproductive and family building options.  I live and breathe it every day as I help others move toward their dream of building a family.  But I couldn’t see any of it for myself.  All I could see was that tattoo staring back at me in my bathroom mirror every morning.

INFERTILE  

I read when magazines and newspapers attributed the label to countless celebrities, the media’s whispered words of shame and failure . . . [insert celebrity name here] can’t get pregnant] . . . she’s INFERTILE.  But I didn’t believe it for them.  I believed they would (or will) prove the label was wrong.  Prove the media was wrong.  I believed that others could defy that label which defined me.

INFERTILE 

God I hate that word.  I hate the feelings it brings out in me.  Feelings of failure, sadness, desperation, and now anger.  But I am not angry that I am infertile.  I am angry that I gave up on myself.  But then something happened.  Something that wasn’t supposed to happen . . . not to me, not to someone with all those LABELS.  Something extraordinary happened that caused me to challenge my doctors’ assumptions, that caused me to look at the LABEL tattooed on my forehead and ask:

IS IT REALLY TRUE?

AM I REALLY INFERTILE?

And then I realized it isn’t impossible.  Nothing is impossible.  In fact everything is POSSIBLE.  And with that realization my entire world changed.  My longheld beliefs about myself and my infertility CHANGED.  Everything I feel and believe about what I have lived through for well over 15 years, what I tell my clients, how I look at the community and industry in which I work, has shifted.  I suffered for over 15 years for no reason.  There was always hope.  I just wouldn’t let myself see it.  But I see it now.  I see HOPE everywhere, for everyone, even for ME.  No one really knows who is infertile.  Not even your doctor.  Nothing anyone tells you has to be true.  Not unless you believe it’s true.

My point is this:

Do NOT let your doctor get you down.

Do NOT let your doctor dismiss you.

Do NOT buy into the label(s).

Do NOT believe statistics.

PLEASE DO NOT BELIEVE STATISTICS.

I have finally realized that everything and anything is possible.  Because it is.

ANYTHING AND EVERYTHING IS POSSIBLE!

It will happen to you in the perfect time, and in the perfect way.  But you do not have to suffer while you wait. Do not do what I did.  Do not buy into the labels.  Do not give up or give in.

Instead of choosing the mindset of infertility, choose the mindset of belief.  Choose the mindset of knowing that your time will come.  Accept, believe, and KNOW that everything and anything . . . and I mean ANYTHING . . . is POSSIBLE.

Because it IS.

And I know this because after 15 years of living with the label, and living with the tattoo on my forehead, something happened which proved everyone wrong about everything.  I now know that

I AM NOT INFERTILE

I am

POWERFUL

My body is 

POWERFUL

and so is

YOURS!

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Fear, failure and fertility: should we really continue to stay silent about these emotions?

March 28, 2011 | By:

I am getting over a pretty nasty bought of pneumonia.  And as a result, I have had a lot of time to think.

To think about everything that I should be doing in the office but can’t.  To think about everything that I need to be writing:  my e-book on egg donation is pretty much finished but I haven’t had time to input the final edits or to speak with my design and production team about getting it ready for the marketplace; I have an article on egg donation and surrogacy contracts that is due to the American Bar Association in a matter of days; I have to talk to my publisher about revising The Infertility Survival Handbook; I want to write a blog about a RESOLVE event I co-hosted on March 24th at Bis.Co.Latte Cafe in NYC regarding the legal issues egg and embryo donation; and oh yeah I am supposed to be teaching a class on third-party assisted reproduction at a law school and I have to prepare the syllabus (that one may not happen).

To think about all the contracts that I need to draft and edit for clients.

To think about the new series of blogs I am working on (perhaps it too will become an e-book?) on the mind-body connection in dealing with and resolving infertility.  Thanks to a Facebook friend, I discovered a wealth of information on something called “Conscious Conception.”  I have a ton of research to do on Conscious Conception, it is a seed germinating in my mind and something I very much want to talk about.   Just this morning I was staffing out work in the office and we got into a long conversation about how much I believe faith plays in people’s ability to deal with and overcome fertility.

And yet, all I am capable of on this gorgeous sunny day is to THINK about the overwhelming amount of things that are filling my proverbial plate.  I am utterly and completely without the ability to deal with any of it today.  For today my goal is to be able to breathe.  One of the fundamental things in life which I must attend to if I am going to get back to these things, yes?  Yet, instead of recognizing the very important need to take care of my own health, I have been beating myself up for my inability to do my work.  I feel like I am drowning, literally and figuratively.

It was only upon stumbling across an issue of the Wellesley Alumnae Magazine and its cover article about “When Life Doesn’t Measure Up” and reading about how, when and why so many of my fellow Wellesley sisters feel like failures, that I realized that I feel like a failure for having pneumonia and not being able to do my work.  And with that thought, I was off and running on a journey of self-analysis that of course brought me right back to the world of fertility and the feelings of failure that come with it.

Apparently, my college magazine conducted some kind of a poll asking graduates to discuss their feelings about their satisfaction with their life and feelings of inadequacy, failure, or success in a variety of different contexts.  I don’t recall receiving a questionnaire in the mail or an email like this — must have missed out on contributing my own thoughts to this very profound poll.  The reasons women gave for feeling like a failure were incredibly diverse.  And yet, despite the very diverse reasons or situations my Wellesley sisters gave when describing their own issues with failure, including dealing with chronic illness, the article did not mention infertility or an inability to have children (or the choice not to have children) as raising issues of failure.  Certainly, someone among the thousands of Wellesley graduates has experienced difficulties conceiving and must have felt like a failure.  I did.  I do.  Why didn’t someone else talk about it?  The Dixie Chicks talk about it in their song “So Hard” . . . a ballad that haunts me every time I hear it.  It’s all about the feelings of failure and loss we have when we can’t conceive.  One out of every 8 Americans is dealing with infertility.  Why didn’t the Wellesley College Alumnae Magazine talk about it?  Especially at an all women’s college, you would think that a topic like infertility and failure related to something so integral to being a woman would be recognized and not continue to be shrouded in secrecy. The article talked about the shame my sisters felt about their various failures, the secrecy that surrounded them but infertility was not among them.  What gives?

The secrecy and shame surrounding infertility is pervasive.  Just as for my sisters who are wrestling with their own failures of a different nature, the article pointed out that all of them felt better by talking openly in the article about failure and its impact on their self-perception.

Indeed, the magazine itself was often a cause for Wellesley alumnae to feel failure.  By hearing about the success stories profiled in the magazine many women admitted that they felt that they had let down the school or that they failed to measure up to the “Wellesley standard” of being or becoming another Hillary Clinton.  The article concluded with the following statement:

“But maybe what we don’t know is what failures happened to those women before they became household names that eventually brought them to the point of celebration.  And until we hear those stories, too, we can’t begin to make new templates for success that acknowledge the inclusion of failure as part of a life well-lived.”

And this leads me to the following conclusions:

Until we hear stories about our feelings of failure and inadequacy arising from our infertility, and our subsequent success at overcoming them, we cannot begin to make those new templates for success that acknowledge how much stronger or sensitive we have become as a result of our infertility.

Until we hear stories about our feelings of failure and inadequacy arising from our infertility, we cannot begin to find faith that our own journey will end in success.  We need to be inspired by the success of our sisters (and brothers) who have gone before us and achieved that which we long for — a baby — even if that success means embracing an alternate route to parenthood such as surrogacy, egg or embryo donation, or adoption.

It is, as my Wellesley sisters say, in embracing the loss in which we gain the faith to succeed.  I wish there was no stigma to being infertile but I must confess that the lack of mention of infertility in this article really drove home for me the sense of the overwhelming stigma with which we live.  I have a serious issue with the Wellesley Alumnae Magazine for not bringing to light a discussion of how failing at something as intrinsic as becoming a mother can be so devastating to our sense of self-esteem, to our marriages, and to our sense of failure as a woman.  (I cannot fathom that not one woman responded to that poll and didn’t mention infertility and if that was the case, I am even more troubled by the statement that makes regarding how much we hide about our infertility).

Learning from others who share their own shame or other sense of failure about something with which we are all supposed to be able to do — conceive, carry and give birth to our children — is what will carry us through.  For others it is not necessarily biological or medical failure but a sense of frustration at being unable to conceive because we lack the essential components — we are socially infertile.  And learning from others who find ways beyond our social infertility will give us ideas and strength for achieving that which our sexual orientation precludes us from obtaining.

And as the wheels started turning and hit overdrive as I considered the article and my own sense of failure because I have pneumonia and am unable to work (and am thus letting down my clients to whom I truly want nothing more than to help have a child), and considered once again the stigma with which we live, I couldn’t stay silent.  I pulled out my laptop and curled up in bed to “think through” this article and my situation and put together the pieces of this puzzle.  My blog will now not only be devoted to discussing the concepts behind Conscious Conception, but it will be devoted to de-stigmatizing this disease.  I know there is a Wellesley sister out there somewhere who is struggling to defeat the NOvary™ or endometriosis, to locate a birth mother, to navigate the increasingly complicated red tape of Ethiopian adoption, or to find a way to establish the fact that she and her partner are both the legal mothers of the child one of them delivered and which they intend to parent together.

So in my failure of having pneumonia, new ideas and inspiration have been born for my blog and thus my day has turned into one of celebration.  And I ask you to please not be silent.  I took the pledge with RESOLVE not to remain silent and today my failure in being human and having pneumonia has given me an idea of how I can fulfill my pledge to RESOLVE.  My blog is a safe place where I hope to support people walking with me on this path, and to provide the occasional nugget of legal or medical information to move us another step forward on the path to parenthood.  And thus I ask you to talk about your shame.  Talk about your sense of failure.  Talk about your frustration, your anger or confusion. (And if you are a Wellesley alumnae, help me convince them to let me write an article about infertility).  Share your story here wherever you may be in your journey.  And I will try and find people to share with you how they conquered the NOvary, endometriosis, found birth mothers, survived the red tape of Ethiopian adoptions, or proven their joint parentage.

Because I know that if we continue to be silent and give in to this crazy stigma, we will never know what failures happened to those women (and men) among us before they became mothers (and fathers), and that eventually brought them to the point of celebration.  And until we hear those stories we can’t begin to make new templates for success that acknowledge the inclusion of infertility as part of a life with children.

And now for some random FAQ’s and reminders:

Yes, you can establish your parentage if you are a same-sex couple and one of you has a baby.  Depending on where you live the mechanisms for doing this will vary.  In some states you can file a legal action to have your parental rights established, in other states you may need or want to adopt (even if you are not married).  In some States and in some circumstances you may need or want to do both.

If you have a functioning uterus, egg donation is perhaps the most successful route to pregnancy for women who have issues with the NOvary™.  At many clinics, with a properly screened egg donor, live birth rates per egg donation are in the 60% range.  Yes, you read that correctly, you could have a 60% chance of conceiving a baby using an egg donor.  And among those that conceive using an egg donor, the rate of twin conceptions is in the 40% range (making a strong case for single embryo transfer).

If you are considering adoption but have financial concerns or are worried about wait times, relinquishment risks, or red tape, embryo donation is a rapidly growing path to parenthood.  Using embryos donated from another family who has cryopreserved embryos which they no longer wish to use to build their own family, you may have a 40% chance of conceiving a child.  In addition to the affordability of embryo donation and the high success rates, you have the opportunity to carry the child, control the uterine environment, and may have the ability to conceive more than one child (this will depend on the type of embryo donation you enter into, as well as the number and quality of the embryos donated to you).

If you don’t have a functioning uterus, gestational surrogacy is another option for becoming a parent.  Using either your own gametes (genetic material), or an embryo created from egg or sperm donation (or sometimes both), another woman can carry a child for you and you will have all legal and parental rights upon that child’s birth.  Surrogacy laws vary by State, and it’s far from inexpensive, but when done correctly, surrogacy is a wonderful means of building a family.

And let’s not forget what is now almost considered boring: IVF.  If you have a viable uterus, eggs and/or sperm but for other reasons have difficulty conceiving on your own, with the assistance of In Vitro Fertilization, your chances of conceiving get better every day.  With the improvement of the culture medium used to nourish embryos, together with advances in reproductive medicine, some families will have as high as a 70% chance of conceiving.  Although the vast majority of families using IVF will need more than one attempt before conceiving, this is a technology that should not be ignored.

Other things to consider are:

PGD, (Preimplantation Genetic Diagnosis).  This enables you to select only those embryos that appear chromosomally normal for embryo transfer in an IVF cycle.  For older infertility patients, those with a family history of hereditary illness, or those with recurrent pregnancy loss, PGD can increase your chances of conceiving a healthy baby.

ICSI, (Intracytoplasmic sperm injection).  This is where doctors inject the sperm into the egg to help facilitate fertilization.  For families with male factor infertility this can help side-step problems with sperm that might prevent it from fertilizing an egg.

DNA Fragmentation Assay.  This is a test performed on sperm to determine whether the sperm are chromosomally normal.  Although there is a large range of “grey area” where it is unclear whether the sperm are going to cause problems with conception or pregnancy loss, this is proving to be a very important aspect in solving cases of recurrent pregnancy loss, IVF failure, or otherwise diagnosing “hidden” infertility issues.

Blood Clotting Disorders and other immune issues.  Do you have unexplained pregnancy loss or IVF failure (with an egg donor)?  Go get a work-up from a hematologist or other doctor specializing in diagnosing harder to find infertility issues.  Sadly many physicians routinely overlook or discredit the influence or impact of blood clotting and/or immune issues on the ability of an embryo to implant in the uterus, or to the ongoing development of a baby.

Are you going to stay silent, or are you going to talk with me here about what you are feeling, what you are trying to do to overcome your infertility, or what you did that helped you overcome it?  Speak.  If not here, then find somewhere.  Please.

 

 

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