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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: | Filed under: Deadly Silence, Egg Donation, Faith and Infertility, Infertility Awareness, infertility in the media, IVF, Miscarriage, National Infertility Awareness, Peace to Parenthood, Personal Musings, Recurrent Pregnancy Loss, The Journey to Parenthood, Thinking Out Loud, Third-Party Assisted Reproduction, Treatment, Uncategorized, visualization

 

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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Post Traumatic Infertility Stress Disorder and National Infertility Awareness Week

April 2, 2013 | By: | Filed under: Check This Out, Deadly Silence, Egg Donation, In the News, infertility in the media, Infertility on Television, IVF, Personal Musings, Recurrent Pregnancy Loss, The Infertility Survival Handbook, Thinking Out Loud

We are rapidly approaching National Infertility Awareness Week (April 21-27); a week that is devoted to raising awareness of infertility and its impact on our lives.  This is an important week, not just because we are discussing infertility on a national level, but because many of us may are faced with thoughts and memories that have long since been buried.  Or have they?  Many an infertile woman will understand very clearly what I mean when I refer to that which I call Post Traumatic Infertility Stress Disorder (PTIFSD). This is the part of our lives where we are periodically haunted by our infertility (IF) treatment, sometimes years after it has ended.  Regardless of the outcome of our treatment, PTIFSD is signaled by a random flashback to one of any number of emotionally devastating moments during infertility treatment, a flashback that comes out of nowhere and is so vivid and acute that it catches our breath and momentarily disables us.

The first time I encountered PTIFSD was about two years after I had stopped IF treatment.  One day I was holding my baby while on line in Starbucks and a woman came in bursting with news for the friends who were waiting for her: she was finally pregnant with twins and her beta was high!  Upon overhearing this news (along with everyone else in Starbucks, most of whom probably had no clue what a beta is or why it was relevant) I had an immediate flashback to a time I too had learned I was pregnant, had a high beta and was probably carrying twins.  My flashback delved further, rapidly scrolling through memories of the messages on my answering machine, including those from three nurses at my clinic to congratulate me and share their excitement about my pregnancy.  Two of them gave me information that initially had not been shared with me, information which confirmed that I “must be” carrying twins, although that would later be confirmed by ultrasound.  My brain spun with these memories and I became disoriented.  It was only when the child in my arms, my child, grabbed my hair to get my attention that I snapped out of my seemingly trance-like state.  I forgot where I was in time.  I forgot I had a child.  All I could remember were those happy moments of learning that I finally had a healthy pregnancy under way and the devastation that followed approximately 9 weeks later when I learned that I had to undergo yet another D&C and that my dreams were once again, dead.

While some of us do emerge emotionally unscathed from infertility treatment, many of us carry battle scars that last a lifetime.  There is a cruel side of infertility treatment that people don’t often talk about and it involves the emotional scars we are left with, sometimes years after our treatment has ended and we are supposed to have “made peace” with our family building.  Not many people will acknowledge that they still have bad days, get jealous or angry (sometimes very angry) over something small and seemingly benign but nevertheless powerful enough to cause a shock wave of traumatic and painful memories from our days undergoing infertility treatment to overtake us and send us into a tailspin, the likes of which we haven’t felt since. . . well since our days of infertility treatment.  It has been a long time since I had a PTIFSD encounter but sadly, I had one recently and it was no easier to tolerate than was the Starbucks encounter I described above.  And what struck me most was that while I understood that my infertility might still be fresh in my mind less than two years after my husband and I walked away from our IVF Clinic, I didn’t expect those same memories to carry with them the same ferocity so many years later.  I mean, it has been over ten (10) years since I underwent an IVF cycle.  Certainly time must have tempered my feelings, yes?

Apparently the answer was a resounding “no”.  I was checking my email one morning when I received a surprise baby-on-the-way announcement from one of my childhood friends.  She and I not only went to kindergarten together but we went through infertility treatment together.  Despite having similar diagnoses, she went on to achieving several successful pregnancies via egg donation.  I was so happy for her that I knitted a little sweater for her first born.  What I experienced upon opening her email a few weeks ago, however, was hideously painful and I was left depressed, lethargic, moody and frightened.  My friend had gotten pregnant by accident, in other words, without medical assistance.  Indeed, much to everyone’s stupefaction, despite her age and many infertility diagnoses, she is experiencing a very healthy twin pregnancy.  As I sat there reading her email I was happy for her, but at the same time I was overcome by memories of us holding hands while waiting to have our blood drawn in the morning, and the time she called in tears because she finally had to face the fact that she needed to use donor egg if she wanted to achieve a pregnancy (or so everyone thought at the time).  And as I relived those memories (emphasis on the word relive) and read her email again I suddenly was overcome by anger and jealousy that I was not the one sending out the email.  Out of nowhere I was overcome with a jealous rage that bordered on hate. Hatred for someone I have loved since I was so small a person?  Yes, if I am truly honest I have to admit that I felt inklings of hatred for her.  For the next day or so I had mood swings and bit people’s heads-off for no reason.  It was only when I finally told my husband what I had received in that email that the feelings became less intense.  Somehow by acknowledging my feelings I was finally able to begin to move away from this non-stop video memory spinning inside my head.  Somehow this email had me caught in a perpetual mental loop of painful and devastating memories from my IF.  As the memories subsided, I remembered a conversation with a therapist I had seen during and after my IVF days.  During one of my sessions, she commented that what I was experiencing seemed a lot like post traumatic stress disorder; and so she and I created a new diagnosis, Post Traumatic Infertility Stress Disorder or PTIFSD.

I now have learned how to recognize and embrace the PTIFSD memories and use them to remind me of the joy that surrounds me.  I hope my PTIFSD is now truly at rest in my past.  But it’s okay if it is not.  Because I know where these feelings come from, and that they will go away.  These feelings do not control me, nor does my infertility continue to define me, instead it is the genesis of my growth as a human being, a woman, and a mother.

I recently had dinner with an infertility doctor.  He asked me why I wrote The Infertility Survival Handbook and whether it had been cathartic.  I told him why I wrote it – to let other women know they were not alone – but I also acknowledged that writing it wasn’t the least bit cathartic.  My healing process is one that continues.  Perhaps writing The Infertility Survival Handbook was my way of starting the healing process but I would be lying if I said I was finished with it.

The Infertility Survival Handbook was released during National Infertility Awareness Week (NIAW) in 2004.  Today as we approach NIAW, I am thinking of all of the women (and men) who are currently struggling to have a baby.  Now on its’ ninth (yes 9th!! Woot! Woot!) printing and as I contemplate writing an updated version, I think of all those women who have read my book and have emailed me, messaged me on facebook, or even called me (on a private number at home at 6am); women, who like me, struggle with the emotions that linger even after they have become mothers.  PTIFSD is not yet in any diagnostic manuals, but I wish it were.  I had two wonderful therapists who helped validate the emotions I was experiencing both during my treatment and well after it ended; therapists who believe in PTIFSD and its power.  Not everyone has people in their lives like my therapist who invented PTIFSD, or someone that understands and “gets it”.  And it is for those women I write this blog.

 

No you are not alone.  Being unable to conceive a child when you so desperately want one, is painful.  You are entitled to express that pain.  You should not be shushed or told to “just relax” so you can get pregnant.  And yes, that pain can stay in your heart and mind and hide there waiting to jump out and catch you off guard.  That too is normal and you are entitled to express that pain as well.  You should not be shushed or told “it’s over now just forget about it”.

 

You are not crazy.  Infertility is a part of your life regardless of the ultimate outcome.  It is an experience that shapes you and has the power to disfigure you – to change who you are – if you let it.  If you think you might have “Post Traumatic Infertility Stress Disorder”, talk to someone.  Get those feelings out.  Give your feelings a name.  Sometimes just by having a name, a reason, or a diagnosis gives you closure and helps you move past the feelings and you experience a sense of relief that allows you to let go.  I may not be like my childhood/IF buddy who is on the verge of delivering twins.  But I also am no longer be at the mercy of my memories.  By being reminded that my reactions and feelings when confronted with things that trigger painful memories has a name, PTIFSD, I have been able to regain my balance.  Or perhaps it is simply the understanding that, like anyone who goes through a very traumatic experience, I am bound to (at some point) relive that trauma, which has enabled me to begin to heal on a new, even deeper level.

 

Infertility awareness requires not only an understanding and recognition of the disease itself but of what that disease can do to us.  So if all the media coverage regarding infertility in the coming days (of which I hope there is a lot), finds you feeling a little more blue (or red) than normal, a little bit more withdrawn or melancholy, remind yourself that this media coverage is triggering some old buried memories, just as that woman in Starbucks and my friend’s email caused me to become momentarily blinded by sadness, grief, and anger.  It is okay that our infertility causes some of us to experience things and feel emotions long after we thought they were over.  That can be a part of infertility too, PTIFSD; and it too deserves some recognition during NIAW.

The point of NIAW is to help us recognize that we should not suffer in silence, that we should band together and make people aware that infertility is a disease.  What I wanted to share with you, and make people aware of is not just the medical diagnoses, but the sometimes unbearable emotional pain we feel.  We also should not be forced to suffer the emotional pain in silence.

 

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The painful silence of recurrent pregnancy loss and stillbirth. A first hand perspective and perhaps finally, a voice.

February 15, 2013 | By: | Filed under: Current Affairs, Deadly Silence, Faith and Infertility, infertility in the media, Infertility In The Movies etc., Infertility on Television, IVF, Miscarriage, Peace to Parenthood, Personal Musings, Recurrent Pregnancy Loss, Stillbirth, The Journey to Parenthood, Thinking Out Loud, Third-Party Assisted Reproduction

The shrowd of silence around stillbirth and pregnancy loss finally is being lifted.  Someone is making a documentary about miscarriage, recurrent pregnancy loss, and stillbirth.  This morning I watched the trailer of “Still”  a documentary devoted to raising awareness of the pain of the loss of a pregnancy, a child born too soon, or a stillbirth.  I think “Still” may focus more on stillbirth or pre-term delivery, but some of the articles I read as I researched its production indicated that the documentary intends to address recurrent pregnancy loss and/or miscarriage more than is touched upon in this trailer.

As I watched the trailer I was reminded of a long call I had with a new client this week.  It is rare that I have a client who has a similar background to my own experience with infertility.  Like me she has experienced 12 unexplained pregnancy losses (although I sort of stopped counting about a year ago when I went through it again . . . something about hitting the number 13 and I really decided it didn’t matter how many I had, I have had enough, one is enough).  Only in addition to experiencing a number of first term (non-chemical) pregnancy losses, my new client also lost pregnancies in the second trimester and near the beginning of the third trimester.  We had a lengthy conversation about how isolating it is, how lonely it is, how there is no person other than your partner or spouse who “gets it” (and even then sometimes perhaps they don’t totally get it because it isn’t their body), and how the silence that surrounds pregnancy loss can engulf one’s life, one’s existence.  Our call also reminded me of a blog I posted about a gravestone I once saw that marked the death of fetus.  As I commented in that blog, it wasn’t a pro-life stunt.  It was a family who had been given permission not only to mark the death of their baby while in utero (or loss of their pregnancy) but to recognize all those other families that have suffered the same pain.  In silence.

Reproductive medicine has provided so many advances to assist infertile couples in achieving their dreamed of family but recurrent pregnancy loss remains largely unexplained.  While theories abound, there are far too many of us who don’t know why this happens to us, repeatedly.  Reproductive medicine and reproductive law now give us the option of having our biological child carried by someone who is likely to deliver that child when we can’t.  Indeed, the option to use a surrogate after experiencing pregnancy loss is perhaps the driving force behind at least half of my clients who come to me to assist them with legal agreements as they begin their journey using a surrogate.   As is the case with the call and the client I just mentioned.

As many of you know, in the absence of an explanation of why my babies die, I was too frightened that a surrogate might lose my child.  I couldn’t ask another woman to risk experiencing the pain I have dealt with so many times.  Adoption was always something my husband and I had wanted to pursue so when we were faced with the [dreaded] conversation where our doctor told us we were out of options other than surrogacy or adoption, it was a no-brainer for us.  It was going to be adoption.  And as one of the women in the trailer for “Still” points out, I wouldn’t turn back the clock or make different decisions; because without those pregnancy losses I wouldn’t be parenting the two beautiful children I have now.  I cannot imagine a life without these particular little souls in it.  It seems like a heartbreaking price to pay but as I told my new client, one day when this is all over and you are holding your baby in your arms, it will make sense and you will know that but for all that came before (all 12 of those horrendously difficult pregnancy losses) this little baby wouldn’t be yours.

But as she journeys toward that day where she hopefully does feel that sense of peace and gratitude for the child in her arms, she is left with a huge void.  She has no one to talk to.  I had no one to talk to.  Even my best IVF friends didn’t understand how I felt.  Excuse me:  how I FEEL.  I still feel pain on a day that one of my longtime friend’s celebrates, the day she heard the heartbeat of each of the babies she was carrying.  I don’t begrudge her that joy.  I celebrate with her.  But for me, inside, it always is a reminder of the miscarriage that I experienced just a few days earlier.  My client and I share a special bond, one of knowing what each carries inside her and the thoughts that creep into our mind throughout the day.  Thoughts that largely go un-shared with anyone.

Will “Still” do justice to this topic, to this diagnosis, to the countless women and men who have endured the loss of a life growing inside them or one that came into the world far too early to survive?  I think so.  I hope so.  Because I would like nothing more than for women like me who are going through what I went through, women like my new client, to have a voice in the reproductive community.  To have doctors pay attention to our kind of infertility.  To have better resources and support groups.  To just plain have a voice to express their pain.  Amazing options for family building notwithstanding, the pain associated with recurrent pregnancy loss, miscarriage, and stillbirth shouldn’t continue to be shrouded in silence.

And so today I thank the people behind this documentary entitled “Still”.  THANK YOU for initiating a dialogue that is long overdue.

And one final note, to all those physicians who have dedicated their careers to exploring the mystery of recurrent pregnancy loss . . . THANK YOU.

 

If you would like to watch the trailer click here 

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When Infertility Professionals Get it Wrong.

September 18, 2012 | By: | Filed under: adoption, Current Affairs, Deadly Silence, Egg Donation, Faith and Infertility, I'm Just Another Angry Infertile Woman, In the News, infertility in the media, IVF, Personal Musings, The Journey to Parenthood, Thinking Out Loud, Thoughts on Choosing an Egg Donor, Thoughts on Donor Egg Recruitment

You know it’s not that often that I see glaringly offensive comments or information from professionals in the infertility world.  Most of us know to be very careful with the language we use so that we don’t inadvertently hurt someone’s feelings.  Today I was surfing Facebook and someone to whom I was connected (I am no longer “friends” with her) posted a comment about egg donation, adoption, and infertility.  I thought at first she was referring to a blog and was hoping she was quoting someone else.  Alas, I was very wrong and the link she posted was to an egg donation agency based outside of the United States (thank goodness for that — didn’t want to be running into her at any upcoming conferences lest I let her have it to her face) and the post was pretty much designed to bring attention to her agency.  I am not a big believer in the old adage that any attention is good attention or that negative publicity is still publicity.  In this industry, offending people is the kiss of death and well let’s just say I’ve been kissed.

I really don’t like the word “barren”.  It’s an ancient reference to women who were unable to conceive and it dates back to a time period when women had no rights and would sometimes be replaced by another woman if she was unable to conceive a child.  The Sixteenth Century this is not and I would have hoped that in the Twenty-First Century we would be a little bit more aware of appropriate terminology.  I guess not because this FB poster (who shall remain nameless even upon kiss of death) seemed to think that all women who are having difficulty conceiving should be considered BARREN.

I don’t think so.  Having difficulty conceiving does not mean we are barren.  The word barren actually has many definitions (http://www.merriam-webster.com/dictionary/barren ) including “lacking inspiration” or “lacking charm”.  For the record, I don’t consider any of my infertile clients, and certainly not my own bod, to be lacking in charm.  Some of my clients are downright amazingly gorgeous women with incredible resumes and great personalities.  In this case they are hardly barren are they?  They also usually go on to become mothers which would seem to indicate that they are in fact capable of producing offspring (please note Miriam-Webster dictionary says nothing about those offspring needing to be biological children — at least its editors “get it”).  But the word was used nonetheless in this FB post.  The fact that the post tried to be “neutral” and present all sides of debates as they pertain to third-party assisted reproduction was totally lost on me by virtue of the selection of this word to describe me.  Because that is who she is describing, me.  The last time I checked I am still considered to be infertile.

The other problem was that this poster and her choice of words — and barren was by far the least offensive of them — revealed her own underlying belief that women who have difficulty conceiving, women like me who are infertile, are somehow lacking, less than other women, and are desperate.  While she notes that “an element of respect” should be offered to these women, in and of itself that remark too is offensive.  I am only entitled to “an element of respect”.  7 IVF Cycles, 9+ miscarriages (I stopped counting but there were more), three adoptions, and I am only entitled to “an element of respect”.  Seriously?

Additional comments were made about whether decisions to use an egg donor were interfering with the “divine plan” for that woman’s life; and that what transpired to finally bring this barren woman to the point of actually considering using another’s genetic material could only be understood by the woman herself.  Here I do agree with the post.  However, I would prefer that she had not characterized the decision to choose egg donation as an act of finality, desperation, or somehow jumping off of the cliff of normalcy.  Families are built in countless ways and all of them are normal.  

Egg donors also were attacked for their decision to share themselves with other people.  Let’s be clear that egg donation does not involve any kind of “sharing”.  Egg donation agreements are clear that when a woman donates her eggs she relinquishes all rights to the resulting embryos and/or children.  Egg donors do not share in the day-to-day life of the intended parents’ pregnancy, or their life as they raise their child.  And let’s place the emphasis where it belongs, on “their” child, not the egg donor’s child.  If this woman is counseling egg donors — and I fear she may be — then she is sending the wrong message to these selfless and generous women who donate their genetic material, their ova, to an infertile couple.  They ain’t sharing those eggs or themselves with anyone.

Let’s not even discuss the offensive descriptions attributed to adoption.  I will have a stroke.

I understand that this woman was trying to raise a debate, trying to draw attention to her business and what she does.  But the choice of words she used as a professional in this industry was astonishingly rude and clearly revealed her own underlying biases.  She is entitled to those biases.  But as a professional she had a responsibility to keep them private and not mislead egg donors or intended parents.  I also think it was a poor decision to use such inflammatory language if she was trying to promote her business.  In all likelihood she sent potential clients running in the opposite direction.

I hope that the other people who read this post are wearing running shoes; they need to run as fast as possible.  Most likely the very charming, inspirational women who read this post pulled their flats or sneaks out of their gym bag and took off their Jimmy Choo’s, and headed in the direction of a more sensitive egg donation/surrogacy agency, a therapist (I may need a session), shopping (in which case maybe they should leave on the Jimmy Choo’s), or a glass of wine and some Oreos.  

For all those who read that post and felt in any way diminished as a human being because of their infertility, let’s get one thing straight:  anyone who can get through this stuff is one tough, rockin’ mama.  Emphasis on the word “mama” because that is what you will one day be called.

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Why does Jennifer Aniston’s quest to be a mother inspire me so?

August 19, 2010 | By: | Filed under: Current Affairs, Egg Donation, Faith and Infertility, In the News, Infertility In The Movies etc., Peace to Parenthood, Personal Musings, The Journey to Parenthood, Thinking Out Loud, Uncategorized, visualization

Everyone knows that I am fan of Jennifer’s.  I actually probably wouldn’t be married to my DH if it wasn’t for some advice her mom gave me a long time ago.  But seriously, Jennifer is an extraordinary woman in all respects, and from my perspective even more so for the way she is approaching her quest to be a mom.

At 41, most of know that Jennifer is likely to be facing some fertility issues (although with her health conscious lifestyle and yoga-bod maybe she’s found the way to turn back time, she sure looks it anyway!).  While most of us would be doing a little freak-out dance now, and panicking about the ticking time bomb that are our ovaries, Ms. Aniston seems anything but panicked.  In fact, she seems rather Zen about it all.  And that is exactly my point and what inspires me.

First, the woman KNOWS she is going to be a mom.  One way or another the woman has total and complete faith that she will become a mom.  Rather than spiraling into depression (as I did and many of us do), Jennifer has seemed to have found a way to let go and TRUST.  This is, I think, the gateway to success.

I really truly believe that it is when you completely accept and embrace the concept that you will be a mother, no matter what and no matter how (IUI, IVF, IVF donor egg, gestational surrogacy, adoption, whatever is your path), that fertility treatments have the highest success rates.  Study after study shows that the mind-body connection cannot and should not be ignored.  Women who are able to be in the place that Jennifer Aniston seems to be in, are the women who are more likely to succeed with fertility treatments.  It’s fact not fiction.  I know — as does JA — that she’s got an edge on success that I wish more of my friends and clients had: The inner-knowingness of the inevitability of their impending state of motherhood.

Another thing that I think sets her apart from many of us (and I include myself in this group when I was in the first 4 or 5 years of treatment), is that by all media accounts, she seems fairly open to many different paths to parenthood.  I am not privy to her conversations with her BFF’s but I am guessing that there isn’t much she isn’t considering about how she’s going to become a mom.  That too puts her on the fast track to “mommydom”.  Not all of us can be as enlightened and confident as she is, and I am not saying that she doesn’t have her moments of . . . doubt  . . . but I really think that the confidence and openness that Jennifer Aniston is talking about whenever she is interviewed about becoming a mom is something that tells me it ain’t gonna be long before she’s announcing the arrival or the impending arrival of a little baby Aniston.

And for what its worth, I think she’s a fantastic role model for every woman, single or married, over the age of 35 who’s trying to become a mom.

ASSUME IT IS GOING TO HAPPEN, AND IT WILL.

p.s. and when you can’t totally assume it will happen, fake it, fake it until you make-it  . . . because that’s another sure fire way to get your mommy-Zen fire burning.

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