A Post Nearly as Long-Lasting and Tedious as My Infertility Itself.

by Alexa on April 30, 2009

Last week Scott cleaned out my trunk, shoving everything in bags for me to sort through at my leisure. Yesterday I inventoried said bags—one large paper sack, one tote, two plastic garbage bags—and with the exception of two books, a pair of old snow boots, and a questionable-looking mug, everything they contained had something to do with getting pregnant. I hadn’t used my trunk in an embarrassingly long time, almost two years (on account of it being full of two books, a pair of old snow boots, a questionable-looking mug, and a metric ton of infertility paraphernalia), and there was a bizarre time-capsule quality to sifting through what was left there. Most striking was how one-note it was, how focused. But I suppose it was fittingly so. I was pretty one-note back then, too.

In the bags I found ovulation predictor kits, progesterone cream, pregnancy tests (digital and the strip kind bought in bulk over the internet), Vitex supplements, soy supplements, IVF informational packets from two clinics, a thick binder full of materials from the first of two “Mind/Body” infertility classes I took, a textbook of infertility articles, a sheaf of Letrozole consent forms, a file folder full of IVF pricing schedules with notes to myself scribbled on the outside, RESOLVE newsletters, journal abstracts, papers…you get the idea.

It was odd to see it all, like finding an old picture of yourself that you don’t recognize. For a long, long time, all I thought about was having a baby. I don’t just mean that I thought about it often, or wanted it intensely, I mean that ALL I THOUGHT ABOUT was having a baby. My whole life had narrowed to that one pursuit. I thought about it in the morning while I walked to my car, I thought about it all day at work, I thought about it while I drove home, I thought about it as I tried to fall asleep at night. The only period between December 2004 and September 2007 when it wasn’t the one track my mind whirred along was after Scott and I decided to get married and I began planning our wedding, and I think that is why the months between our impromptu engagement and our nuptials stand out as such happy ones. Oh, infertility was still at the forefront, to be sure, but it was sharing and sometimes ceding the spotlight to happier topics like cake, and whether or not to get a Brazilian wax.

Sometimes it feels like so much wasted time, each month that existed only as an arrow pointing to its end. Waiting to ovulate. Waiting for my period. Waiting for an inevitable miscarriage—twice. Waiting for the next test or procedure or ultrasound. Now, tethered to my beloved baby, I can think of so many ways to have better spent all those hours. Traveling! Sleeping late! Rolling nude in the piles of money I wasn’t spending on diapers! But please, if you know someone struggling with infertility, and you value the clever way your appendages are attached to your body, do not tell them to “enjoy this time while they have it.” Don’t you think they would like to? Don’t you think they would, if they could?
Wanting a baby when you can’t have one is excruciating. I would have loved to cut the desire from my chest and save it for later, but it can’t be done. Because my reaction to a lack of control is to read things, I spent months studying behavioral endocrinology in the hopes of understanding the desire, which had swooped down on me seemingly from nowhere. I read this book and this book and this one, but understanding an earthquake doesn’t muffle it.

You might think that having spent so much time thinking of nothing but my future baby, I would have been similarly single-dimensioned once that baby was here. But on the contrary, having Simone has freed me, opened up my world, given me my self back. Yes, she is the most important thing in my life, now, but she is not the only thing, and I have more energy for and interest in my writing, my marriage, my whole life, than I ever did during my pursuit of motherhood. One of the greatest tragedies of infertility, I feel, is the way it can stunt a person’s growth. The childfree and I disagree about some things, but on this point we agree: no woman should be reduced to whether she has or does not have children. Women are more than mothers or not mothers. Infertility turned me into something I could scarcely relate to, and besides the bizarre emotional pruning of whole chunks of yourself, infertility reduces a person in more practical ways: you become afraid to plan for the future, because surely by then you will be pregnant, or in the middle of a cycle, or home with a sweet-smelling newborn.

This is National Infertility Awareness Week, but for people still deep down in it, every week is about infertility. It is vicious. It is soul-destroying. “Relaxing” will not fix it. “Just adopting” will not fix it. And by the way, Mr. Rutten, did you know that adoption is nearly always more expensive than IVF? If you chose the cheapest, easiest, least-fraught-with-complicated-emotional-issues way to have your children—natural conception—you have no right to suggest that infertile people ought to do differently.

So, what can we do? My suggestion would be that you call or write your congressperson about H.R. 697, The Family Building Act of 2009. The act would require group heath plans that provide maternity coverage to also provide coverage for infertility treatment.

People tend to get very stroppy when it comes to this topic. But please, does it seem proper to you that my insurance plan had a yearly allowance for male performance enhancement drugs and yet no coverage of medication related to fertility? Or that some plans cover intrauterine insemination (IUI), a procedure more likely to result in multiple birth, but not IVF, regardless of what the doctor feels is most appropriate for the patient in question?

One of the leading causes of premature birth is multiple pregnancy, and one of the leading causes of multiple pregnancy is fertility treatment. People think twins are “cute,” but you know what? Twins are dangerous. In countries where infertility treatment is covered, the transfer of a single embryo during IVF is the standard practice in women under 35. As, frankly, it should be. But with no insurance coverage, what happens if you can only afford one IVF cycle? How likely are women to pin all of their reproductive hopes on one embryo?

I would be remiss if I did not mention that IUI, not IVF, is responsible for the vast majority of multiple births resulting from artificial reproduction. I tried an IUI cycle. I took a small dose of a medication, Letrozole, designed to help me ovulate. This medication is so mild and so unlikely to result in even twins, that some OBGYNs routinely prescribe it or something similar without monitoring, sending patients off to take the pills, have sex, and see what happens. My doctor was careful, and so I had an ultrasound after a few days to see whether the Letrozole was succeeding in developing a mature egg or maybe two.
I had ten follicles over 10mm. Six that my doctor was confident would release. This kind of response is rare, but can happen in women like me, with PCOS. My cycle was canceled, because, you know, I DIDN’T WANT SEXTUPLETS. If I had not been monitored so closely, I could have ended up with a dangerous high-order multiple pregnancy. Instead, I moved to IVF so that we could control the number of embryos we placed in my womb. IVF cost about $12,000. Letrozole cost me about 50 bucks. If you were a woman with PCOS and no insurance coverage, I wonder which you’d choose?

The March of Dimes does an excellent job of funding research into the causes of premature birth, but there is one area in which I feel they could do more. Many babies in the NICU are there because they were part of a multiple pregnancy. To make a substantial difference in the number of preterm births, why not throw the substantial weight of the March of Dimes organization behind The Family Building Act? Why not educate doctors and patients about the risks of multiple pregnancy, and the benefits of single embryo transfer in young women? Why not raise awareness among obstetricians about the dangers of providing drugs like Clomid without proper monitoring? Why not remind insurance companies that covering infertility treatment is more cost-effective than paying for hospital bedrest, NICU stays, and ongoing medical care for fragile preemies?

When we moved apartments last year, I opened a cupboard and was faced with my overflowing sharps container from the IVF cycle that resulted in Ames and Simone. I hadn’t been able to throw it away. It was tangible evidence of what I went through to create them, and when Scott insisted that a bucket of used needles had no place in an apartment that was about to be home to our baby, I took pictures before disposing of it, so that I would remember:
Needle
I haven’t looked at the pictures since, because it turns out I don’t need a reminder. Like diamonds or membership in a violent street gang, infertility is forever. It changes who you are.
I’m not likely to forget anytime soon.
Sit

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{ 72 comments… read them below or add one }

Molly April 30, 2009 at 12:27 pm

*Beautifully* said, Alexa. Bravo.

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Hairy Farmer Family April 30, 2009 at 12:27 pm

Hmmm. How fabulous that there’s several thousand miles between me and that Rutten chap.

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PiquantMolly April 30, 2009 at 12:29 pm

So, so, so good.

Well written, A.

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Jayne April 30, 2009 at 12:39 pm

I’m trying not to bawl.

Too late.

But what you wrote is not half as beautiful as the picture of Simone, sitting and being.

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Melissa April 30, 2009 at 12:56 pm

LOVE that picture.

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Melissa April 30, 2009 at 12:57 pm

The Simone one, not the needles. (Not that the needles picture is bad, but LOVE would be a bit strong for it :-))

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liz April 30, 2009 at 1:04 pm

This made big, fat tears roll down my cheeks. I feel like I am changed in such a fundamental way now. I HATE that I will never make a baby in my bedroom. I am so afraid I will be consumed again if we try for #2. I just want to be in the moment with my daughter not already wondering about next time, if there will a next time. SIGH!

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tash April 30, 2009 at 1:14 pm

I love this post.

I love the word “stroppy.”

I’m apparently in some kind of IF vortex bowtied with death, and you’re absolutely right: need to free myself, one way or another. Hear, hear, and thank you.

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Mo April 30, 2009 at 1:19 pm

Beautiful post. Well-said.

Mo

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Cj April 30, 2009 at 1:20 pm

Alexa – I was not infertile but your strong and beautiful words help me gain insight into what those who are must feel. I can’t ever presume to understand but I thank you for your continued determination to keep this issue of healthcare coverage in the public discourse so that all women may be able to have the choice that I had.
And, your baby…seriously. Adorable really falls short.

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Celia April 30, 2009 at 1:22 pm

That was lovely and made me cry and I sent an email to that newspaper.

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Melissa April 30, 2009 at 1:32 pm

Wonderfully written and insightful. Great picture of Simone!

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Amanda Myers April 30, 2009 at 1:33 pm

Its funny that you should write this post today. I am currently writing a paper for my Bioethics class on exactly this topic – IVF and the number of embryos transferred and how we should regulate this so that fewer embryos are transferred (in order to reduce multiples…thank you Octomom!). Sometimes I wonder if I am infertile (since it runs in my family) and what that would be like and how I would react. I really appreciate your blog and your willingness to share pieces of yourself that are deep and painful? filled with joy? uncomfortable? maybe all of the above?

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Lawyerish April 30, 2009 at 1:38 pm

Although I’ve never gone through infertility, this post resonated with me so much.

The years that we spent in our now-failed adoption process are years I’ll never get back, years in which every single day I spent the bulk of my energy and my every waking thought on whether that would be the day there would be news of one kind or another, whether that would be one day closer to our child.

I don’t regret going through all of that, although obviously I am shattered still by the outcome; but I am saddened by how singular my focus was all that time, how everything in our lives was put on hold because at X time in the future, we might be getting ready to travel or we might be home with the baby.

X time never came, and those hopes and dreams and that lost time will haunt us forever.

I’m so glad you have Simone, because she’s a living reminder that all of that time WAS worthwhile, that the lost moments all led to her.

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Nicole Pelton April 30, 2009 at 1:48 pm

what a wonderful and well thought you (and clearly researched) post. I know we have so many awareness weeks, but this one, and your post, is spurring me on to write a post. I found this post from Erika, by the way (plain jane mom)

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Deborah April 30, 2009 at 2:11 pm

Beautiful post, and so true.

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Mijke April 30, 2009 at 2:16 pm

You wrote down exactly what’s been bouncing around in my head lately, trying to find a way out… Thanks!

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Sadie April 30, 2009 at 2:17 pm

Alexa, I agree. Absolutely. And when I heard about my daughter? A babygirl in the NICU needing parents? It was like the shackles were thrown off(and of course I immediately started worrying about birth control). But I felt like ME. My vision was opened up again. She gave me back my vision.

I would also submit, though, that adoption doesn’t HAVE to be more expensive than IVF. In fact– adoption through the county is free, and there are more waiting children than they know what to do with– literally.

This is NOT to incite some kind of guilt thing, at all– I just want to make sure people know ALL of their options, since adoption is too often thought-of(and of course too often is), over-the-moon expensive.

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Stacey April 30, 2009 at 2:18 pm

Great post. Absolutely delicious child. How do you not nibble on those cheeks all day long?

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Sadie April 30, 2009 at 2:19 pm

Simone has the coolest expressions on her face. Nothing generic. Very knowing…

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Jennifer April 30, 2009 at 2:25 pm

Infertility scars a person for life. I wonder if there will ever be a day when my heart doesn’t sink a little bit when spying a pregnant woman. Not that I’m not happy for her, just sad and jealous for me. Which is weird since I have no desire to be pregnant right now.

I used to believe that infertility treatments shouldn’t be covered by insurance. As much as I really would have liked that coverage having spent thousands and thousands of dollars on IVF. However I had a hard time expecting others to pay for my bad luck in getting knocked up, especially when there are people dealing with serious life threatening issues. However after having 3 in the NICU, I admit I was wrong. You couldn’t have said it better. My 3 premature babies cost our insurance company WAY more than a few rounds of IVF. And that is just looking at the financial consequences of premature multiples. We were very fortunate to not have any health or development issues.

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bri April 30, 2009 at 2:27 pm

“Women are more than mothers or not mothers. Infertility turned me into something I could scarcely relate to…”

Yes, exactly.

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Kate April 30, 2009 at 2:42 pm

Hi Alexa,
What you wrote is something that I think about very often. My only regret is how much time I wasted obsessing about getting pregnant. It’s easy to say that now that I have Lily but I regret all the trips I didn’t take and things I didn’t do. But at the time there was no way to NOT obsess. My daughter helped me become who I really am inside. She makes me a better person and maybe I had to go through all of that to be as happy and grateful for my life as I am now. Who knows. Simone is gorgeous btw. If you are ever up for a playdate once RSV season is passed let me know. Remember me we met once? Anyway, Lily is 16 months old now which I am amazed by just about every day.

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Toni April 30, 2009 at 2:51 pm

Very true…very true.

No matter how many children I have – I will always wonder what it’s like to just fall pregnant.

I’m very grateful for the science that has given me my girls – and the boy that is currently kicking the computer I’m typing on – but I also feel guilty that I live in a state that requires coverage. How sad is that??

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beyond April 30, 2009 at 3:26 pm

well said, alexa, well said.

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She Likes Purple April 30, 2009 at 4:36 pm

This is such a great, resonating post. My husband and I only tried for a year and a couple doses of Clomid seemed to fix what was wrong long enough for me to get pregnant with my beautiful, beautiful baby boy, but that year was easily one of the hardest years of my life. Thank you for writing this.

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cadence daly April 30, 2009 at 4:57 pm

A stellar post. Thank you for writing it.

Simone always looks like she KNOWS something the rest of don’t. I want to be there the day she starts her own blog.

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Natalie April 30, 2009 at 5:21 pm

Simone looks like such a character, and gorgeous too. I thought your post was inspiring.

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jonniker April 30, 2009 at 5:24 pm

I fall more in love with you each day.

The thing about infertility — even MILD infertility, like mine was — is, just like you said, it consumes you. Because, after all, no single aspect of your person determines so clearly how you’ll spend the rest of your life. Will it be as a parent? Or as a childless person pretending it was by choice so people stop asking you questions?

It’s consuming. And while I’m still in the throes of an all-consuming infant who I’ve gleefully handed my whole life to, I am more of a whole person now than I was back then. Yes.

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Julie April 30, 2009 at 7:45 pm

This is such an eloquent, moving piece on the ravages of infertility. It is completely all-encompassing — and it was completely bewildering to those loved ones watching me go through it. If only I could have explained it this clearly back then… :)
THANK YOU THANK YOU THANK YOU for this.

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rebeccah April 30, 2009 at 7:46 pm

A+ post!!!

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dora April 30, 2009 at 7:50 pm

My daughter didn’t sleep longer than 2 hours at a time for the first 18 months. It was exhausting and could have made me psychotic–but all I could think was how much better this was then the years of insomnia I had because I wanted her so badly.

We all sleep well now. Thanks for the post. It was beautiful.

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A. April 30, 2009 at 8:07 pm

So, here’s the thing. I never suffered from infertility. My husband and I got pregnant on our third try and I had a textbook, picture-perfect, healthy pregnancy right up until my son was born at 33 weeks due to pPROM. It was this website and a few others also by moms with premature babies that sustained me throughout the time my son was in the NICU. But, even blinded by fear and the vortex of sadness that accompanies a NICU stay, one thought kept recurring to me: why does my insurance cover this, and not fertility treatments? For, to me, I was getting a post-facto fertility treatment. Without the NICU, I would have no baby. Nor would the mother of the 26 weeker whose bed was next to my son’s. It still seems crazy to me, especially considering the fact that, if I choose to have another child, my insurance will pay for a neonatal specialist who will monitor my high-risk pregnancy incredibly closely to ensure that it results in a thriving baby. That, to me, is a fertility treatment. One I will need because my body has given me evidence that carrying babies to term may not be something it can do. So, to me, this is discrimination. Insurance companies are providing fertility treatments to those who can conceive, but not to those who can’t. It is simply unfair.

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Anonymous New York April 30, 2009 at 8:26 pm

You are amazing, Alexa. Thank you so much for sharing your story, your journey (I’ve been here a while) and your beautiful, beautiful baby with us.

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Casey April 30, 2009 at 8:42 pm

I know you’ve been through a lot, some of it terribly hard, but would I be out of line to suggest that, looking at Simone, it must be worth it? She’s just gorgeous and growing up so fast!

Plus, I think your description of being changed by her fits more of us out there than you may realize. I always have said that my babies have taught me much more than I will ever teach them.

Thanks for beautiful writing.

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Jenn April 30, 2009 at 9:28 pm

I had not thought of fertility coverage from the perspective that it could lead to less risky procedures and thus better outcomes for women and babies. Thank you for such a heartfelt AND informative post.

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Leah April 30, 2009 at 10:36 pm

This post kicks ass. It is spot-on, 110% right in so many ways. Despite the fact you insist that you are a slovenly wretch sometimes, I think you are a true Goddess.

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amanda April 30, 2009 at 11:06 pm

Thank you. Thank you thank you thank you. For educating us and sharing with us and for being who you are. We are all fortunate to hear this message.

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Stephanie May 1, 2009 at 12:21 am

I tested positive the first time I ever took a pregnancy test. Five children later, I have never paused to empathize with the desperation that infertility can bring to the mind and heart of a mother. Thank you for this post. You opened my eyes.

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Al May 1, 2009 at 1:55 am

Alexa … I started reading when you were in your first trimester. I became a religious reader and have not missed a post. I’ve laughed and marveled at your wit, but tonight … tonight I had to look away to clear my eyes in order to continue reading. You have expressed feelings that have ravaged my life for over five years. What infertility has done to me has not been something I have been able to communicate.
Anyways, thank you … for caring about those of us still in the trenches, although even that seems to shallow to describe where we really are. Thank you.

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Penny May 1, 2009 at 8:51 am

What a moving post. I find I struggle myself with remembering the weird person that I was during the time I was an “infertile”. I’ve mentally blocked it out, and even though I can read what you wrote and say, “me too” I would be hard-pressed to conjure up the emotions out of nowhere. It was a terrible time to be sure.

My IVF with 2 embryos resulted in 1 growing baby, and so a small part of me says “but two sometimes works best!” but I suppose if I had had the coverage to undergo IVF in the first place that perhaps it would not have been as heartbreaking to need to do it more than once. After all, each IUI I did didn’t work but didn’t come with nearly the emotional baggage that IVF did. IVF seems so final, in no small part due to the expense of everything.

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Annlmsmith@cs.com May 1, 2009 at 9:39 am

“..understanding an earthquake doesn’t muffle it.” Beautiful. This is a great and powerful post. Thank you so much for writing it.
I don’t, still, define myself as infertile but a fertility doctor reminded me that from where he sat my not producing a live infant (after a stillbirth and two second trimester losses) was, indeed, a definition of infertility. My too high FSH level was another one.
One friend, now a midwife, when I was in my 20s, spread the word about aging eggs and not putting off TTC. I didn’t listen, didn’t have a problem getting pregnant in my mid-30s, and assumed all would go as well as it had for my sisters. Well, no. No, no, no.
I’m about half a generation older than you and I hope that all the knowledge that’s been acquired about the difficulties of producing live infants as we get older is changing behavior, but I don’t think so.
Girls and boys who want to be parents need to grow up knowing that the biology, environment, genes, congenital defects, biological clocks, relationships, etc. are different for each of us. You never know what all your fertility issues might be.

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Kate May 1, 2009 at 10:46 am

Even though you have all the reason in the world to speak on this subject from a solely emotional standpoint, you don’t. You somehow can see past (through?) all these emotions and present the facts, in such a clear and moving manner that it’s really quite amazing. Well done, truly.

I never had to deal with infertility and yet have never taken that for granted. I wanted children so badly that I KNOW I would have given infertility a bad name had I come up against it. I don’t think I would have been strong enough to have dealt with it as gracefully as you.

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Jennifer May 1, 2009 at 11:46 am

You raise so many good points in this post…I couldn’t agree more. I just wish the rest of the world would get it.

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Heather O May 1, 2009 at 12:24 pm

This is a WONDERFULLY written post. Thank you thank you thank you.
H

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Adriane May 1, 2009 at 12:28 pm

My new favorite post.

You know, I had NO idea that IUI resulted in more multiples than IVF, until I underwent IUI and got pregnant with twins. And I considered myself an educated infertile. None of my infertility was covered. Just the diagnostic testing. None of the procedures, ultrasounds, etc. I’m still angry about it.

Infertility stunted my growth, too. I am getting back years of my life that were spent crying! I think if I had only known it would work out, perhaps I would have rolled around in all my money. Maybe not.

Thank you for this post and all the points you brought to discussion.

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Alexicographer May 1, 2009 at 1:03 pm

Love.this.post.

And if you hadn’t briefly interrupted your already-busy life to marry Scott, I’d be on one knee right now.

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Life in Eden May 1, 2009 at 1:23 pm

I too kept my needles for a really long time. Partly because I just couldn’t face looking at that box. It sat up on a shelf in my closet. There had been a box of needles and drugs there for years while trying. It was hard to face.

I’ve often thought that the education you mention is so important. It would be great if the March of Dimes took this tact. I hope they hear you. Maybe we should write to them too?

Simone is beautiful, as always. I loved the scowl in the last post too!

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Aurelia May 1, 2009 at 1:29 pm

This post is the one you should read at BlogHer. Really.

It’s every single thing I need to say to every goddamn politician who has ever walked the planet, and usually I fumble it, but I think I will print this out and next time my hands shake–I’ll quote you.

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Jana May 1, 2009 at 1:41 pm

Brilliant!

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