A Girlfriend’s Guide to Simplify Infertility – Exclusive Look at Content Cont.

Rounding out the books included in this ginormous collection:

  • collection-image-525-x-644Infertility Road to Hell and Back – Azelene Williams (18.95)

Infertility Road to Hell and Back is a memoir of Azelene’s Williams’ struggle with infertility. What about when that longed for baby never happens? When you realize that something is wrong and turn to professionals for help. Tests are done; treatments tried without success. Instantly connect with Azelene in her heartfelt infertility story.

  • Annual Premium Membership to My Hopeful Journey’s fertility organizer & Quick Start Guide ($60)

One year premium membership includes our comprehensive web and mobile fertility tracker. Organize your medications, appointments, test results, procedures and natural tracking in one place. Create custom reports from full web version, write in a journal, task list and much more.

What are you waiting for?  Support Hope (I’m an affiliate) and buy now:

BUY-NOW-ARROW-e1378043014997

You need to read this magazine

My local library branch is small.  The building it’s in is basically a small modular ranch home; when you enter there is a small bedroom-sized space with all the book stacks, fiction and non-fiction.  The main part of the building is open, with four cushy chairs for seating in a circle, four computers for public use, magazine racks, and the circulation desk.  To the far left, with the highest ceiling and widest space, is the children’s section of the library, with a small desk with crayons on one side and a wooden alligator filled with board-books on the other.  What the library doesn’t have in books it makes up for in two important ways: one, the ability to have books from any other regional library delivered to this library when available; two, a great magazine selection.

Consumer Reports, Real Simple, Martha Stewart Living… ah yes, this is what dreams are made of.   Issues available for the loaning for two weeks, all free and within five miles of my home.  It was on one of these days thumbing through Consumer Reports for phone reviews a few years ago when I noticed the magazine placed next to it.  Brain, Child was the name.  The tagline: The magazine for thinking mothers.  I gave a half-smile, thinking, “Oh good, there will be a magazine to keep my brain from turning to mush when I have kids.”  I was still blissfully ignorant of how difficult of a time I would have becoming a mother at the time, and I tucked away the knowledge of a magazine I had never heard of before into that place where I save trivia for a rainy day.

Last summer, several months pregnant, I happily checked out my first issue of Brain, Child for a 12-hour car ride.  And within minutes of opening the pages, I was crushed: this issue was going to be the last.  I thought It figures, the minute I get close to becoming a mother one thing I looked forward to is taken away.  I read the magazine sad with my knowledge.  I guess there isn’t a market for thinking mothers.

Fast-forward to a few weeks ago.  Now that my son is no longer a ball of instinctual and evolutionary responses and is gasp! learning things daily, I am making more of an effort to give him purposeful activities.  This would include Saturday morning story hour at the library.  While waiting for other children to arrive, we wandered over to look at the magazines and lo and behold, Brain, Child was there on the shelf.  I thought they must have been saving the old issues for posterity.  But no, the date said “Summer 2013.”  Wait a minute, I thought.  Was this an episode of baby brain where I had completely missed the message?  I grabbed the oldest magazine there – Winter 2013 – and brought it home.

Turns out the magazine did end, but not long after someone had come along to purchase the magazine and keep it up and going.  The new owner/editor, Marcelle Soviero, was a reader who, like me, couldn’t let the deliciousness of the magazine slip away – and I am so grateful she took the leap to keep it alive.

You need to read this magazine, especially if you are an infertilite, but it’s not going to be easy for you.  Every poem, article, essay, and letter is written by a mother.  But every poem, article, essay, and letter is moving and impactful and considers different perspectives on what it means to be a mother, and what it means to have a family.  The Winter 2013 issue alone hears the voices of women who’ve had miscarriages, who are searching for egg donors, who are foster-cum-adoptive parents, who are infertile.  And I have cried at their stories, able to know exactly what they mean and so grateful they were brutally honest about their thoughts, emotions, experiences.  Brutally honest.  But underneath it all, every story is written by a “mother” in however way that means for her.  Unlike other pregnancy or parenting magazines which focus on what chic stroller you should buy or the latest in teething biscuits, this magazine gets to the root of discovering what it means to be a mother.  The decisions you make on behalf of your children and how you think through those; the emotions of reproductive endocrinologist waiting rooms and their travertine floors; understanding teenage neuroscience…  It’s all peacefully co-existing in the pages of one relatively-ad-free (there are a few) judgement-free magazine.

You won’t find this magazine easy to find.  There are no beautiful cover models.  The cover story of this issue is “Playing God? Do kids really need religion?” and beneath that, “Babies and BMI: How big is too big?”  Those headlines fall below the main water color painting on the issue of two red-brown owls with large magnetic black eyes.  But if you let yourself listen to these women and take the time to hear their stories, you’ll find that not only are you not alone but that there is hope for you too.

Go, now.  http://www.brainchildmag.com or @brainchildmag.

The Personhood Bill

First of all, I have to hand it to politicians for coming up with the common name of some of the bills they put through Congress – names which instantly strike an emotional chord and make you feel guilty if you were against it.  The Personhood Bill, aka the Sanctity of Human Life Act of 2009, aka H.R. 227 and H.R. 212, is a great example of one such bill.  Introduced into the House in 2009 by 61 representatives – 59 of which were men, 1 of whom is Paul Ryan, current GOP VP candidate – and later died, only to be taken up by individual state congresses.  The goal of the bill, and its subsequent spawns, are to declare as law “that human life shall be deemed to begin with fertilization.”  Meaning that the minute a woman’s egg is fertilized that little zygote is a human, a person, a US citizen with all the rights and protections of any other citizen in the country.  Meaning that any means to destroy that cell – the Plan B bill, early-term abortions, or discarding of embryos (relative to practices in IVF) – is tantamount to murder and punishable by law.

Sidenote – You can see why Representative Todd Akin might be a little hesitant to back down from his position that abortion shouldn’t be legal even in cases of rape since he co-sponsored this bill.

While this bill doesn’t have a chance of becoming national law – at least not yet, it has been brought up  in several states.  The implications for infertilites are pretty stark, especially for those for whom IVF is their only option for achieving pregnancy.  (This might mean you, fellow unicornuate or Mullerian anomaly sisters).  During IVF, several embryos are typically created for selection for the IVF process.  Depending on the doctor and the circumstances, the doctor might choose to transfer several embryos into a woman at a time with the odds that one of them will stick.  Some doctors, depending on the situation, would only transfer one embryo though several might have been created.  The remaining embryos are then frozen for another cycle or research, or they are discarded.  With Personhood legislation, each one of those embryos would be considered a person even at that early stage, with full rights and protections, meaning to discard of them would constitute murder.  This means that states with this legislation would see the number of IVF specialists dramatically decreasing as they move to neighboring states without such restrictions.  IVF practices under Personhood would also decrease that clinic’s success rate, especially if they choose to create and then transfer only one embryo at a time – creating an expensive cycle of trial-and-error for patients as they would see greater numbers of visits and transfer attempts.

As I mentioned, several states have brought Personhood bills forward for public voting or referendums, including Virginia, Oklahoma, Georgia, South Carolina, Colorado, Mississippi, and Arizona – all of which had their own takes on what “personhood” entails.  To my knowledge, none of them have passed – but it’s been close, especially in Oklahoma.

My advice to you: Next time you vote – tomorrow! – make sure you know what kind of laws might be up for public voting in your district, and just what you’re voting for or against!

PS: Mitt Romney was the only GOP candidate during the debates earlier this year to not sign the “Personhood Pledge” to support Personhood.  As governor of Massachusetts in 2002 he firmly attested to a woman’s right to choose; as a presidential candidate ten years later he hypothetically supports pro-life legislation, though we don’t know if that’s his true stand or if he’s just trying to woo moderates / independents any way he can.

 

How the candidates compare for infertility advocacy

You’ve seen the memes, heard the “zingers,” and probably even exchanged your own play on words about Big Bird, the 47%, or the binder.  But what have we heard from the presidential candidates on the topic of infertility – their views, their stands, where they draw the line in the sand?  Very little.  And my attempts at using Google to find a neat answer proved fruitless.  So over the next three weeks as we head toward election day, I’ll be taking up some time here on the blog to talk about some of the important issues related to the cause of infertilites.  Today’s post will start with abortion, and how that very public and long-standing debate could shed light on decisions affecting infertility treatments.

Please note that while I’ll do my best to research information and present facts from an unbiased view, I can’t say I won’t let my opinion leak out here and there.  An open, transparent, and respectful discourse is what we need in this country, so please leave comments and I promise to moderate them fairly.

Our catastrophically polarized and, at times, completely immobile nation stops the public discourse of women’s health at the old standby, abortion.  In this venue, we can neatly sum it up that Democrats are pro-choice, Republicans pro-life.  The VP debate left abortion and women’s rights to the ending minutes of the debate, referencing each candidate’s Catholic faith and asking them to reflect upon their positions.  Representing the larger dichotomy currently tearing the Catholic Church apart internally, Biden clings to the social justice side while Ryan sticks to the preservation of life side.  But regardless of their personal beliefs, we at least discovered a fundamental difference in how these two men  – and ultimately, parties – would handle the question on the national level.  Biden stated very clearly he would not legislate his religion; overthrowing Roe v. Wade as some conservatives are aiming to do, would essentially be doing that.

Wait a minute: I thought the Republicans were all for personal liberty and keeping the federal government out of citizens’ lives?

So okay, you’re probably thinking, I don’t really care about abortion because I can’t get pregnant anyway.  Let me then continue down the religious road for a minute here, and again I’ll be sticking with just the VP candidates because we have clear records of their stands from the debate.  Both men claimed to adhere to the teachings of the Catholic Church and their decisions about when life begins (at the moment of conception) and all that.  Attention infertilites, do you know where your personal religion or faith stands when it comes to seeking infertility treatments, including medications, IUI, and IVF?  If you don’t and having that support of your faith through this soul-searching time is important to you, there is no time like the present to do a little Google searching yourself.  Go ahead, this blog post will still be here when you get back.

I know where my Church stands.  Both my husband and I happen to be Catholic.  And when we started discussing options like Clomid, we looked it up, partially out of curiosity, partially to know how much we would be allowed to say to a priest without being excommunicated.  Clomid, fortunately, is permitted, as is surgery to correct infertility and other medical procedures meant to enhance reproductive chances.  IUI and IVF, however, are against the Church’s teachings (as are birth control pills).  And the Sanctity of Human Life bill, co-sponsored by Ryan, would effectively define life as starting with conception and criminalize – yes, criminalize – the practice of IUI and IVF.

Remember when women used to run off to doctors in alleys or drive to Mexico for abortions, risking their lives because they weren’t legal in the U.S.?  Now picture infertile women doing the same – this time hoping to get pregnant in the first place.  How did the pendulum swing so dramatically?

Choosing a fertility clinic/doctor

I am fortunate enough to live in a metropolitan area where I actually had a choice in reproductive endocrinologist offices.  I realize not everyone has that kind of choice and that I am very lucky to have had the opportunity to seek assistance from both for different reasons.  But when it came down to choosing which one to stick with for my treatment, after some investigations it became pretty clear.

There are two clinics each within 25-30 minutes of my home, and the only ones available for a 50 mile radius.  Fertility Clinic A has been in the area for 25 years, has one doctor and two physician assistants.  Fertility Clinic B has been in the area for maybe 15 years and is one of three locations in the state.  Clinic B also has a spa associated with it that includes services such as acupuncture, yoga and other exercise programs, massage, nail care, waxing – basically the works.  My friend B. actually used Clinic B because of their suite of services and their locations, which allowed her to travel to her home and still receive the same level of care with familiar faces.  Clinic B was my first introduction to fertility clinics by way of B., who wanted to sign up for yoga classes together.

Now, if you are lucky enough to have a choice in clinics or doctors, you can always start the decision making process by looking up the statistics on the Society for Artificial Reproductive Technology’s website, which publishes IVF success rates for every clinic in the country.  But numbers don’t always tell the whole story.  Some clinics might turn you away if they deem you too high risk, which might offset their numbers.  And personally I like percentages rather than wholesale figures.  For instance, Clinic B’s SART report shows over 1500 attempted IVF cycles in 2010 while Clinic A had about 200 IVF cycles reported in that same timeframe.  No doubt a lot of this is attributed to the largess of Clinic B, with three locations and at least one or two doctors at each.  Maybe the smaller number of Clinic A would make people feel nervous – do they have enough experience to really help me (even though they’ve been around for 25 years)?  So consider the percentages: of Clinic A’s 75 IVF cycles in women less than 35 years of age, 53% resulted in a pregnancy.  Clinic B had a whopping 652 IVF cycles for women younger than 35, but only a 36% pregnancy success rate.  There’s much more detailed information on the SART website about these numbers, so be sure to check it out.  Unfortunately, the numbers only detail IVF procedure success, not other therapies such as IUI or medicinal treatments.  It still left me with a little bit of uncertainty as to who to pick.

I decided to try some of the alternative medicine and spa services available through Clinic B, which by the way is a spa open to the public.  I signed up for a month of yoga for fertility classes last summer, took a free fertility nutrition workshop, and enrolled in a “ladies’ night” event where you could sample 4 different mini-spa services in one night.  The yoga was probably what you’d expect a yoga for fertility class to be – easy, relaxing, not very strenuous at all and probably couldn’t count as bona fide exercise.  The nutrition workshop was kind of interesting but a little too on the hippy-side for my taste (the instructor brought hemp pesto to try with almond flour crackers as an example of one of her recipes), and she kind of started by saying that while we could base our nutrition on the Chinese medicinal tables and our own idea of our symptoms, the better way is to meet with an acupuncturist to get an accurate idea of issues with your chi.  I get it, it was a free class, you’d probably expect them to sell you on something.  But it was the ladies’ night’s atmosphere that led me to really shy away from the place.  I paid $60 for what I thought was going to be 2 hours of services, and because of the disorganization turned into 3 hours.  The first part was meditation, where about 20 of us (there were about 60 women total) sat with a therapist who led us through guided meditation.  But then she asked us to share “Who came to meet you in the garden?”  I felt extremely uncomfortable sharing my personal experiences.  Next up was a chair massage, which I would do again with the same masseuse in a heartbeat, and was the most genuine part of the whole experience.  Then it was time for acupuncture – that was really the reason why I went, to see what it was all about.  The acupuncturist asked, “Any pain? What are you working on today?”  “Well, I’ve been trying to get pregnant…”  And after telling him an abbreviated story, he essentially said, “Clomid doesn’t work, acupuncture does, I’ll get you some handouts and my card.”  Having just started the clomid that left me with little hope and wasn’t the reaction I expected from someone who presumably gets his business from the clinic downstairs.  The night ended with a mini-facial (“I would recommend you make an appointment for the cranberry scrub”), a paraffin hand wax and “makeover” which was really just getting matched with a Jane Iredale (all natural) foundation and lipstick.

If you ever have the opportunity to sample services, even peripheral services like these that might be offered by your clinic, or a support group – go ahead and give them a shot before making your final decision.

While Clinic A has none of these fancy offerings, I was afraid of going to Clinic B and having them sell me on the services as part of my treatment plan.  The spa at Clinic B was already trying to sell me tons of products (they really looked at me funny when I didn’t buy anything in the gift shop); what would their medical staff be like?  I know B. saw an acupuncturist regularly, and at $60 a rip I felt like it would be a financial drain (“the more often you go, the better it works”).

It turns out there were a few more philosophical and humbling differences between the two clinics as well.  Clinic B’s entire building smells good.  It smells like the spa, like sugar and flowers and fruit and all kinds of other yumminess.  The clinic’s waiting room has 12 inch travertine floor tiles (money!), a fireplace, leather couches and recliners, dim lighting, bookshelves and DVD racks (all available for purchase), and a K-cup machine for you to make a nice beverage.  Clinic A has tile floors and carpeting, two separate waiting areas (one for the lab and one for your appointments), innocuous magazines to read and tvs tuned to news stations, bright and sunny lighting, and a single-serve coffee maker (not a K-cup) available to use.  One significant difference – Clinic A has a fragrance-free philosophy.  As fragrances are the #1 cause of VOCs (volatile organic compounds – not good for anyone, especially infertilites and fetuses), no one in their office wears perfume or lotions with fragrance and they ask their patients to do the same.  There are no scented candles or air fresheners or nice smelling scrubs in the bathrooms, as there are in Clinic B.  For me that was a signal that this place was about business more than appearances, and helped make me feel confident in making that choice.

Sure, there’s lots to be said for patient-doctor relationships too – you just have to feel that it’s right for you, that you’re in good hands.  But I also urge you, if you have the capability to choose, to consider reading between the lines of the entire business model before committing yourself, your partner, and your future family to a clinic.

Freaky Friday and the minor miracle

At my week 10 appointment I officially “graduated” from the fertility clinic to my OB/GYN group.  My PA performed the ultrasound and let me watch the baby the entire time she took measurements.  I was shocked at the amount of movement going on in there that I couldn’t feel at all.  Little kicks and little waves, already trying to push its way out of the narrow spaces.  Then the other shock – hearing the heartbeat for the very first time.  I would be lying if I said it wasn’t freaky, hearing the big “BUMP bump.  BUMP bump.”  (that’s you, the doctor said) then a little “whish-whish-whish-whish-whish-whish” after she moved the transmitter a little to the left.  FREAKY.

Oh, but that wasn’t even the freakiest news of the day.  In her final measurements, the PA located and measured the follicle from which the egg had erupted.  “I saw this last time but I wanted to make double sure.  You ovulated from your right side.”  Meaning, from the ovary that doesn’t have a fallopian tube or half-a-uterus to connect to.  Meaning, that little egg had to criss-cross my abdomen to even get sucked in by the other fallopian tube, then it had to get fertilized, and then it had to be healthy enough to even stick.  And the chances of that happening in a unicornuate infertilite is like slim to none (technically less than 5%).  Maybe running 12 miles a week helped move things along?  J

Oh, but wait – the story gets much better.  There is kind of a superstition in my family that when one person dies, someone gets pregnant.  It’s just how it goes, and how it’s always worked ever since I could remember.  In late January my husband’s grandmother passed away and I really didn’t think much of it, because after all she was an in-law and probably didn’t count in my family rule.  But then I got pregnant and miscarried right afterwards.  Oh, but then I got pregnant again.  “Do you realize,” my husband said to me last week, “That you’ve been pregnant every possible time that you could have been since she died?  How do you feel about the name Agatha?”

He likes telling that story to his aunts and uncles, especially now as we are finally cleaning out her house and dividing her belongings.  I think it helps him have some kind of ownership of an experience that is largely out of his control, even if it’s not entirely true.  And thanks, Grandma Agatha, for your divine intervention, but your name still isn’t on the list.

“Everything feels normal” and other lies

OK, I’ll give you that the first stage of grief is denial.  It would not be an unusual reaction to any negative news, therefore, to immediately think, “That can’t be right.”  But when I was blindsided by my UU diagnosis back in September I actually began to have serious doubts about all the other health care practitioners I had ever come into contact with.

Having moved several times, I have been to about 4 or 5 different OB/GYNs or primary care practitioners until that point.  And each one of them during my annual examination would say, “Everything seems normal.”  I distinctly remember one doctor pushing on my pelvis very hard with the butt of her hand, saying, “There’s an ovary…  and there’s an ovary.”  How could so many doctors have gotten it “wrong?”  How could they tell me everything was normal and later discover everything wasn’t?

Of course they were right about my having two ovaries; it still seems doubtful that’s something they can feel from the outside of the body.  I’m sure there really is no practical way to identify if there were two “horns” during a physical examination.  So they weren’t wrong, not at least about that.  But that example just exemplifies the lack of information, awareness, and proactive treatment of infertility in the medical profession.  Infertility is a problem that you don’t look for until there is a problem.  But with a statistic like 1 in 6 couples of reproductive age experiencing infertility, shouldn’t we be advocating for a little more proactive and aggressive diagnoses?  Maybe if I had known at 26 when I got married that I was a UU I might not have waited to try knowing what I know now about my chances of getting pregnant naturally.

I don’t think it’s fair to say that the doctors didn’t know what they were doing when they were giving me their clean bill of health, so to speak.  The x-ray was only first discovered in the late 1800s, and so in the last hundred years how much further have we really come in finding ways to unintrusively examine the body?  Ultrasounds (now in 3D and 4D) and sonography, CT scans, and MRIs – and that’s it.  Genetic research has been around since the 1960s but only in the last twenty years have we “unlocked” the human genome.  Modern medical research is stymied by political agendas, big pharmaceutical company lock-outs, and expensive rigorous testing for approval, a process that could take several years.  I am nearly as old as the first “test-tube baby,” born in 1978.  Reproductive endocrinology is still a fairly young science, and with all the information doctors need to keep track of nowadays it’s no wonder that screening for congenital anomalies and other causes of infertility aren’t exactly on the top list of priorities for doctors.

Even still, it’s hard to have faith in going to anyone but a specialist – if only to save yourself the time of having to run through the details of your own diagnosis and its implications for your treatment.  There’s no denying that.