The Chia Pet of Friendships

First off, I’m totally spent.  In the past 5 days I’ve slept in three different beds in three different towns, attended and presented at a professional conference, visited my family, explored my hometown after getting acquainted with a new one, walked on a beach, and caught up with old friends from high school through graduate school.  Today, I woke in my childhood home, drove 7 hours to my new home, and here I sit at work, as I will be until 10pm (it’s my late night!).  Hopefully, I’ll sneak in a dinner with Mr. But IF in the meantime since I haven’t seen him since Thursday and have plenty of stories to tell.

Number one on the list?  I met one of my IF friends-in-the-computer on Saturday.  Since early 2011 I’ve been regularly corresponding with a particularly awesome group of gals I met on an online infertility support community.  We bonded over our unpredictable and long cycles, and that shared experience formed the basis of many strong and lasting friendships.  I know I needed exactly these women in my life, and I know they feel the same.

After over a year on this particular infertility support site I still felt like a bit of an IF pariah.  While I don’t wish to engage in the “my infertility is harder than your infertility” war, I’ll state outright that my experience living through infertility that manifested as unpredictable, multi-month-long, anovulatory cycles was so very different from most of the infertility I encountered on the Internet that it made it hard to relate to the IF masses.  On the “general” boards women would moan about being a day late in getting a positive ovulation predictor kit (OPK), they’d count their time trying to conceive in cycles not months, and they’d discuss ways to lengthen luteal phases or increase cervical mucus.  My experience with infertility was a far cry from that (admittedly painful) reality.  In over 3 years trying to become pregnant I’ve never seen a positive OPK as I don’t ovulate unless I’m medicated.  If I were to count my time trying in cycles I may resort to throwing myself off a bridge; though it’s been nearly 3.5 years, I’ve only had 6 ovulatory cycles.  And, finally, luteal phase length and cervical mucus were total mysteries to me (and largely remain so) since my body won’t budge without medication.  When I found this inspiring group of women that shared my struggle with long cycles I knew I had found my home, my IF family.

Meeting C on Saturday was an experience I won’t soon forget.  It was sheer luck that it happened, too.  My work conference was held in a small city 5 hours from my current home, and 2 hours from my childhood home.  On Thursday afternoon I bemoaned the conference location writing on Facebook, “What in the world can I possibly find to do in X?”  Mr. But IF posted a link to the list of currently blighted properties within the city limits and suggested a self-guided architectural tour (har har), a friend from college posted an incredibly helpful list of local bars and restaurants (many of which I did hit up), and, thank goodness, C said, “Wait! You mean my city X?”  That’s one things with friends in the computer, they’re totally placeless to me. Well, I guess not exactly placeless, I’m thoroughly convinced they actually live in my computer.  All but those ones that live in IVF mandate states, that is, I’m just convinced they live in some fantasy dreamland that doesn’t actually exist but is only there to make those of us schmucks that live in non-IVF mandate states dream and drool…  Anyway, I digress.  Turns out I was going to be about an hour from C’s hometown.  Within about 30 seconds of her comment on my wall, I was taunting the rest of our group with updates of, “Holy shit, I’m gonna get to meet C and you aren’t!”  (Because, you know, I’m classy like that.)  Two days later we sat down to a wonderful (but all too brief) lunch.

About an hour ago I was tweeting about meeting my friend-in-the-computer.  As you might have noticed if you are a regularly follower of this blog, I kinda tend to struggle with brevity so tweeting in general is typically a struggle for me.  Why say something in 140 characters when you could write 140 pages, eh?  So, as I sat there struggling to put the overwhelming array of feelings I experienced into a handful of short words, I found my answer.  I replied,

It was like the chia pet of friendships. Relationship in full bloom within 30 seconds of meeting! 🙂

And, I actually think those few words convey the experience pretty accurately.  Ours was an instant bond, an instant friendship, of the like I’ve never experienced before.  Within moments of texting, “I’m in a blue sweater with blue and white scarf,” we were down to the discussions one usually reserves for the longest of lifelong friends.  With my first sip of water, those chia seeds took root.  I’m so thankful for my chia friendship, and hope to meet more of my IF sisters someday in the not-so-distant future.

NIAW in absentia

So, in about 1 hour I’m hitting the road and on my way to a professional conference.  I’m excited to see colleagues, talk shop, and get that much-needed, conference-induced dose of professional pride and love of one’s calling.  I’m not so excited that it means that I’ll likely miss out on much of the remaining National Infertility Awareness Week events.  I mean, I get one week a year to endlessly hound friends, family, and strangers about infertility, and I’m missing half of it?  Pshaw!  (Don’t worry, I’ll make up for it throughout the rest of the year! ;-))

Yesterday’s news trumped my usual Wednesday list, so I thought I’d do a special Thursday edition this week.  Since there will likely be few (if any) posts from me until next week, I thought I’d provide you with a list of suggested reading/viewing/doing for the remainder of the week.  Feel free to add your own recommendations in the comments below!

  • Explore the many wonderful contributions to this year’s NIAW Bloggers Unite Challenge.  They are listed on both RESOLVE’s blogroll, as well as the wonderful Mel’s Stirrup Queens blog.  (Shameless self promotion — Check out my own contribution while you’re at it!)
  • Speaking of blogrolls, check out the blogrolls of your favorite ALI (Adoption/Loss/Infertility) and PAIL (Pregnant/Parenting after Adoption/Infertility/Loss) blogs.  My own (partial) blogroll is to the right.
  • Consider adding some of Keiko’s fabulous NIAW-themed Facebook timeline cover photos to your account.
  • Join in the conversation on Twitter.  Connect with others using #NIAW, #IF, #IF1in8, and #infertility.  Creating my own (secondary) IF-related Twitter account has been huge as I continue to struggle to find various networks of support through this journey.
  • See if there is a RESOLVE support group in your area, and, if there isn’t, think hard about starting one.  I can promise you, as much as you may worry if you are the “right” person to be starting a support group, there are dozens of couples in your community that think you are!
  • Check out the Center for Infertility Justice and begin to familiarize yourself with the legal issues related to infertility in your home state and in the nation.  Consider writing, or better yet, calling, your senators and representatives in support of infertility awareness and fertility-friendly legislation such as the now-dead Family Act of 2011.  What you say doesn’t matter nearly as much as the fact that you are saying it!  Take the plunge!
  • If you haven’t already, consider opening up about your struggle to friends, family, and, even, your Facebook feed.  Taking the step is scary to be sure, and may not fit with everyone’s lifestyle or your partner’s wishes, but I can tell you that looking back I am profoundly happy we shared our story.  Within days friends, family, and casual acquaintances were coming out of the woodwork to share their own difficult journeys, and, I knew instantly, I had not only helped unburden myself by sharing, but also had provided an outlet for countless others.
  • Does your employer provide any infertility coverage?  If they don’t, consider asking why.  A RESOLVE-commissioned study recently found that 65% of employers that cover infertility do so because they were asked to by their employees.  Ask!
  • Watch some strong women and men share their stories – Keiko Zoll’s 2010 What IF, Redbook magazine’s The Truth About Trying campaign, TLC’s A Conception Story, and search YouTube for this year’s contributions to Fran Meadows’ video movement.  While you’re at it, why not create your own?
  • Buy a book on infertility and support an author.  There are just too many to name, but my favorite recent read was Tertia Albertyn’s So Close: Infertile and Addicted to Hope.
  • Watch the hilarious Maybe Baby (link out to Netflix).  It’s a hard one to slog through at points, but has its shining moments.  I mean, with Dr. Bean as an RE, what could possibly go wrong?  Only thing missing is all the agonizing over money.  As a British film, those concerns are foreign to the characters.
  • And, finally, have a date night with your partner.  This IF stuff is hard, and sometimes you just need to remember why you wanted to procreate with this person in the first place!

Signing off for now!  Catch you all next week!

The verdict

So, the long-awaited rheumatologist appointment was yesterday afternoon.  5 weeks and half a dozen tearful pleas to get an earlier appointment, and guess what the verdict was?

I have been diagnosed with “a constellation of lupus-like symptoms, but definitely not outright lupus.”  Um, yay?  <scratches head>

I mean, don’t get me wrong, there is certainly nothing as awesome as hearing you don’t have a(nother) serious, life-impacting condition.  But, I’m so tired of the immediate next question in my head being, “So, what DO I have?”  Especially because, the answer is so regularly, “Well, I don’t really know.”

The next steps are to get additional blood work performed, as well as an MRI of my back.  Both the rheumy and myself expect that nothing unusual will turn up on either.  It’s more waiting while my insurance decides whether or not I’m permitted to actually get the MRI, but either way my followup with the rheumatologist is on May 7.  Less than 2 weeks away!  Assuming that nothing is uncovered on either the blood work or the MRI, the rheumatologist has given us her blessing to start trying to conceive again.

And, here’s my problem.  Like, my totally mind-fucking current obsession.  Have I gone off the deep end?  I’m having major quality of life issues, I’ve been building up the importance of this appointment in my head for over a month now, and I’ve fretted to everyone I know about how nervous I was for the visit.  Now that it’s over?  All I can feel is complete elation.  No, not because I don’t appear to have lupus, not because I actually liked and respected the doctor (though, that one was a shocker), and not because someone is investigating my complaints.  The only chorus that is echoing through my head is, “We can try again!  I can ditch the birth control!  I finally get to rip into that Gonal-F in the fridge!”

As I’ve started to explain the results of the appointment to friends and family over the past 24 hours, all immediately ask variants of the questions, “What can be done?,” “What’s causing the pain?,” and “Will she be able to help you?”  Honestly, I have absolutely no fucking clue.  I didn’t ask.  Only as I have started crafting replies to these questions have I realized how totally and completely I have lost my mind.  Me, the in-your-face, self-empowerment, take-charge-of-your-health, Hashi’s princess, I’m answering these real questions with squishy “I don’t knows” and other forms of cop outs.  I’ve marginalized my pain by stating that, since I’ve lived with this pain for so long now, continuing to live with it without a real cause will be no great challenge.  And, it’s true, on my good days I can visualize a future where I still have this pain and not be that troubled.  Half the battle with my pain is the constant wonder of what it means for the future.  If I know I don’t have lupus, the pain is infinitely more bearable.  Similarly, I’ve started parroting back the same unsatisfying answers to my friends and family that so many of my doctors use on me.  “Autoimmune issues/inflammatory conditions/non-specific pain are hard to diagnose and treat,” I say.  “You see, so much of the body is a complex network of interconnected pathways that its impossible to distinguish one syndrome/set of symptoms/AI disease from another,” I reply.  “Antibody testing is notoriously inconclusive,” I explain.  Unfortunately, I know enough to know that all the above are true, yet I’m dumb enough (and, apparently, beaten down enough) that I’ve given up caring about pushing any further.  It’s like I’ve developed infertility Stockholm syndrome.  I’ve been fighting the system – doctors, insurance providers, society – for so long, I have suddenly started to accept their orders as truth.  I deserve to be treated like this, I’m infertile.  I know you can’t give me answers and I’m sorry for being such a complicated case.  I understand that you don’t have time for me.

But, since everyone needs something to look forward to, I’ve silently and slowly refocused my battered brain.  You know the only thing I’m 100% fixated on right now?  We can start trying to have a baby again in 1 month’s time.

When we started trying to conceive in 2010 I stopped caffeine, I stopped alcohol, I watched what I ate, I was a perfect little stereotype.  Now, as I sit here with debilitating back pain and a whole host of unexplained medical complications, I’m all, “Knock me up doc!  Let’s get this show on the road!”  Time takes a terrible toll on one’s sanity.  I’m a cautious person, I over-analyze all that is in front of me, and I try to find a balance between doing what’s wise and doing what’s necessary.  In the last 6 months, that has ceased to be the case when it comes to my reproductive health.  If someone called me today and offered me a free IVF cycle with an unlicensed doctor operating out of the back of an RV I’d probably do it if there was even the slightest chance of my becoming a mother.  And, that’s terribly, terribly frightening.

Join the Movement

This week marks National Infertility Awareness Week.  It’s the infertility community’s biggest of events, held as we all catch our united breaths and sit on the precipice of that most painful of national holidays – Mother’s Day.

Bloggers Challenge badgeRESOLVE has selected the theme of “Join the Movement” for this year’s Bloggers Unite challenge.  The Blog Challenge seeks, “to bring together bloggers to talk about how you are making the difference in ways large and small in the lives of people with infertility.”  How am I making a difference?  Am I making a difference?  I honestly don’t know.  All I do know is that my life would look much different, much darker right now were it not for our decision to break the silence of our infertility, turn heartache to activism, and establish and foster a multitude of support networks in our lives.  We never set out to be advocates; we just needed to find a way to get through the day.  When my mother died of cancer in 2002 no one asked me to make a difference or join a movement; I grieved, I grew, and I learned to live on.  First, from day to day, then month to month, and, ultimately, year to year.  I figured I’d apply the same approach to infertility.

Mr. But IF and I officially announced our infertility to the world on February 16, 2012.  After 20 months trying to conceive our first child, 2 serious medical diagnoses (with another unknowingly on the way), and 1 ectopic pregnancy terminated at just past 6 weeks with the chemotherapy drug methotrexate, we were tired, lost, and alone.  We had the support of close friends and family earlier on in the struggle, but everything was handled with a hush and a whisper, a gentle hand on the shoulder and a knowing look, and a whole lot of hoping no one outside of that tiny inner sanctum would ask any questions.  We lived like so many others in the trenches of infertility live; composed of 1 part false bravado and 1 part shell shock.  Then, the word “personhood” hit that 24/7 national media cycle.

In case your last name is Van Winkle and you’ve been in hibernation for the past year, personhood has become the rallying call of many anti-abortion/pro-life advocates in this country.  By defining the start of life as the time when sperm first fertilizes egg, personhood advocates seek to grant all the legal rights, privileges, and protections of a human being to the tiniest of embryos.  Primarily done in an effort to criminalize all abortions (the tagline for PersonhoodUSA is “protecting the pre-born by love and by law”), personhood legislation and amendments have the potential to have serious chilling effects on many types of infertility treatments and medically necessary “life of mother” abortions in this country.  If we define life as the merging of sperm and egg to create embryo, then infertility treatments such as in-vitro fertilization, during which these fertilized-embryo-proto-“humans” may be subject to some risk, could be akin to murder even though the ultimate goal of these procedures are the creation, not the ending, of life.  Similarly, women such as myself, women who made that debilitating walk into maternity triage pregnant with a doomed ectopic pregnancy and out of maternity triage having poisoned their much wanted child could be turned away at the hospital doors or watch the doctors that treated them be brought up on manslaughter charges.  On February 12 of last year I had enough.  I posted a link to a newspaper article detailing the potential pitfalls of Virginia’s proposed personhood bill on my Facebook wall and explained that, “As the survivor of an ectopic pregnancy, I find legislation like this equal parts disturbing and infuriating. No matter what you think about abortion, nobody should ever have to risk their life hoping a non-viable fetus will naturally miscarry. I can say first hand that the experience is traumatic enough without injecting politics into the mix.”  I sat back, held my breath, and waited for the anticipated fallout.

I almost think I wanted a battle.  I wanted controversy, I wanted someone to scream at, I wanted to make ample use of that “unfriend” button.  Looking back now I know I was grieving for the pregnancy we’d lost just 3 months earlier.  With each new personhood article that hit local and national media sources, I found myself attracted to the comments section like they were my own personal train wreck.  I added my own comments, told my own fresh story to the frenzied gaggle of anonymous Internet commentators, and watched as I was called a murderer, a selfish whore, a baby-killer, and worse for choosing my own life over that of a mass of cells in my fallopian tube that had not one single hope of ever becoming a human being.  I think I may have actually liked it, or maybe thought I deserved it.  I was in so much pain, so very lost and confused, that the hatred and scorn of the Internet masses was actually something I sought out.  If I couldn’t talk to anyone in my real life about the baby I had killed, at least I had the faceless mob that wanted me to bleed out before ending my pregnancy to confide in.  When the flagellation of anonymous strangers ceased being enough, I brought my story to those I know in real life.  I almost couldn’t believe it when all that was doled out to me in return was a helping of love and support bigger than I could have ever dreamed.  I didn’t get my confrontation; instead, I got love.  And, only through that love did I learn to forgive myself.

Because a gal can never have enough of a good thing (shoes, jewelry, trans-vaginal ultrasounds…), I went from hiding my infertility to shouting it from the rooftops in about a month’s time.  On March 20, 2012, I announced my intention to walk in RESOLVE’s inaugural Washington, D.C. Walk of Hope; on April 4, 2012, I presided over the first meeting of my RESOLVE peer-led infertility support group; and, during Infertility Awareness Week last year, Mr. But IF and I attended a local RESOLVE fundraising dinner organized by a support group member.

I think it matters that our infertility 0 to 60mph in 10 seconds flat happened during a four month time span during which we were not permitted to try and conceive.  After receiving a methotrexate injection to terminate my ectopic pregnancy on November 18, 2011, we were forced to wait three months for the drug to leave my system and for my folic acid levels to return to adequate preconception levels.  Methotrexate works by attacking rapidly growing cells in the body and thus is great at killing cancer and embryos alike.  It’s also a folic acid antagonist and totally depletes the body’s stores of this most essential of prenatal vitamins.  While we waited we went to our first reproductive endocrinologist and jumped through what we assumed would be a bunch of pointless diagnostic hoops (hey, doc, I know what the problem is!  I don’t ovulate!), only to discover during my first HSG that both of my fallopian tubes were proximally blocked.  Hashimoto’s, PCOS, anovulation, ectopic pregnancy, blocked fallopian tubes?  I was about to shout infertility Yahtzee in the months leading up to our public infertility confessional.  I needed to do something – anything – to help keep focus, to help maintain sanity, to help me find a reason to get out of the bed in the morning and lay my head down to sleep at night.  Fundraising?  Sure.  Support groups?  Why not.  Dinner out?  Sign me up.  Hell, had someone asked me to discuss our infertility on a tabloid news program, write a tell-all book, or become medical test subject for fledgling ultrasound probers, I probably would have done it.  Anything was better that waiting and remembering, waiting and wondering.

Something funny happened along the way, though.  All these avoidant behaviors, these selfish distractions, they did a lot more than help me pass the time.  They did something that no amount of openness with fertile friends and family members could have ever done.  These activities normalized my experience, they let me know I was most certainly not alone in my feelings of pain and powerlessness.  And, not the least of which, anger at an insurance system that was well within their rights to tell me the surgical removal of my endometriosis was akin to breast augmentation because that surgery might help me make the “lifestyle choice” to become pregnant.

When my mother died I rebuked all the attempts of others to tell me that they understood my sorrow and had walked in my shoes.  My mother lost her battle with cancer 14 agonizing months and 1 brief remission after her initial diagnosis.  We rushed her to the hospital on my 18th birthday when I was home from college for Fall Break, I was told of her diagnosis a month later when I was home for Thanksgiving, and I spent the bulk of my Christmas break that year pleading with her in vain to let me withdraw from school so I could be home for her treatments.  We lost her the following Christmas.  I was 19; she was 48.  During the funeral and for many months after friends and family offered endless thoughts and condolences for which I’ll be eternally grateful.  All offers of support were welcome, save one.  Each time a friendly face recounted how hard it was for them to lose a parent or grandparent I couldn’t stand it.  90 year old grandparents are supposed to die, men and women in their 50’s and 60’s are supposed to face their own parent’s mortality.  A college sophomore isn’t supposed to watch her once-vibrant mother waste away to skin and bones in the matter of 14 months.  I have exactly three childhood friends who are allowed to talk to me about my pain like that.  One lost her mother much younger than I to sudden cardiac arrest, and the other two, sisters, lost their father to cancer a few months after my mom passed.  Beyond those three, however, no one is allowed to try and normalize my experience.  I built this wall around myself to keep out all such attempts to share in my pain and commiserate.

That wall was still there when infertility and pregnancy loss entered my world.  I was determined that no one knew my pain, and no one had a right to compare their pain with mine.  Yes, I had my lovely gals in the computer, but the mere act of having friends in the computer in the first place just served to reinforce my otherness.  Normal women, fertile women – they don’t have friends in the computer.  Only lonely, broken me had those.  But, oh how wrong I was.  How wonderfully and how sadly wrong I was.  As with coming out to friends and family beforehand, becoming involved in the real life infertility support and advocacy communities challenged my preconceptions and base assumptions.

2012 Walk of Hope

The 2012 Washington, D.C. RESOLVE Walk of Hope

I signed up for last year’s Walk of Hope on a whim and was attracted to the event because, unlike so many other fundraising walks, no minimum monetary goal was required and no registration cost would be assessed.  RESOLVE recommended a $100 goal, and I stuck with that default knowing no harm would be done if I couldn’t meet it.  $780 later, my preconceptions were shattered.  As I’ve discussed before, my biggest fear when founding my peer-led support group was that I’d be alone in the room with Mr. But IF and without any support group coffee.  In the past year our smallest gathering included 8 women and men, and our “surviving the holidays” special December meeting stretched our small conference room to the max with a total of 23 attendees.  There went another blind assumption.  Even when we announced our struggles to friends and family, I expected some push back, some controversy, especially from one particular wing of our family.  The very same relative from whom we expected the greatest judgement was the first to let us know of her own struggles with back to back ectopic pregnancies.  Another lesson in don’t judge a book by its fertile-appearing cover.

Unfortunately, far too many people know my pain, live my pain, survived my pain.  That 1 in 8 figure?  It’s never been clearer to me than when I walked alongside 720 other brave women and men in three states who had raised tens of thousands of dollars for RESOLVE; than when we go around the table and share our stories each month at our support group; than when my infertility announcement on Facebook was greeted with 5 private messages within a week from high school, college, and professional friends and acquaintances – all young, educated, successful women – who told me of their own silent struggles with infertility and pregnancy loss.

So, how did I “Join the Movement?”  I didn’t join the movement, I was saved by the movement.  At best, I’m an accidental activist.  After my mom died, I found a strength in myself I didn’t know was there, I found a man by my side I’d someday call my husband, and I found a drive to make my mother’s life’s work, her self-proclaimed greatest achievement, her daughter, a woman she’d be proud of.  Through that experience I learned that my personal and professional successes – what some might view as solely selfish pursuits – are things far beyond myself.  Less than three weeks removed from Mother’s Day, here I am embracing the greatest gift she gave to me.  The knowledge that, through living a life she’d be proud of, I’m making a difference.  My path on this long journey of infertility is a similar one.  I make a difference by living my life, raising my voice, and walking alongside countless  others.  Actions rooted in self-preservation walk on their own legs and leave their own legacies.  I join the movement by living it – and, that’s alright.

For more information about infertility and National Infertility Awareness Week, please see the following helpful links from RESOLVE:

Infertility 101

About National Infertility Awareness Week

Oh humankind…

Just a quick aside while I let the brain rest up a little.

I hope to finish my Bloggers Unite contribution later tonight or tomorrow, and it’s finally National Infertility Awareness Week!  I should be all happy and hopeful right now, but I’m unfortunately feeling a little flat.  I’m anxious for tomorrow’s long-awaited visit with the rheumatologist, I’m overwhelmed by work and professional responsibilities, I’m stressed about traveling to a work conference later this weekend, and I’m just feeling off.  And, a little angry at the world.

Last week I poured my heart and soul into my Hashimoto’s post.  It may have read more like a textbook than a blog post, but the knowledge put to paper there largely represents the work of my life over these past few years.  I find myself having trouble going back and reading through it because I’m so hyper-aware of all the nuance I missed, all the other bits of advice I have to offer, and all the stories I left untold.  But, I’m still proud of it.  It’s just the first verse of what I hope will become a much longer song afterall.

But, I wonder sometimes.  I really do.  I know this is my current frenzied mind talking, but it saddens me to realize that the reason so many of us with chronic illnesses are so easily fobbed off is because so few care about their health.  For the first time since mounting this blog I had a large number of readers directed to me this weekend by Google searches.  All but one of those searches led folks to my Hashi’s post.  I actually wept when I read the terms that led people to me…

If I take more Synthroid will I lose more weight?

methamphetamines autoimmune disease

and, my personal favorite,

if i go highter on my sythriod dose will i loss weight

I weep for the world…

Hashimoto’s manifesto

Several years ago I had hoped that my days would be filled with learning all I could about pregnancy and motherhood.  I’m most comfortable attacking the unknown when I have read, compiled notes, and analyzed things from multiple perspectives.  I can cram knowledge into my noggin with the best of them, so I suspected I’d do the same come time I was a mother.

Over the course of the past several years, however, I’ve had little need for the type of study I thought I would.  Instead, I’ve been engaged in pursuing an even more rigorous course of study that I’ve come to jokingly call my MTD – my Masters in Thyroid Disease.  I’ve wanted to write this post for a while, wanted to get all those helpful things I’ve learned along the way down onto paper so I can point friends and family and total Internet strangers to this page rather than retyping the same advice I’ve already typed a thousand times over, but it’s so bloody overwhelming.  While I had hoped to be Queen Motherhood by now, I’m still in a lesser court.  I’m the Princess of Hashimoto’s.  And, even pompously pronouncing princess with a stress on the “ESS,” still doesn’t make that title nearly as nifty as Queen Mum.  But, I shall use my powers for good.  And today is the day I’m making that happen.

Today is as good a day as any, because 1. we definitely need a distraction, and 2. there’s a bit of shit-storm happening in the thyroid community right now (more below).  So, in 5 parts, I give you my Hashi’s manifesto.

1. Diagnosis

Do not trust doctors, do not trust laboratories, do not ignore your symptoms.  I’ve covered in my greater detail elsewhere my own horrid path to a Hashi’s diagnosis, but suffice it to say here that a hard battle is the norm.  Most patients struggle with symptoms for years before obtaining an accurate diagnosis, and, even after diagnosis, find that their symptoms don’t abate as much as they had hoped.  I could offer my own thoughts on why this is the case – why this autoimmune condition so much more predominant in women (10 to 1) and so likely to lead to weight gain and depression is totally misunderstood and misdiagnosed by medical generalists – but those are the discussions of a healthy person.  When you feel as if your life is crashing down upon you, you can’t get out of bed, you are covered in bruises, you feel no joy in life, you are putting on weight at an alarming weight, you forget how to perform simple daily tasks, you don’t remember what it is like to feel warm or have skin that isn’t flaking off, and the finality of death sounds better than the pain and suffering of the hear and now?  That’s time to act, not react.  Do your homework, check out the links I’ve collected here, take a deep breath, and prepare for battle.

2. Thyroid Labs

Never accept “you’re normal.”  In my opinion, the number one issue in the diagnosis and treatment in thyroid disease in this country stems from lab companies.  Since 2003, the American Association of Clinical Endocrinologists has recommended a normal TSH reference range for adults of 0.3 to 3.0, yet every lab I have interacted with in the past 3 years has employed a much broader reference range.  In 2009 Quest Diagnostics used 0.4 – 4.5, as of this year LabCorp’s range is 0.45 – 4.5, and even my current endocrinologist’s in-house lab uses a range of 0.27 – 4.20.

Does a point and a half make that much of a difference?  My answer is a resounding yes.  I first went to my old GP in 2009 complaining of extreme fatigue, muscle pain, memory loss, absent periods, and depression.  She sent me away with a referral to a psychiatrist, but did agree to run a TSH.  When her receptionist called the next day to tell me the test was “normal,” I sunk even further.  When, less than two years later, my desire to become pregnant started to refuel my drive for answers, I requested a paper copy of my 2009 labs.  At that time, my TSH was 3.94.  I was having crippling symptoms at 3.94.  When I finally got a retest in early 2011, my TSH was 55.38.  That small elevation in my TSH in 2009 merited further investigation, but in this world where PCPs are expected to spend, at most, 12 minutes with each patient, my doctor had never even looked at the value.  She later admitted to me, “If it isn’t highlighted [meaning the lab flagged it as falling outside their normal ref range], I don’t look at the value.”  Since getting in with an endocrinologist, I have had affirmed, confirmed, and reaffirmed to me that patients with Hashimoto’s do best in the 1.0 to 2.0 range and that TSH tests are woefully bad predictors of one’s overall health.  Always get complete copies of all your lab results and do your own homework.

Don’t rely on the TSH.  The TSH test is the standard-bearer in the generalist’s approach to thyroid disease, however, TSH isn’t even a thyroid hormone.  Thyroid stimulating hormone is produced by the pituitary in response to a perceived need for increased levels of the thyroid hormones themselves, most notably thyroxine (T4) and triiodothyronine (T3).  This is what leads to the confusing fact that when one’s TSH is abnormally high, that means their body has too little thyroid hormone (or, they are hypothyroid), yet when the TSH is too low that means one is producing too much thyroid hormone (or, they are hyperthyroid).  So, the most common test used to diagnose and dictate treatment for thyroid hormone insufficiency or surplus is a test that has only a feedback relationship with the thyroid itself.  Why?  Because the test is cheap, it’s been around a long time, and the medical establishment is very slow to change.

TSH can also be subject to more rapid change, than can the thyroid hormones themselves.  External factors like the time of the day, a patient’s stress level, the time of the year, and food intake can radically alter the TSH.  Swings of as much as 3 units over the course of the day occur in normal, healthy patients.  In most people, the TSH is highest around 2AM and lowest around 2PM (the pituitary does much of it’s work while we sleep).  So, my 3.94 labs in 2009 that were taken at 2PM?  Pretty piss-poor window into my thyroid function.

And, don’t be placated with a Total T4 and Total T3 either.  Let’s take a big step back.  The thyroid is responsible for controlling the body’s metabolic system.  It largely accomplishes this by secreting thyroid hormones (the most prevalent and powerful of which are T4 and T3).  T4 is the most commonly found thyroid hormone in our systems and is the precursor hormone to the other thyroid hormones.  What separates T4 and T3 chemically is 1 iodine atom; T4 has 4 iodine atoms, T3 has, well, you get it, 3.  While T4 is about 20 times more prevalent in our bodies than is T3, the T3 is the real workhorse in the equation.  If T4 is a cold cup of coffee, T3 is the straightest, purest Meth you can get your hands on.  When TSH is increased, the thyroid produces both T4 and T3, but at vastly different quantities.  In most healthy people, the balance of the thyroid hormones produced directly by the thyroid is about 80% T4 and 20% T3.  So, where does the rest of that Meth we need come from?  By the prohormone T4 dropping one iodine atom and becoming T3.  About 85% of all T3 is produced by this conversion of T4 to T3.  So, all we need to know is whether or not we have enough T4 and T3, right?

Nope, there’s more!  Not all T4 (or T3 for that matter) is available for use by our bodies to do such minor little jobs as, oh, keeping our body running, our cells synthesizing new proteins, our vital organs functioning.  Actually, the majority of T4 (and T3 to a lesser degree) are just hanging out in their parents’ basements unwilling to go out and get a job.  These “bound” T4 molecules ride around on proteins (most predominantly that sexy bitch thyroxine-binding globulin) and, as a result, can’t be used by our metabolic system.  Only free, unbound T4 and T3 are in play, yet doctors continue to test and treat based on the total amount of T4 and T3 in our systems.  If you request lab work, and you don’t see a “free” next to your T4 and T3 numbers, run to the next doctor on your list.

In range is different than optimal.  As with the TSH, there’s a big difference between being in the lab’s normal reference range and having optimal Free T4 and Free T3 values.  For patients with a history of hypothyroidism, it’s best for the Free Ts to stay in the upper quartile of your lab’s unique range.  Check out this T4/T3 range calculator.  If your results aren’t at least above 50% for both values, you are likely dealing with a thyroid hormone deficiency.

3. Autoimmune Disease

Yes, it makes a difference.  When I finally secured my diagnosis, I was given a (way, way, WAY to high) prescription for generic levothyroxine and sent on my way.  I asked why my body had essentially stopped producing thyroid hormone, and was told the why didn’t matter as long as I took my pills.  That wasn’t enough for me, so I pushed.  I’m glad I did, because it most certainly does make a difference (especially, it turns out, if you are trying to become pregnant).

It is believed that about 80% of all hypothyroid patients are hypothyroid because of an autoimmune attack on their thyroid – an autoimmune disorder known as Hashimoto’s.  (Honestly, me and my educated self think this figure is MUCH MUCH higher, but so few people get proper testing, their cases go unreported.)  While the symptoms and clinical presentation of Hashi’s and hypo are generally the same, what distinguishes the two is the cause.  Hashi’s can really only be 100% proven by a needle biopsy of the thyroid, which is pointlessly invasive if there are no cancerous or abnormal growths suspected, but doctor’s are able to assume a diagnosis based on the results of two antibody tests.  Anyone that has or suspects they have thyroid disease should have these tests, though 90% of the thyroid patients I know (including myself) have had to walk into a doctor’s office and ask for these tests point blank.

It’s like a light switch.  The two antibody tests for hypothyroid patients are the thyroid peroxidase antibody (TPO) and thyroglobulin antibody (TGAb).  Much to the surprise of my GP (eye roll) BOTH must be tested when investigating an autoimmune cause for hypothyroidism because a diagnosis of Hashi’s can be made if either is elevated.  And, unlike the scrutiny we put on the numeric values of TSH and Free T results, these antibody tests are like a light switch.  If the result of either test is elevated, you have Hashi’s.  Plain and simple.  The number doesn’t matter.  And, drawing on the analogy, this is a light switch that, once on, can never be turned off.  Even if subsequent testing reveals antibody levels back within normal ranges, you still have Hashi’s.

The rollercoaster, the bedfellows, the silent cases.  So, why does it matter for the hypo gal or guy to know whether or not they have Hashi’s as opposed to non-specific hypothyroidism?  Three primary reasons:

  1. Hashimoto’s essentially means your body’s immune system has decided your thyroid is a tasty little butterfly shaped treat that is ripe for the picking.  Sometimes the immune system is hungry, sometimes it isn’t.  Sometimes your thyroid is able to fight back, other times it can’t.  And, for some, sometimes the gorge-fest may ultimately result in very little of the thyroid being spared.  The result is that patients can swing uncontrollably hypo to hyper to euthryoid to hypo again as the disease progresses, despite constant blood work monitoring, appointments with specialists, and religious prescription taking.  In my first three months of treatment my TSH ranged from 0.0089 to 55.38.  I hate rollercoasters, and the Hashi’s rollercoaster is the worst of all.
  2. When a person has one autoimmune disorder, they are statistically more likely to develop another.  Now, there’s no guarantee, of course.  The odds are still in your favor that Hashi’s will be your only complaint, but call me crazy for wanting to have documented in all my medical charts that I may be prone to develop additional disorders.  (And, in fact, I did.  When my fingers started turning blue in response to stress about 10 months after my Hashi’s diagnosis it was quite easy for my endocrinologist to jump to a Raynaud’s diagnosis given my Hashi’s status.)  The other point to raise here is that, while the jury is still out on why some people develop autoimmune diseases while others don’t, there is ample evidence to demonstrate that these types of diseases do run in families.  By getting a Hashi’s diagnosis you are doing a service to your current and future family members by letting them know that they just might be more likely to fall on the bad side of these odds.  Again, there are no guarantees, but knowledge is still power.  Remember, though, that the increased risk of autoimmune disease isn’t disease specific.  Just because you have Hashi’s doesn’t mean family members will only get Hashi’s.  The wide world of all autoimmune diseases are in play.  Conversely, if you suspect Hashi’s and know, for example, your grandfather had Type 1 diabetes and your mother has Sjogren’s?  Yea, your hypo is probably caused by Hashi’s.
  3. Finally, it is totally possible to have Hashimoto’s, to have the autoimmune attack on your thyroid, but still have no symptoms, no irregular lab work, and no decrease in thyroid hormone production.  Some folks just have rockstar thyroids that are able to keep chugging along and maintaining euthyroid levels even while the immune system is pigging out on their right lobe.  But, what if the thyroid suddenly buckles under the weight?  Then you are in for a hard fall.  It’s rare to find a doctor willing to treat euthyroid patients with thyroid antibodies (heck, it’s hard to get a diagnosis of elevated antibodies when you aren’t hypothyroid) but I still feel it is worth knowing.  Even more so, as I will discuss below, when you are trying to become pregnant, experiencing infertility, or have suffered repeat miscarriages.

Even the Synthroid-lackeys got this right.  At the end of last year, a joint commission of the American Thyroid Association and the American Association of Clinical Endocrinologists issued the “Clinical Practice Guidelines for Hypothyroidism in Adults”  (link out to PDF).  Those guidelines have been heavily criticized by some in the thyroid community, not the least of which because so many of its authors receive tons of financial support from the manufacturer of the popular T4 drug Synthroid.  But, despite the controversy, one huge positive remains. The Guideline’s present a clear and convincing argument for the diagnosis and treatment of thyroid disease in women with infertility and repeat pregnancy loss.  I can’t encourage you enough to read through the entire document (and give a copy to all your doctors), but couldn’t complete this section on Hashi’s without making note of recommendation 19.2 which reads, “Treatment with L-thyroxine should be considered in women of childbearing age with normal serum TSH levels when they are pregnant or planning a pregnancy, including assisted reproduction in the immediate future, if they have or have had positive levels of serum TPOAb, particularly when there is a history of miscarriage or past history of hypothyroidism.”  So, yes, even in euthyroid patients, the link between the presence of TPO antibodies and miscarriage risk is high enough to warrant this conservative panel to recommend thyroid hormone replacement treatment for this class of women.  With a history of both elevated TPOs and 3 miscarriages (the last one an unexplained 9 wk loss after multiple strong heartbeats) I can tell you now that this is a positive and groundbreaking recommendation.

4. Comorbidities

Yes, I want more testing.  Even after my thryoid was finally regulated, I still felt like crap.  It was another 9 months before my endocrinologist ran a battery of very simple blood tests to ferret out the answers.  If you are diagnosed with thyroid disease, be aware that though returning the level of Free T4 and Free T3 to optimal ranges can alleviate a lot of symptoms, there are still other items that may not be corrected.  High on this list are hormone/vitamin absorption issues like vitamin D, vitamin B12, and iron.  When my vitamin D was finally tested in November 2011, it was barely detectable, and, though my B12 was in range it was at the very, very bottom of that range.  And, be aware, that vitamin D is another example of where there’s a wide gap between a lab’s normal reference range and “optimal.”  My lab considered anything above 26 normal, but my endocrinologist said she’s not happy unless she sees a value of at least 50.  After 6 months of over-the-counter vitamin D3 and B12 (always go sublingual for the B12), I felt like a new woman.  It’s crazy what an extreme difference such simple treatment can make.

And then there’s PCOS.  What came first the chicken or the egg?  The Hashi’s or the PCOS?  Seems like the answer to that question is still elusive, but the link between these two conditions is not to be ignored.  Recent research has suggested that years of untreated insulin resistance (a well-known effect of PCOS in many) may actually contribute to the development of Hashimoto’s.  Conversely, a 2011 study concluded that, “In this case-control study, anti-thyroid antibodies and goiter prevalence were significantly higher in PCOS patients. These data suggest that thyroid exam and evaluation of thyroid function and autoimmunity should be considered in such patients.”  So, long story short, why have one weight-increasing, brain-function decreasing, infertility-causing, hormone-screwing, doctor-misunderstanding conditions, when you could have TWO!?

5. Treatment and Meds

Pill a day and “follow the script” my ass!  As I noted above, there is a bit of a shit-storm brewing right now in the thyroid community.  It centers around the recent announcement by actress Sofia Vergara of her battle with thyroid cancer and the hypothyroidism that resulted from the surgical removal of her thyroid when she was 28.  It’s been interesting to watch this story as it developed, but from the beginning I thought we were in for it, and I’ve sadly been proven right.  Initially, I stumbled on to the announcement through the praise it was receiving.  It is never a bad thing when a famous face lends their name to a misunderstood condition.  But, upon reading several articles in which the bombshell actress discussed her condition, I immediately cringed at her remarks.  First, she paints the same rosy picture so many of my doctors did.  If I simply take a pill a day, all my pains will go away.  It was not that way for me, and it most certainly wasn’t that way for countless friends and family.  It has been nearly 2.5 years since my Hashi’s diagnosis, and I’m still in a daily battle with the condition. See my post from just earlier this week to read of my current battle with crippling fatigue, all-over body aches, and endless questions.  I’m thrilled treatment was quick and easy for Vergara, I just wish it was so for the rest of us.

Secondly, nearly each interview I read spent an inordinate amount of time focusing on Vergara’s complaint that she doesn’t get to eat for a half an hour after her Synthroid.  The HuffPost article linked to above quotes her as saying, “Usually I’m a morning person, so I want to have breakfast and immediately eat and everything, so for me this is torture!”  Really, torture?  Not being able to eat breakfast straight away is your biggest hypo problem?  Again, I wish we had it all so easy.  And, even more so, I wish she was actually remotely informed about good thyroid meds-taking practice.  Honey, you shouldn’t be eating until at least an HOUR after your medication, and even at that you should be avoiding iron and calcium for even longer.  Oh, and always take your pill with a full glass of water.

The day after her story hit the airwaves, it’s like a switch flipped in the thyroid community as global awareness kicked in that she was sharing her personal story as act 1 in her new relationship with the drug manufacturer of Synthroid, the world’s leading brand-name T4 medication.  Furthermore, the condescending title of the campaign she is now spokeswoman for?  “Follow the Script!”  Suddenly, her remarks in countless interviews made sense.  Hired to support the narrow view that thyroid disease is always easily fixed and, in the rare case when it’s not, it is the fault of the patient for not “following the [per]script[ion]” their doctor gave them, Vergara’s bemoaning her bagel-in-bed takes on a new infuriating light.  I don’t blame the actress – she’s an actress not a doctor – but I do blame the deeper systemic problems that lead to this situation in the first place.  Though it may not sound like it after all I wrote, I can tell you that there are good doctors out there, and that there most certainly are wonderful advocates and role models for those of us in the thyroid community to look up to.  Hell, if it needs to be an actress I nominate Gina Lee Nolin.  But, unfortunately, I hold out little hope that change will come.  “This is a complicated, largely misunderstood, and difficult to study disease that needs to be treated with an individualized focus and ample amounts of patience and patient involvement,” just doesn’t make that great of a marketing campaign.

Am I a traitor?  Here’s the squicky thing, though.  Now I feel complicit in all this “Follow the Script” madness because I’m actually a fairly happy Synthroid customer.  Though my amazing first endocrinologist came highly recommended due to her open-mindedness and willingness to dig deeper and prescribe many alternative thyroid medications (including both natural dessicated thyroid products like Armour and adding in T3 meds like Cytomel), we found together through a few months of trial-and-error that, at least for the time being, T4-only meds like Synthroid work pretty damn well for me.  It’s only with my latest round of labs that I’m starting to get concerned that Synthroid alone isn’t getting the job done anymore because, while my TSH and Free T4 were beautiful, suddenly my T3 is in the 30th percentile.  That, combined with my new symptoms, has me a little worried I’m in for a battle with my new endo (endo #3) if the trend continues with my next set of bloodwork.

And, not only am I happy Synthroid user, I’ve recommended it to many folks.  I always start my speeches with a, “be aware there are other options beyond Synthroid that your doctor might not tell you about,” but generally conclude with a, “try Synthroid – and only brand-name Synthroid – first, and go from there.”  See, the reason I recommend Synthroid is because I fought with my failing body for 3 months to try and regulate my thyroid hormones on generic levothyroxine, and those were quite easily the worst months of my life (honestly, even up there with the death of my mother).  The problem with generic drugs has nothing to do with the drug itself (yes, in generics, the active ingredients are always the same and that’s what usually makes a generic just as good as a brand), but instead has to do with the fact that when generic substitutions are allowed according to your prescription, that means you can get any one of a number of different generic makes each and every time you fill your prescription.  And, when you get a new script, though the active ingredients remain the same, the inactive fillers and dyes change.  These afterthought ingredients can have a HUGE impact on the way your body absorbs those all-so-important active ingredients.  So, if you are anything like me, you are left starting from scratch each and every month as your prescription comes up for renewal.  From the moment I was with an endocrinologist who allowed no substitutions for my Synthroid, my thryoid has remained regulated.  We’ve had to carefully monitor and change doses in response to new medications (especially birth control), pregnancy, and the natural progression of my disease, but once the sweet spot dose was found, I was inherently more stable on Synthroid than I ever was on generic levothyroxine.  So much more stable, that is, that I’ve learned not to balk at the ENORMOUS price difference that separates generic levo ($8 for 3 months on my insurance) and brand-name Synthroid ($70 for three months).  Though I still hate the insurance system that views all thyroid medication as equal, I’m more than happy to lay out an extra $240 a year in order to have my life back.

So, in conclusion… Taking thyroid replacement medications requires much more than mindless popping a pill a day (and the horror of having to wait to eat!).

  • DO take your medication on an empty stomach at least 1 hour before any food or drink beside water and at least 4 hours before any vitamins (especially those high in calcium and iron).
  • DO take Synthroid with a full glass of water.
  • DO take your Synthroid at approximately the same time of day every day.  (My alarm is set at 6AM every day of the week so that I can take my pill and go back to sleep for a bit on weekdays and take my pill and (hopefully) go back to sleep for a lot longer on the weekends!)
  • DO have regularly blood work monitoring (at least every 3 months in the beginning and only dropping to every 6 months when you have been nicely stable for a while).  Also go in for blood work when there have been changes to your diet, weight, or you have added new prescriptions.  Thyroid replacement medications take a full 6-8 weeks to be fully absorbed by your body (the half life of T4 is about 5-7 days and then, as discussed above, it takes even longer for much of that T4 to break down to T3).  Though we all want answers and improvement NOW, you can trust your doctor when they say there is no benefit to testing earlier than 6 weeks before any dose change.
  • DO be aware that certain prescriptions (especially estrogenic ones like many birth control pills) and goitrogenic foods (especially soy) may change the effectiveness of your current dose.  Each time I have gone back on birth control, my need for thyroid meds has gone up.  Similarly, early one when I didn’t know better I went on a soy binge while visiting a vegetarian friend.  When my regular test time rolled around a few weeks later my TSH had spiked in response.  Also iodine can be nasty for Hashi’s folks (though perhaps not for general hypo types) so watch out there too.

And, because I know we all have to live our lives, if the above are totally undoable for you, just know that these behaviors, should you do them, will more than likely result in you absorbing less than the full dose of Synthroid you are prescribed.  If you engage in a “bad” behavior, but you do so consistently, you’ll survive.  It just means that your bad behavior will be reflected in your lab results and you will more than likely wind up on a higher dose of medication than you might otherwise need.  Consistency is more important than perfection.

In Conclusion

So, believe it or not, I still have a few points in my notes that I’ve yet to cover, but we’ve hit the high points here and I want to get this out there before the weekend is fully upon us.  Mainly, I want this damn thing out of my queue seeing as I’ve been working on it in my mind and on paper for about a month now.  If you have questions about things I’ve missed or mispoken, or if you want to contribute more, I invite you to do so in the comments or by contacting me.  And, as always, take the above with a grain of salt and the knowledge I’m not a trained M.D.  (Though, that should be obvious, because had I been a trained M.D. I probably would have told you to take your pills and get out of my office!)

Happy weekend all!

Why we need advocates and Advocacy Day

May 8 is Advocacy Day in the infertility community.  This is the day (because, we clearly only merit one day… I digress) where women and men inflicted with or impacted by infertility get to travel to Washington, D.C. and have their stories heard.  In RESOLVE’s words,

Advocacy Day is a RESOLVE event where women and men living with infertility come together in Washington, D.C. to talk to Members of Congress about issues important to our community. RESOLVE holds this annual event so you have chance to make your voice heard. We will make your appointments for you and provide you with the training and information you need for this day of empowerment. Advocacy Day is a great opportunity to meet RESOLVE leaders and others from the infertility community who want to make a difference.

I want to make a difference, and I very badly want to go to Advocacy Day this year.  However, I also work at a college where early May is one of the most demanding of times of the year.  Combine this with a Wednesday event, a 7 hour drive-time to D.C., and the number of hours I’ve already missed this year for doctors’ appointments, and, unfortunately, it’s a non-starter for me.  I hold out hope the timing will be different next year, but at least I will be able to make it down to D.C. in June for the Walk of Hope.  (And, I know I’m becoming a broken record about this, but it was such an uplifting day last year!  If anyone is interested in donating to our team, btw, please use my contact form and I’ll shoot you a link to our public fundraising page.)

As a peer-led support group leader of a RESOLVE support group hosted in my old home state, however, I’m saddened to learn that even in that albeit small state that is a short drive or public transit trip away from D.C., no one has yet signed up to participate in this powerful and so very important event.  I understand the reasons of course (see the long list of my own above!), but reflecting on those reasons makes me worry, while also making me thankful that we have a group like RESOLVE that can keep this train on the tracks.  If you’ve learned anything from this blog, I hope it is that infertility is not kind to the soul, the social life, the schedule, or the bank account.  Relying on a bunch of emotionally run-down, lonely, sick-day poor, and cash-strapped women and men from across the country to travel to D.C. mid-week for a few brief moments with some Congressmen seems a hard way to effect change.  But, if there’s another thing infertility teaches us, it’s that often the hard battles are still worth fighting.  I’m so thankful that RESOLVE is leading this battle.  Come May 8 I will rest all my hopes and dreams (and angst) in the fully capable hands of those brave infertility sisters and brothers who have traveled and spoken for those of us who couldn’t.  Please know, for each one of you that walks through that door, down that hallway, and into a meeting with staffers and representatives, that there are hundreds of us standing beside you.

Last year Mr. But IF and I almost signed on for Advocacy Day, but we were so newly open about our struggles we didn’t know if we were up to the challenge.  We had never publicly spoken at length about our struggles, I had just founded the support group, and we were only in the early days of opening up to friends, relatives, and, ultimately, random strangers.  Looking back now I wish we had participated, but I won’t blame us for our hesitancy.  I understand and respect that hesitancy as part of the road that we had to travel to get to where we are today.  What I most regret is that we missed out on an opportunity to stand united with the powerful women and men that form this strong community, to experience the electricity that flows through one’s body when you know you are doing something important, and to, in essence, do something in this path to building our family that has so largely been comprised of endless, hopeless waiting.

Though I may not have taken the train to D.C. last year, I did write my three Congressmen, with incredibly mixed results.  And, I’ve decided, what is the point of having a blog if you can’t do a little politician shaming (and praising) every now and again.

U.S. Senator Chris Coons totally failed to respond to my letter.  His was the response I’m most used to getting, of course.  That awkward “look away quickly, she might be contagious or get hysterical” knee-jerk I’ve experienced first hand so many times.

U.S. Senator Tom Carper sent an entirely appropriate, if stilted reply.  A fine example of a legislative aide doing his homework and writing a thoroughly adequate constituent response letter.  The statistics employed were cribbed directly from RESOLVE, the review of existing and proposed legislation the letter offered was on point, and I was informed that, “Should my colleagues and I on the Finance Committee have a chance to consider the legislation, I will be sure to keep your views in mind.”  Well done, Mr. Carper.

Finally, U.S. Representative John Carney totally missed the point.  His response is the one that continues to add fuel to my fire.  Carper acknowledged my support of the Family Act of 2011 and the Adoption Tax Credit, Coons utterly ignored me, but Carney?  Well, he (his aide) sent along the most point-missing paean to the importance of family planning, access to contraception, and women’s health I’ve ever read.  Of course, because this is the way my luck works, my Gmail ate his reply, but, trust me, it was full of some gems I’d love to quote for you right now.1 Carney wrote (in part):

Let me begin by saying that family planning is a deeply personal and private matter, and I understand that Americans are sharply divided on issues from sex education to abortion. In my role as a Congressman, I am committed to helping ensure all Delawareans have affordable access to family planning information and preventative healthcare services. With proper access to such resources, we can prevent disease, death, unintended pregnancy, and pregnancy complications.

It took everything in my power not to reply to him (his aide) that birth control wasn’t my problem, you see, my body does that naturally.  Had I known I’d be moving out of his state (and to a fertility mandate state) in a few short months I probably would have let it rip.

So, when only 1 out of 3 elected representatives are actually taking a moment to have their staff prepare form responses to calls for infertility and adoption friendly legislation, clearly there is a need for increased visibility and advocacy on the part of this community.  Stand strong on May 8, everyone.

Post edited 5/8/2013: Gmail un-ate my email from Representative Carney so I’m finally able to quote it here!

1 Have any of you ever had this happen?  I still have the email in my Gmail archives, and when viewing it in a list I can see the text teaser for a much longer email, but when I click to load the email all I get is a blank page.  What the wha?  If it does ever reappear I’ll add to this post.

Mental gymnastics

Wednesday.  Bullet day.  Lazy blog day.  Happy Wednesday!

For this week’s list, I thought I’d “out” some of my stranger mental associations.  You know, all those random things that lead Mr. But IF to ask (silently if he’s smart about it!), “Wait, how’d we get there from here?”  Without further ado…

  • “I miss my pain in the ass.  F this door!”
    • During my last failed pregnancy, we tried to save it by switching from yummy vaginal Crinone suppositories, to a combo of Crinone and progesterone-in-oil (PIO) injections.  Think a needle the size of the one in my header picture straight to the ass check every day for 7 weeks, and you’ve pretty much got it covered.  I tolerated the injections just fine (I am super woman afterall), and I actually worry Mr. But IF kinda liked giving them to me (but that’ll have to wait for another post, preferably one I drunk type), but, even still, day after day of 22 gauge needle to the behind leads to some soreness.  Combine that ache with a job that finds me opening heavy, locked doors, hands-full, and needing to allow said doors to slam on my bottom lest be locked out, and I get, at very least, 4 or 5 physical reminders of my non-pregnant state every day.  There’s one particular door that does it to me every time.  I grimace as it starts to swing shut behind me, preparing for the inevitable jolt of pain I’ll receive as it makes contact with my bruised derriere, then get immensely sad when no pain results.  Two months since my last PIO injection, and that damn door catches me unaware every time.
  • “Yay, it’s regional conference time… again.”
    • I may be weird, but I actually tend to enjoy my profession’s conferences and annual meetings.  An opportunity to get out of my freezing cold office and into a freezing cold conference center?  Hells yeah!  Mainly, I enjoy networking with others in my field that “get it” and who I only get to see on rare occasions.  Renewed love for one’s calling and all that.  There’s one exception, though.  Due to a certain muscle memory, I despise one particular bi-annual conference.  It was at the spring 2010 meeting of said conference that Mr. But IF and I had our first session of “We’re gonna make a baby!” sex.  (In our hotel room, you pervs, not on stage mid-session.)  That damn conference is coming up yet again next week, and aside from the IF reminder it offers, I’m doubly cranktastic because it’s gonna put a huge damper on my National Infertility Awareness Week festivities.  The panel I’m chairing better not suck, I tell you!
  • “Why, hello herbal tea bag.  Screw you!”
    • During my last pregnancy, I was a good little girl and switched from my mega-cup of coffee to quaint little herbal teas.  (With an office typically in the low 60s, I need something warm in me in the mornings.  Oh, and get your mind out of the gutter Mr. But IF!)  The first thing I did after the heart beat stopped was ask Mr. But IF to stop in at the local coffee joint on the way home from our ultrasound appointment.  I had the largest, most amazing cup of java that day, and I haven’t looked back.  (I’ll go back on the wagon as soon as I know we’ll be cycling again.)  Still, one lonely little blueberry tea bag sits in the top drawer of my office desk.  Each and every time I see it I say a few choice words.  Yea, I could move the bag, but what am I if I’m not a masochist?
  • “Hooray, more lead paint chips!  So glad we’re too mentally messed up to adopt!”
    • When we moved this summer we bought a grand old lady of a house over twice the size of our former modest mid-century Cape Cod.  But, as with most old ladies, this house has some pretty rocking stories to tell and an age-old sense of style, but she’s a little worse for the wear.  Long story short, we live in a residence better defined as ruin than retro.  We know she needs work, and we’re anxious to do it.  Honestly, aside from the pristine location and bargain basement price tag, I think the neediness of this old house was part of the charm.  We may not leave children to this world, but we’ll be damned if we don’t serve as amazing stewards to this house!  As we enter our 9th month in the house we’ve yet to have the time, money, or opportunity to do much work.  The big projects need the long days, open windows, and contractors one can only obtain in the summer.  That doesn’t stop me, however, from linking our house’s current state of ill-repair to our reproductive challenges.  Each time I hop out of our claw-foot tub (sounds quaint, eh?  not really), I spy more peeling lead paint chips on the bathroom floor.  And, of course, they instantly remind me how horridly our house would do if we ever opened it up for a home study for either traditional or (in many cases) embryo adoption.  Commence the inevitable slippery slope of angry emotions that begin when I’m reminded of the great differences that separate the act of becoming pregnant (something any drug-addicted teenager can do) and opening your heart and home to the extraordinarily invasive adoption process.  But, peel away lead paint.  The kitties love how you taste!

I’m sure there’s more I’m missing, but this get’s the job done (unlike my busted uterus).

Character outage

Feeling a little stumped for a post today, but still trying to chug along and keep my promise to myself of a post a day.  It’s not usual I have nothing to say (as you might have figured already!), but I guess everyone has their out of character moments.

And, oddly enough, that supposition actually leads pretty directly to the topic I ultimately decided to discuss here.  Though I’m loving this blog, this much needed outlet, it still feels a little odd and out of character for me.  First, after years of speaking derisively of narcissistic “bloggers,” here I find myself.  In my teen years I tried to coax myself out of my inherent shyness by essentially mantra-izing Andre Dubus’ quote equating shyness and narcissism.  “Shyness has a strange element of narcissism,” he proclaims.  “[A] belief that how we look, how we perform, is truly important to other people.”  In essence I’ve tried to draw upon my distaste for narcissism to coax myself out of introspection with mixed results over the years.  Ultimately, the act of blogging is something I never saw in my future, but something I now find myself relishing.

Similarly, after years of suppressing the drive to write creatively so that I could get on with my work as a SeriousAcademic™, I find myself getting out from behind my footnotes and embracing the comma splice, the run-on sentence, terminal prepositions, and, well, sentences starting with “and.”  I flirted with writing fiction in high school, and even dreamt of being a famous authoress when much younger, but by college that passion had faded.  My anal-retentiveness, dry wit, and aggressive, no holds barred writing style were a match made in heaven with academic prose.  In appropriating academic-ese as my modus operandi, however, I let that creative side stagnate for a while.  It’s been fun, if entirely out of character, to try and retrain my brain to reenter a written world where creativity isn’t measured by the pedigree and prominence of the authors represented in your footnotes.

Finally, this endeavor is out of character for its anonymity.  In “real life” Mr. But IF and I are exceedingly open about our struggles with infertility and repeat pregnancy loss.  But, for a whole host of reasons that likely need not be explained, we’ve opted to remain anonymous here.  As a young professional in an extremely competitive field, I worry about connecting these words to my identity on the open Web.  And, that worry itself, feels unfamiliar, as much of my professional identity is hinged on the academy’s respect for academic freedom.  Yet, I’ve witnessed first-hand the many ugly underbellies of academia.  In graduate school, a peer – a young woman in the second year of her dissertation writing in a stable marriage to a hard-working, income, and insurance-earning husband – became pregnant.  When her (and my) female advisor heard the news, she replied by, first, handing her forms to withdraw from the program, and, second, (sarcastically) congratulating her on choosing family over career.  I wish this was a one-off exception, but it’s closer to the norm than most might like to admit.  There are huge differences across disciplines, across institutions, and among colleagues, but it only takes a few cocktails at a faculty happy hour to get the stories rolling.  While it’s often not accomplished so bluntly, young women in academia are frequently reminded this is an either/or game.  Endless adjuncting/post-docs/visiting professorships, uncertain employment and un-benefitted positions, the battle for tenure, and publish or perish aren’t good bedfellows with a newborn.  So, here I am, leader of a support group, outspoken advocate, proud infertile, lurking uncomfortably behind a pseudonym.

So, for now, this creativity starved, anonymous, anti-blogger will listen to the rain hit her roof, with heating pad on back and kitty at feet, gazing appreciatively at flowers sent yesterday by a dear friend, and type away.

What did I do to deserve friends like these?  Thanks, A!

What did I do to deserve friends like these? Thanks, A!

Pain, pillars, ponder

I started this post this morning, but you won’t see that first draft.  It’s not relevant anymore.

For the past several days I’ve been brooding.  The pain that started flaring last month, the pain that led to my ANA test and subsequent referral to a rheumatologist, has started to hang around more often than I’d like.  It’s scaring me.  It’s hurting me.  And, it’s making me downright miserable to be around (sorry Mr. But IF!).  All-in-all I’ve spent the past week waffling between feeling sorry for myself, and being embarrassed of myself.  And, the sheer familiarity of those competing emotions, the fact that they send my mind straight back to the days before my Hashi’s diagnosis, frightens me more than words can say.  I don’t want to be someone living with chronic illnesses, always either waiting for the other shoe to drop or wondering if my pain is, in fact, as bad as I think it is.  But, when laying down to sleep evokes the fear of how badly you’ll ache when you wake, when the morning alarm is accompanied with an immediate sense of distress more often than it’s not, and when thoughts of the pain you feel occupy more and more of your time, it’s hard not to feel lost and alone.

I’m 29.  I have a painful rash on both hips.  I wake with back pain that brings tears.  I feel completely out of control of my emotions.  I spend large portions of my days on the phone with doctors, pharmacies, and insurers.  I’m 29.

When my Hashi’s was diagnosed and finally successfully treated I thought this was all behind me.  I convinced myself the pain had passed and I’d never get back there again.  When my laparoscopy last year relieved the last of my daily symptoms, I knew a new page had been turned.  My thirties were destined to be a time of good health and a time to make up for all that I lost of my twenties.  I spoke bravely about how the lessons I’d learned on this journey would arm me with the power and self-assertiveness I’d need to overcome future hurdles.  But, as the pain returns, I wonder – are those only emotions a healthy person can feel?  Had I developed a sense of amnesia about my painful past?  Did I try to rationalize it all by assigning some inherent worth to my struggles?  I have no idea.  All I do know, is that for the past two days I’ve felt everything but strong, assertive, driven, and empowered.  I’ve felt broken.  As if someone removed my new self from this body and returned to the surface the same scarred, hurting, insecure little girl that was there underneath all along.

This was, by and large, the post I wrote this morning.  Then, the world reminded me of its beauty and its cruelty.

I got a call three hours ago from a local floral shop.  I missed the call, but, upon listening to the message I heard that a delivery had been made to my house in my name.  I won’t get home from work until 10 this evening, so have no idea who they are from or what they are for, but I know they aren’t from Mr. But IF (I asked) and I know it’s not my birthday, my anniversary, my anything.  Someone sent me flowers to bring light to this suddenly dark world.  I can’t begin to express how appropriately timed that action was.  I am not alone.

I finished signing up for the Walk of Hope this weekend, and have already received two donations, and countless well wishes.  I am not alone.

Mr. But IF decided to call our insurer today to continue a battle that’s been waging since October about my consult with a new OB/GYN (like I’ll ever need one of those).  As I selfishly wrote to him, “Some days, I just want to quit the pills, quit the consults, quit the insurance battles, and do what the medical industry wants me to do and shut up, disappear, and die,” he was waging my battles.  I am not alone.

As I checked in with my IF friends on the computer, and told them of my recent hard times, they shouted words of support, encouragement, and, yes, even a few threats to my body and my doctors, from towns across the globe.  I am not alone.

When a college acquaintance, now years in to battling her own chronic and debilitating illnesses, offered me words of wisdom and support despite the vast differences in the severity of our conditions, I was humbled and honored.  And, when another acquaintance, this one formerly of my RESOLVE group, sought my advice on dealing with suspected thyroid disease in her family, I realized that I don’t just take, as it so often feels, but do give back in return.  Thank goodness I am not alone.

As my simple Tweet got “favorited” by thyroid disease royalty, I was overcome with both the geeky excitement of one who gets to shake the hand of an idol and an overwhelming sense of gratefulness that I live in an age when it’s possible for someone like me to be a single virtual step away from someone like her.  I am definitely not alone.

And, as the ESPN app on my phone alerted me to the news in Boston, and as Twitter and Facebook lit up with friends and family searching for, reporting on, and offering support to loved ones and total strangers, I was reminded that pain comes in all flavors.  Prolonged and abbreviated; expected and sudden; understandable and senseless; logical and visceral; deep and trifling.  But where there is pain, there is also often the reminder that we are not alone.

I’ve been in my own head a lot these past two days.  Though I do understand why, the events of the past 12 hours have encouraged me to remember the world outside my pain, my sorrow, my worry, my doubt.  My place in that world is most definitely worth fighting for.