Thursday, March 20, 2014

Yet another one of those posts about sex

Yep, you read that one right. This is going to be one of those posts about sex, or more specifically the frustration caused by lack there of. For those of you who know Grey and me in real life, I apologize for the mental imaginary you're about to experience. But, like so much other stuff in my life, I need to get this one out.

Whenever talking about sex, there are always many points in time one can begin with. One could talk about their relationship with sex from a young age, retelling the embarrassment they experienced having "the talk" with your parents (my mother was ahead of the game and I got all the facts about conception by the time I was 9 yrs old), you could start about talking about your first crush, your first sex-dream, the first time you and your love-interest decided to explore, the role religion played in your decision to either wait until marriage or throw caution to the wind. So many places to start. But one common theme comes out again and again when people decide to talk about sex: most of us have a complex relationship with it. The idea of engaging in an act that basically requires letting go of one's inhibitions in order to truly find enjoyment (hence requires lots of trust and good communication) is deeply in contradiction with societal views (sex is shameful, dirty and is not to be discussed), hang-up with self image and even issues with power (sexual abuse, rape, or even a partner who shames you because you don't fit into their skewed idea of "perfect').

On my end, I've always had hang ups about sex. Growing up as a Catholic, it was very much engrained that sex outside of marriage was a major sin. The idea of "impure thoughts" let alone exploration was always quashed. There were additional levels too, with me viewing myself as an ugly duckling and thinking that I would never find a boyfriend, let alone get married. And there was the fact I was desperate to get out of dodge, with anything standing in my way of spreading my wings, especially an unplanned pregnancy, needing to be deflected if not eliminated all together. Add in one unfortunate incident where I had the pleasure of witnessing my parents in the act (for all parents, PLEASE consider other arrangements for sexy time, as trying to be quiet in a hotel room you're sharing with your teenage children isn't really a great idea), and you've got the makings of an asexual.

So it wasn't until college that I really allowed myself to explore the topic of sex at any level. And even then, my access to resources were limited.

Meeting Grey changed all of that. From the very beginning, he was patient with me as we explored not only my hang-ups (some of which he shared) but also provided a safe environment so we could both explore. Shaming has been the ultimate no-no in our relationship, as it inhibits not only exploration but also dampens trust. So from the beginning, open and honest communication has been key. And for the first 6 yrs of our relationship, this model worked out great.

Then we decided to try for a baby.

I don't need to elaborate with this audience how much infertility fucks with one's sex life, but for those who are looking for more information read here, here and this study, which is also summarized here. Regardless, it's well known that the prescribed sex, the monthly grieving pattern following BFNs, feelings of failure associated with the act to a general decay in self-worth. Infertility is the nuclear warhead to a healthy sex life. The thing is as one is in the midst of it, there's this hope that one day, after infertility is behind you, you'll be able to reclaim the sex life you once had. The problem is no one really openly talks about how to accomplish this.

There's an added wrinkle to all of this. For me, my pregnancy with the Beats ended very traumatically. Though I am forever grateful to the amazing medical staff who not only saved my life but also provided amazing medical care to the Beats during their time in NICU, the truth is that seeing my twins hooked up to machines, having wires and tubes coming out of their incredibly small bodies and having them live in a plastic isolette for about 2 weeks solidified how much my body had failed them and their siblings. Instead of marveling at what my body could do, providing a warm, safe environment for them to grow, I was struggling with the growing guilt and shame of this failure as a mother. Add in the fact that my body is still distorted, I'm at least 30 lbs overweight and Raynaud's phenomenon makes it so that my boobs are on fire every couple of hours and the result is the idea of "sexy" is pretty much quashed.

The past week a lot of this has come to a head. Grey is frustrated with this element of our relationship being gone and, frankly, so am I. I find I'm much more irritable with people, resenting the idea that others have found ways to bring this back into their lives (which is evident by the recent pregnancy/birth announcements). The problem is how to overcome it. And for this, I'm completely at a loss, as compared to other pressing items like sleep, job security, dealing with a leaky roof, dealing with destructive neighbors (who by-the-way have INCREDIBLY noisy sex makes one wonder if they aren't simply filming a porno), on top of child-care and day-to-day logistics, sex and personal care is pretty much at the bottom of the list.

So, my question to all of you is this: how do you do it? How do you prioritize sex during/after infertility? Thoughts, suggestions and even crazy stories completely welcome.

Sunday, March 9, 2014

Part IV: The road to resolution

The final post in my transition back into blogging. Something I've been thinking about a lot over the past year since that first BFP. As always, if you are in not a good place, please, please, PLEASE take care of yourself first. And please bear with me as I ramble.

Years ago, following an official diagnosis of "unexplained infertility" and all the emotional turmoil that comes with it, I held fast to the belief that having a baby would automatically lead to me resolving. As naive as it sounds, the thought was that obtaining that elusive BFP and going through pregnancy would result in my crossing over into a world of bliss and happiness. I believed this so much that my original plan was to shut down this blog once I got the positive pregnancy test.

Then the losses happened.

And I learned about all that could go wrong with pregnancy.

So as I white knuckled my way through this pregnancy, I modified my belief, hoping that once the Beats arrived a lot of the anxiety would disappear. Sure, parenting would be hard, but I subconsciously believed that all that would change if/when I could hold the Beats.

And, obviously, I was still very naive.

Over the past 7 months, both Grey and I have gotten into the habit of checking the Beats every night around 2 am. The ritual is always the same, involving checking their lips to see if they are blue, counting breaths and assessing their quality. At moments where their breathing is so peaceful, making it difficult to detect, we've been mean enough to wake them up. All out of fear that by not checking that the worse will happen. And though this fear is slowly subsiding, the running joke is that these breathing checks will continue well into the time the Beats move out and marry (and will be an interesting thing to have to explain to their future life partners).

As I've reflected on this ritual that both Grey and I have adopted, I've realized my view on resolution being a destination has been a flawed one. After all, infertility has changed and shaped both Grey and me in such a way that we are both very different individuals compared to who we were before this trauma. So to view resolution as a destination, a final point on our map actually is an injustice to all we've been through and learned along the way. Hence I've been modifying how I view resolution, seeing it more as a process, a journey all it's own.

A couple of weeks ago, Mali @ No Kidding In NZ wrote this post where she talks about how she wants to see less gratitude and sensitivity from those who are parenting after adoption/infertility/loss. Her point being one that is completely reflective of where she is in life and one that I hadn't considered. When I argued that she was a "minority of a minority," what I meant was that most people I had meet IRL who had resolved to not to parent following infertility/loss were still addressing the emotions and logistics surrounding this decision. Hence the reason I've been so mindful about the warnings for posts for the Beats. But Mali, as usual, got me thinking more and more about the resolution process. Just as Loribeth had. A similar post from Mo @ Life and Love in the Petri Dish has added to this too.

So here's me taking a leap and being honest with all who read this: the truth is that as much as I love and cherish the Beats, I still am battling the demons from infertility. I'm still in disbelief our babies are not only here, but thriving (and man are they thriving), waiting for me to wake from this dream and find it all gone. I also mourn deeply the loss of our other potential babies, as I now have a more concrete comparison of what we lost. It's not to say that my grief before was any less, but it is different. On top of all of this, I worry that because of all we've been through that I'm actually unfit as a parent, failing these babies on a daily basis. And I still feel unworthy of this gift. Of being able to hold these two at night, feel the softness of their skin against mine, receive their smiles and inhale the sweetness of them.

Recently I found a quote from Haruki Murakami's Kafka on the Shore that seems to summarize this best:

“Sometimes fate is like a small sandstorm that keeps changing directions. You change direction but the sandstorm chases you. You turn again, but the storm adjusts. Over and over you play this out, like some ominous dance with death just before dawn. Why? Because this storm isn't something that blew in from far away, something that has nothing to do with you. This storm is you. Something inside of you. So all you can do is give in to it, step right inside the storm, closing your eyes and plugging up your ears so the sand doesn't get in, and walk through it, step by step. There's no sun there, no moon, no direction, no sense of time. Just fine white sand swirling up into the sky like pulverized bones. That's the kind of sandstorm you need to imagine.

An you really will have to make it through that violent, metaphysical, symbolic storm. No matter how metaphysical or symbolic it might be, make no mistake about it: it will cut through flesh like a thousand razor blades. People will bleed there, and you will bleed too. Hot, red blood. You'll catch that blood in your hands, your own blood and the blood of others.

And once the storm is over you won't remember how you made it through, how you managed to survive. You won't even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in. That's what this storm's all about.”

In short, though told that the hurricane that was our journey this past 3 yrs is now over, I'm finding that I don't entirely trust that. Looking back on how exactly this last FET and subsequent pregnancy played out, I'm still in disbelief. Hence resolution isn't a destination at all; for me it's actually been a journey.

One thing is clear, though my journey towards pregnancy is over, this chapter of my life is not. As Grey and I travel down this road, there are some additional things we need to address. But day by day, I'm finding the wounds are healing and I'm becoming less afraid of showing the scars. Still, I have a long way to go. This part of our journey has just started, but I'm lucky in that I have some fantastic role models to follow who have bravely blazed the trail.

Tuesday, February 25, 2014

Soundtrack of their first months: Elevate

Friendly reminder and warning regarding posts about the Beats: As always, feel free to skip these posts if you are not in a good place, need to guard your heart or simply find them unbearably cheesy.

Back at the beginning of January, I was reading a number of posts for various bloggers reflecting on the previous year and hopes for the new one. One particular theme that I loved was picking a single word or phrase for the upcoming year as a symbol for what is desired or to sum up the previous year. Thinking back on the past few years, I struggle with this as there is so much wrapped up with each one, from personal growth, hope, heartbreak and facing death. But with 2014, both Grey and I have been very clear with our intentions from the get go: 2014 is meant to be a year of transition, both mentally, emotionally and even physically. There's currently a lot going on behind the scenes that I promise to eventual share, but those first steps we've already taken (both of us have new employment and a new outlook on what we want from our careers) have been both frightening and freeing.

One morning, as we were preparing for the first feed of the day, a new song came on the radio. In an effort to distract the Beats while Grey finished warming a bottle, we had a little dance party in bed. Though this song was time perfectly for this and was meant to be nothing more initially, the tune stuck with me throughout the day. Reflecting on the lyrics later made me realize that the title was our theme for 2014. That Grey and I are no longer looking outward to achieve our goals, but solely looking to ourselves.

St. Lucia - Elevate
I don't know how you do it
But somehow you've always will be there
And there's nothing to it
But somehow you've always understand

There's no way to wake up now
Too many times I saw you cry
No one can make up ...
You wait for the sun to make the sky

No one elevates you, elevates you now
And no one is going to take you, going to take you there

All this time, never thought I would see you smile
Know that I, and I know that I see it now
But I know I can't walk it
Never go back again
No matter how, tonight I'll
Never go back, never go back again

No one elevates you, elevates you now
And no one is going to take you, going to take you there

You know that I want to get away
And I cannot wait another day
You know I want to elevate
Time to pick up and celebrate

No one elevates you, elevates you now
And no one is going to take you, going to take you there

Hold on to your heart

Sunday, February 23, 2014

Getting back in the saddle: Part III - Processing another's grief and forgiveness

This post has been one that I've been mentally writing for about 6 months, going back and forth with how exactly to write it to articulate accurate the thoughts that have been swimming in my head. I've also gone back and forth a lot about whether or not to publish any of this as at first glance it could seem as an attack. I promise it's not my intention at all. So, bear with me as my thoughts on all of this are still jumbled and I'm fairly certain I won't get this right on the first time.
********************

It's no secret that grief and infertility/loss go hand in hand. Ask any person who's been on this journey for any length of time and they can easily educate you on the grieving process (5 stages and all) as well as share personal accounts of moving through them. Over the past 3 years I've read countless posts about grief, ranging from the grief due to shock of finding oneself dealing with infertility/loss, grief due to a failed treatment cycle or BFN to grief due to loss of a child, stillbirth or miscarriage and even grief due to coming to the end of one's TTC journey without the ending they wanted. The themes are always the same: unfathomable pain, feelings of isolation/shame, anger and always an effort to try to understand why. All valid and all understandable.

The problem arises, though, when grief and pain are compared. That somehow someone's experience is negated because their pain is consider "less" than another's. That somehow there's a scale to measure pain and if we don't fall on it, then one should simply suck-it-up. Similarly there are experiences that few want to even imagine exist. Simply talking about these makes those around them uncomfortable and it's not uncommon to hear explanations or simple platitudes as if somehow it will make everything all better.

But there's one other level to all of this that I hadn't considered until as of late. This idea that somehow we should all be able to understand another's grief inherently. That when someone else is hurting, there should be no need to explanation and that one false step condemns the offender for even trying. It's something I most certainly have been guilty, but it wasn't until I was on the receiving end that I realized how guilty I've truly been.

About three weeks ago, two posts in particular have had me thinking more and more on this subject. The first from Northern Star @ Constant in the Darkness explores processing another's regret over the decision to enter the adoption process. She does a nice job of not only exploring boundaries but also how another's regret over decisions is not reflective on her. The second post is from Loribeth @ The Road Less Traveled as she explores this idea of "I can't imagine" as a way to invalidate someone's grief. If you haven't read either of these posts, I really recommend taking a moment, especially the comments section for Loribeth's. But the thing I took away from both posts is that there's this tendency for ownership of grief to be passed. That when a connection is made with the grieving party, we should somehow inherently understand exactly what they are thinking and feeling in the moment.

Here's the thing that I'm learning, though: this misplaced definition of empathy is next to impossible. There's no way that anyone of us can truly understand all the thoughts and emotions of someone who is grieving. We most certainly can try and, many times, we can get to a point where we are close. But we are all unique individuals with unique life journeys. One individuals tragedy is another person's bump in the road. Someone's pain may be nonexistent for another. And it is wrong of any of us to assume otherwise.

The spark behind all of this is two separate situations. The first is my relationship with Grey's brother Lucas. The last place we left things was with a letter where we were both trying to express how the actions of the other had caused pain and anger. The truth of it all is that my anger over my losses was placed on him and his wife Moon as they were easily able to conceive and birth a daughter during the period where Grey and I were losing our pregnancies for no explanation. I was angry over the unfairness of it all and I blamed both of them for their lack of sensitivity towards us as we were struggling.

Before the Beats were born, I made a conscious decision that all of this needed to be worked out. I needed to be at peace with his family prior to our babies arriving and I needed Grey to allow me to openly communicate my feelings. It took a bit, with many drafts going between Grey, David and myself, but that initial letter was meant simply to get the conversation off the ground. And off the ground it did, with Lucas writing a well thought-out response that was respectful though valid.

Then the Beats were born and everything was put on hold. The whole experience strengthen the bond between Grey and Lucas, with them exchanging countless texts about everything one could imagine regarding twin parenting and the frustrations/fears/anxieties of those first few months. But outside of those exchanges, Lucas and I certainly haven't talked. And though I began to understand first-hand some of the complaints and hardships that he had previously talked about with Grey, I still felt some residual anger that he failed to understand all we had been through to even get the Beats here.

What changed all of that was a second situation. Around the time the Beats came home from the NICU, another friend who had struggled with RPL finally birthed her child. Though a very happy occasion, it was clear there was still a lot of stress with adjusting and learning how to care for her. In addition, I suspect she was also struggling with postpartum anxiety, a close relative of postpartum depression. All of this happening during a period where both Grey and I were struggling with severe sleep deprivation, fighting to get breastfeeding off the ground (a difficult thing to do when the babies first learned to eat from a bottle and we were unknowingly dealing with tongue-tie with She-Beat) and a looming contrast MRI.

The details aren't important, but the day of my MRI, I made the mistake of venting to her all my concerns. I was tried, struggling with anxiety from the experience of being in the MRI machine, suffering from hallucinations from the contrast agent and feeling like a failure from the news that She-Beat wasn't able to transfer milk while on the boob. I was told immediately that I needed to quit breastfeeding, as this is something she had just done, and that I needed to hand off the Beats to Grey for an evening for him to care for solely so I could sleep.

The short of it is that I knew this advice wasn't good for my family. Grey was also incredibly sleep deprived and had just returned to work, so an evening of him solely caring for the Beats would have been disastrous. In addition, I wasn't ready to give up on breastfeeding. Things up to that point had been working and there were a few other avenues I wanted to explore. It's not to say that I don't think those who feed formula are somehow doing something wrong, but that was not the choice I wanted to make for feeding my babies (and I still had that choice).

So I ignored her. Sloppily responding to the texts as typing was next to impossible as I was blacking out from the MRI experience. And then I spent the next 2 weeks working with Grey to figure out a sleep schedule we could both live with, working with Renee Beebe to resolve She-Beat's tongue-tie and ultimately getting to a place that was better for my family.

What happened after that shocked me. I knew things were potentially tense with this friend, but I wasn't expecting to be accused of judging her because I refused her advice. That I would be labeled as a bitter and selfish person because I had vented that day. That somehow my decision to continue breastfeeding suggested she was a horrible mother for her decision to formula feed. Never mind the fact that I vocalized time and again that I believed this was the best decision for her and her family. Me not joining the club meant I was judging her and somehow I should have known better. Add in a comment how I needed to tell Grey to start stepping up and be a father (because she believed he wasn't) and I was instantly pissed.

And just like that two things happened. The first being that I knew for the sake of my family, I needed to allow her to end the friendship. If it was between her and the Beats, my babies had to come first. The second was I immediately understood how unfair I had been to Lucas and Moon. Because what this friend was doing to me is pretty much what I've done to them.

Let me be very clear: in no way am I excusing the standard exclusion and minimalism your average ALIer faces from society. Comments that are meant to invalidate someone's pain/grief are never acceptable. But what I'm also learning is that those of us who are grieving have a responsibility to help guide those who are trying to reach out and offer support. That failed attempts from someone who is genuinely trying is not a reason to villainize that person or throw them into the same category as those who clearly don't care. To do so not only furthers the rift and actually perpetuates to myth of the bitter infertile.

In other words, as Grey likes to remind me during moments of impasse, one has to be helpable. Otherwise there's no winning.

The end result of all of this has been me slowly drafting a response to Lucas's last letter, trying to express all of this and to ask for an apology. I'd be lying if I said this was an easy thing for me to do. But the truth is, in order for all of us to move forward and for me to help them better understand all we've been through, I need to ask for forgiveness. I need to acknowledge that it was not their responsibility to own any of my grief for our losses nor the pain caused by them being able to do seamlessly what we struggled with for so long.

Wednesday, January 29, 2014

Soundtrack of their first months: Somebody to love

This past summer, back when I was still a pregnant infertile, Grey and I had a discussion about maintaining sanity during the first few months after the Beats arrived. Remembering back to our trip to help Lucas and his wife following the arrival of their twins, we talked extensively about whether to buy or relocate our existing TV into our bedroom so that there would be some background noise during the middle-of-the-night feeds. Ultimately we decided against this, opting instead to invest in an iPod docking system complete with radio. A decision and investment that has overwhelming paid for itself time and time again.

Anyway, during those first few weeks of the Beats being home, the radio played nonstop to provide background noise to help soothe the babies to sleep. What was unexpected, though, was that a soundtrack would emerge representing their first few months of life. Songs that we've danced to as a family; songs that I've wept big fat tears over while rocking the Beats to sleep; songs that have broken my heart as I've reflected on our journey to become parents; songs that reminded me to have hope.

Given that writing has been difficult due to my new job, the new daycare schedule and general life craziness, I thought I share some of these with all of you. As always, feel free to skip these posts if you are not in a good place, need to guard your heart or simply find them unbearably cheesy.
**********************

Folk music has become a love of mine since I first arrived in the Pacific Northwest. This love started while I was in college, but blossomed following living with a local musician and having the opportunity to explore the local music scene with her. During my year living in the Mint House, I dreamed some of the sweetest dreams after falling asleep to Jen's guitar and even now when I'm in a vulnerable state, I still find comfort in listening to some bluegrass music while enjoying a beer.

One night in September, around the Beats due date, I found myself alone with two whimpering babies who were practically inconsolable. Not wanting to wake Grey, as it was my time to cover the babies so he could recharge, I began scanning the radio in hopes of finding something that would help all of us get some sleep. I stopped on the local station and decided to give the program a shot following an introduction of a new musician who played bluegrass music while sporting dreadlocks. The music that filled the bedroom that evening not only coaxed the Beats to sleep, but brought me to tears while also making me laugh. Music that touched me to my very core.

The artist from that night is Valerie June, a singer/songwriter from the Memphis area who specializes in a form of bluegrass music that she happily refers to as Organic Moonshine Roots music. Valerie's first album "Pushin against a stone" is the result of a Kickstarter project and was co-written and produced by Dan Auerbach of the Black Keys and Kevin Augunas (think Edward Sharp and Florence + The Machine). She's been featured on NPR Music, BBC Radio 6 and most recently with the Revival Tour

Though I could write an entire blogpost about each song she performed that night and the emotions that they drew out of me, I won't and instead will focus on the song I rocked the Beats to sleep to that night. A song that I still hum to them when I'm drying their tears following moments of unhappiness. A song that has become my promise to them. A song that when I sing, makes me cry tears of my own: tears of joy for having these two in my life and tears of sorrow for the ones I never got to hold.



Valerie June - Somebody to love
Well, if you're tired
and feelin' so lonely
you wake up at night
thinking that only
if you had somebody
I'll be somebody
Somebody to love

Did they tell you, there are
plenty of fish in the sea
but you're drowning and cold
and you're feelin' empty

Looking for somebody
I'll be somebody
Somebody to love

I'll be somebody x3
If you need somebody
I'll be somebody x2
If you need somebody
I'll be somebody x3

If you need somebody
Somebody to love

Are you watching the moon risin'
in the darkest of night

Battered and broken
'Cause you know it ain't right

'Cause you ain't got nobody
You ain't got nobody
you ain't got nobody

And I'll be somebody
I'll be somebody
Somebody to Love

I'll be somebody
If you need somebody
I'll be somebody x 3
if you need somebody
I'll be somebody x3
You can call on me
I'll be somebody x3
You can count on me
I'll be somebody x2
Somebody to love

Friday, January 24, 2014

Getting back in the saddle. Part II: A diagnosis

Thank you to everyone for the comments and support with my first return post. Again, I recognize, as someone who was firmly in the trenches not that long ago, how difficult it can be to read posts like that one. I'll spare you all the samples of the inner dialogue that happened prior to hitting the "Publish" button, but I will say that this community continues to leave me in awe with the support I receive from all of you. Thank you again for helping me reclaim this space.

Back in 2011, following a full years of negative HPTs and a growing realization my resume for family black sheep was growing due to me venturing into the uncharted territory of fertility treatments, I found myself firmly in the strange category that is "unexplained infertility." When one asks any medical professional about their definition for "unexplained infertility," you'll get a myriad of comments, ranging from "we haven't been able to pinpoint the exact cause of your condition" to "based on our evaluations, there's no reason that you can't become pregnant." But something that isn't talked about it how finding one's self in this category of infertility can be a shameful experience.

I remember all too well the first few times I shared my diagnosis with other infertiles. Though no one ever came out directly and said it, not having a firm reason for why I was unable to conceive left me feeling like somehow my situation was lesser. I remember all too well the pauses and the "oh"s that would follow. Too often, there was the gentle pats and the quick subject changes. It was as if somehow I was simply making up my inability to get pregnant just to be a part of something; that somehow my infertility was solely in my head, easily rectified through IUI or even simply relaxing.

Now, before anyone jumps all over me and begins preaching about how life-changing a diagnosis of endometriosis, PCOS, azoospermia and general male factor are, please realize that I'm not saying that these diagnoses aren't painful. Hell, I put them on the level of a cancer diagnosis as far as trauma. But one benefit that does come from these diagnoses is having a doctor validate that there is an identifiable reason for failing to conceive. And as much as it shouldn't make a difference, the truth is it does.

In the years that followed, with all the failed treatments and the losses, being diagnosed as "unexplained" quickly lead to me wondering if I was somehow sabotaging our efforts. I remember sitting in David's office, sobbing as I confessed the growing guilt about how I believed that I was subconsciously killing our embryos because of an underlying belief that I didn't deserve to be a mother. After all, each time we encountered heartache, we were given an explanation of "bad luck" or "just try again." There was even a moment where someone suggested that taking a break was needed, not for my mental sanity, but simply because all the stress was probably the cause. Never in my life did I hate myself and my body more than that day.

All of this changed in October 2012. Following some gentle pushing from Jay, I finally agreed to seek a second opinion. The truth is, I never expected much out of this appointment. I don't think anyone did. So you can imagine my utter surprise when RE told me those three words I never thought I would hear: "we found something." And though Grey didn't initially believe that an elevated level of Lupus anti-coagulant would be relevant, a repeated result lead to an modification in a FET protocol. And it was with that modification, that one chance of an explanation for all the years of heartache and pain that I found the strength to jump head first back into a final round of treatment.

I've mentioned before about how painful Lovenox injections are. Many seasoned IFers who undergo this treatment are all too familiar with those sharp pains, the burning and the extensive bruising that results. What I haven't talked about, though, is the ongoing battle I had with all of my doctors to stay on this treatment while I was pregnant with the Beats. The first round came during my initial OB appointment once I graduated from Dr. Smile's office. The OB I was assigned to looked completely overwhelmed when I brought up that not only was I pregnant with twins but also doing these injections. Thankfully my MFMs were all too experienced with this medication and were willing to allow me to stay on it, but as the nose bleeds and delayed bleeding from the injection sites began to become more frequent, they did voice their concerns that I was unnecessarily medicating myself with a blood thinner. After all, I didn't have an official diagnosis of Anti-phospholipid Antibody syndrome and my pregnancy up to 28 weeks was going incredibly smoothly. Why subject myself to daily painful injections?

Everyone's tune changed in July. As the data came back that I was developing HELLP syndrome, the dialog about the Lovenox changed. I remember the looks of concern as my MFMs carefully monitored me throughout July 2013, focusing first on my liver and then turning their attention to my kidney function. I remember all too clearly the day I was admitted to L&D, with them ordering a stop to the Lovenox to prepare me for surgery and delivery of the Beats. I remember the ER residents piling into my hospital room, with me becoming an educational tool as no one had ever seen someone with HELLP syndrome where they had time to prepare (normally emergency C-sections are scheduled).

But most of all, I remember waking up the day after the Beats had been delivered and I was being monitored closely in L&D as they were preparing for my body to crash. I remember my MFM, the one who I credit for saving the Beats and my life, coming into my hospital room and after a brief recap of all that had happened and the plan for moving forward, handing me a Lovenox injection. At 6 am PST on July 28, 2013, I was officially diagnosed with Anti-phospholipid Antibody syndrome. And with this diagnosis came one thought:

Finally.

Finally we know why. And I naively believed that with this diagnosis all the struggle to finally address this would be over.

How wrong I was.

Since that fateful day, I have fought with the doctors at my HMO simply to determine what measures of preventative care I need to take to ensure that all of this be addressed. Time and time again, I've been blocked. Though a Contrast MRI done in October (a lovely experience which I'm still recovering from physically) revealed 4 large masses on my liver, the response has been "let's wait and see." Follow-up blood work that showed I have zero lupus anti-coagulent in my system resulted in a "cured" diagnosis from one OB. A later diagnosis of Raynaud's syndrome due to blanched nipples and vasospasms during breastfeeding still didn't raise red flags, even though one physician did admit that there is a strong possibility that we are looking at the beginnings of Lupus. All of it making me wonder whether these physicians hired at my HMO either graduated at the bottom of their class or somehow managed to obtain a medical degree online. Though with new employment combined Grey and I finally coming to the realization that it's time we upgrade insurance, which will allow us access to more competent medical personal, the reality still is that even with a diagnosis I still am firmly in uncharted territory.

All of this comes back to one undeniable truth: the link between immunity and fertility is one that is most certainly poorly understood if believed at all. Ask many a RE about their thoughts on infertility being caused by an autoimmune disorder and you're likely to get a response about how the data doesn't support this, an accusation of those practicing Reproductive Immunology being quacks and/or even a look of noticeable annoyance that clearly says "not this topic again." In truth, the published data about immunity being causal of infertility is fairly suspect, with authors basing conclusions on data that is far from clear or poorly designed/executed experiments. One classic example of this comes from the PLoS One paper about "Super Fertility," where the authors make a case that recurrent miscarriage is linked to the failure of one's uterus to distinguish between viable and non-viable embryos. Though at first glance to the untrained eye this report is frightening, there are many, many problems with how the authors came to these conclusions: the "control" group is not a healthy population (see Materials and Methods), the decidualization is not uniform (and tends to be wider in the control group than in the experimental group), staining of F-actin is inconclusive, etc. The point being, the research supporting this idea isn't solid.

But just because there's no or poor quality research in an area doesn't mean that there isn't a link. In fact, this idea is one that could open the possibility of more going on then previously suspected. Work from researchers like Lou Guillette, Tyrone Hayes and others suggests that not only is there an environmental impact on one's ability to reproduce, but that the affects are much more global, linking to one's general health.

All these thoughts have been spinning through my head for months now. Grey and I have had multiple conversations, with me throw hypothesis after hypothesis at him and even others to gauge their response. Finally, during a late night pumping session where I was reflecting on my initial diagnosis of simply having low progesterone levels, I finally decided to do an internet search for progesterone and autoimmunity. What I found immediately was a research paper and a review by a young investigator located in Seattle WA.

For those who are interested, I'm more than happy to send you the review. But basically Dr. Hughes makes a case for progesterone having a profound role in regulating autoimmune disease. As I read, the thought that continually popped into my brain was whether my low progesterone levels resulted in my immune system attacking my embryos? After all, all my REs agree that I have an issue with implantation, but the idea that it was due to my immune system destroying my embryos because they were foreign made me reflect more and more on those cycles where I had felt different but always gotten a BFN.

What if all along it was just a matter of raising my progesterone levels an appropriate amount? After all, we now know that my body needed double the amount of PIO in order to reach appropriate progesterone levels. What if there's an environmental component, with my hormone levels being out of wack due to an exposure? What if my infertility is simply one piece of a much larger puzzle, linking to more seriously underlying health conditions? What if all of this is preventable and/or easily treatable, meaning the hardships I had to face would not have to be faced by others? What if? Oh what if?

So, after much debate, I finally composed an email to Prof. Hughes to set up a time to meet and talk about this idea. We're still in the process of trying to work out a time to meet, but I'm hoping the discussion will take place soon. In the meantime, Grey has also been thinking about this issue based on his experience. I can't speak about it too much, these are his ideas and could lead to some amazing development of new technologies, but I will say that when he speaks with colleagues there's excitement.

All of this still leaves me feeling heady. Thinking about this diagnosis, how even with it there is no clear answers. But how there could be. And both Grey and I have the training to explore this. I don't know where it will lead, nor do I suspect this will lead to a huge leap forward with how we treat infertility. But if there's a way that somehow the last 3 years of pain and loss, filled with uncertainty and even questioning my sanity, could lead to something good coming out of it, it's worth exploring.

Monday, January 13, 2014

Getting back in the saddle. Part 1: Confronting the guilt

So....

Remember a couple of months ago when I wrote about not neglecting this space? That I didn't want to become one of those bloggers who fell off the face of the earth following giving birth.

Yeah, color me guilty.

In all honesty my intentions of maintaining this space were genuine. And there was a time there for a bit that I *thought* I'd be able to find the time to write. But then it didn't happen. And it didn't happen for a variety of reasons, all of which need to be addressed.

Starting today, I intend to rectify that. With the new year, the Beats now mostly sleeping through the night (big win on this end) and me transitioning back to work, it's time.

So I'm getting back in the saddle, so to speak. And I've made the decision, as this space is mine, to shameless write about all the crazy thoughts and emotions I've lived through over the past 6 months. Do I anticipate that some of what is said here being hard for others to read about: most certainly. But I'm also realizing that honesty ultimately leads to better outcomes; that suppressing dominating thoughts and feelings ultimately does no one any good (and can actually be a destructive force). So for those who are still following this space, I ask that you bear with me during these next few posts. And I also ask that you recognize that my decisions are my own and not recommendations on how others should be living their lives.

Deal?

***********************************
About two weeks ago, Grey and I were discussing so logistics regarding preparing the Beats for daycare (which we refer to as school). As we were finishing our discussion about bottles, nap schedules and making sure that Grey would have the opportunity to have lunch with them once a week, Grey paused and got a far off look on his face. After a moment, he turned, looked at me with a very solemn expression and asked me the following question:

"A year ago, where did you think we would be today?"

Without missing a beat, I answered him "not here; not with them."

He nodded quietly. "I had the same thought, too."

You see, unlike past fertility treatments, where we both entered into the process with the hope of a take home baby, both of us entered into this final FET with the thought that it would be closure. As crazy as it sounds, it turns out neither of us expected the outcome that we got as instead we were preparing to close this chapter and move straight into the adoption process.

What happened instead has literally turned our world upside-down, be it in the happiest and most wonderful way possible. Suddenly we became "that couple;" the ones where all hope was lost and *BANG* a miracle happened. Don't get me wrong, we are both beyond grateful that everything worked out the way it did as we are now raising two very healthy and happy babies, effectively ending our journey towards biological children. But what we both feel we haven't been allowed to process is all the emotions that have come from this unexpected outcome. That because things worked out the way they did, all we are allowed is to feel joy and gratitude.

This past weekend, Lisa @ Hapa Hopes wrote this fantastic post about coming to terms with transitioning into motherhood after infertility. If you haven't read it, I recommend taking a moment to click over and doing so, as she does a very nice job of addressing some of these feelings. Most importantly, though, Lisa is brave enough to talk about the sadness she feels with the knowledge that her daughter may be an only child. That as much as she wants to experience pregnancy again and expand her family, she's also preparing herself for the reality that it may not happen.

Here's the thing: Grey and I always intended to stop the TTC process once we had two children. Like many in our circle, our child-bearing plan was composed simply to experience this process twice. Logically, I know we hit the jackpot with our twins. Two very healthy and happy babies following a mostly uneventful pregnancy. Granted there have been moments that haven't been easy (sleep deprivation that was extended because the Beats were premature, being in NICU, etc), but overall we've been very lucky. And every time I interact with our two rainbow babies, I can't help but marvel at what I see in front of me. Because, truly, after saying goodbye to our biological children a couple of summers ago, I really believed that I would never get to experience this.

But the ugly truth is, as much joy/elation/unbound happiness I feel when I'm with the Beats, there's also a bit of sadness that comes with knowing I will never be pregnant again. Trust me, I get how painful this statement is for someone who has never been pregnant after struggling so long or for someone who has experienced loss. But knowing very well that this option is forever gone without a chance to experience it again brings a sense of loss, even though we never intended more than two.

And that's when the guilt comes rushing in. After all, we have what we fought so hard for. And pregnancy is simply suppose to be a means to an end. We should simply be grateful.

After a lot of reflection, though, it dawned on me that there was more going on than I accounted for. You see, something changed the day Grey and I started down the road towards adoption/living solely as a family of two. To travel that path requires that you enter a grieving process that so few will actually encounter. It's not to say that somehow people who don't explore this are somehow experience less pain due to infertility and/or loss, but the grieving process is different and there is a shift that occurs. And that shift requires to acknowledgement of saying goodbye.

I know what you're thinking at this point: if pregnancy is so important, why not simply undergo another round of IVF? After all, I know that I am able to become pregnant and successfully carry. The thing is, it's not that simple. Anyone who's undergone IVF can tell you how taxing the process is, financially, emotionally and psychologically. There's no "just" to this process. Add in the fact that I now have a diagnosis that automatically sticks me into the "high risk" category and suddenly things become a lot more murky. It's not to say that we couldn't go down this road if we wanted, but the reality for Grey and I is that we believe for us the costs far outweigh the benefits.

There's also the additional factor that the birth of the Beats has actually intensified the pain of our miscarriages. In raising the Beats and observing them reach milestone after milestone makes me think more about the embryos that didn't make it. Would they have their sister's eyes? Their brother's smile? Would they have giggle uncontrollably during baths or snuggled so sweetly on Grey's chest? These thoughts bring with them a new sense of loss for those we never got to hold.
Source
At the end of the day, I know how fortunate Grey and I are. At the end of this emotional, gut-wrenching journey, we got what we desired all along. That somehow, during our preparations to close this chapter on the potential for biological children, we got this amazing gift. And not a day goes by that I don't thank the universe for the Beats. For their smiles, coos, snuggles, and even those poopy diapers. Just thinking about them brings fresh tears to my eyes; tears fuel by gratitude and joy. Still, there is grief of things lost. Grief that I wasn't expecting and I still don't entirely feel safe exploring.

So today I'm confessing my guilt, all while knowing that in doing so I will be angering others. That my confession is in a way betraying those that supported us during a time when we needed it most; those that gave us strength to continue forward when all seemed futile.  I can't begin to tell you how fearful I am of that. Yet I also know that in the process of protecting all of you, I've also pulled away. So it's time I bare these thoughts to all of you, hoping that somewhere in all of this there will be understanding. And that will fuel this transition both Grey and I are now undertaking.

Part II coming soon. Topic: a diagnosis.


 
Design by Small Bird Studios | All Rights Reserved