#StartAsking about what causes infertility

On a Tuesday afternoon, I found myself sitting on an examine table at my new doctor's office. Sitting across from me was the nurse practitioner, who was examining the blank screen in front of her as the front desk had failed to inform her that I was a new patient. Sighing, she began reviewing the information the medical assistant had given her (height, weight, blood pressure and a complaint of dizziness) before turning to me and asking me about my medical history.

It took only a couple of minutes for her eyes to widen as I got into it. Though the typical questions (Smoker? Allergies? Current medications?) didn't raise any red flags, the question "ever been hospitalized?" opened a floodgate.

Why were you hospitalized? 
For HELLP syndrome.

Wait, HELLP? (She takes a moment to look directly at me) And they were able to catch it? 
Yeah, I was being monitored pretty aggressively. My doctors overseeing my pregnancy were fantastic.

Why were you being monitored? 
Well, because I had a tentative diagnosis of Hughes Syndrome.

Tentative?
Yes. Not everyone agrees with the diagnosis. I didn't fit the classic diagnosis, but there's a number of people who believe it's the cause for my diagnosis of infertility and recurrent miscarriages.

Infertility? Meaning you underwent fertility treatments? 
Yes, four rounds of IVF

(Long pause)

Well, it's wonderful that the IVFs work!
Yes, we were extremely lucky.

**********************
An hour later, I'm sitting in the waiting room of the laboratory waiting for a blood draw. The whole while I'm reflecting on the conversation I had with the NP. On the one hand, I still marvel how far I've come that I'm able to talk openly about our journey through infertility without batting an eye or shedding a single tear.

But there's an underlying element that bothers me. The element of not ever having a formal diagnosis for what was preventing Grey and me from expanding our family. And the fact that when ever I talk about this informal diagnosis and all that happened, I still get looks from many a medical professional.

A diagnosis of unexplained infertility is a bit like a double-edge sword. On the one hand, there's no apparent reason for why the patient is unable to become pregnant. Hope is not immediately smashed with a diagnosis like this, as there's still the chance for a spontaneous pregnancy to occur. And yet, the months and/or years spent trying to get pregnant with no success, only to be given an explanation of "bad luck" is an exercise in insanity. Over time one begins to question whether they are somehow sabotaging their own efforts or if there is some sort of karmic curse inhibiting them from expanding their family. What doesn't help is that the physicians are often clueless as to what is happening, instead pushing for repeated attempts at treatment as a way of fitting a square peg into a round hole.

In December 2015, the New York Times published a piece about a study that found a 66% success rate for IVF following six rounds of IVF. The argument being made was that persistence pays off. And yet, what wasn't talked about is that if we advertised such statistics for treatment for any other disease (diabetes, Alzheimer's, cancer, etc), the general public would be in an uproar about the supposed success. That there would have been a call for reform and reanalyzing how we are approaching treatment. Instead, the take home message to any couple was "try again." Keep doing the same thing at all costs.

Since that day when I was given a possible explanation for what was causing my infertility, I've found myself both relieved and angry. Relieved for having an explanation for why I was living through this horrible trauma. That it wasn't due to me self-sabotaging or some divine curse as I was somehow unworthy to even dream of becoming a mother. No, instead the underlying cause was a biological one. A potentially treatable one. The relief I felt that day sitting across from Dr. Smile still hits me like a tidal wave.

But there's also anger. Anger because my previous REs poo-pooed any investigating in to why I was miscarrying early on during my IVF rounds. Anger because so many people questioned the necessity of the Lovenox I was on up to the day that I was admitted due to HELLP syndrome. And I'm still angry because no one is following up with all that happened.

You see, in the eyes of the medical community, I am no longer infertile. Birthing the Beats cured me of this disease. And any worry that I may have to long-term heal or whether the Beats may inherit this condition has been actively dismissed.

We know all too well that the causes for infertility are rarely cured solely by giving birth. Conditions like PCOS and endometriosis affect the patient on a holistic scale with increased risks for diabetes, cardiovascular disease, sleep apnea, asthma, allergies, chemical sensitivities, autoimmune diseases like MS and lupus. And, of course, there's the potential for cancer. Yet too often, this is overlooked or not followed up on. The underlying causes for these conditions and others like premature ovarian failure (POF), repeat pregnancy loss (RPL) and male factor infertility are not at all understood.

It's time we as a society #StartAsking. Infertility is not a social taboo and not a women's issue. Infertility is a multifaceted disease affecting 1 in 8 couples in the United States, 1 in 6 couple in Canada and 1 in 4 couples globally. Despite this, we know so little about the underlying causes for this disease and how best to not only treat it, but prevent it.

We need to #StartAsking about what these causes are.

We need to #StartAsking for insurance coverage, not only for fertility treatments, but also for long-term health care.

We need to #StartAsking why reproductive health is considered different from an individuals overall health.

And we need to #StartAsking why the focus has been one pushing fertility treatments instead of on research into understanding what is causing infertility. Why there is so little research funding to do so. Because without this understanding, we can't make advancements for prevention and treatment.

#MicroblogMondays: in the aftermath of rejection

Not sure what #MicroblogMondays is? Read the inaugural post which explains the idea and how you can participate too.

On Friday, I received a very nice formal letter informing me that I wasn't accepted for a spot in a course. The logical part of my brain immediately listed off all the reasons that this was a good thing (course was high commitment, on the other side of town which would have made commuting a bitch, would have meant leaving Grey alone with the Beats for almost 2 weeks, etc, etc.). And yet, the emotional part felt utterly defeated and frustrated.

I should be use to rejection at this point in my life. After all, I've lived through doors closing and finding windows for opportunity that I never would have focused on otherwise.

Yet, I still feel like a loser. And have been beating myself up appropriately for it.

How I hate rejection and all that comes with it.

Death of a Prince

It was after lunch that I learned the shocking news about Prince's death. An artist from my childhood home, I remember dancing to songs like "Raspberry Beret", "1999" and "Let's Go Crazy". Later as a young adult, "Purple Rain" was a song I turned to during dark days. To say his music meant something was an understatement.

One day during the early weeks of my pregnancy with the Beats, a song came on KEXP that I never heard before. Turning it up, I immediately recognized it was Prince singing, but the tune was a new one to me. A few days later, I downloaded the song and sent it to Grey as a gift. "Starfish and Coffee" has become a song we associate not only with the Beats, but also with the ALI community. Because you see, though not advertised, Prince was a member of this community having lost his infant son. 

Many will write about Prince's musical genius. How he inspired so many and change that community. But today I'm also mourning the loss of a member of this community. One who's music reminded me to find joy even in the darkness. One who brought hope.

Rest in peace Prince Rogers Nelson.

Small wins

Yesterday, Grey and I paid off our car loan. We purchased "Lenny" (yes, we name inanimate objects) in 2008 following an accident where the other party totaled our previous car after they failed to brake at a red light. Though we love everything about Lenny, its been a moral drain to have a monthly payment.

There's an additional level here though with closing out this loan. Like many in this country, fertility treatments were not covered by insurance. So when it came time to go down that road, we found ourselves getting creative with how to finance. Some was covered through FSA, a lot on credit cards (which we are still paying off), but one strategy was also to refinance Lenny not once, but twice. Meaning we've extended our loan in order to scrap together enough money to have the option to even pursue treatment. On one hand, we're lucky that we could do this. On the other . . . .

Following the phone call to the bank, Grey ran some numbers to see how we're recovering. With wide eyes, he announced that we're finally making some progress to paying off the debt we've accrued due to infertility. We still have a long way to go. And we are overdue for meeting with a financial counselor to generate a plan for how best to do so. But as of today, we're pulling out.

And today, Lenny officially is ours, free and clear.

Here's to small wins

Bully

Despite the cool morning air, I feel myself sweating as we walk. I'm anxious after second-guessing myself for night and through-out the morning. But I know I need to tell E. I need her to be aware of what's happening so that I can address what's been happening. Sighing, I take a deep breath and speak the words I've been milling around in my brain but am worried will automatically label me as a trouble maker.

"I've been feeling bullied."

Growing up, I encountered my share of bullies. From the boys in grade-school who made fun of me because I was both new and different, to junior high where the bullying continued solely because I wasn't good at defending myself. Later it would be a college roommate who would verbally abuse me and finally another roommate who spread lies about me to my other roommates. Finally there was my hazing into online bullying. In every case, a theme has emerged. A theme of the bully feeling threatened somehow. But also a theme of escalation unless they are somehow made to stop.

And this is where I fail, normally. I fail to confront them. To defend myself from the abuse.

The past couple of weeks things have been escalating. Despite me trying to steer clear, I've found my space being invaded, my work criticized and my general competence questioned. In addition, I've been feeling more isolated from others around me, with quiet looks and odd glances. Something that you want to brush off, but your gut tells you something is off. Yesterday it all came to a head, where I was chastised for a failed experiment that had nothing to do with this person. With that, I cut my day short so I could regroup and formulate a plan.

Over the past couple of weeks, I've been exploring my own history with low self-esteem and how it's resulted in severe feelings of jealousy and exclusion. There's been some hard self-reflection that has come out of all of this, with me having to confront the roots for why I've felt less. As I've been exploring this, I've found myself also learning more about bullying. About what drives someone to tear others down.

The hard thing about bullies is the walls to defend their behavior. They are quick to deny anything is happening, arguing that either certain events never happened or justifying their behavior. They duck and dive, avoiding the harm they are causing. They are masters at the game, knowing how to insert elements of doubt. The whole while avoiding any blame that could be pinned on them. Because with owning their behavior and the hurt they induce, they would have to confront the fact that their behavior stems from a dark place of self-hate and fear. That they feel less and are threatened by their target. So a bully never apologies. They instead fortify those walls.

Following my meeting with E, I confronted my bully. I started by expressing confusion about where they behavior was stemming from and offered to help rectify the relationship. But I also made clear that it needed to stop. Even as my bully ducked and dived, preparing to argue my points, I remained firm on that one point.

I don't expect this will be the last confrontation. Like stalkers, bullies are reluctant to give up on their targets very easily. But I'm documenting and making sure the boundaries are clear. But as of today, I've done something I've never done before. I've actually told someone that I deserve to be treated better, believing it in my heart as well. So even though I'm feeling shitty at the moment, guilty for driving a confrontation and doubting myself the whole way, there's also some pride that is coming through.

Hopefully round 2 is just in my head.

Sunset

There is a place where the sidewalk ends
And before the street begins,
And there the grass grows soft and white,
And there the sun burns crimson bright,
To cool in the peppermint wind.

Let us leave this place where the smoke blows black
And the dark street winds and bends.
Past the pits where the asphalt flowers grow.
We shall walk with a walk that is measured and slow,
And watch where the chalk-white arrows go
To the place where the sidewalk ends.

Yes we'll walk with a walk that is measured and slow,
And we'll go where the chalk-white arrows go,
For the children, they mark, and the children, they know
The place where the sidewalk ends.

~by Shel Silverstein

"Anything worth doing is worth doing badly"
~G. K. Chesterton

I've been putting off this last post. Mainly because I'm surprised at all the emotions that have come to the surface with this. Some were expected, but many weren't.

In 2006, right before the financial crash, Grey and I purchased our first home. It's a townhouse-style condo located in the northern end of Seattle. In a neighborhood just a few blocks away from the zoo and filled with promise for who are embarking on this new chapter. The plan was to stay in this condo for only 5 years. To use it to get our feet wet into homeownership and then move on to an actual house when the time was right.

None of what was planned happened. 10 years later, we still own the same condo. And instead of getting our feet wet, we ended up on a crash-course not only into homeownership, but property law, finance and accounting, law-enforcement, mediation and basic human psychology.

For the past 3 years, Grey and I have talked with realtors about selling. In each case, given the market, we were told to hang on. As others around defaulted on loans and went into foreclosure, we scrapped together mortgage payments and adjusted our careers. Moves were put off and opportunities missed. Combined with infertility and miscarriage, the condo became an albatross. We dreamed of the day we'd be able to sell.

That day has finally come. On Monday, we have a meeting with our realtor and property manager to discuss putting the condo on the market. They are very excited about the space and the location is one that is very desired at the moment.

This news has left me choking back tears.

A few years ago, a friend equated selling a home to ending a relationship/divorce. That you're parting ways with more than the material. There's what was dreamed of, the disappointments of what didn't happen and/or what happened instead, but there's also the good memories. The unexpected moments you haven't counted on and are hard-pressed to forget.

Though this condo has been a burden and there has been a LOT of unpleasant things that have happened, there's also memories there that can't be replaced. The friends we've made in the building. The skills both Grey and I picked up (electrical, plumbing, basic construction, etc) and the stories that go with those skills. There's also the fact that this condo was the Beats' first home. This is where they spent their infancy. This condo is where Grey and I faced hardships that brought us closer together, learned to find joy and happiness in even some of the darkest moments we've ever faced, learned first hand that windows do open when doors are shut and just plain learned that family is more than a societal prescription of DNA and involving more than 2 people.

This condo is and will forever be our first home.

The sadness from the decision to sell has surprised me. I always assumed we'd never look back. And yet, as we prepare for terminating our titles as first-time homeowners, I find myself remembering and grieving. Missing the sunsets and views of the mountains that we will likely never have again. Missing a home we built, even if it was less than perfect.

#MicroblogMondays: Smart Tampons?

Not sure what #MicroblogMondays is? Read the inaugural post which explains the idea and how you can participate too.

Breaking my habit of forwarding articles to others with this one. Especially as this is my arena.

Over the past 20 yrs, there's been great advances in technology related to biology. From sequencing to drug development to the rise in bioinformatics, there's been a big shift to genome-wide analysis and a push towards translational medicine. Hot topics right now include CRISPR-Cas system, RNA seq, immunotherapies linked with the microbiome and biomarkers.

So what does any of this have to do with infertility? Until recently, nothing. Simply because this wasn't an area researchers were actively investigating. One major downside of a taboo disease is that there's no funding for these investigations. And no funding means that the 1 in 8 impacted by this disease (1 in 4 globally) are relying on IVF and fertility drugs as a form of treatment/cure. That investigations into the underlying causes for diseases such as polycystic ovarian syndrome (PCOS), endometriosis, premature ovarian failure and immunoissues such as clotting disorders remain poorly understood.

This morning, I opened my email and found this article. Billed as building a smart tampon, NextGen Jane is a diagnostic start-up that is geared towards women's health. All focusing on biomarkers that can be extracted from the blood we release during menstruation. 

Granted, there's a lot of work to be done. And there will be a lot of wrinkles and knots to smooth out. But, this is the first shift. A long overdue shift towards actually being proactive to identify this disorders early, allowing for early intervention and maybe, just maybe, actual treatment.