23 February 2015

Falling through the cracks

I'm in awe of people who practice medicine for a living.  It amazes me.  And I'm definitely not one to disrespect a doctor or claim to know more than someone who has gone through specialized training.  But the system is so broken.  It has enormous cracks.  And I should know; Hubs and I fall right through one of them.  My fourth miscarriage started yesterday morning, and this post is the ugly truth about it that no one ever talks about.

I have no children, but I have been pregnant four times. I've spent a total of 16 weeks dealing with the early stages of pregnancy.  That's longer than a healthy pregnancy's entire first trimester.  But I've never had a real OB-GYN appointment.  Not ever.  I've only ever even talked to a real doctor once, and that was about 3 years ago.  Because in the world of pregnancy, OB-GYNs, their nurses, and their staff are only interested in seeing you if you have one of the following: 8 weeks of healthy pregnancy or 3 clinical miscarriages.  Note the word "clinical".

You see, our pregnancies are chemical.  Due to "chromosomal abnormalities", we only carry to about 6 weeks before we lose our baby...errr, non-viable embryo.  And apparently, these simply aren't worthy of real doctor's appointments.  Even when they happen 4 times in as many years, they don't count, and we've been made to realize that repeatedly.  I occasionally manage to reach a nurse on the phone; I chat briefly with the lab person who draws my blood every 48 hours.  But those are the only people who ever talk to me.  Everything else, we have to figure out for ourselves.  I understand why medically, but that doesn't change the fact that it's emotionally overwhelming. Every single time. We shouldn't have to do this alone.

I have to wait in the same waiting room, though.  Healthy pregnant women everywhere.  Newborns in carriers, crying and nursing.  Signs all over the walls saying, "Congratulations on your miracle!"  All the while, I sit in the chair, clinging to my husband's hand, enduring painful cramping and contractions that remind me that we were foolish to have gotten our hopes up again.  On the days you don't go to the OB-GYN's office, you're sent to the hospital lab, located directly across from the Birth Center.  Women walking around while they labor.  Newborns crying.  And you, miscarrying....again.  You fight the overwhelming thoughts that you will never have this.  THIS WILL NEVER BE YOU.

I realize this probably isn't the case with infertility specialists.  At least I hope it isn't.  And yes, we could pay the extra money to go there instead.  In fact, we will after this last loss.  But specialists can't do much for our specific problem.  The chance of success for our genetic-related issue is less than 4%, even with expensive specialist intervention.  And when specialists tell you you'd be wasting your money, you know your chances are slim.

I know what you're thinking now: faith.  Miracles, Lisa; they happen!  And it's not that I don't believe that is true.  But even when you believe in a higher power, four miscarriages puts your feet on the ground and makes you a realist.  I still believe God is in control, but simply asking God for something doesn't guarantee it.  It never has.  Yes, there is a reason God is allowing all this. Maybe I'll get to know what that reason is someday; maybe I won't.  But we have to learn to be happy no matter what happens, because we have no guarantees.  God's plan for our lives might not include children, and that doesn't make us inferior.  And people chastising or invalidating us for faith-related reasons doesn't help. At all. (And stop quoting Psalms 127:3. Seriously. Share it amongst yourselves all you want, but it is sincerely one of the most insensitive things you can say to someone struggling with infertility.)

Okay, now for the unpopular opinion. While experiencing a miscarriage gives some women unique insight to this situation - and I give them full credit and appreciation for that empathy - it changes the minute they successfully have a child.  Sorry, guys, but even you don't get it any longer.  I realize you understand how much it hurts to lose a child, but you no longer relate to the absolute crisis of self to have never succeeded.  It's a completely different ball game.  I struggle with anger when moms tell me they relate to me because of their inability to have their 2nd, 3rd, or 4th child.  Are you kidding me???  You have a little hand to hold.  You've shared that moment with your spouse.  You've met that little person that is a merging of you and your spouse.  You are acknowledged on Mother's Day.  You've been given that gift.  You're a mom.

The two lines on the pregnancy test will never mean joy to us.  Not ever again.  Instead, it's anxiety, pain, anger.  That's what miscarriages do; they steal your joy and turn it to dread.  I've learned to dig my heels in when I see those two lines.  Telling my husband comes with tears, not of joy but of fear.  It's happening again.  Don't you dare get your hopes up. Stay logical, rational. And for goodness sake, make the nurse listen to you.  Once you get her to call you back, that is.  Yes, I'm pregnant again.  Yes, you monitored my hcG last time.  No, I've never seen the doctor.  No, this is not an ectopic.  Oh, the E word.  That's the one thing they're paranoid about.  It could always be ectopic.  You'll struggle to get them to call you back at all...until they think it might be ectopic.  In a single week, I've been told "You need to go to the ER immediately" twice.  No, I don't.  You're not listening to me.  WHY WON'T ANYONE LISTEN TO ME?

I never thought I'd lose four babies.  I never thought I'd be terrified that number could climb even higher.  I never thought I'd be the person who knows a failed implantation simply by the way it feels.  I never thought I'd hate a positive pregnancy test result.  I never thought I'd resent friends who have no idea what this feels like.  I never thought I'd second guess nurses.  I never thought I'd see my tiny embryo on a piece of toilet paper, and certainly not more than once.

This is what infertility is really all about.  Aside from the loss and the lack of the thing you're fighting so hard to achieve, the system is set up to constantly remind you of your failures.  You will be made to feel unbelievably inconsequential, and you have to fight to be heard.  It's not a safe place.  It will never be a safe place.

A paranoid nurse woke me up this morning, the 4th nurse I've spoken to over the last week.  They wouldn't even call me back last week; now, they're concerned.  But now, it's too late.  Now, I just want to be left alone.  Instead, I had to talk her down from rushing to the ER.  I also talked her down from rushing to a transvaginal ultrasound.  We compromised; I will go back to the lab today, my 3rd visit in less than a week.  I'll sit with the pregnant women, grinning from ear to ear. I will have more blood drawn from an arm that's already bruised and green from all the other blood draws.  I will not see a doctor; instead, I'll make small talk with the lab person and be sent home to wait for my results.  When they finally call, it will probably be a 5th and brand new nurse.  She'll tell me they realize I was right, this is not ectopic, just another chemical.  My file will return to its usual spot at the back of the drawer.  We're sorry, but there's nothing we can do.  Have a nice day.

This week, I will stay under my heating pad, breathing through the pain as I silently miscarry my 4th baby.  I will swallow back tears and anger, my helpless husband grabbing my hand silently every once and awhile to remind me that while there's not much he can do, he's here.  I'll silently fight the overwhelming waves of failure and pain as I hide all my friends on Facebook once again, the photos of their healthy pregnancies and happy children just too much to process repeatedly.  I will once again hide while I try to put myself back together, because this topic makes people uncomfortable.  Because it's shameful.  Because again, we don't matter.  And the next time I see two lines on a pregnancy test, this entire process will start all over again.

The world needs to realize: this is what infertility is really all about.  WE MATTER.  Please listen.


Linda said...

I wish I could say something eloquent and wonderful. But I've got nothing. Keep talking though. Don't bottle this up. Just because it might make someone uncomfortable isn't a good reason to hide your feelings. Virtual hugs.

Ginger said...

You do matter and what the medical world is putting you through is shameful. I am angry on your behalf for the insensitivity shown to you. I don't know what your going through, not a little, but I still love and care for you and I have empathy for your pain. '
I do want to say that the reason the topic makes people uncomfortable is because they don't know what to say and they don't want to say the wrong thing. I see this with my chronic illness, either someone says something utterly stupid or they don't say anything at all... I used to think the utterly stupid comments were horrid, until I realized those people are trying. The people that don't say anything, arent. But because of my experiences, I won't ever not say anything again because I want to be the friend that you know cares about you, even if I accidentally say something stupid (which I have in the past, and am trying not to do ever again).

Lisa said...

Oh, Ginger, you are definitely NOT in the insensitive bucket. Believe me! Hugs right back to you.

Kari said...

Lisa, I'm sorry you and your husband are going through all of this. I've been praying for you guys ever since you first wrote about miscarrying your baby years ago. You are on my mind, in my thoughts and prayers. And you DO matter.

Anonymous said...

my tears fall and fall and my heart aches so deeply for what you are both going through even though I can't relate and there's nothing I can do to fix this.I would shout from the rooftops

until I can't speak another word that YOU BOTH DO MATTER more than any words could express. I love you so much honey.Mom