The cost of infertility

I have been thinking about the cost of infertility lately, and thinking about doing a series of posts on that topic.

This is not the monetary cost, but the price I paid physically, mentally, emotionally sometimes even socially. I have never really quantified all the things I have lost or given up in my quest to have a baby.

The first and foremost thing I feel like I have lost is "Me". The last 4 years I have been obsessed with trying to conceive. Initially, when we got pregnant within 4 months of trying, I was relieved, but then we miscarried. I kept thinking, never mind, it will happen again and quickly. It didnt and my obsession nearly tore me apart for I wanted to "fix" what I perceived was broken within me.

I have been soo focused on getting pregnant that if I take a brief pause, I realize that it is all I have focused on.

I have lost myself and my identity which I now simply do often define as an Inhospitable Womb or "broken".
 I have lost my ability to like myself.
I have lost my health as the pounds pile on.
I feel like somewhere on this journey, I have lost myself. I know its not the first time that I have come to this realization but I have somehow failed to do anything about it.

I dont recognize the tired looking face that looks back at me in the mirror, most days. If its not a tired face, its a bloated and swollen face.

The #1 thing that infertility has cost me is my relationship with myself. I am not sure if I will ever have the courage to look for myself again, to like myself again regardless of the outcome of this journey. I hope I do, I hope I can

The scars of infertility

I walked out of my house today and glanced at the car parked on the street outside, I spotted a pretty pink princess on board sign.

I was alone in the car and spontaneously hrmphed. I dont know who the car belonged to but a gamut of emotions ran right through me.

Step 1: I immediately thought it was overboard rather than board
Step 2: I chided myself and my infertile mind that so was most definitely envious
Step 3: I admitted that how do I know I would not put up such a sign if I EVER managed to have a real live baby.
Step 4: I tried to sift through my feelings pre-infertility, post-infertility, denial, envy, longing

Inevitably after thinking about it for an hour I remembered, I am not a girly girl. I have been adamant that my infant baby girl will not be surrounded by all things pink.

Nothing wrong with it..absolutely nothing, its just that I love Blue and have always disliked pinks and reds.

I had shocked my husband when he realized that soon after marriage, I used to plan our nursery. Subtle colors, jungle themed, there was no room for pink or blue.

I remembered that, but not for an hour of anguishing at how bitter infertility had me. It took an hour for me to realize that infertility or not, I would never have a pink princess on board sticker on my car.

That is what infertility does, it messes with your mind. It makes you second guess your motives, and reactions.

I know I am not the person I was when I started this infertility journey. I often wonder about the scars that I ignore or the wounds that fester and never heal. I often wonder whether my judgments and reactions are marred by the ugly reality of infertility or whether I would have still reacted the same way before this journey.

Every experience changes you, for better or for worse and to struggle with something for 4+ years as I have, definitely leaves a mark the size of a sinkhole.

One Day.. One Step

I started writing a post about the last year and how it went I didn't publish the draft. I couldn't finish it, but I left this unfinished for a while too.

If there is anything the last year has taught me, if there is anything infertility has taught me, it is to take it one step at a time, one day at a time.

There are and always will be days I fall apart, there are and will be days where I flounder and I feel like I cannot go on. Thinking about how long this journey has been or will continue to be, it overwhelms me, so I think about that next step. Sometimes that is all I manage to think about.

If I can just put one foot in front of the other, keep on walking, that should eventually get me there right?

There is no right way to cope with losses, like yesterday it occurred to me that I would be planning for a shower soon with this most recent loss, that the baby was due in December. Of course, then I thought about the one that would have turned 3 in june or 2 in november. It just kinda devolved from there.

This morning as I edit this post and nibble on chocolate, I keep forcing myself to focus on my AF that is going to make an appearance next week, the next big clomid cycle coming up. It is a big one for DH & I went against Drs recommendation of IVF, we are going to have to make a decision soon on how many more clomid cycles. 

I cant think about turning 34, or that its been over 4 years of trying to get pregnant. More and more people around me in real life have become mothers, some know my journey, even they dont help. I hear things like " you can never sleep in again" "it is so much work to have babies" "havent watched a movie in ages". I bite my lips and hold that angry retort where I say I would trade it all in without a second thought. What is the point? They are not going to get it, are they?

One step at a time, one day at a time, its the only way I know to make it. So for now, I wait for the next step AF and focus everything on that.

Hemat-oh-my

Hematoma, such an ugly word. In the past I've associated this word with a dire diagnosis on House.

You know the one where they're trying to figure out why this patient is dying and they blurt out hematoma as the horrendous diagnosis.

My first real life brush with a hematoma happened about a year ago this time, I went in for my follow up appointment after my myomectomy and voila they found a hematoma.

My dr made it sound like it wasn't a big deal. Will wait and see what happens, he said,  minor aspiration procedure if necessary, he said.

After my appointment when I told my family, there was a massive meltdown, I think of visions of me dying were playing on everyone's minds. We can be a little melodramatic as a family.

I learned to live with the pain that felt like an invisible bruise. When the doctor said it would heal, let's wait and watch, I thought 2 months, three tops. Here I m 13 months later with the hematoma a minor version of its former formidable self but still very much there.

Imagine my surprise when I learn now that the hard knot I m feeling on my side,  the site of a long gone lovanox bruise,  is in fact,  a hematoma.  Drumroll please

This one doesn't hurt,  this one just feels funny,  like a hard pebble I m afraid someone forgot inside me.  It's become a part of my routine during the day to check for its presence,  hoping it will go away.

The thing about hematomas and living with them,  it's yet another gift of infertility.  Yep I feel like infertility is the gift that keeps on giving.

But speaking of the gift of infertility, I did argue with my nurse today. We were talking about MTFHR and I asked her whether I need it to be on bio active folate. I explained to her that I spoke to an authority on MTFHR, who said that I needed to be on bio active folate.  My nurse was not amused, and explained to me in a rather serious tone that I was on metanx already. Later dr google tells me metanx is  bioactive and I argued with my nurse for nothing.

Yep so that happened.

The indignity of Infertility

I grew up in India and moved here as a teenager. I was lucky because even though I was born a girl in India, I was spared some of the deeper indignities of being just that, a girl in India. My family never seemed progressive to me but it amazed me as I grew up just how progressive they were in things that mattered. 

Imagine getting your period, its a rite of passage, isnt it? from being a girl to a woman. Well in India it is Step 1 of shame, since most religious ceremonies, places, etc do not allow women to enter or participate during their period. You have to declare, often to family members, friends, and teachers that you have your period and you cannot participate in something. You have to sit out, as you stand out with your lack of participating. 

Imagine not being able to go near the christmas tree on christmas morning because you have your period? Yeah something like that.. 

It wasnt till a few years after starting my period that I learned, that my friends endured a deeper hell of their own in a ritual that my family had abolished. They were in essence untouchable during their period, had their own seperate utensils and bedsheet they used to sleep on the hard tiled ground, couldnt use their own bed even. They couldnt touch anything in the house and no one could touch them. It was horrifying. My grandparents explained to me that it was a ritual, designed to help give women a break during a painful period that had been turned into something so corrupted and abhorring. 

It was years later that I realized, I was very lucky to be born at all, since such a large percentage of girl children even today are aborted in female infanticide in India. 

Becoming pregnant, giving birth are all such miraculous experiences that infertility corrupts for us. There is deep indignity in Infertility as you go week after week, for invasive procedures, for trans vaginal ultrasounds, hysteroscopies, hysterosonograms, hysterosalpingrams, inspections, pap smears. I lose count but you get the idea.

Once I read an article in Huffington Post where a woman talked about the horrifying experience that was a trans vaginal ultrasound. She was newly pregnant and likened it to being violated. 

Is it violating? maybe.

There is some deep resignation as you walk in week after week, undress from the waist down and get ready for the ultrasound. Some days I have an audience at my RE's office as they seem to be trying to find a new ultrasound tech and training them. 2 or 3 people were present when they thought I had an ectopic pregnancy because 2 eyes are better than one. Do I mind they ask, I shrug and say do what you have to.

 From the physician assistant that did my pap smear to the nurse that did my iui, the medical assistant that assisted during my d&c. They have all had a first rate view of my private parts. 

Some days I get frustrated at having to "spread my legs" again and again. DH was shocked once when I phrased it like that, but that in a nutshell is infertility. You do it again and again because you dont have a choice, & I dont mean what you might think. No I m still talking about getting ultrasounds and other invasive procedures, spreading your legs for them. 

I took for granted the indignity of being on a school trip and having to sit out because you cannot attend that ancient historical site that just happens to be religious in nature. I accepted the indignity of infertility with the procedures day in and out. Where do you draw the line though? Where is the fine line between sharing and not being ashamed of your infertility and your right as a woman to discuss bodily functions to privacy? My decision, that fine line lies in my decision and my choice. It has to be my choice to share, my choice to broadcast my treatments or lack of, my choice to discuss my infertility, MINE. 

Yesterday in a misguided attempt at worrying about me, DH shared details of my upcoming hysteroscopy with both sets of parents. I was appalled, it wasnt his to share. I suffer enough indignity with infertility without my private parts becoming dinner conversation. PRIVATE, not for public discussion.

Isnt it hard enough already without losing my choice in the process too?

Can I let go?

It is the first day of Paryushan for Jains. (My religion is Jainism, a little known religion originating in India, I am married to a Hindu, so I tend to straddle both worlds).

This 8 day long festival is unlike most religious festivals I know of, for it involves introspection, meditation, self control, penance and forgiveness.

I know, I know, for someone who claims to be an atheist or not religious, I talk an awful lot about religion. I also think even more about religion and where I stand with it. I stand usually forever confused.

I have often stripped away the rituals that have invaded the religion over the centuries and tried to reach the basic tenets, non violence, peaceful co-existence not just with people but the environment, spirituality and the essence of doing no wrong. I try to live by those principles and be a good human being first and foremost but yet I know I fall short. 

Anyway, these 8 days, I dont follow the dietary guidelines or the fasting rituals anymore. I may not goto the temple but I do force myself to reflect. 

I do force myself to reflect on the year that has just passed, to question whether I was a good human being, whether I have done everything I could to help people and tried to not intentionally hurt anyone.

The most important thing, I try to forgive. I try to forgive those grudges I have long held, to let go of the anger that is often building up inside me. When I utter those words out "Michami Dukkadam" I expect to honestly beg forgiveness from the world for intentionally or unintentinally causing harm and when I utter them in front of the mirror, to forgive myself.

For the last few years, just like this one, I know that I will not be forgiving myself. I am not ready. I am not ready to forgive myself and my body for the pain that it has caused me and those around me. I havent forgiven myself for failing at pregnancy, for its not motherhood I failed at. I never had a chance.

I will try, like the rest of the year, I will try harder during this 8 days to try and let go of some of that anger that is always simmering just under the edge, the anger that uses progesterone as an excuse to erupt.

Today as I began reflecting on my year, I realized I have one more person I am going to struggle to forgive, my brother. He has rail roaded and bull dozed over everyone's emotions in my family. He has hurt everyone and I am more angry over the pain my family felt than the pain I may have felt. I know I will not come close to forgiving him in these 8 days but I have to start, for me, not for him. 

He doesnt seek my forgiveness but I have to give it to him because its not fair to me to hold this anger or pain within me.

So I am going to spend the next 8 days thinking about my past year, my ttc journey and trying to let go of something I have clasped so tightly my proverbial knuckles have turned white. I may fail but I have to try.

The other wait....

Sometimes an anomaly becomes a habit and no longer feels out of place. In fact when things go back to normal, that change takes some getting used to.

I dont know how long I lived with my fibroids, but I have lived with irregular periods for 10+ years since college and stress and the advent of all nighters, caffeine and junk food to my diet. 

The fibroids were first discovered with my first pregnancy and removed in July 13 with a laprascopic myomectomy. 

It wasnt until these fibroids were removed and AF resumed gradually that I realized just how much they had been impacting my life.

The horrible lower back pains starting a week before AF, the sore boobs, the cramps all went away. It used to be that I used to take tylenol for strong pain long before my period started. Suddenly I found myself free, of all the pain and symptoms that I had accepted as a part of my life. 

My periods have been very short for the last ten years, and got shorter now lasting maybe 3 days.

Why am I thinking about this? As I wait for AF after stopping progesterone, its weird to be an adult afraid of being caught completely off guard. I have no symptoms preceding AF anymore, it doesnt co-operate and appear on a Sunday like clockwork for years (even if it was 2 or 3 months late, it was always Sunday). 

I dont miss the fibroids and the hurdles they represented in my ttc journey, I dont miss the pain, but I do miss having some warning that AF was going to grace me with her presence.