Sunday, October 22, 2017

Rally. Resist.

Sometimes I have to take a deep breath and a hard look at life when things aren't working out. This time I came to two conclusions:

1. I probably have PTSD

2. If a good chunk of my negative thinking, paranoia, fear and anger are caused by mental illness, I shouldn't feed that beast.

PTSD is maladaptive coping mechanisms gone wild. When my doctor told me she didn't think I had anxiety, I was like, well what is wrong with me? Because something has been increasingly interfering in my ability to function as a human being.

Then I made the decision to let everything go. Negative thoughts? I will resist thinking them. The same with angry thoughts or paranoid thoughts or fearful thoughts. I decided that worrying about the outcomes doesn't change them. There is no use in thinking about the realities that could be because thinking about them creates a cycle of negative thinking. Even if some of these thoughts are true or have value doesn't matter. The only way I can make it through life is the focus on the positive. That's not being naive, that's just what I have to do to survive.

One of the negative beliefs I was holding onto was that I would never be able to relate to anyone because of what I had been through. It's rare to have multiple miscarriages. Of woman who do have multiple losses, many have a live birth somewhere in between. Very few will have this many consecutive losses. This belief isn't true at all. I can still relate to people because I have other experiences that are totally normal. It's true that many people won't understand what it's like to lose so many, but if I focus on what I do have in common with people I can still build meaningful relationships. With a little bit of imagination, most of the people closest to me have been able to understand how I feel and why.  I don't have to build my life around pain.

I've been thinking a lot about how many negative belief systems I've unconsciously created and how it's possible to disassemble these. Positive or negative thinking is something like regular exercise or healthy eating. It's easy once you make it into a habit. I never wanted to be a negative person but this way of thinking crept up on me without my really noticing it. So many stressful and traumatic things happened over a relatively short time period. Part of the reason my life fell apart was because I got knocked off course. All of my healthy habits were disrupted. In the end, I became my own worst enemy but I don't have to be. Only I have control over my life and I can decide what kind of person I want to be. I need to try to get back on track.

I'd like to say that these revelations and decisions just magically fixed all my issues. That is not true. I have a long road ahead. I still feel sad some days. I still feel angry and my mind is always clanging at the door to remind me of my worst fears. The best defense against this is to rally and resist. This may be difficult and it may take time, but I'm certain that I can do it. I've done it before.  

It's going to take me some time to sort through what thoughts have merit (that creepy guy that everyone else loves but sometimes makes my skin crawl) or which reactions are appropriate. I'm pretty sure cutting out some people from my life that weren't healthy to be around was a sound decision. I'm less sure that my anger towards others wasn't at all called for. All my relationships have been impacted. I'm most concerned about my husband and daughter. I want to do what I can to start to strengthen the parts of our relationship that have been weakened when I became unwell. I booked an appointment with a therapist who I'm hoping can help me sort this all out. In the meantime I'm focusing on the things that matter most, my husband and daughter. Some things that slipped by the wayside this year like healthy eating and regular exercise are now back on my radar. Whatever happens, my family needs me to be ok and I want to be ok for them because I love them.

I'd like to thank everyone who left encouraging comments on my last post. Part of healing and sorting out my thoughts has brought me back to writing and I am grateful to all the people who've been reading here over the years.

Thank you :)


Sunday, October 15, 2017

The inside, the outside

Right now I'm walking a tightrope between anxiety and depression.  After my 6th miscarriage, about six months ago, I was generally ok enough to function. I could get out of bed, go to work, exercise, parent, clean my house, walk the dog. I had days where I struggled and days where I struggled a lot. But mostly I was doing an adequate job of managing my emotions. I was hopeful that a referral for another reproductive endocrinologist was going to illuminate whatever hidden issue was killing all my unborn children.

The last reproductive endocrinologist I saw in Germany had told me that there wasn't anything wrong with me besides an iron deficiency (no doubt caused by blood loss) and a bit of high blood sugar. But since I was pre diabetic instead of diabetic there wasn't anything preventing me from having a live birth. I started taking medication that took care of the high blood sugar. She also said she couldn't find any evidence of the congenital uterine anomaly reported by the surgeon who performed my c-section. I was given the clear to try to get pregnant again as long as I was taking iron supplements.

That doctor ended up being so, so wrong. That fetus died. It was number five. My next doctor was American and she performed a test which confirmed a congenital uterine anomaly was present, but she told me this anomaly would not interfere with a future pregnancy. I was once again given the green light to get pregnant again. That fetus died. It was number six.

A familiar pattern had emerged. I would go to a doctor telling them I thought something was wrong and they would tell me everything was fine. They all said I was young and healthy and could carry a fetus to term. Then I would have a miscarriage. This has happened over and over and over. So many times. So many dead. So many appointments and questions and a great deal of frustration and suffering on my part. But these doctors are all I have. They're my only hope so I have no option but to trust them. Even though they are always wrong.

Hope has kept me going through years of loss and unspeakable grief. I thought if I just tried hard enough, if I was willing to suffer enough, fight enough, persist enough, someday I was going to have another baby. I was willing to makes whatever sacrifices were required. I loved each and every unborn spark of human life. From the poppy seed I lost at five weeks to the tiny perfectly formed male fetus I lost at ten weeks. I can feel their terrible absence through each breath of the day. Having a carried one baby already, it was impossible for me to diminish the gravity of what was gone. Everyday I can feel the missing pieces pulling at my heart and mind.

The second reproductive endocrinologist was American. He enlightened me to the inconclusiveness of previously done tests which had confirmed a congenital uterine anomaly. He believed that was the issue and that it could be corrected with surgery. Having been mislead by so many doctors and having had so many contradictory diagnosis in the past, I was skeptical. But I went for an MRI because I was still willing to do anything.

When the MRI results came back positive and I was told I needed surgery and that this surgery was the final answer. I was still skeptical but I was also elated. I finally had a diagnosis and a treatment. This is where things started to go downhill. The reproductive endocrinologist wouldn't perform the operation for some very convoluted insurance reasons. My medical group referred me to another doctor who couldn't operated either. Suddenly I was trapped in a hellish cycle of possibly having a treatment but not able to find any doctor who could operate that was covered by my insurance. Months went by.

When I finally found a surgeon who could help me she requested to see all the original test results and declared all the test inconclusive. Surgery might be an answer or it might not. They wouldn't know until they actually did the operation. Having found a doctor, now all I needed was a referral from the medical group. This seems like a simple thing, but as weeks past I was issued three different referrals. All were rejected because they were incorrect or incomplete. I spent hours on the phone with the health insurance, medical group and doctors trying to understand what was happening to me. The hope that had sustained me throughout the last years started to die. And it's death had terrible consequences.

Suddenly I went from an organized, energetic, type A personality to something completely unlike myself. I had nightmares. I was constantly anxious. I was paranoid and wrestled with my rage. I was impulsive and reckless. I couldn't tell if my feelings were real or if they were a product of the onslaught of hopelessness and fear. All I could think about was the still unbeating heart of fetus number six. That black and white ultrasound was seared behind my eyes. I kept hearing my ob/gyn at the time telling me everything was fine and then the cold shock of seeing that terrible still image and the awful knowing that she was wrong. I felt like I was falling, completely out of control. I was dissociated from everything.

To make things worse, many of my coworkers were welcoming new babies into their lives. While I love children and especially love babies, I couldn't stand the sight of real baby. Seeing one of my co workers new infants sent me into a strange state. I hid in a conference room while I alternatively fought not to cry and fought not to be sick. My emotional distress had become so big it was manifest physically. My heart raced and I would be covered in a cold sweat. I couldn't go to work but I couldn't stay home with my crazy brain. Conversations with medical staff sometimes left me speechless. I couldn't talk because I was too afraid to open my mouth. I thought I was might scream or start to wail. I wasn't a real person.

 It was during the worst of this time that I became estranged from my mom and my therapist who'd helped me through my grief went on an indefinite leave. I started to pull away from people who made comments that minimized my experience. It seemed to me that no one understood the magnitude of what was happening to me. I was swept up in a river and there wasn't anything to hold onto.

I couldn't understand why my medical group wouldn't issue an acceptable referral. I tried to understand why people wouldn't help me and I couldn't. I'd already been through so much. Why wouldn't they give me the key that would allow me to finally have a living child? I was shut down. It started to feed into my paranoia. I didn't trust anyone. My mind would hatch conspiracies that I knew probably weren't true but I couldn't stop thinking about them. I started to have recurring thoughts that people were against me, that people were trying to destroy me. When the anxiety got to be too bad I found a doctor and asked to be prescribed a short term anti anxiety medication to tide me over until the issues with the medical group were worked out. I thought that would fix the issue.

The only thing that is worse than anxiety is depression. As bad as anxiety made me feel, it never drained me of life like depression. I was suddenly irritable and miserable. I could sit and stare at a wall for a hours with no desire to move. I started to have suicidal thoughts, which is ridiculous because I love my life and love myself. I could no longer stand to be. I wanted to wink out like a star. My normal coping mechanisms for dealing with feeling down couldn't touch this blackness. I couldn't go for a run if I couldn't even move from the spot I where I was rooted. The anti anxiety meds were making things worse. I stopped taking them, but I didn't feel any better.

Something terrible had happened to me and it was getting worse. I wasn't concerned with having a baby, suddenly I was worried about surviving life. It felt like I would have a heart attack or jump off a bridge. My mental health had finally fallen apart. And I still don't know what's wrong with me. Tomorrow might be better, or it might not. But in true form, I continue on with the outward appearance that there isn't anything to see here at all. You'd never know from the outside what a mess is on the inside.

Friday, October 6, 2017

The dream

Imagine you are on a plane. You want to go home but the plane crashes. This is a shocking and traumatic event, but you make it out alive in relative good health. People try to support you as best they can. Everyone is sorry you were in plane a crash. When you think you are ready, you get on another plane because you still want to go home. The air carrier says planes almost never crash twice and three times is unheard of. But this plane you are on crashes too. Again, you make it out alive. Everyone reassures you the plane won't crash again. The airline insists they have done extra safety checks the plane checks out. They say the plane is safe.  Then the next planes crashes, and the next and the next. Each plane crash leaves you changed. You keep making it out alive but now you have some physical injuries too. Once you think you might die.

You start to develop anxiety about planes and airports. You wonder if something is wrong with you. Maybe you're cursed. Maybe god is punishing you. How could someone possibly be in so many plane crashes? This is proof of your own worthlessness. Maybe you don't deserve to go home. You feel that something is wrong but everyone is telling you that planes are safe. Other people get on planes and fly home all the time. You can't understand why the planes have crashed. No one has an answer.

You decide to call customer service but every representative gives you a different reason and none of them agree. Someone tells you one plane had a bad engine. Another person tells you that the planes never crashed at all. You can't sleep, you can't eat or some days you eat too much and sleep too much. Sometimes you say things you shouldn't. You can no longer relate to the people around you because they haven't been in plane crashes. Even if they have been in a plane crash it was only one and then they were able to fly home. Some people can't get on planes at all. You think maybe they will understand you but not being able to get on a plane is completely different from being in a plane crash. You are entirely alone. You feel like an alien.

One day someone is complaining about standing in line and you want to scream at him because it's just a line and what does a line matter when planes are crashing around you all the time? You feel like everyone around you is blind. That they are caught up in meaningless worries about nothing while you are drowning in fear. You are desperate to go home. You don't want to be on a plane but you don't have any choice. Your plane crashes again. You think you can't endure anything else but somehow you have survived.

At the airport someone tells you there is hope. You can take a bus to another airport where the planes don't crash. You are filled with relief and joy. You try to buy a bus ticket. Everything is finally turning around. But when the ticket agent sees your passport they stop being polite. They say there is nothing wrong with your passport but you have to buy the ticket elsewhere. You go to another ticket counter but they won't sell you a bus ticket either. You start to feel afraid. You go to another counter and they apologize and say they can sell the bus ticket. You buy the ticket and feel happy and safe.

When you try to get on the bus the driver says you have the wrong ticket. You can't believe it. It's like being in a plane crash all over again. Suddenly you can can't speak. Your heart is racing and you are shaking. You go back to the ticket counter and buy a ticket but this one is wrong too. You start to feel like this was nothing but false hope. You will never go home. You will be stuck in transport hubs for the rest of your life, watching other people going home but never able to go home yourself. No one will sell you the correct ticket. You start to feel like people are in collusion to keep you from going home. You start to feel crazy. You know something is wrong but everyone you speak says things are fine. You feel like people are lying to you but you don't trust yourself anymore. Now you are paranoid.  The world feels like it will devour you at any moment. It's like being torn apart by hungry dogs.

You've been in so many plane crash and sold so many bus tickets everyone is bored with you. People you trusted betray your trust. You blame yourself. They don't want to hear you talking about wanting to go home. They find you depressing. People start to distance themselves from you. They're not sure if they're sorry for you anymore. Maybe there is something wrong with you. Normal people aren't in that many planes crashes. They're happy and you are bringing them down. You have to pretend like the plane crashes didn't happen but you think people can still tell there is something wrong with you. Sometimes you get very angry that everyone wants to pretend plane crashes don't happen. You feel like they're saying you aren't real, that they are denying your humanity. You lash out at them and they move away even further. You can't understand how so many bad things could have happened. Your life feels like a nightmare.

You stop feeling anything. It's like you are a phoenix raising from the ashes. You are different now and you can never back to the way you were. You have endured so much fear and anger and sadness that now you are invincible. No degradation, dehumanization or humiliation can knock you down. You aren't the same person you used to be. It's like you were walking about blind and now you see. You don't care about the same things other people care about. You've been stripped down to base survival instinct.

And your one remaining drive is to make it home alive.

That's what it's like.

Monday, July 3, 2017

In the desert

Life starts with a heartbeat. On an ultrasound it always makes me think of a tiny flame flickering in the wind. Beating to stay alive, beating against the chaos of the universe. Hundreds of thousands of cells, splitting and multiplying and growing despite the odds. Life is sacred, life is a rebellion, life is a resistance against death. Death is the natural state of all matter, the end of all things. An end that cannot be escaped. I will die, you will die, all will die.

Children are our immortality.

But only if they live.

In my mind I can see a picture of a still heart. A heart no longer beating, no bigger than the glistening jewel of a pomegranate seed. Rendered in fuzzy black and white. The end of a story that had hardly begun. The end of a future I visualized only in my head. A baby boy who would come to me a few weeks before Thanksgiving. A perfect human just like ones I bore before. To experience lends to imagination. I know the feel of soft skin and a tiny body held in my arms. The sweet breath of a sleeping infant. The feeling of falling my chest, the hormonal love and swelling joy of a real living baby. I know perfectly the extent of my loss. That dizzying happiness has slipped away silently, leaving me with something worse than nothing, it's left me with a dead fetus encased in my womb. A burden like stone to be carried until it can be released with great pain and confusion. Doctors, a hospital, a surgery with anesthesia so when I wake up I remember nothing. The sweet relief of a process of healing after death. Now an uphill journey back to normal life can begin.

My body is in chaos. I was pregnant, now I'm not. The shock of the hormone drop is like hitting a wall, like falling from a tall building. A sickening plummet and a hard impact. I am physically sick. I am unwell. I can barely stand it. Grief wraps around my throat and strangles my every breath. But I walk, I talk, I smile. I get up and make breakfast for my family. I hold the hands of my children. I go to work. I pay the bills and walk the dog. I am like the living dead. In shock I feel nothing but can sense a tidal wave of emotion waiting to break over and drench everything with sorrow, fear and loathing. I was going to be a mother to a son that will never be born. The knowledge is a sliver that pierces my heart, hot and searing, a new reality that I must wrestle into submission. This is my life now.

I am ruthlessly determined. I am a problem solver, a goal orientated, relentless pursuer of achievement. In this desert of grief there are no enemies to vanquish. No monsters to subjugate. No problems to overcome. There is no there there. Everything is normal. My test results yield nothing. There are no answers to give, so nothing is given. No plans of action besides hope for the best. Insidious, to hope against the terrible odds. To expect different results, a deviation from a path worn deep. In my utter helplessness to change my course a deep rage blooms and grows. Bright and big, like a poisonous flower. My anger is impotent. It is directionless, turning this way and that, seeking a target. I am careful that I don't explode and send shrapnel in every direction.

I have no power. Six miscarriages in a row and I lack the ability to protect my unborn children from the nameless thief that steals their lives. I cannot wrench a new soul into the world with the force of my will. My prayers to a faceless god are unanswered. There is nothing to do and nowhere to turn. I hate, a great lake of bitterness that wells up from my heart and floods my chest. This desert is dark and cold. I am the bestial creature eating my own heart.

There, encased in my own darkness like a chrysalis, I can make a choice. I can chose to be free, to be happy. I can chose laughter. My life is still a good life, a life worth living. I have more than I lost. I can take care of myself. I can release my grief in the wind and breath easy. Now I know a secret, that grief like death is inescapable. You cannot live life without loss and within this natural order is still joy. An overwhelming joy to be alive, to be sacred. I can cry, I can light my candles and embrace my sadness but I'm still fiercely happy and ever so thankful that I have the power to turn my hatred inside out. To shake it off like an old skin.

I love and because I love I cannot lose a life without pain. The stronger my love, the more powerful my grief. And this love is a beautiful thing which I give to all of my children, both living and dead. I love you and you are worth it. So with this I can go in peace. I am invincible in love, powerful in love. My love is a gift and I give it freely.

The choice gives me back my agency. I chose to love and to never give up.

But this is only the shock. I can feel the darkness behind me, it's coming but it's not here yet. And when it comes, no will can keep me from being lost.