Browsing Tag

endometriosis

when life is really, really hard

[content note: depression]

I found that picture about a year ago. I’m not sure why, but searching for period-related humor when blood is coursing like a river out of my vagina makes me feel better. I try not to laugh too hard, because laughing hurts– instead I keep it to “dour chuckle” level. But, it’s coming again next week, and like always I’m running around simultaneously trying to ignore it while doing everything I can to prepare for it. It takes a lot of preparation– I have to write three posts and schedule them (I usually post things the day I write them), cook a few things that will keep me and my partner fed, and make sure that I have food I can eat while laying down. The house has to be spick-and-span because it turns into a nightmare that makes me feel even worse because I’m wandering around making messes that I don’t have the ability to clean up, and the night before it starts I put ginger ale, painkillers, poptarts, heating pads, books, headphones, and laptop next to the bed.

Every month, it feels like such a stupid thing to get stressed out over, but I do. I have to plan to be a bed-ridden invalid every month, and it drives me nuts. When the notification pops up on my phone that it’s time to take my NuvaRing out, the first thought that crosses my mind every time is shit that’s NOW how did it happen this fast?!

And then there’s also the itsy-bitsy part of it all that I’m going to be in literally mind-blowing amounts of pain. I am in so much pain there are moments when I cannot see, when I cannot hear, when I cannot breathe. And every month, everything inside of my brain starts screaming at me how in the world can you stand this every month, this hurts so goddamn fucking much. And I’m laying in bed, screaming, and all I can think is dear ever-loving fuck this is never going to end, is it.

~~~~~~~~~~

This winter I was diagnosed with costochondritis. I’d been experiencing low-level chest pain for about a year, but it finally got to the point where I couldn’t walk or sit up for extended periods of time without it getting more than just annoying. My doctor handed me the diagnosis and the only treatment: take ungodly amounts of Advil and lie still until the pain goes away. It’s gotten back down to manageable levels, but the past few weeks have really done a number on it– I’ve been traveling pretty constantly, and my chest is letting me know that it is done. I spent all day on the couch yesterday, alternating between heat and ice and playing Hearthstone, and when my husband came home I had to ask him to do every single little thing for me. Honey can you get me some water honey can you move this laptop honey can you . . .

And everything inside of my brain starts screaming you are a burden you are weak you don’t contribute anything you just take and take and take and take.

~~~~~~~~~

My mother, my maternal and paternal grandmothers, and my great-grandmother all have fibromyalgia. My mother was first diagnosed with it when she was about the age I am now, and I’m starting to notice things. Little things, like waking up in the morning feeling like I haven’t slept and I’ve been run over by a truck. Feeling like random spots on me are bone-deep bruised, although there’s nothing there and I haven’t done anything to it. Intense, vivid dreams. Mental fogs. This weekend I did all the makeup for the bridesmaids in my sister’s wedding, and that night I couldn’t move and could barely breathe– after doing nothing, or what should have been nothing, but is apparently now a big deal for me.

I’m laying on my parent’s couch, hating every second of feeling so weak, and now I’m staring at a lifetime of constant, never-ending pain, and my brain starts screaming you will never escape this.

~~~~~~~~

While I deal with triggers and times that I refer to being in a “funk,” I’ve been extremely fortunate not to have struggled with serious depression. I’ve had suicidal thoughts, but not suicidal impulses, and those times have been brief and related to periods of extreme stress or emotional trauma. I’ve never had to fight a constant never-ending daily battle with mental illness, and I am extremely grateful for that; but because of everything I’ve just described I feel that I can understand what it could be like.

Every day I have to make a monumental choice about something that seems like it should be relatively simple for normal people. Because I have chronic pain and illness, I have to fight every day not to give in to it, not to let the FM and the costo control everything about my life. I do things, even knowing that they will hurt, because the alternative is do nothing. And I go about my life every day knowing that the same will still be true tomorrow. Tomorrow, I will hurt. Tomorrow, I will be tired. Tomorrow, I will not want to get out of bed. Tomorrow, there will be pain. Always.

And, I have to fight all the mental baggage that comes with it. I have to acknowledge things like you don’t contribute or you’re a burden as the lies they are, lies that have been given to me both by my culture and by a jerk-brain fed by insecurities and doubts. Lies that feel so true.

What I can’t imagine is going through something so painful while also having to fight the lie that suicide would be a release– a lie that my own brain is convinced is absolutely true. Those among us who fight severe depression– and if they are breathing, then they are fighting with all of their might– are dealing with the same things as I am, in a different way. But, I’m lucky. I wake up in the morning and even when I am in breath-taking pain I can feel my partner wrap his arms around me and I am happy. My friend comes over and we watch Rizzoli and Isles together while I’m curled up under a fuzzy blanket and high on painkillers, and I’m laughing because even with the pain, life is good.

I can’t even imagine going through life experiencing all the pain I do and not having those touchstones to latch on to.

Which is why I’ve been crying and shouting off and on for the past two days. When I heard that Robin Williams had passed . . . I’m not sure why his death has affected me so deeply, but I can’t help but think of all the ways his art has changed my life and then start crying. And then when I hear some of the stupid things that have been floating around the internet, I just want to scream.

My pains, because they are physical, would never be treated that way. I would never be called a coward, or selfish. If one day a cyst ruptures and it causes a systemic infection and I die, no one is going to hear about it and think what a selfish thing to do, dying like that.

August 13, 2014 by SamanthaField

Feminism

hormonal therapy: medical treatment and birth control

On Monday, Rachel Held Evans ran “Why I Use Birth Control,” which featured my story with ten other women. What I wrote for her focused on the fact that I use the NuvaRing to manage my PCOS/endo and painful periods. I focused on that part of my story for a few reasons; first, it’s the only reason I’ve really had to use the NuvaRing up until recently, and second because the time in my life when I couldn’t afford it and had a cyst rupture was extremely relevant to what’s happening with the Hobby Lobby decision.

However, I’ve been married for a year and a half, and both I and my husband would prefer not to use condoms, especially since I’m allergic to latex and the non-latex options tend to be more expensive. We don’t have to, fortunately, because I have hormonal contraception that I tolerate fairly well. This reason is also important to talk about, because I don’t want to have children right now. I’m not even sure I want to have children at all, and I figure as long as we feel that way it’s probably a good idea to wait.

Handsome and I are in the position where having a child would be fine if I unexpectedly became pregnant. It would interrupt a lot of our plans and I wouldn’t be happy having a baby so far away from our families (I grew up away from my extended family, and I don’t want that for my children), but unlike Darlene Cunha, having a baby wouldn’t send us spiraling into poverty. But … we really don’t want kids right now, and we’re lucky that our health insurance covers the NuvaRing.

Jessica Valenti argued in The Guardian that “women like sex” and asked us to “stop making ‘health’ excuses for why we use birth control,” and she has a point. I want to have sex and I don’t want to have a baby: hormonal contraception is the perfect option for me, and I shouldn’t pretend that’s not at least half of the reason why I use it, and why I would continue using it if my PCOS/endo miraculously disappeared. The fact that most of the women who shared their stories on RHE’s blog focused on taking hormone therapy for medical reasons instead of as contraception also received some criticism, and I believe that is valid. If I could write my section again, I’d include “not wanting to have a baby” as one of the reasons why.

Conservatives, especially conservative Christians, the Religious Right, and the Christian fundamentalism that is so deeply integrated into the culture that Hobby Lobby is a significant financial supporter of are completely horrified at the idea that women might have sex without “consequences”– because that’s all a baby really is to them, a consequence and a punishment for a woman enjoying her sexuality outside of male control. They have no right whatsoever to assert their patriarchal system onto me and make my sexual choices for me, but oh do they ever desperately want to. For that reason, I believe that Valenti is right– saying “oh, but virginal, good women need BCPs for medical reasons!” isn’t going to do much when the conservatives and social regressives are obsessed with controlling what a woman does with her body.

However.

I don’t think we need to stop talking about the legitimate medical reasons why a woman or trans man might need to use hormonal therapy. It’s not a “health excuse”– it was the only thing that allowed me to function for the bulk of my life. And, personally, I am horrified that so many “Christian corporations” (I’m still in shock there is such a thing now, the whole idea is so essentially anti-Christ) are willing to sacrifice the health care of their female employees because of a completely unfounded belief about how hormonal contraception functions. That so many women desperately need hormonal therapy doesn’t affect them. Conservative Christian culture could not care less about women, and this proves it.

Conservative Christians want to make sure that women are punished, controlled, and enslaved by their uteri, and they are willing to sacrifice the health of every single woman who needs hormonal therapy to do it. They do not care about me, about the millions of other women like me. My pain, my suffering, means nothing to them when compared with their “deeply held religious belief.”

That’s why I think we need to talk bout both. Women deserve to think about if and when they want to have children, and they also are people with a specific medical need that deserves treatment options. That conservative Christians want to refuse us both says more about what their priorities are more than anything else– and loving Jesus and his children isn’t among them.

Update 7-17-14: Some have asked what I’m referring to when I say “conservative Christian.” Here on my blog I have chosen to use the terms “traditional theology” or “Protestant orthodoxy” to refer to theological conservatism, and distinguish between that and the theology of fundamentalism and evangelicalism. “Conservative Christian,” in the context that I have chosen to use it, refers to religiously-motivated social conservatism, as typically defined by socially conservative (and usually evangelical) Christians. If you identify yourself as a conservative Christian but you do not agree with those who would deny women necessary medical treatments and procedures, than the statements I’ve made here do not apply to you; feel free to disregard.

July 16, 2014 by SamanthaField

Theology

living reminders of uncomfortable realities

I wrote this post a few weeks ago and hesitated to put it up, but after reading R.A. Savilla’s account at Rachel Held Evan’s blog, and the overwhelming response to it, I’ve decided that this needs to be said.

The story of Abraham and Isaac, if we’re being honest, makes Christians uncomfortable. If you’re not the least bit bothered by God telling Abraham to perform a human sacrifice and Abraham being willing to do it, I’m suspicious of your humanity. God told Abraham to slaughter his son as a sacrifice, and he almost did it, hoping against hope.

I’m still not entirely sure what to make of this story, but I am familiar with what many people consider to be the triumphant ending — at the very last moment God sends an angel to step in, and he provides a ram for the sacrifice. It’s become a narrative we use to talk about our lives– sometimes, it looks like God is asking us to do something so difficult we can’t even wrap our brains around it, but he will always swoop in at the very last moment and provide a solution, or to save us from whatever we were about to face. And hopefully he’ll do this in the most spectacular, most miraculous, way possible.

Many of our narratives revolve around Abraham in this story– doing the hard thing that God asks of us, even when we don’t fully understand why. We don’t have all the information, so we just have to trust that there’s something more going on, something larger at stake.

But I’ve always wondered about Isaac.

We don’t know much about him in this story– we don’t know how old he was, we don’t know how much he understood about his father’s God, we don’t know how much God has told Isaac about the Abramic Covenant. All we have is a question:

“My father, behold the fire and the wood, but where is the lamb for a burnt offering?”

We don’t know how he responded to Abraham placing him on the altar he had just helped his father build. We don’t know if he was begging his father not to do this, not to kill him. We don’t know if he only cried, or if he did anything at all.

Most of all, we don’t like asking the question of the moment– where is the lamb for a burnt offering?

~~~~~~~~~~~~~~~~~~~~~

I have a medical condition called Poly-cystic Ovarian Syndrome, complicated by IBS and endometriosis. This means that, for most of the month, I experience uncomfortable, but most of the time, manageable pain. It’s a dull ache that most of the time I can ignore. I’ve learned to live with it– to not eat a bunch of dairy, to make sure that I drink as much water as possible, to eat enough fiber, to walk and move even when I don’t particularly feel like it, to not jostle myself, to never run, to take things slowly and don’t push myself. I always have to sleep on my right side– if I lay on my left side, the internal bleeding caused by the endometriosis shifts to a new spot, and the pain intensifies.

But, during my period, all hell breaks loose. I live in absolute dread of my period coming. I try not to think about it too much, because simply thinking about it makes my anxiety skyrocket. I start taking anti-inflammatory meds the week before, slowly building up to 800 mg a day. During my period, I have to take hydrocodone just to survive, but it barely even touches the pain. I take it not because it actually reduces my pain, but because it helps me not care so much.

I can’t move, hardly at all. If I’m home by myself, I keep the painkillers and food I can eat while lying down next to my bed. I try not to drink that much– if I have to go to the bathroom, I have to crawl there, and going to the bathroom is so excruciatingly painful it terrifies me and I usually end up sobbing because the pain is so bad. At moments, the pain is breathtaking, and all I can do is cry. There have been times that I have actually passed out and gone into shock from the pain itself. It starts out pretty localized– but, over the first two days, it spreads all the way up to my ribcage and down to my thighs. I have trouble sleeping, and, occasionally, I’ll have cramping so bad it wakes me up– you can put your hand on my stomach and feel the spasms. Sometimes, you can see the cramps clench everything in my lower abdomen; you can see things jerking and twitching just below the skin.

I don’t usually talk about this.

Over the years, I’ve built up a c’est la vie approach to my medical problems. I shrug it off most of the time if anyone asks, which is rare, because I tend not to tell people.

I learned not to talk about this the hard way.

In small groups, in churches, when people ask for prayer, there have been times where I’ve mentioned my health problems. A long time ago, I used to ask people to pray that they would simply go away, that I wouldn’t have to deal with it anymore. I used to ask that they would pray that God heal me. But, now that I’ve been dealing with this for over ten years– about 150 periods– if I ask for prayer from anyone, it’s simply a prayer for strength.

I’ve stopped doing even that, usually– because then many people will confidently assert that no, they won’t pray for strength. I don’t need strength– I need God’s healing touch on my life. “The effectual, fervent prayer of a righteous man avails much,” they’ll chirp with a promise that I’ll be on their minds every morning. And, a few weeks or a few months later, I’ll bump into them again, and they’ll inevitably ask how I’m doing. And I’ll shrug and say, “oh, about the same.”

I’m a living reminder that God doesn’t always answer prayer.

Oh, they’ll toss out the typical “sometimes God says wait,” but when you’ve been waiting for ten years and it’s only gotten worse instead of better, you have a tendency to think that’s a load of bunk. Or, their eyes will narrow slightly, and they’ll inform me that if I only believed, I would be healed.

I don’t tell them about the darkness– I don’t tell them about the fear and the terror that grips me in the week leading up to my period. I don’t tell them that, sometimes, when the pain is so bad I honestly don’t know how I can stand another second of it, that most of the time, I start screaming at God, at life, at the pain, at everything. I don’t tell them, that in my most desperate moments, that I pray for God to kill me. That I beg God for an answer– where is the lamb? Where is my at-the-last-moment spectacular rescue? Where is God reaching down in my life and sparing me from this?

The short answer– there’s never been, and he never has. There probably never will be.

On most days, I’ve accepted that.

And that makes people uncomfortable.

Because I’m the reality that life is largely a very painful experience, and, most of the time, it doesn’t go away. There’s nothing we can do to wish our lives magically better– we have to deal with the daily aches, the common pains, and move through our lives knowing that there are occasionally excruciatingly painful things outside of our control. I’m the reminder that no matter how much we think of ourselves as survivors, as fighters, that sometimes, it’s a battle with no end in sight– ever.

I’ve talked about my experience, but I’m actually rather lucky. My ongoing pain is something I can hide rather easily. I might disappear from church occasionally, but other than that no one really knows unless I tell them. But there are many, many people who can’t hide it, not really– but they try. They do everything they can to downplay their pain. They’re ashamed. They’re embarrassed. They don’t want to make the other people around them uncomfortable. Very often, these people are blamed for their pain– they must have done something to deserve it. God is punishing them. They just don’t have enough faith for God to heal them. Their prayer life must be weak. Maybe they’re not even a Christian.

And that’s wrong. Because we should be coming alongside the people who suffer, the people who mourn, the people who are in pain. And yes, it’s uncomfortable, and yes, it takes work, and yes– it necessarily means that we must accept the reality that not everything can be fixed. It means sacrificing our hero complexes and sitting down with that person in compassion and empathy– and realizing that we probably have no idea what that person is going through, but we don’t have to.

We just have to be there.

June 11, 2013 by SamanthaField