Living With An Open Wound

I remember getting hurt as a child. Scraping my knees. Slicing my thumb on a saw in the backyard while trying to cut enough branches to make a fort. Road rash on my side when I fell out of a wagon, towed behind a bike while flying down a hill. Skin breaks. Blood seeps out. Tears flow. Eventually, with the aid of pressure, a band-aid, or the simple miracle of human physiology, the blood would clot. A scab formed. Skin healed. Scars remained, but faded in time. Maybe someday, this will be my experience with the emotional and psychological scars of infertility. I'm not sure. Right now, I live each day with an open, hemorrhaging wound.

Everyone in my life is incredibly compassionate about this struggle. There are even a handful of people I know that have walked this same road. I wish I could articulate the deep, never-ceasing, excruciating pain that I feel each day. I desperately want someone to know exactly what I experience. All I can compare it to is suffering a wound so deep and so serious that it drains every ounce of your strength, all of your reserves, and saps you of any hope that you can move forward. I cannot compare this to the struggle of a mortally wounded soldier, but it is my emotional equivalent of warfare. And in the midst of this horrific, tragic, gut-wrenching pain, I am expected by everyone (even those who are compassionate and loving and caring and the most incredible people I know) to continue living life and moving forward and having hope. There are days where I lose the battle when I have to do something as simple as brush my teeth, never mind having to walk out the door, interact with other people, go to work, smile and nod that yes, I am doing well. Behind the facade I am face down in the dirt, drowning in a pool of my own blood. Those who have walked this road will know the complete sincerity of this statement. Those who have not, I appreciate your compassion and your acceptance that you simply cannot know how this feels until you have lived it for nearly one thousand sunrises and sunsets. 

Simply leaving the house hurts. I go to the store and am surrounded by reminders of pregnancy, babies, toddlers, teenagers, grandparents-the ceaseless ebb and flow of divinely ordained life that I may never play a part in. I experience all of the emotional depth of that statement when I stand in the store behind someone buying a package of diapers. I clutch my nieces and nephews to me and breathe in their sweet smells and my heart bursts and I wonder if there is any way I can be saved. I seek to escape the pain of the day through sleep and am haunted by dreams of caressing my pregnant belly, of giving birth, of holding my daughter who already has a name and is fiercely loved, and wake up feeling like I was hurled out of a moving vehicle into oncoming traffic. And it never, ever ends. 

I hurt everywhere. All the time. I understand how infertility leads to destructive behavior, ends marriages, wrecks families. I know why people choose to be numb.

People never know what to say. Those closest to me know that things like, "It will happen," or "Just be positive" or "your babies will come when it's time," will likely earn them a punch in the face and a sincere apology for breaking their nose. I think I have an advantage in that I am incredibly open (likely to a fault) about everything I am dealing with, so I do not hesitate to talk about feeling this way and people generally know when I am so low that not even a Harry Potter marathon can pull me out of the depths of despair. I think the best thing I have had someone say to me is simply, "I love you." That does more than anything when you are so emotionally obliterated that you can't seem to take another breath. 

Living with infertility is a hell through which few will pass, when you consider the population of the world through all time. Yet it touches most of us in tangential ways. Six months of trying to shrink ovarian cysts and get my cycles under control was absolutely terrible, but it only required me to feel disappointment. Now, as we gear up for a cycle of treatment, I have to feel the worst thing I can imagine-hope. I believe in a mind-body connection. I need to have hope and faith that this will work. But taking drugs, injecting drugs, doing an insemination, taking more drugs, and then having your heart ripped out by a negative test is more than a heart can handle. And if you do back to back cycles, you begin the whole process over three days after your negative result. It is the highest and most hellish form of torture I have experienced. Hope and promise shatter and you get to stand in the broken glass, bleeding all over while people look at you and tell you to be hopeful all over again. 

I am  hopeful right now. I am responding well to my Femara treatment, started my Gonal-F injections today for the next three days, will be re-scanned on Friday, and will finish up with a few more shots this weekend before I trigger ovulation. The tentative IUI date is Sunday. But hope is most definitely tempered by experience and disappointment. My hope feels like the last gasp for air while I am drowning before I sink away into oblivion. But it is there, and it is mine. 

I read two things last night that stuck with me. The first was a re-reading of  a series of short essays by F. Scott Fitzgerald, a man who I believe lived his entire life in emotional pain and agony. In "The Crack-Up," he penned, "and in a real dark night of the soul it is always three o’clock in the morning, day after day." And so it is three o'clock in the morning for me, day after day. 

The other was from the scriptures, more specifically, the Book of Mormon. If you do not believe this to be the revealed word of God, then perhaps accept this as a story that illustrates a larger point about resilience. The leader of a small group of people was named Jared, and as his people fled wickedness and crossed a great body of water in small ships, their small quarters were illuminated by stones that had been given light by the Lord. The wind blew furiously during their year-long journey, and though they were tossed about relentlessly and frightened and cried unto the Lord for stillness and peace, they were blown continually in the direction of their destination, and they had light. And the wind never stopped moving them in the right direction, and the people never stopped praising and thanking the Lord. And they had light continually, even in trial and tempest and through fear and anguish. And when they arrived on land again, they humbled themselves before the Lord, shed tears of joy, and recognized His tender mercies over them.

I am in a dark night of the soul. It is a night full of pain and fear. But I have a small light. And I have the love of my husband, and my family, and my friends, and my Father in Heaven. It doesn't change the fact that I hurt like hell and on good days, the best I can do is drag myself an inch closer to safety while I live with this open wound, but it does give the struggle a sense of meaning. This wound will never go away. It may change form and become an old wound, a scar, but it will mark my experiences forever. No pregnancy or adoption or perhaps a life without children will nullify what I have experienced. But I can own the pain and the experience and set myself up willingly for the punch in the gut that I might have to take in two and a half weeks, as long as I know that the pain and experience are mine to own and learn from. 

Please, if you are inclined, say a prayer for us and those others that live each day with an open wound in the deepest dark of the night, that we might see the pinprick of light that will lead us on, and someday, lead us home.

A Tale of Five Catheters

I don't know about you, but a speculum is my most favorite medical instrument in the entire world. I was so lucky, that I got to be speculumed twice in 10 minutes today. I also got to experience having no less than 5 catheters threaded up through my cervix. Aren't you just dripping with jealousy? Apologies in advance for the absolute "TMI" nature of this post.

It doesn't matter how many times you put on that flimsy little doctor's office nightgown, pop your feet into the stirrups, and display your lady parts in all their glory for a pap smear-it never gets any less awkward. Now, take yourself out of the comfort of your regular gyno's office, put yourself in cold and sterile hospital environment with people you have never met, and multiply the weirdness of a pap smear by 10, and you have yourself a delightful little procedure called a Hysterosalpingogram (HSG). 

I was terrified to have this done. I know several people who have a had a range of experiences with the HSG, and 98% of people who post about theirs online sum it up with a description like, "it was worse than childbirth," and "I wanted to die," and "I felt like my entire abdomen was on fire." So naturally, as a person with some fabulously convenient anxiety issues, I have spent the last 10 days freaking out about this procedure. I expected the worst pain of my life. I expected to kick the doctor in the face with my rubberized sock-clad foot, leap off the table, and tear down the hallway, knocking carts of medical supplies over as I made my great escape from the hospital wearing only a flimsy johnny. I am happy to report that this did not happen.

It was awkward as all get out. I would even venture to say that next to the bladder infection/UTI from hell last summer, it was my least favorite medical experience ever. But I did not want to die, or have a flaming uterus, although I did come close to kicking the doctor in the face. Thank heavens I didn't actually do it. But it was sort of a comedy of errors, bordering on, "you have got to be freaking kidding me!" 

BJ took the day off from work and came with me. Which was both for support, and necessary, since I was buzzed on 1000 mg Ibuprofen, 1000 mg of extra-strength Tylenol, and a 1 mg of Xanax. My OB realized how completely freaked I was about doing this and was very willing to help me be as medicated as possible. By the time we got to the radiology department at LDS hospital, I was enjoying not being able to feel my lips or tongue, and definitely grateful that every attempt by my stomach to do flips was quelled by the effect of benzodiazepines. Thank you, drug companies the world over for that little slice of heaven. As soon as I was called back into the changing area and instructed to put on the johnny, scrub pants and grippy, rubberized socks, I was keenly aware of everything that was going on. Instead of having a panic attack freak out, I just got super emotional and started streaming tears down my cheeks. The cute x-ray technician was very sweet, offered a lot of comfort and support, and fetched hubby from the waiting room to accompany me through the rest of the procedure.

My OB was supposed to perform the HSG, but was called out for a delivery, so a PA in the radiology department did it, assisted by the nice x-ray tech, Toni. They were incredibly gentle and sensitive and explained everything that was going to happen and were incredibly respectful of my modesty and obvious discomfort. But it doesn't matter how many times you have someone use a speculum on you-it never, ever becomes less awkward or unpleasant. And today was no exception.

After the first speculum insertion, they went ahead and inserted a long, thin catheter with a balloon on the end that is used to push the dye into the uterus. As the PA worked with the catheter, she said that "my cervix wasn't happy about this." Um, yup. Definitely not. Last time I checked, no cervix is too happy about getting snuggly with a catheter. Ugh. So the catheter goes in, causes a bunch of super-uncomfortable pressure and cramping, and then, the balloon on the end breaks. Oh yes. That's right. So out it comes, and in goes another. Everything is good, the dye goes in, speculum comes out, I am slid under the x-ray imager, there is a lot more cramping and discomfort as I feel the dye surge up and through my lady parts, and as I watch the screen above me, my uterus fills with the contrast dye and the left tube fills and spills beautifully. I can see my ovary and tube perfectly, and it's great. The PA adds more pressure to force dye into the right tube. I clench BJ's hand because it hurts and cramps like the dickens, and what happens? The catheter comes out. Just pops right out. The pressure chose the path of least resistance, and just popped the danged thing out of me.

The PA apologized multiple times, said the tube filled partially, but she would like to do it again to see if it can fill and spill completely. She asked if it is ok. I am laying on a table, gown hiked up, husband holding my hand, cramping like the worst period of my life times 10, and she wants to put that danged speculum back in and try again? GAHHHH. Of course, I said yes, because I was NOT coming back for another test unless hell froze over. So a bunch of pillows get stuck under my back to change the angle, the speculum goes back in, the catheter is reinserted, and it breaks AGAIN. Another catheter goes in. Breaks AGAIN. I flippin' kid you not. At this point, I am starting to cry, my uterus hates me, and all I want to do is kick the very nice PA in the face (and she was honestly so, so nice) and leave an imprint of the rubberized sock on her cute face. 

The PA asks for a different type of catheter that is smaller and has a c-shaped clamp on it to make is stay inside of my cervix. I felt that one going in like a razor blade. But it stayed. Out goes the speculum, in goes the dye, the cramps and pressure surge again, and my right tube spills. It wasn't as intense a flow as the dye through the left tube, but it was spilled and both tubes were declared open. The PA said there could have been a mucus plug or something blocking it, but it was flowing freely when we were done. Out came the catheter, and the cramps surged for several minutes while I lay on the table, totally exhausted. She explained that because of the clamp on the last catheter, I would have some significant bleeding. They covered me with a nice, warm blanket, swaddled my bottom area with a Gandhi-like towel diaper, and went over the images with me. 

My left tube looks great. The ovary was visible and nicely shaped. The right tube is also open, but took a lot more effort and pressure, and may have been cleared by the contrast material. The ovary doesn't look as well-developed, and that could be playing a role in my irregular ovulation. Both tube structures looked great. Your uterus should look like an upside down pear, and mine had a dip at the top. She said she needed to do an official measurement as she wrote her report for my OB, because that can be problematic, but that it was mild and more likely than not is nothing to be concerned about. If it is a concern, it would make my pregnancy a bit more risky and I would need closer monitoring and possibly a C-Section for delivery. It all depends on that official measurement. I will know more about that next week.

After resting on the table for a while, I sat up and let some of the dye work it's way out. Then it was off to the bathroom in my Gandhi-getup to deal with the blood and dye, and to get dressed and put on a lovely diaper-like pad, which I get to continue sporting for a good 24-48 hours. Awesome. 

Overall, it was less horrible than what I was prepared for, but it was no walk in the park. I am so thankful for my supportive husband and proactive doctor. I am beyond grateful for answers. I know my tubes are functional. I probably have one that works better than the other. We have information to move forward with a cycle of Clomid in September/October. I don't have any adhesions, growths, or anything majorly wrong. I can deal with having a twice-inserted speculum, five catheters, some bleeding nasty cramps, a diaper to soak up the leaking dye and Xanax haze if it helps us get closer to having a baby.

I received a number of blessings from my husband and a good friend to help heal and comfort me before the procedure. I totally loaded up on the drugs. I hate to think about what it would have been like without them. I am still feeling the effects of the Xanax and have been popping ibuprofen all day to help with the residual cramping. My best friend received the next best thing to a drunk dial from me after the procedure, and as she said so eloquently, I was clearly trying to outdo Lindsay Lohan with my pill consumption. I definitely felt like a loopy, drugged up person for the afternoon, and slept for several hours when I got home.

So, HSG. I fought you, and I definitely feel like I won in the final moments of the battle. But I NEVER, EVER want to do that again. Five catheters. Five stinkin' catheters. Blech. 

The Unholy Alliance of Fear and Shame

I was, and in a lot of ways, still am, afraid to blog about the things closest to my heart. Will I be able to authentically portray my feelings without masking them for public consumption? Even if nobody reads it, will it he helpful and therapeutic for me as a processing tool? All valid concerns. This last worry is the kicker, and at the root of my anxiety: Is my struggle difficult enough to warrant telling other people? Somewhere along the path of my life, I put up some thick defenses and walls. Often, I believe that if I can just get through everything on my own, then I won't need to depend on anyone else, and I will never have to open up about "weak" things, like those uncomfortable emotions I tend to cover up with sarcasm and wit.  Fear of not being "damaged" enough or "sad" enough, or truly "challenged" enough kept me from opening up to others for support as I have struggled with fertility. As a sort of experiment in the power of vulnerability, I am putting it out there, whatever the outcome. But it is seriously hard, because on some level, I still feel like I am admitting failure, and I am ashamed of that.

I have always considered myself to be a strong person. A woman who knew what she wanted, went ahead and got it, and still felt all womanly and empowered while doing so. I wanted to go to college, get a first-rate education, be a leader on my campus and in my community. I did that. For a while, I wanted to work as a savvy political staffer (that's me at my college graduation), impacting the country by helping to shape policy and steering the national dialogue. So I did that, and then changed my mind about that particular career path. Then, I wanted to be a teacher, and I got my master's degree and became a really good educator. I wanted to get married, and it took a little longer than I thought it would, but eventually, I got that too. For a long time, I really felt like I could have everything. So when I didn't get pregnant the first month that we tried, I felt like the floor dropped out from under me. I had failed.

I have failed before. More times than I would like to admit. But those failures have been things I have been able to overcome by just pulling myself up by my bootstraps and soldiering on. I studied more. I put in more hours. I invested my heart in whatever needed to be done. As much as I would like to think that the attitude of, "I will just work harder and the fruits of my labor will be rewarded," will yield me a result and a gold star, I cannot will a baby into existence. I fundamentally believe that God can work miracles, and that I could have a miracle happen in my life, but that is in His hands and on His time. I can't control that. And as someone with major control issues, not being able to create a baby out of sheer will and determination sucks. Sucks, sucks, sucks. Times a million. So much that I just want to scream.

It didn't start out this way. I had been married for about two months, when I had a sudden surge of panic. I felt the bile rise in my throat. I frantically ran to the calendar and counted backwards. I was late. By a week. I called my best friend and my mom. I freaked out. I wasn't ready for a baby! We were newlyweds. I wanted time to enjoy each other and go on trips and stay up late and enjoy all the general benefits of marriage that come after a chaste courtship (very Downton Abbey-ish, all lingering gazes and passionate hand-holding). I obsessed over things for a few days, and decided that when my best friend arrived for a visit at the end of the week, I would buck up, buy a pregnancy test, and seal my fate. Just my luck, I would know for sure that I was baking a little bun in my overachieving oven by the time the weekend rolled around. Friday arrived. I bought the test. I figured out how to use it. It was negative. And I was surprisingly heartbroken.

BJ came home from work and I immediately greeted him with this announcement: "I peed on the stick and it was negative." Best friend and husband knew me well enough to know that the casual sarcasm meant that I was devastated. So, we started trying.

We have approached this in countless ways. Try with vigor! Try with nonchalance. Try with hopeful enthusiasm. Count days. Track cycles. Take temperatures. Check physical signs for ovulation. Alternate days. Spend money on ovulation kits to discover that I am not having an LH surge. Eventually end up resenting the amazing gift of marital intimacy. Every month when my period doesn't come when I think it should come, run to the store and buy more tests. Throw them away and cry for days when there is only one pink line. Decide that the test was wrong, it was too early, and take another. Cry some more. I usually feel this major surge of relief when my period does come, so that I get a few blessed days of peace before the cycle begins all over again.

I lash out at people who I feel don't want children as much as I do, even if I love them with all of my heart. I strike out at my husband as he is infinitely patient with me, because my baby-deprived brain screams at me that there is no possible way he could ever want a baby as much as I do. And I fall deeper and deeper into the pit of despair created by the unholy alliance of fear and shame.

Fear and shame are downright evil. Ugh. I hate them so much I wish I could blow them up with some sort of large C4-laced explosive. I haven't figured all of this out yet, but I know these things for sure: I feel ashamed that I haven't been able to get pregnant, because I believe it is what I should be able to do as a woman. I fear that I will never be a mother because I  am terrified at the prospect of never being able to have a deep, maternal, chemically, genetically and emotionally bonded relationship with a divinely created soul that has been prepared just for my husband and I to raise, love and nurture. This shame and fear is paralyzing at times.

I am not as studied in the work of Brene Brown (all-around amazing researcher, doctor, and social worker) as I would like to be, but something that I love that she has developed is a definition of shame. She wrote in her book, I Thought It Was Just Me (But It Isn't), and made it the focus of her new book, Daring Greatly. "Shame is the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging. Women often experience shame when they are entangled in a web of layered, conflicting and competing social-community expectations. Shame creates feelings of fear, blame and disconnection." I love this definition. It helps me to process and break down how I am feeling, and to dissect some of my behaviors and emotions that feel so irrational.

I don't understand everything about my challenge-not by a long shot, but I do know this (at least with my head, if not yet with my heart): Difficulty conceiving is not failure. It may never happen for me, but it is not failure. There is no shame in my challenge. It is not shameful for me to feel sad, discouraged, disappointed, or even, at times, like a failure. My fear comes from a place of love and a desire for the most deep, meaningful and important form of connection possible-that of a parent and child. What matters is what I do with the fear. Some days, I might let it beat me back into a corner and spend my time crying. Other days, I might learn a lot of new information about effective diets for fertility, or research treatments, or talk to a good friend, or pray for strength. If I can recognize that I feel it, embrace that it comes from a real place, and decide what I want to do with these feelings on any given day, I am one step closer to true learning and growth. I don't have to be a warrior who never reveals the chink in her armor. I don't have to shove my misguided feelings of fear and shame away. I can process these emotions, discover their roots, open myself to feeling and learning from the pain, and as the brilliant Brene Brown says, "lean into the discomfort."

So I'm learning to lean in. Sometimes on chocolate. Or Cherry Coke. Or Netflix. On my husband. On friends. Always on Heavenly Father and Jesus Christ. And I will learn to lean into the discomfort with whatever measure of grace I can muster, and for now, that is enough. Sometimes, even on days where it hurts so much I can't breathe, I feel like I catch a glimpse of the person I am becoming, and that helps the hard days to pass a little more easily. I am still a college graduate, a teacher, a friend, a sister, a daughter, and a wife. I can find joy in where I am now, even if there is a whole lot of discomfort and pain. And even if it takes me a long time to work through it, and even if I never have a baby, I don't have to let the unholy alliance of fear and shame rule my life. Hallelujah.