my memoir:

Emily Sexton
Engl. 305
10/22/07
Word count: 3,732

Looking Good, Feeling Pain

It’s a lot like knives. It’s like a bunch of knives piercing your most delicate skin. It’s like the stabbing of a wound over and over again in the same spot. These knives move as one element, like a wave of sea water crashing upon edgy rocks. But it’s all going on inside of you, in the tiniest parts of you. You wonder how such a small thing could cause such devastating consequences. But there was no questioning once it hit. Once it hit, I was down for the count. Once it hit, I was uncomfortably aware that my body was under attack, and like a best friend I would do anything to fight for and protect, I would do anything I could to get rid of the pain, to rid my poor, defenseless body of such horrible affliction. My body became so much more precious to me than ever before. So I wiggled and twisted and inhaled and exhaled and squeezed and yelled. Still losing the fight. Pain still unbearable. And so I took my first trip to the emergency room, and so I began walking the path to discovering the cause of all this sudden pain… I was diagnosed with Renal Stone Disease. I was in the 8th grade.

It’s not fair, really. “Isn’t this an old-person’s disease, mom?” I was only thirteen. I started going to see a kidney specialist to figure out the course of action we were going to take to deal with my disorder. There are pills. There are surgeries. There are metal objects that poke and prod and go places I would never say out loud. There are lasers. There are shock waves. There are special diets. There are more tests, more ultrasounds, more x-rays, more radiation. A few days before Christmas, I had another stone episode and ended up in the emergency room for the third time in two weeks. My mom carried me down the three flights of snowy stairs from our apartment to get to the car. “How bad is it, honey?” “Oh Mom… please, make it stop, mom! Just let me die.” Christmas goodies didn’t seem so great, they began to lose their glitter when my immature mind was cluttered with fear and paranoia of the next kidney stone attack.

“A kidney stone is a hard mass that occurs when calcium oxalate or other chemicals in the urine form crystals that stick together. These crystals may grow into stones ranging in size from a grain of sand to a golf ball… Some one million Americans--the majority between the ages of 20 and 40--are treated each year for kidney stones. Kidney stones are more common in men, who account for about four out of five cases.” –The National Kidney Foundation

Over the winter months and into spring, the paranoia consumed me completely. I was always wondering if I would feel that first little pang… if I got a hunger pain or a cramp or anything that might turn into the hours of excruciating kidney stone pain, I was always conscious. Always aware. It might happen at ANY TIME… and there’s nothing I could do to know when. I get dropped off at soccer practice and hear, “drink, drink, drink, Em! Gotta flood out those kidneys!” None of the other kids are thinking about their kidneys as they get out of the car to go play soccer. I end up crying and writhing around in the nurse’s office at school one afternoon. It was the big mile-run day at Indian Hills Jr. High School. The intense heat dehydrated me, as I’m sure it did my classmates also, but my body reacts a little differently than most. I have been a runner all my life, an excellent sprinter. My long legs give me an advantage, and I always ran a successful mile time just a little above average compared to my classmates… until this. I couldn’t finish the mile-run. The knives were back and worse than ever… and I had to explain to the nurse that I had kidney stones. “Really, now that’s interesting… kidney stones in a young thing like you? That’s almost unheard of, isn’t it?” None of the other kids were unable to finish the mile-run in gym that day due to their kidneys. So I spent the rest of the day knocked out from pain medication.

“Stones form twice as often in men as women. The peak age in men is 30 years; women have a bimodal age distribution, with peaks at 35 and 55 years. Once a kidney stone forms, the probability that a second stone will form within five to seven years is approximately 50%.” -Parmar

I entered high school like any other 14-year-old girl. I didn’t know who I was, but I was excited to start a new chapter in my youth. I had a new best friend every month, crushes on all the popular boys, I found out I thrived in my English class and dived in my algebra class. I was a healthy, skinny, athletic blonde with a new haircut and a summer tan. Things change fast though, and they appear differently than they really are. It was a Sunday night in early October, and I fell asleep at 11 o’clock, thinking the next thing I was going to be doing was getting up to go to school. That’s not what happened at all. An hour after falling asleep, I felt my world crash down around me as I realized the pain in my lower-abdomen was not going away and only getting stronger. More knives piercing me over and over again. More waves crushing me. Bricks were piling on top of the knives pushing them harder and harder into my little body. It’s hard to even put the pain into words. After lying in my bed trying to suppress my screams for half an hour, I crawled on my hands and knees in the dark up the stairs to get to my parents’ bedroom. My tears were enough to clue them in on what was going on, so they pulled me into bed with them and tried everything in their power to make me feel better, even though nothing could. I vomited my pain medication back up not even five minutes after I swallowed it, I couldn’t stand nor sit up, I was crying, and all my mom could do was lay next to me and let me squeeze her hand. It was now 4 a.m. and I had had no relief. I had never been in that much pain for that long EVER… I had never imagined it either. It was completely surreal.

“…Usually, the symptom of a kidney stone is extreme pain that has been described as being worse than child labor pains. The pain often begins suddenly as the stone moves in the urinary tract, causing irritation and blockage. Typically, a person feels a sharp, cramping pain in the back and in the side of the area of the kidney or in the lower abdomen, which may spread to the groin.” –The Urology Center of Florida

I had also never been on morphine before. But then again, you would assume most 14-year-olds hadn’t experienced a major narcotic like that. It’s too bad my experience with it almost killed me. I think if I ever did drugs, the way I felt as the nurse stabbed the I.V. into my hand would probably have the same effect. That’s because they mistakenly overdosed me, a lot. We’re talking three milligrams they were supposed to inject versus the ten milligrams they actually gave me. On the bright side, the six hours of straight pain I had gone through by the time I was lying in the emergency room, completely subsided in a matter of seconds. In fact, I felt nothing, absolutely nothing. People were swooping in and out of and around the room in blurs, my mom’s words of worry were muffled and slurred, everyone was on edge and their faces were tense, but I was in another world in my mind. I closed my eyes and thought opening them again might be a little too hard to manage. My body tingled slightly and then it was like a soft darkness veiled over it, like I was covered in a black shroud floating in the sky in some far-off galaxy.

After that, I don’t remember much. I awoke in another room, a real hospital room, the room I would remain for the next three days. I didn’t know why I was awake, it was still very early in the morning… then I found my answer. This is when the vomiting began. If anyone gives you morphine, just remember that it takes away the pain, but it will make your stomach very upset. Don’t ask me why, but I counted… and the official count stopped at twenty-five. Once you vomit twenty-five times, there is obviously no food left in your stomach, so you start to throw up a disgusting substance I learned was called “bile”, a bitter alkaline fluid that comes from your gallbladder. If the hours of leaning over bedpans weren’t bad enough… I got no sleep, I was lonely, I hated the cheery nurses that came in to take my blood pressure and check my I.V., the stench I associate with hospitals made me feel sicker than I already was, I couldn’t hold my head up longer than two seconds, and every now and then I felt waves of kidney pain start and stop like a big tease.

Serious side effects of morphine:
• shallow breathing, slow heartbeat;
• seizure (convulsions);
• cold, clammy skin;
• confusion;
• severe weakness or dizziness; or
• feeling light-headed, fainting.
Less serious side effects are more likely to occur, such as:
• constipation;
• warmth, tingling, or redness under your skin;
• nausea, vomiting, stomach pain, diarrhea, loss of appetite;
• dizziness, headache, anxiety;
• memory problems; or
• sleep problems (insomnia).

It was the longest and cruelest day of my life. I felt like I had the body of an 80-year-old. And when I was finally freed from the cage that hospital had become to me, I NEVER wanted to smell that hospital stench EVER again. Back at home, all I did was lay around. That’s all I really could do. I couldn’t eat, sleep, or walk further than the bathroom without needing someone to help me. My body was going to take a while to adjust back to normal after such a painful experience… and especially because of the heavy use of narcotics I had been exposed to. “Give it a couple weeks, Em… you’ll gain your strength back, just give it time.” But it was too much. I was too young to feel like this, too weak to want to try to get better, and I slipped into a three-fold state of depression: physically, psychologically, and spiritually. I couldn’t look at my dad because I was mad at him for giving me bad genes and looking at him made me want to yell and punch him for the pain he caused me. I couldn’t walk up the stairs without a wave of exhaustion washing over my body, forcing me to grasp the railing like a feeble, old grandmother. I hated God and turned away from Him because He let it happen to me. I stopped praying, I stopped reading my Bible, I stopped going to youth group and church, I stopped everything. I hated anyone I passed by that wasn’t breathing heavily from just walking and moving around. Anyone who was happy and healthy. I looked at them and thought how I used to be just like them before December of my 8th grade year.

The worst was people’s reactions when they found out why I hadn’t been in school for a week. They couldn’t believe I was ailed by such a serious thing. They had no idea what the pain was like. And you could see it on their faces, like when you reveal something really significant to someone and they just sort of take it like they would the weekend gossip. And then after about a week, everyone around you starts to treat you like you’re just fine. Because you’re walking, you’re sitting in class, you’re talking by the lockers with your friends. But inside… inside you’re weak and dead. You have so much healing left to do. So much strength left to gain back. But to the human eye, you look completely normal. I wanted people to understand, I wanted them to know. And I also didn’t want them to know… I wanted to hide it. I struggled with that for a very long time, long after I had gained back most of my physical strength… which took a good two months. When the spring soccer season rolled around, it was time for me to try out for our high school’s team… my first real tryout for a competitive high school sport. After my hospital stay, my visits with my kidney specialist left me with an order to try to “treat” my kidney problems by making sure I was always staying hydrated. Once soccer season arrived, this got much harder. Every time I had to stop and grab an extra drink, I wished I could go back to the careless days at soccer practice when I didn’t once think about preventing such a thing as kidney stones. I performed to my best ability, but sometimes my best wasn’t as good as everyone else because of kidney stones. Sometimes I had to sit on the side lines. Sometimes I had to leave early. Sometimes I couldn’t finish the drills. All because of something inside of me that no one could see. Soccer coaches are accustomed to seeing twisted ankles and torn ACL’s, not kidney stones. They only knew by my facial expression that I was in pain.

“A number of risk factors play major roles in stone formation. The first is loss of body fluids (dehydration). When one does not consume enough fluids during the day, the urine often becomes quite concentrated and darker. This increases the chance that crystals can form from materials within the urine, because there is less fluid available to dissolve them.”

On a steaming day later in the summer, I found myself sitting in the familiar small office of my kidney specialist. I walked through the familiar hospital filled with familiar faces all from sad, tired, weak, old men and women hobbling into the elevators and sitting in their wheelchairs in the waiting rooms. Their silver hair and wrinkled hands looked nothing like my long, blonde hair pulled back in a sporty pony-tail and my athletic little legs in my white soccer shorts, no wrinkles to date. Test results had revealed my fatal flaw. I cocked my head and narrowed my eyes at this peculiar discovery. My body doesn’t produce as much citrate as it should be producing. Therefore, I have the tendency to form kidney stones from the lack of kidney stone inhibitors, which comes from citrate. I have a “metabolic abnormality”.

I glanced back and forth between my doctor and my mom for answers to questions I haven’t formed just yet. I figured out that what he was saying was that this isn’t just a momentary problem. My doctor looked at me when he spoke to me, which was weird because I usually had very little understanding of anything he said… I was just a kid; I kind of wished he would just look at my mom instead. This was all very foreign to me. My mind was probably distracted thinking about when my next soccer game was. But when the words ‘citrate’ and ‘metabolic abnormality’ kept flying out of his mouth, I was hooked. Then I looked to my mom for some kind of assurance that everything was going to be ok no matter what words were coming out of his mouth. “There is a medication we could put you on. It has a good success rate. I hesitate though… you’re extremely young to be worrying about taking a pill twice a day for the rest of your life. Discuss it with your mom, don’t feel rushed, we’ve got plenty of time. I’ll see you guys in a few months.” I listened to my mom tell me she agrees that I am too young to start taking such a long-lasting medication. She didn’t promise a solution, because there really isn’t one. But she always hugged me the right way that told me, “I don’t know what’s going to happen, sweetie, but I’m always going to be right here with you to help you through it.”

“…Potassium citrate attaches to calcium in the urine, preventing the formation of mineral crystals that can develop into kidney stones.”

“…About half of children with stones have an identifiable metabolic disorder, which increases their risk of stone recurrence five-fold.”

When the one-year anniversary for my hospitalization came around, I cheered a little inside. I got on with my sophomore year of high school, feeling older, cooler, and healthy again. And I wish with all of my heart I could end the story here and conclude that I lived happily ever after, but I went down the other path, the path to inexplicable pain. I began making weekly trips to the nurse’s office. They saw me so much that year they told me I was kind of like a daughter to them. They got used to my half-bent over posture walking weakly through the wooden door, continuing on to the back room where the lights remain off and I can lie down for one class period or however long it took. They provided me with a heating pad to hold on my back to help with the frequent muscle spasms I was now getting from my disorder… they didn’t hurt as bad as kidney stones themselves, but felt very similar.

One night in February, I awoke to a horrifying sense of deja-vu. “No, no, no… this cannot be happening again. No, please, not again.” I started begging and pleading with God. I wanted Him to reach out and just suck the stone or stones right out of my body with His own two hands. When I made it upstairs and woke my mom up, it was like I was experiencing the October stone attack all over again, but somehow it was worse, somehow it was even more painful. My mom was so cautious to drive me to the hospital. But I knew what was going on inside of me. I knew it wasn’t going to stop anytime soon. And it didn’t. It went on for three more hours… and I threatened to drive myself to the hospital if she wouldn’t do it, I was so desperate for pain relief, I felt like I could just die from the pressure of the knives. I lay crumpled in the passenger seat as my mom drove at the speed of light to get me to that emergency room. I was wailing and screaming my head off. When they got me into a bed, my body started to convulse uncontrollably from all the pain. They rolled me into the x-ray room as fast as they could, promising pain relief in just a couple more minutes… those minutes felt like hours. At last, they covered me with a heated blanket to help with my convulsions, and they gave me an I.V., carefully checking my wristband the emergency room attendant had attached specifically warning NO MORPHINE, so I didn’t find out until later what narcotic they put me on that time. When I was roused sometime in the afternoon from my sleep, my mom mentioned it was some narcotic called Newbane that doctors said they give to women who are in labor. I was just glad it didn’t make me throw up twenty-five times. I lied in that hospital bed for three days, barely moving, speaking, or existing really. It was depressing.

“Some people are more susceptible to forming kidney stones, and heredity certainly plays a role. The majority of kidney stones are made of calcium, and hypercalciuria (high levels of calcium in the urine), is a risk factor. The predisposition to high levels of calcium in the urine may be passed on from generation to generation. Some rare hereditary diseases also predispose some people to form kidney stones. Examples include people with renal tubular acidosis and people with problems metabolizing a variety of chemicals including cystine (an amino acid), oxalate, (a type of salt), and uric acid (as in gout).”
--eMedicineHealth

One year following my February hospitalization, my mom and sister presented me with a single yellow rose. That rose represented so much to me. In its petals, I saw the pain of my past woven into the pain of my present, and inevitably the pain of my future. But it was yellow, like the sunshine. It was hope. Smelling its sweet fragrance made me calm. I think with every long-lasting problem you are forced to deal with in your life, you have to accept it as being a part of who you are. I don’t like having a kidney stone disease. I don’t wish it upon anyone else. I don’t like that it stained all four years of my high school career with tears and sweat and anger. But it also made me stronger, and without that strength, I wouldn’t be the girl I am today. My friends look at me and envy my slender body and my toned stomach. But there’s so much more to me than that. And people recognize that too, which is all that really matters. They recognize my strength and perseverance that comes from my struggle with renal stone disease. They witness my exuberant joy that results from taking full advantage of healthy, happy times after years of suffering and pain. I may appear to have a great body, but my confidence comes more from overcoming time after time after time of painful kidney stone episodes than people complimenting how good I look in my skinny jeans and fitted t-shirt. I live a life of pain, and out of it I am blessed. I will continue a life of pain until the day I die, and I will still try to wiggle and twist and inhale and exhale and squeeze and yell… but I will also smile, because I will overcome.