20 May 2017

Surgery

If there’s one thing I’ve learned through this surgery, it’s that I am a very stubborn patient! Convinced this was a simple procedure due to it being laparoscopic, requiring only four keyhole incisions, I thought I’d bounce back in no time, but it hasn’t been quite that easy, mostly because I decided to take up the “I know best” attitude, not letting anyone tell me what to do but instead doing the exact opposite! Yes, stubborn, I know, if not utterly stupid! Post-surgery I was instructed to stay on a full liquid diet for 7-10 days and then slowly (key word) advance to low residue, low fiber solid foods. However, being the “know it all” that I’ve become, I decided after three days of full liquids that I’d “had it” with this way of eating and my body was somehow different and could handle whatever I put it through. Yes, after my seven-hour spinal fusion, fusing my spine into a manipulated 20 degrees using 21 screws and 2 titanium rods, I developed the same attitude, thinking I, the uneducated patient, somehow knew best. If the surgeon said no exercise for a minimum of a month, it was ok to wait two weeks to start back into my old routine of push-ups, cardio, strength training and running “marathons”, right?  I was, after all, invincible, or so I thought. I prided myself in pushing my body far beyond the limits, setting new records and being able to handle whatever obstacle was thrown my way with “ease” (not mentioning the fact that I’d learned to abandon my weaknesses and pain within the dark, brutal depths of my abused and ever-increasingly lifeless heart, convinced I would never again let someone harm me in such excruciating and humiliating ways; I put up walls to keep everyone out, convinced the world was against me and the only person I could trust was myself). This surgery may not have been as serious as a seven-hour spinal fusion, but after all I’ve put my body through I’m discovering it no longer holds the capacity to “bounce back” with such ease and I am no longer (and never was) the exception. After three days of a full liquid diet, I decided I was feeling pretty good and therefore could handle solid food, right? Well, not just any solid food; I decided to give into my cravings of fresh fruit and vegetables (full of high fiber and difficult to process), as well as whole grains with seeds—everything I’d been instructed to avoid for a minimum of four weeks. After about a week or so of eating this way, however, I’ve never felt more miserable but tried to convince myself as well as others that I was “fine” and once again “invincible”. I’ve had zero energy, excruciating gas pains as well as bloating which is complicated by my tendency to restrict my intake any time I “feel fat” or bloated due to years held captive by the nearly fatal chains of anorexia and self-starvation. It was a slow decline, but I’m seeing how the voices of ED crept back in after surgery, which is exactly what we’d all feared. It started with the bowel preparation the day before surgery, requiring consumption of nothing but clear liquids as well as many laxatives to “clear out” my system. Naturally, as anyone would, I lost weight due to the low number of calories consumed as well as evacuating my entire digestive system of all waste. The day of surgery finally arrived and my poor stomach churned with hunger pains due to the fact that I couldn’t eat or drink a single thing after midnight and it was now nearing lunch time. As I was registered for the upcoming procedure, an IV line placed and fluids pumped into me, I heard my ED screaming at me with urges to “restrict, restrict, restrict”, when I knew I was in trouble! The surgeon, who was known for his crazy, bold socks, came to check on me prior to surgery and I meekly surprised him with a gift of superman socks I’d searched for and purchased as a thank you for being my “superman” and FINALLY getting the job done after many years of waiting. His face lit up at the sight of these socks and he promptly changed into them as we waited for the room to be prepped and sanitized following his last procedure. 


As I was taken to the operating room and laid on a cold, metal table beneath many bright lights, the kind staff carefully explained all that would be happening while I was put to sleep. A tube was inserted down my throat, another IV inserted, catheter placed and four keyhole incisions made as my abdominal cavity was inflated with CO2 in order to form a dome over my organs, protecting them from accidental harm. To cover the basics of what took place during those two hours, my rectum was cut from all surrounding tissues and stretched up to my backbone, where it was fastened and secured by many stitches. When I awoke, requiring about an hour to recover from the anesthesia, the first thing I asked for was a grape popsicle to moisten my parched lips. They said I had to wait until I was taken to a room and was then joined by my vivacious, caring surgeon who was still wearing his superman socks; he informed me that I have very “good anatomy” and everything went as planned, without complications. I was then taken through many hallways of the massive Cleveland Clinic to a shared room where I would spend the next day or so. Finally, as it was nearing dinner time, I was given my long awaited grape popsicle and a liquid dinner tray arrived, of which I left untouched due to the nausea and pain. My incisions hurt with each breath and intestines churned with discomfort as my body was still traumatized by the burning through flesh and manipulation of organs which were meant to be left untouched. Once I was settled into my room and pain medication administered, I told my family to leave because they’d been by my side the entire day and we all needed some rest. Doctors and nurses came to check on me throughout the night, awaking me every couple of hours to monitor vital signs and administer pain medication in order to keep my pain under control. Early Friday morning I was awakened by a young resident doctor who asked me many questions regarding how I was feeling, informing me I might be able to go home later that day. However, things did not progress quite as quickly as anticipated and I struggled to force myself to eat due to the pain; the doctors were most concerned, however, by the fact that I wasn’t yet passing gas which meant the CO2 was still trapped within my abdomen, explaining the piercing “gas pains”. I managed to force down about a fourth of my cream of wheat but struggled to get much more in; my surgeon came back to check on me later in the day and we were both uncomfortable with me going home that night, so I stayed overnight to give my body more time to heal. It was also good I didn’t go home that day because my IV had been discontinued but I struggled to drink enough to prevent dehydration and my magnesium also dropped, requiring two bags of IV magnesium. So, on Saturday, after lunch, I was discharged and picked up at the front entrance by my loving dad and sister. The car ride was painful but not as painful as it would’ve been had I not forced myself to make laps around the nurse’s station throughout the day, which promoted healing. 

After three days on a liquid diet, convinced I was now “healed”, I gave in and ate a turkey sandwich. Exempt from any negative consequences following digestion, I decided to abandon all the surgeon’s instructions for another four to seven days on full liquids and slow advancement to soft low fiber foods, choosing to instead eat a large salad with grilled chicken and fresh vegetables, as well as dried fruit and all the other foods I was instructed to avoid for a minimum of four weeks. After about a week of eating this way, my symptoms caught up with me and I struggled to bounce back. I suffered from painful fluid retention and bloating, complicated by the fact that I wasn’t drinking enough to allow my body to rid itself of the IV fluid and toxins. I’ve also been struggling from extreme allergies, which left me beyond miserable but once again in denial; after finally having enough of “trying to be strong and invincible”, I gave in and allowed my body the rest it so desperately needed. I also decided to “give in” and follow the surgeon’s instructions to the best of my ability, despite the fact that it went against everything ED taught me and what had become familiar. Instead of high fiber, low calorie foods my body was desperately craving higher calorie, easy to digest foods in order to allow my digestive system to rest rather than work in overdrive. So, I’ve been learning to “take it easy”, as much as I hate it, which in turn allows me to heal faster and more thoroughly. And yes mom, you did know best, although you couldn’t tell me otherwise! ;) I guess the statement “mother knows best” is true, after all! This surgery is revealing many things about my true nature and stubbornness, as much as I fight against it! God is showing me that it’s ok to let people in and care for me—that not everyone is against me. He’s helping me to tear down the many walls I’ve created for protection which at one time were helpful but have now become destructive. With His gentle guidance, I am becoming the woman He created me to be! 

29 April 2017

Relentless Fight

“Can all your worries add a single moment to your life?’” Matthew 6:27

      Why do I let fear and worry torment me, I constantly ask myself—it’s not like worrying will make it happen, after all! “What we worry about frequently never happens anyway, and if it is going to happen, worrying won’t prevent it. God’s Word promises us that He will take care of us if we trust in Him” (Joyce Meyer). I remember a time when I was so paralyzed by fear I couldn’t even lift a spoon to my mouth and feed myself—the very requirement of living and breathing—and so admitted myself to the Cleveland Clinic so they could feed me. The guilt and shame tormented me with every bite but without it I wouldn’t survive. In my mind I was “fat”, even though bones protruded through my skin and lanugo covered my poor, failing body in attempts to maintain a normal or even below normal core body temperature. One of the craziest things about Anorexia is body dysmorphia, where one cannot see oneself accurately. According to the Mayo Clinic, “body dysmorphic disorder is a mental disorder in which you can't stop thinking about one or more perceived defects or flaws in your appearance — a flaw that, to others, is either minor or not observable”. “They can't control their negative thoughts and don't believe people who tell them that they look fine; their thoughts may cause severe emotional distress and interfere with their daily functioning; they may miss work or school, avoid social situations and isolate themselves, even from family and friends, because they fear others will notice their flaws” (ADAA). How could something so seemingly small and insignificant become alarmingly powerful and lead to life-threatening actions? I’ve come to realize that because I suffer from this disorder, as well as perfectionism, I will never be satisfied with myself; the number on the scale is NEVER low enough until death occurs, which never seems to be a possibility in the moment. 


Many times I’ve tasted death and come too close for comfort; truly, I have been told by many doctors, it is a miracle I am still living and breathing, with no or minimal damage to my severely abused and tortured body. Days on end without eating and relying on coffee to disguise or numb the agonizing and piercing hunger pains relentlessly churning within me brought me comfort and became the very existence of normal life. Fear of passing out and the world becoming aware of my deepest darkest secret—starvation—paralyzed each moment, afraid someone would force me to consume but even a single calorie. In my mind, this was the worst possibility. No, this is not living but instead the exact representation of death; yes, it was in fact like living within the depths of hell, surrounded by torture and piercing life-stealing screams.
      The day I was told I had to go back to COPE, my worst nightmare, I remember crying out to God in adamant anger; why would He allow such a thing? COPE, or Center for Overcoming Problem Eating in Pittsburgh, took away every inch of control, forcing me to eat whatever was served on my plate no matter how scary or seemingly impossible it may appear. The scariest of foods, including tantalizing and rich chocolate cake, buttery French toast, greasy pizza and cheeseburgers, to name a few, left me in excruciating torment, convinced I would not survive even one bite without blowing up. Each day, every meal and snack, I had to set aside my tortuous fears and find the strength within me to not just take one bite but finish each life-threatening calorie. How could one so malnourished and near death’s door be so violently afraid of the single thing that would bring life and prevent death? No, I have not yet come to a conclusion of why these things occur, but I know how real they all seem!
      Never did I expect life in recovery to be so difficult, but I must remember that nothing worth having comes easy. Since coming home, I have been struggling to consume enough calories to prevent dropping weight, which is a problem due to my upcoming surgery in which I am expected to lose weight. I am SO incredibly excited to finally, after four years of waiting, be getting surgery, but also nervous because I must completely change the way I eat and face many fears; I’m used to a high fiber, low calorie diet but now must maintain a low fiber, high calorie diet to prevent recurrence of my prolapse. No, this will not be easy, but God will get me through, I believe!
      I’ve also been having relentless urges to decline going to Mercy Multiplied because the enemy knows it is at that very place I will find freedom and through it will help countless people out of the depths of anorexia—only He holds the secret! Please pray for courage and strength as I fight to stay stable during the waiting period, before I can get into this scary yet amazing facility! 

13 January 2017

2016

           It’s hard to believe 2016 has come and gone; it seems like just last week I was starting my Spring 2016 semester but now am getting ready to begin my Spring 2017 semester, which is crazy! Honestly, I think 2016 just might’ve been the toughest year for me; spending two weeks in the Cleveland Clinic after almost being killed by fluid overload and refeeding syndrome as well as infection, having to drop out of my semester and almost not finishing the last semester, four months at COPE fighting for my life and countless hospitalizations after near death experiences left me weary and exhausted, wondering if things could ever get better.



    
          For the first time in almost three years, I was home for Christmas, so I wanted to make it really special. Instead of stocking stuffers, I decided to make candy: I made buckeyes, chocolate covered Oreos, chocolate covered strawberries, Reese’s trees, Oreo balls, mint Oreo balls and red velvet Oreo balls, as well as chocolate candy cane pops. I also made “Grinch hats” for watching “How the Grinch Stole Christmas”, which we never then watched but ended up watching “National Lampoon’s Christmas Vacation” instead, which was hilarious! Everyone loved the candy and it looked so festive, which made me excited! We had a nice dinner together and then opened gifts; I got a gorgeous ring which I am in love with, as well as charms for my locket; my favorite is a crown reminding me I am a Princess, as well as a cupcake which I am obsessed with. I also got a warm sweater, framed picture and glitter Starbucks tumbler. We had such a blast opening gifts and just loving each other and then watched “National Lampoon’s Christmas Vacation”; I bought everyone their own mug, which they then filled with warm, fresh-brewed coffee as we snuggled in cozy blankets. All in all, it was definitely one of my favorite Christmases; I just love holidays!
















           2016 has been brutal, and at times we didn’t know if I would make it through, but God spared my life countless times and I am pleased to announce I am doing well. I found a new dietitian after my stay at the Cleveland Clinic for kidney failure and she has been such a blessing! She gave me a new meal plan, which at first I said I would never follow since it seemed far too excessive, but have been trying my hardest for three days now and couldn’t be more proud, plus I feel a hundred times better! God is good! I also got a new adult doctor, who I absolutely adore! Last week we discussed options for treatment, which really motivated me to “kick it into gear” and get serious about recovery; it has been hard but SO rewarding!

           This semester in college I am doing my preceptorship; I applied for Akron Children’s but still haven’t heard back so am hoping to hear within the next week. I am SO excited to be really getting a hands on approach and get a feel for what it’s really like to be a nurse!

27 July 2016

Summertime Celebrations


 It’s hard to believe over a month has passed since I returned home from an inpatient eating disorder unit in Pittsburgh after four long months of medical stabilization. Those four months may have very well been the hardest, most trying (both physically and emotionally) months of my life, as I had to come face to face with my greatest fears and allow my body to physically heal from the years of torturous abuse that’d nearly stolen my fragile life far too many times; I won’t go into detail about how worn down and lifeless my body, as well as spirit had become but will sum it up with a story: one Sunday afternoon I’d stayed home from church after once again suffering from illness due to a severely compromised immune system, having no reserves to “steal from”, and felt a gentle nudging at my heart saying, “Seek professional help”, making it pretty clear I wouldn’t last much longer if I didn’t go sooner rather than later. So, I obeyed and called my mom, who was in church but quickly arrived home to help me pack for this “revelation moment” and we hopped in the car to head for the emergency room. When I arrived, they took me right in, without even having to wait in the waiting room, as they told me I was in such bad shape they didn’t think I’d survive much longer; so, after stabilization in the hospital, I was transferred to the inpatient eating disorder facility across the street, where I spent the next 3 ½ months or more literally fighting for my life. Every day was filled with countless battles but with God’s strength I came out victorious and my body has healed miraculously, making a complete turnaround.


Since returning home, I have had many struggles, as is to be expected, but never once have I given up without rising again. I’m discovering countless attributes I never knew resided within this heart of mine and learning to develop a new identity, apart from anorexia nervosa. Sure, there are days where I want nothing more than to resort back to the comfort of starvation, as it is what had become familiar, but I’m then reminded of how far I’ve come and how my body might not “spring back” if there is ever another relapse. It’s amazing to have such vast energy to do so many things and to have the freedom to do whatever I want whenever I want, within limits of course! I’m discovering SO much about life and it is oh so beautiful! A lot has been happening in my life lately but I just haven’t taken the time to write, so today I thought I’d “bite the bullet” and “just do it”, so to speak!

Several weeks ago I had an appointment with a colorectal physician at The Cleveland Clinic for the first time. I had such a fun time browsing the buildings from the inside, without having to be wheeled in a hospital bed as an inpatient. I just love the atmosphere at the Cleveland Clinic, with all of its modern architecture and recognition of such a vast array of different ethnicities. Everyone is beyond friendly there and I’ve still to meet a physician there I wasn’t absolutely blown away by! This physician gave me countless handouts on what we discussed and then got me in right away to see the surgeon, who apparently has an insanely busy schedule. She then sent me for some testing to measure my muscle tone and scheduled me for some more tests to evaluate whether or not I need any of my intestines removed. I am scheduled to see the surgeon on the sixteenth, so we are hoping they will schedule surgery within the next weeks, before school; I was SO pleased to find out it is only an outpatient laparoscopic surgery, in which I can go home the same day, as well as only a three-week recovery period, which is MUCH better than what I’d originally been told! God has such amazing ways of absolutely blowing me away!

Yesterday my grandma called me to ask what I was doing today and whether or not I’d like to help her bake cut-outs for Troyer camping, which is we are in-charge of and is rapidly approaching! Every other year my mom’s aunts & uncles, along with all of their children and grandchildren rent a campground down south with tons of cabins and lodging for Friday through Sunday. Since we are in charge this year, we wanted to be sure to provide plenty of food for all these hungry people! So, this morning I ran over to my grandparent’s house, where we baked, frosted and decorated over four dozen cut-outs. I’m not going to lie: at first it was a major stressor to challenge my intense perfectionism, as I wanted each cookie to look “perfect”, but I soon got over that and learned to embrace the process, imperfections and all! I had such a fun time socializing with my grandma—memories I will treasure forever!





After we finished baking, decorating and cleaning up, it was such a gorgeous day that we decided to head over to my aunt’s pool, where we spend most of our Summer days sunbathing. I immediately grabbed my pool floatie and jumped into the pool, which felt absolutely fantastic after almost dying of heat in this ninety-some degree heat! I laid in the pool for hours on end, and honestly, if given the chance, would live there; there’s nothing more relaxing then soaking up the rays while floating in the comfort of refreshing blue water, tossed and turned by the waves made by all the surrounding company. It is such a blessing to be able to enjoy such fond bonding time with all of my siblings, as well as aunt and grandma God is SO good!! I just can’t get enough of all the beauty He has created! Here’s to many new adventures in this nature-embracing life; I can’t wait to see what He has next in store for me! 




31 October 2015

Surrender

Well it’s been far too long since I’ve written; it’s hard to believe a month has already almost flown by—where does the time go? In just a couple of weeks, we will be celebrating Thanksgiving and then Christmas—how crazy! With Thanksgiving so rapidly approaching and it being such a HUGE tradition in my family, as we celebrate Christmas on Thanksgiving so the entire family can be together for at least one holiday, I find myself reminiscing about the past years and the life anorexia has robbed me of. For the past four or so years, I have been absent from our huge Thanksgiving celebration, spending the holiday in either a hospital bed or treatment facility. Last year my family had to come visit me in the hospital, where machines kept me alive so I could survive to see another year; never did I imagine the struggle would be this long or this intense, but honestly, I wouldn’t have it any other way because God is teaching me in profound ways just what freedom in Christ REALLY looks like; I am learning that Surrender truly is the ONLY way to life. I’ve had to literally force myself to surrender—humbly falling to the ground and allowing God to re-frame my faulty thoughts/desires to align them with His Truth so we can become One. On my own, I cannot force myself to eat enough to survive; left to my own fleshly desires, I would literally starve to death. The world may never understand this and quite frankly, they don’t need to, but once malnutrition and anorexia join hands, they become a nearly impenetrable force; in fact, I’ve found that worldly strength cannot even begin to make a dent in its armor. A force so strong requires something far superior—a greater power not of this world. All of the worldly “tools” I’ve been taught to depend on are useless without the Hope of Christ and try to convince me that I will ALWAYS be a slave to anorexia’s chains because they leave out the most vital part—Christ. They are right: apart from Christ there is NO hope but even the smallest grain of faith in Christ is greater than the weapons of the enemy. Matthew 17:20 says, “Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”
 I’m discovering that we were not created to get through this life on our own strength and trying to do so leads to absolute hopelessness and relentless depression. We were made for God’s pleasure and glory—to ultimately bring Him glory and praise. There is no joy apart from Him and His words are true, unchanging and forever relevant; it’s hard to believe that no matter how many times I turn to the exact same verse, it has the potential to speak to me in a completely different way but I’m discovering that it is profoundly true. And just as the Truth of the Bible stays the same, so does the fact that on this earth we are all subject to temptations, trials and pain—just as they were in the beginning of time. To think that we can get through life on our own is madness…complete madness. At COPE, there is no hope because there is neglect of the entire being of humanity; there is no spiritual aspect and the mental aspect only grazes the surface of the root issues. By forcing anorexics to consume unnatural amounts of food in a short time period in order to restore massive amounts of weight  without acknowledging the true battlefield—the mind—you are setting them up for failure. True freedom requires restoration of ALL aspects: SPIRIT, SOUL AND BODY—not simply body! At COPE they teach us to do simply that—to cope or just get by with the struggle; it is forever present according to their teachings. However, that is the difference between a worldly view and a Spiritual view; “apart from God we can do nothing”.

The past few weeks I’ve been “flying by the seat of my pants”, testing each boundary to its absolute limit so I can just get by through life. Honestly, I forgot the feeling of true joy and tried to convince myself this was normal—that joy was something I’d never again experience. Why? Because “the joy of the Lord is my strength” and I wanted anything but to surrender, giving up my comfort and having to face my pain head on. The world will never know just how much easier it is to stay a slave to anorexia once it’s become your identity and comfort in life; having to face and deal with the pain head on, fully bearing its overpowering sensations is the most painful and excruciating thing I’ve ever experienced. In order to experience joy, I must fully embrace and experience all other emotions—including the negative ones. I must also re-train my brain to view food as life-giving rather than life-threatening and allow myself to enjoy life rather than punishment. All the changes, both physical and mental, are exhausting but I’m tired of choosing the easy way. In His own timing, God has been gradually changing me, softening my heart to receive His truth and unconditional love. I’ve been able to stay out of the hospital by the “skin of my teeth”, every appointment on the very tip of the edge just waiting to fall. I’m tired of living this way, though; the constant fear and anxiety is paralyzing and I realize I am not destined or deserving of this punishment but rather of enjoying life and experiencing freedom. Slowly I’ve been allowing myself to experience these positive sensations rather than subjecting myself to the pain of punishment and negativity. Last Tuesday we had a missionary from China speak at our church and the presence of God filling the room was truly life-changing; I almost didn’t go, which I know was the devil trying to keep me away from the one thing that would give me strength. As he shared his story—of how true and undeniable miracles such as walking on broken legs straight through the armed and guarded doors of prison took place—it hit me that this SAME power is available to me! I’ve had many times since then of resorting back to the desires of my flesh, but the difference is every time I’ve chosen to GET BACK UP rather than remain a helpless victim. Yesterday I volunteered at Akron Children’s Hospital and started my new assignment of chaperoning special guests through the hospital, visiting each patient if they so desire. For Halloween, the University of Akron’s football team brought a wagon loaded with homegrown pumpkins to carve with the children. I took them up to the sixth floor playroom, where several patients, IVs and all, along with their parents sat around the miniature kid-sized tables. We split up, some gowning up to visit isolation rooms and burn unit, while the rest of us entertained the children in the playroom. It was quite a show to see these massive, intimidating football players obey the commands of the small, innocent children as they instructed the athletes how to carve each unique pumpkin. The kids were repulsed by the gooey slimy “guts” of the pumpkin—well all except one; one child was so enthralled with this new “toy” that she kept asking her mom to replace the “guts” so she could scoop it back out—the excitement in her voice by such a simple thing was truly captivating. Anyway, I got gloves for the other children and yes, football players, which solved the problem. During the few hours we were there, more children from different floors trickled down to receive their “shot” at instructing a large football player how to carve their “dream” pumpkin. Some stuck (no pun intended) with the ideal and tidier stickers to decorate their pumpkin, while others drew the most intricate of designs on the pumpkin for the football players to carve; it was amazing to see their massive hands used for such intricate and detailed work! It made my day to see the absolute excitement and joy overtake each suffering child’s face and I was reminded of what life is really about—service. One boy had never carved a pumpkin before, so was beyond ecstatic to have his first completed by a “celebrity” in his small mind; he completed his treasure with the autograph of every “celebrity”, which much to my surprise included even me; it made my heart happy to be seen as a “celebrity” through the eyes of a child, reminding me just how important each action is—no matter how small! Overall, it was an amazing and fulfilling day of spontaneity, which I am discovering is more effective than planning out every single detail. “In their hearts humans plan their course, but the LORD establishes their steps (Proverbs 16:9)”. 
The same well-trained hands used to catch a football were used to intricately carve a small child's pumpkin. 

Notice the pumpkin "guts" present in front of this smiling child. 

Lots of laughter and light-hearted conversation filled the playroom. 

09 October 2015

Refeeding Syndrome

God’s ways are so much higher than my own; never in my wildest dreams could I have planned a more beautiful and rewarding day! Today (9/7) I was scheduled to orient to a new volunteer position at Akron Children’s Hospital in the Kay Jewelers Pavilion Outpatient Surgery but ironically my plans ended up being spontaneously interrupted by God’s supreme plans far exceeding my own. I arrived at the volunteer office several minutes early, only to find the person I was meeting had not yet arrived. Another volunteer informed me of the health fair that was taking place over in the Considine Building and happened to mention that they were giving free flu shots, which are required for all hospital volunteers and employees, so I promptly checked in, put my belongings in a locker and informed the volunteer office of where I was going so it wasn’t thought that I’d skipped my appointment. So, I started the long trek from the Locust building to the first floor of the Considine Building, noticing each familiar “landmark” with awe and greeting each passerby with an enthusiastic and genuinely excited smile. Yes, there was a certain “spring” to my step as I recalled why I love this place so dearly—but only when I’m not the patient! ;) jk. Anyway, when I arrived to my destination, the fair was just beginning and vendors still setting up, so I looked around briefly until my darting eyes caught a glimpse of the sign for employee health, where the flu shots were being given. I quickly scrambled to get in line and thankfully was one of the first “victims”; I watched as the pre-filled syringes were taken from the cooler and carefully organized on top of a table already covered with alcohol swabs, band-aids and all other medical necessities and as each “victim” before me took their place in the designated chair, my heart grew increasingly anxious to just get it over with, as I think I’m more fond of giving shots than I am of receiving them! Once my turn arrived, I filled out the paperwork, took off my jacket and exposed my left bicep and waited for the dreaded “poke” and subsequent burning sensation, which I usually imagine is worse than it actually is. The nurse firmly squeezed my left bicep with one hand and quickly “jabbed” me with the other hand; as the sharp needle penetrated through my skin, I immediately tensed up, which just prolonged the process since the medicine couldn’t flow through contracted veins and would thus become sore in the hours to come. Once the medicine had been injected and the wound covered up with a band-aid, I gathered my things and began browsing each booth. The first booth I stopped at “conned” me into spinning a wheel in hopes of winning a prize, which I thought to be exceedingly unlikely but ended up winning a $5 gift certificate to the gift shop, which I couldn’t have been more excited about! They then gave me a cute cinch backpack with the Akron Children’s logo, which I then stuffed with miscellaneous other goodies found throughout, such as pens, hand sanitizers, informational pamphlets and lanyards. Once all booths were visited, I headed back over to the volunteer office, where I was expecting to orient to the new position I’d agreed to. On the way over, I was excitedly greeted with familiar faces by workers who had become my family after frequent hospital admissions as well as volunteer experiences; when you know nearly the whole hospital staff by name, you know you’ve been there too much! ;) lol. When I arrived at my destination, I was pleasantly surprised to find out the volunteer scheduled to run the main hospital surgery desk never showed up, leaving the staff desperate to find a replacement—not to mention in short notice time! Frantically, they turned to me to see if I’d be willing to run the desk, as I’d done in the years before—although they’d made a lot of improvements since then. I reluctantly agreed to be spontaneous and give it a try, pushing aside my fears of making a fool of myself and screwing everything up. As we arrived at my long lost home—the fourth floor surgery desk—the atmosphere instantly brightened as all of the familiar faces looked at me in shock and confusion, wondering where I’d been and how I was! Instantly all my fears of inadequacy dissipated into the mists of the chaotic air, as I relived the comforting and familiar duty of being the surgery desk attendant. I immediately jumped into the chaos and began answering phone calls, registering families and doing my best to answer questions. Once things had settled down and become more under control, the volunteer coordinator left to take the Chick-fil-A cow to each floor and I was left alone to run the desk. As surgeries were finished, I called the families up to put them in a private room to talk to the surgeon and wrote the surgeon’s name outside the door so the families and surgeons could talk in private. I also registered the families of the patients who had just been taken to surgery and explained to them that I’d call them once the surgery was finished so they could talk to the surgeon and so if they needed to leave the floor for any reason, to notify me so I could give them a pager to get ahold of them. Once they met with the surgeon, phase one recovery would call me to bring two family members back to see the child once he/she had woken up from anesthesia and was stabilized. I absolutely love the busy atmosphere of the surgery desk, as it keeps me on my toes and makes time fly by! The shift was over before I knew it, making me long to do it again! Once my replacement arrived and I updated her on all the surgeries and such, I signed out and grabbed lunch, which all volunteers get for free—yet another perk of being an Akron Children’s Hospital volunteer!! ;) Overall, it was an absolutely amazing day and I couldn’t have planned it better! It was beyond exciting to see familiar faces of those I’d formed such good relationships with and become close to!

Later that night, after I got home from volunteering, I started feeling ill and my arm was extremely sore and black and blue where I’d received my flu shot; being the minimizer that I am, I thought nothing of it and just went to bed early to hopefully sleep off the achy feeling and generalized weakness. During the night, however, I awoke several times with extreme nausea leading to emesis, diarrhea and a fever; I was so achy and weak that I couldn’t move and instantly knew something was wrong; I had agreed to volunteer early that morning with the superheroes who were making their appearance in the hospital but sadly it didn’t look like I’d be able to follow through due to illness, so I emailed the volunteer coordinator to let her know what was going on. I was looking so forward to visiting the patients’ rooms and seeing their faces light up at the sight of all ten superheroes but my plans were once again different from those God had in store for me; instead of volunteering, I ended up spending the entire day cooped up inside the house in order to allow my body the rest it desperately needed to recover from its suffering. I was supposed to get my labs drawn, as well, so we had to call my doctor to let her know what was going on; she suspected I had a reaction to the flu shot and told me to stay hydrated and come in the next morning for labwork to make sure everything was ok. So, I did as I was told and spent the whole day either sleeping on the couch or in my bed, with my good old water bottle right beside me, keeping me hydrated. As bedtime approached, I had a feeling I should pack my bag for a possible admission, because it always seems like when I least expect it I end up being admitted, so it’s better to be safe than sorry! I grabbed extra clothing, glasses, shampoo and conditioner, cosmetics and toiletries, my laptop and cords, Kindle fire and cell phone chargers, Sudoku, Bible, The Purpose Driven Life, my journal, word searches, coloring books, twistables, gel pens and all other things I thought I might need to keep me entertained and then headed to bed, fully at peace with whatever God had in store for me.

This morning I awoke feeling much better: I no longer had a fever, could move my arm and the achiness/weakness that had consumed me was no longer existent. As I got ready for my doctor’s appointment, the anxiety of the unknown once again overtook me; would I have to be admitted? I felt good! But, was this just because I’d gotten so used to feeling like crap that I no longer noticed it? Once we arrived at the hospital, we immediately bee-lined it for the outpatient lab, afraid it’d be packed and we’d have to wait for hours; much to our surprise however, there were only two other families present and in no time they called me back to have my blood drawn and the specimen was sent to the lab to be tested. We then made our way to the adolescent clinic to tell them we’d done my bloodwork and then headed over to the gift shop to do some shopping with the gift card I’d won. It was SO much fun to just look around at all the goodies and of course, my eyes were drawn to the bling; I looked through the rows of earrings and instantly fell in love with a pair of dangly diamond crosses which made all the other pairs look insignificant, and took my prized discovery up to the register to purchase them. After that, my mom of course wanted to stop at her favorite place in the hospital—the coffee stand—and we bought her favorite latte. I then put my new earrings in and we found seats in the newly reconstructed lounge area overlooking the playground and breathtaking scenery; it was a breath of fresh air to see the sun shining on the green grass, amidst the fall flowers and corn stalks—much more engaging and pleasant than the painted walls in the adolescent clinic! As we talked and played on our phones, it was encouraging to simply have this time of mother-daughter bonding and I couldn’t help but think how undeservedly blessed I am with the absolute best family! They have been through hell with me, literally watching me die and not knowing if I’d make it another second, but never once have they left my side or given up on me, which is more than I could ever ask for! Truly words cannot even begin to express how grateful I am for all they’ve so selflessly done and continue to do for me; all I know is I am blessed far beyond what I deserve! 

Anyway, once it’d been about an hour since the bloodwork had been taken, we headed back to the adolescent clinic to receive the results. The doctor took a seat beside me and kindly reported that she could tell I’ve really been trying and doing much better; all my labs were within normal range except for my phosphorous, which had dropped within the danger zone as I’d started eating again. She explained that this is often seen in refeeding syndrome, which is a “metabolic complication that occurs when nutritional support is given to severely malnourished patients. Metabolism shifts from a catabolic to an anabolic state. Insulin is released on carbohydrate intake, triggering cellular uptake of potassium, phosphate, and magnesium.” Since my body has no reserves to pull from, the increased demand for phosphorous resulted in a critical drop; in order to keep me from potentially dying from refeeding syndrome, which can result as the brain literally swells out of the skull due to critical drops in phosphorous as well as other fatal complications resulting from the electrolyte shifts, I agreed to be hospitalized so they could monitor my labs, making sure my phosphorous didn’t drop any lower as we continue to increase my intake; this has to be done very slowly and cautiously, making sure to closely monitor my vitals, blood, and watch for any bodily changes in swelling, etc which can occur at any moment during refeeding if it isn’t done correctly. It makes me feel good to know that they are taking such precautions to keep anything from happening since refeeding syndrome is such a risk and often times is fatal. My doctor said not to look at this as a setback but rather as a sign of progress—that they can obviously tell I’ve been working extremely hard and want to take extra precautions so all the progress and positive ground I’ve gained isn’t lost, so I can have my surgery sooner and get on with my life! Everyone has been so supportive; since 6200 is being remodeled, I am up on 8200 even though there is no cardiac monitoring; my doctor agreed to let the cardiac monitors go since my potassium is well within normal range and I’ve been doing so well, which is a positive! The staff has been exceedingly encouraging, saying things like “keep up the good work” and “keep working so hard”, which is refreshing to hear; it’s nice to be recognized for positive things once in a while! J But, anyway, they did an EKG, which came back normal, gave me a phosphorous supplement as well as half maintenance fluids with extra phosphorous through my IV and rechecked my labs; my phosphorous has come up slightly, which is a good sign. They’ll recheck it in the morning and if it’s normal, I should be able to go home but knowing how serious this is I’m trying to not be in a rush to get out of here but simply to relax in God’s plan and allow the nurses to care for me, since I don’t want to lose the progress I’ve worked so hard to make! Either way I will have to get the calories in, whether I’m in the hospital or not, which is ok with me—but not with ED. He hates every calorie I allow into my body, representing failure as the number on the scale goes up, but this is NOT failure but rather VICTORY; I can’t live in this condition much longer, so every step forward represents another day of life! This disease could have killed me countless times but God continues to redeem me because He must have something big planned—more than my wildest dreams can even begin to imagine; He is not done with me yet and I need to keep fighting so this purpose can be fulfilled and beauty arises from this pain! One day all the pain and suffering will make sense but for now I simply have to trust—one bite at a time! 

20 June 2015

I Changed My Mind

This life is a roller coaster ride, full of many ups and downs and unexpected twists and turns. A lot has happened in my life lately and I haven’t taken the time to sit down and write, so here it goes—I have nothing better to do as I sit here in a hospital bed, connected to countless wires and an NG tube keeping me alive as I literally fight for my life—fight to survive and take back everything the devil has stolen from me, including my identity rooted in Christ. To many, anorexia just simply doesn’t make sense, and even to one entrenched within its depths, it is a mystery. God is showing me, however, that I don’t need to have all of the answers; that to Him, Anorexia is no mystery and He indeed holds the keys to true freedom. As many of you know, my life lately has been spent in and out of hospital beds, cycling between self-destruction and stabilization; actually, my entire life these past few years has consisted of this hell—of a life sacrificed to ED, or eating disorder, and near-death experiences. But something has changed; something within me clicked and I no longer desire this life, which is indeed no life at all but rather an attempt to become nonexistent and numb my pain—my way of coping with the depravity of this fallen world and the wounds it heartlessly inflicted upon me. This “click” didn’t occur all at once, as I’d hoped it would, but rather was a slow process of coming to the end of myself, testing each boundary, and much prayer—in fact, prayer is what I believe ultimately produced this “click”, along with endless love and support.

On May 17 I received an inbox from a dear friend, asking if he and some close friends could come and pray over me; of course, I could not decline such an offer and agreed to let these “strangers” from Kenya Africa come over to my house and lift me up, never even anticipating such an amazing and miraculous afternoon of prayer and rebuking the devil. At around two ‘o’clock the next day, a dear friend and his wife, who I’d met several years prior at Bethel Camp, arrived on my doorstep along with a pastor and his wife from Kenya, Africa. We gathered in the living room and talked about my thorn in the flesh, otherwise known as anorexia nervosa, and I tried my best to let them into my mind, where the true battle occurred. They so patiently listened, asking questions throughout, and came to a profound understanding of my battle with food. Once a better understanding of my situation was formed, I stood in the middle of the living room and my mom as well as the two couples gathered around me, laying their hands upon me as they each prayed; never in my life have I felt such animation and power coming from the lips of a pastor, as he literally shook me, crying out in faith for God to heal me—truly, it was one of the most amazing experiences of my life. He ended with “You are Blessed”, and we made a deal, telling the devil “I’ve changed my mind”. Honestly, I expected myself to be healed instantaneously and for my struggles with food to immediately be gone but it didn’t exactly happen that way; this “click” occurred through multiple hospitalizations, doctor appointments and endless prayer.



Along with juggling weekly doctor and bi-weekly therapy appointments, I decided I wanted to get back into volunteering, so emailed my dear friend and volunteer coordinator; we went through the different open positions, but one in particular intrigued me—a position they were just launching. So, I agreed to become their “guinea pig” and figure out how this position would look, and went in the next week for orientation. I then received a tour around the brand new, eye-catching addition of the hospital and then  stopped at the front desk where I’d be located, which had a breathtaking view of the new hospital and all its spectacular landscaping. I enjoyed interacting with the families and growing accustomed to the more calm atmosphere of the Kay Jewelers Pavilion, as well as the haunting aroma of freshly brewing Starbucks coffee located just around the corner of my new desk.

A week later, as I prepared myself for another day of volunteering, I heard God’s voice in the middle of the night, as I lie there awake, unable to sleep. He gave me a vision of Jesus in the Garden of Gethsemane, where Jesus cried out “Abba,[a] Father,” he said, “everything is possible for you. Take this cup from me. Yet not what I will, but what you will” (Mark 14: 36), as He prepared for the most gruesome death of all time. I felt God saying, “Chelsea, this is NOT the life I pre-destined for you”. He gave me a vision of “death”, so to speak, and what He had called me to endure in order to find life. Just as Christ did in the Garden of Gethsemane, I cried out to God to “take this cup from me” but felt Him saying, “Chelsea, stop running”; after arguing with Him for a little while, I finally agreed to move forward into what He’d called me to rather than backward, as I’d always done in the past. I told Him, “My spirit is willing, but my flesh is weak” and just as He equipped Christ with everything He needed to fulfill His destiny, I was given strength—a supernatural power not of my own—as I prepared to walk through the profound pain of re-feeding rather than retreating back to what had become comfortable and my body had become accustomed to. This time must be different because my body was shutting down, as indicated by my failing kidneys as I recovered from pre-renal failure--my body could no longer take the abuse I’d been inflicting upon it.

That day, as I prepared to volunteer, God gave me an appreciation for “the little things”. “Sometimes the smallest things take up the most room in our heart.” He showed me how to appreciate myself again, allowing myself to feel the water as it splashed against my skin and the tingling sensation of my face wash as it penetrated into every pore. As I got dressed and allowed myself to put on make-up, do my hair, spray perfume, etc. I noticed His hand in all the details and joy overflowed from within me. I could hardly wait to head out the door, but first I had some errands to run for my sister’s grad party I’d been having so much fun planning. I went to Wal-Mart and allowed myself to browse through each aisle, putting the items I needed into my cart and dreaming of this party as the final details came together. For me, I am such a planner and dreamer, so it was incredibly thrilling to plan such a big occasion, allowing my mind to just wander, thinking of each little detail. Once I finished shopping, I got back onto 77 and headed to Akron Children’s. The volunteers were so excited to see me and welcomed me with open arms as I entered through the doors and the love was contagious—I couldn’t wipe the smile off my face! While completing my first task, I ran into a good friend I hadn’t seen in months; we’d volunteered together at the surgery desk and formed such a special bond and , so it was just another “little thing” God allowed to brighten my day! After we finished catching up on each other’s lives, I went back to the first floor desk and finished my shift, aware of all the “little details” throughout the day. Overall, it was just a good day of allowing myself to enjoy and take part in the little things of life rather than punishing myself, as I’d so often done.

I spent the rest of the weekend planning and preparing for my sister’s grad party, making sure every detail was complete. However, I’d become so consumed with making sure the party was perfect, with every detail in place, that I forgot how to take care of myself, once again neglecting my needs. The next day I had a doctor appointment and avoided hospitalization by the skin of my teeth but resorted right back to my anorexic tendencies rather than trying to restore my labs into normal ranges. By Wednesday, after doing everything I could to avoid food, I reached my end, both physically and emotionally. I saw how my self-destructive actions were not just affecting me, but also those around me; in fact, my whole family was falling apart. I could no longer continue this way, so agreed to check myself into the hospital the next day. I was terrified as I prepared myself for the vision God had shown me in the weeks prior but I knew there was no turning back now—I had to stop running because I was getting nowhere and my dreams of having surgery and going back to college were rapidly disappearing. So, I embraced what God had called me to, well aware of the “hell” or “death” that rapidly approached. I wrote my doctor a letter, expressing my innermost feelings and plans or ideas for the future, as something had to change and I ached for my voice to be heard; “insanity is doing the same thing repeatedly yet expecting different results”. As my dad so kindly drove me to my appointment, my mind raced with ideas of how to “escape” this approaching hell and rather resort to the comfort of anorexia. After having blood drawn, we headed over to the clinic, where we patiently waited for the results. After doing vitals and such, we were taken back into a room where we awaited the dreaded knock on the door—there was NO turning back now! I knew I was going to need hospitalization, after struggling to get any form of nutrition in, and braced myself for the dreaded plan—would my voice be heard, finally? The doctor entered and informed us of my “crappy” labs and once again recommended hospitalization—but something was different. After reading my letter and realizing that insanity is doing the same thing while expecting different results, as well as seeing something different in me—a desire for change and a desperation for things to be different, we came up with a plan we both agreed on—a way to approach this disease differently and for my voice to finally be heard. This was my chance; my chance to prove that I did indeed desire change, no matter how excruciating. So, it was determined that I would do NG feedings through the weekend, to provide nutrition to my failing body, rather than trying to force feed me, which only led to conflict and deception. Then, on Monday we would slowly re-introduce solid food; they would turn my tube feeding off for 8 hours and send up two snacks and a meal. If I could handle that, I would work with the dietitian to plan my meals, re-introducing food at my own pace; she would help me plan my meals in the hospital based on a plan for when I return home, allowing me to become comfortable with how to meet my needs out of the hospital, prior to being discharged. Once I was able to orally consume all the calories my body required, without the help of an NG tube, we could discuss discharge and how to approach the future. So, this is the plan for the following weeks, as we wait for insurance to approve and decline treatment.

Once the plan was set in place, with the residents informed, I was sent up to my room, where I prepared my “home” for the next days. An NG tube was placed, placement confirmed by x-ray and a continuous feed started, slowly re-introducing nutrition into my body. The rate of the feeding was increased every hour until my anticipated goal was reached. So now, my body must re-learn what to do with food, since it’s been deprived for so long. The process is excruciating and there are many moments where I want nothing more than to resort back to comfort, but I have to remember that “I changed my mind” and that the pain is only temporary.

After talking with a dear friend, I came to the realization that the reason I have been unable to maintain a healthy weight for so long but instead kept relapsing is because I was so determined to control my weight, rather than simply allowing my body to recover. My surgeon gave a minimum weight I must reach in order to have surgery, and my black or white mind took that as the maximum number I could weigh, with not one ounce more. This is why I have failed to trust my treatment team time after time—because I always knew best—more than my own body and even its Creator! So now, in order to recover and achieve my destiny, I must learn to crucify my flesh and trust—the hardest thing for me to do. No matter what my flesh tells me, I cannot trust it right now, but must lay down my control and trust those God has provided to guide me. So, I don’t know what tomorrow looks like but God is teaching me how to be ok with this and to rest in the calm assurance that He knows the future and holds my life in His hands, which is more than enough! My identity is not found in a number, in sports, or anorexia, but in CHRIST!

16 May 2015

Self Hatred

Here’s the gut wrenching truth: I hate myself more than I ever thought possible because I incessantly follow my fleshly desires and thoughts in my head, which only lead me astray. Just like Brene Brown says, “Shame corrodes the very part of us that believes we are capable of change”. No, because of all of the horrible things I’ve done and continue to do, I do not think I am capable of change or forgiveness and therefore feel a compelling need to punish myself at every chance. One thing I’m most ashamed of and currently am waiting for terrible things to happen for is leaving the hospital against medical advice. On Monday I had a doctor appointment, which I thought would go good: I’d stopped purging as much, kept drinking a lot and ate—not much, but at least I didn’t purge. Well, after hearing that my labs were off and my doctor wanted to hospitalize me, my world came crashing down. I couldn’t say no because my mom was with me and wouldn’t allow it, so I was escorted up to 6200—my home and most hated place of all time.  I went through the same routine of admission and all control was stripped of my being. Now I’d be forced to stay in bed and eat every single crumb on the dreaded tray that came six times a day, have bags of IV fluid pumped into my veins and do what every anorexic fears most (and feels like a counterfeit when it happens)—gain weight. Honestly, I didn’t want their help—didn’t want to gain weight because I wanted to do it my way. So, I did as I’d done every other time and did everything to eat as little as possible and therefore gain the least amount of weight; I hid food everywhere I could, dumped drinks down the drain and flushed food down the toilet—desperate to get rid of it in any way possible. After 4 days of medical stabilization, the doctor told me once again that she wasn’t comfortable sending me home and wanted to keep me a few more days, and I came to my end. I thought, “I can’t do this anymore; they’re just trying to make me fat and send me away so I get even fatter”. I also thought it was unfair to keep me longer than absolutely necessary, since I was technically already medically stable. So, I did the most horrible and shameful thing a person could do: I signed the papers to leave the hospital against medical advice, full aware of all the risks, and walked out of the hospital. Now I sit here, having never hated myself more. I can’t get myself to eat or even keep it down because I must punish myself at any possible time because I am too far gone—there’s no more hope for me. I’m sorry this is so dark and depressing, but this has been my life for the past few months: wishing I could just die, for this battle is too much for me to bear and I can’t do anything right. “The spirit is willing, but the flesh is weak (Mark 14:38)."

“I wanted to kill the me underneath. That fact haunted my days and nights. When you realize you hate yourself so much, when you realize that you cannot stand who you are, and this deep spite has been the motivation behind your behavior for many years, your brain can’t quite deal with it. It will try very hard to avoid that realization; it will try, in a last-ditch effort to keep your remaining parts alive, to remake the rest of you. This is, I believe, different from the suicidal wish of those who are in so much pain that death feels like relief, different from the suicide I would later attempt, trying to escape that pain. This is a wish to murder yourself; the connotation of kill is too mild. This is a belief that you deserve slow torture, violent death (Marya Hornbacher).”
“I want to go to sleep and not wake up, but I don't want to die. I want to eat like a normal person eats, but I need to see my bones or I will hate myself even more and I might cut my heart out or take every pill that was ever made” (Laurie Halse Anderson).
“I am forever engaged in a silent battle in my head over whether or not to lift the fork to my mouth, and when I talk myself into doing so, I taste only shame. I have an eating disorder (Jena Morrow).”
“The only number that would ever be enough is 0. Zero pounds, zero life, size zero, double-zero, zero point. Zero in tennis is love. I finally get it (Laurie Halse Anderson).”
“Soon I'll be thinner than all of you, she swore to herself. And then I'll be the winner. The thinner is the winner (Steven Levenkron).”
“She began to be reassured by these pains, tangible symbols of her success in becoming thinner than anyone else. Her only identity was being "the skinniest." She had to feel it (Steven Levenkron)”. 
This is my life until I learn to forgive myself and accept God's unending grace and allow Him to lead me to this: 
happy, fulfilled, and sparkling for God.