Blessing In The Battle

July 2015

I'm not going to sugar coat anything: as of tonight, I am not doing well. I feel as if the depression has reached an all time low. The medicine my doctor was very confident in didn't work. While there has been a slight decrease in my symptoms, it was never consistent. As of tonight, I am weaning off that medicine and trying something new tomorrow. Today was a really bad day. I'll spare the depressing details but say that I found myself wishing none of this had ever happened. My pediatrician is at the same hospital and office building where my health story took place. Normally this doesn't bother me. In a weird way, I enjoy going to that hospital. It's pretty much my second home, and who doesn't like going home? I have good memories of when I brought cookies to all my doctors and nurses. I still laugh when I think about some of the funny antics of the staff there. However today was different. I was very anxious the entire time there. I kept having PTSD-like flashbacks to the countless times I went into that building sick and hopeless. Suddenly all those happy memories were gone and replaced by dark memories that make me want to run out of the building. That my friends, is what depression does to you. Wishing that it never happened to me won't do anything. It happened. Now I have to live with it. So instead of dwelling on the bad memories and experiences, I wanted to write a post to help me focus on the good memories and blessings that came from my health journey:

*My pediatrician, Dr. S., telling me that it was safe for me to ride all the rides I wanted to at Universal Studios when I had mono
*The percent of people who have died from C.diff is growing, but C.diff didn't kill me
*My first pediatric GI doctor, Dr. D.S., was a quirky little guy with a different personality that always made me laugh
*Going gluten-free and dairy-free has forced me to eat healthier (NOT a reason for going gluten-free though!)
*When Dr. D.S. ran out of ideas, he referred me to an incredible doctor
*This doctor, Dr. Di, gave me a feeling of peace and contentment after the first appointment that I had never felt before when leaving a doctor's office...and called my mom on Labor Day to check on me
*I was tested for Crohn's disease and cancer; both were negative
*Dr. Di's nurse, Nurse J., was easily reached and immediately on it when my mom called saying that I had pain under my right side
*Dr. Di referred me to a great surgeon, Dr. R.
*This surgeon, with his dress pants and scrubs, took my gall bladder out flawlessly and improved my quality of life

*Month by month, my level of nausea dropped, which also improved my quality of life
*Harry Potter is the best distraction
*I truly learned the value of good doctors in January 2012
*Dr. S. came to my rescue when my colon was impacted
*The floor I was hospitalized on was so bright and clean
*Dr. Di was my doctor again and put me on the right medicine that gave me back my life
*I was finally able to deliver my cookie platters and thank my heroes
*I was able to make the Build-A-Bear that I had been dreaming of
*Dr. Di correctly diagnosed and treated me when my stomach problems returned
*Throughout my journey, my faith in God grew tremendously
*I have a great relationship with my mom
*I have a cat who knows exactly when to comfort me
*I have family members across the country who prayed for me
*I have my best friend, Elizabeth, who is always there for me
*I have a sister-in-law who understands me so well and is always encouraging
*My health problems have lead me down the career path that I already love
*Being gluten-free has introduced me to two of my best friends
*My health care team is amazing; they're like family to me











"All our sickness, all our sorrow
Jesus carried up the hill
He has walked this path before us
He is walking with us still
Turning tragedy to triumph
Turning agony to pain
There is blessing in the battle
So take heart and stand amazed." 

Follow Up: Where I've Been & Where I Am

June 2015

Hello again friends and blog followers! I've decided to write another post about my newly diagnosed depression and anxiety, not because it's a fun topic, but because writing allows me to express my thoughts and feelings in ways that I most likely wouldn't do in a conversation. Let's start with an update on how I'm doing as of today. I've been on my medication for three weeks tomorrow (Thursday). The dosage was increased on Monday. This medicine is semi-helpful. The need for massive amounts of Miralax has decreased and the pain from the gastritis flare up is gone! In my last post I mentioned how the medicine was giving me anxiety attacks. While these attacks still come, they don't last as long and aren't as frequent. I've even been able to distract myself when attack helps (usually by looking at pictures of those adorable Royal babies!) so I don't need to reach out. Unfortunately, the medicine is not helping with the fatigue, muscle aches, joint pains, and depression. My doctor increased the dosage in hopes that a higher dose will help with these remaining symptoms. I've gone to the gym every day for two weeks (I did skip a couple days and walked around the lake with my mom, but that still counts as a workout!), which helps energize me, stabilize my moods, and makes my muscles ache less.

Pedicures with mom

So how am I coping until the medicine starts fully working? To be 100% honest, it's the hardest thing I've had to do. I've been comparing this bout of illness with my previous run-ins with chronic illness. In the past, my health problem was physical. My stomach was upset. My body couldn't digest gluten anymore. My gall bladder was causing me pain. My abdomen hurt. My colon decided to be a pain in the butt (I'm cracking up at that pun by the way!). My stomach was inflamed and full of bile. All physical problems. During all of my previous health issues, I've "still had my brain", for lack of better wording. Even though those problems sucked, I was able to think clearly and choose to see the positive. With mental health issues, I don't have that ability. As much as I try and as much as it's pointed out to me, it's hard to see the bright side. It's all due to the chemical imbalance, not something that I can control. That adds an element of frustration to all this. I am BEYOND THANKFUL for all the family and friends who are supporting me and praying for me. As I said before, this is something I cannot fight alone, and I need every person who is willing to go at this with me. As always, my mom is extraordinary. She gets up at a very early time when I have to work in the mornings because my anxiety tends to be worse when I have to get up early. Being alone and in the dark also makes the depression and anxiety worse so my mom hangs out with me before I fall asleep. She's always doing fun things with me and nice things for me, and I'll never be able to thank her enough!

Awareness Art

   When I'm not working or interning, I try to stay as busy as possible in my free time. I do fun things with my mom and my best friend Elizabeth. I'm re-watching Grey's Anatomy, scrapbooking, creating art projects, and reading the Harry Potter series for the fourth time. In my older posts I talked about bringing a Harry Potter book to the hospital and doctor's offices. The Boy Who Lived and his brilliant creator, J.K. Rowling, are successful again in transporting me to a different world. When I'm feeling anxious and/or sad, I pick up my book and my mind is taken away from the demons that are inside. Most of the time I'm so drop dead tired that I go back and forth between watching Grey's Anatomy and reading Harry Potter; I don't have much energy to do anything else.

Best therapist: cat and
Harry Potter!

So that's where I am now. Some days are better than others. Some days start off well but come crashing down later on. There's no way to predict or prepare for how a day will turn out. The only thing I can do is take each day step by step, lean on the support from family and friends, and trust in God.

Next I would like to share some interesting things I noticed before I was diagnosed, when I was still in college and living in the dorms. I brushed it off thinking it was because of finishing my freshman year, but now I realize that what I'm about it talk about was related to the depression and anxiety. There were many nights where I would be taking a shower and then suddenly freeze. Nothing was bothering me, but I knew there was something wrong. Finally I would come to my senses and get out of the hot water. It was weird, but I didn't think anything of it. I figured I was tired and my brain was stuffed with information. Another weird thing, and this sounds weird, was my eyes. I've always liked the color (green, NOT hazel, mom!!) and shape of my eyes, but I noticed they looked different when I took a selfies/SnapChats to send to friends. It startled me at first when I first noticed it, and I still notice it now. I finally figured out what the strange look was: empty. At the hospital where I work, I've interacted with patients who are depressed, and I see the same look in their eyes. Thankfully my depression isn't as severe as these patients, but the empty look scares me sometimes. I've gotten pretty good at faking that everything is all sunshine and butteries so it can be hard to notice this. *FYI: I would appreciate it if all you lovely people didn't get uncomfortably close and stare into my eyes...if you can resist the temptation :P* Anyways, I noticed these two weird "symptoms" before I put anything else together, but now it's reassuring to know that there's an actual real reason for all of this.

And there you have it: a peak at where I've been in the past and where I am now. Hopefully the next follow up post will have more positive vibes to it!

Thanks for reading and stay tuned,
Sarah

Post-Hospital Life

March, 2012

Happy to be home!

I spent my first day out the hospital in my pajamas, napping in my room. I was so tired from the pain, being hospitalized, and the new medicine I was on. I received a surprise visit from the kids I babysit and their mom. I could hear Lucy and Collin running up the stairs shouting, "Sarah? Where are you?!" I was overjoyed to see their little faces peek into my room. They brought me flowers, a balloon, a picture, and "Number One Ladies Detective Agency"--a great show! Lucy and Collin climbed all over my bed, scared the cat off my bed, and thought it was funny to see me in my pajamas.
 I still felt the same. I was more comfortable at home, but I still had level eight abdominal pain. I guess this was what having IBS was like. The next day, two days after I was released from the hospital, I went back to the hospital for the ultrasound ordered by Dr. G., the adult GI doctor who diagnosed me with IBS. Ultrasounds were no big deal by this point; I had been through so many that the whole process didn't even bother me anymore. When the ultrasound came back normal, my mom called Dr. G.'s office asking (again) for pain medicine. When it was (again) denied, Dr. S., my pediatrician, came up with an over-the-counter plan consisting of Tylenol and Aleve. Dr. G. wanted us to contact Dr. Di, the pediatric GI doctor, if I was still in pain on Monday. On this same day, a huge packet arrived for me in the mail from my Uncle Mark in Wisconsin. It was full of materials from the Mayo Clinic all about IBS! It was all very interesting and helped me fully understand my new diagnosis.

Flowers from my favorite kids!

 On Monday, I was still struggling through the constant pain. My mom got in touch with Dr. Di's office. If you remember from previous posts (see "August 2011: The Second Opinion"), Dr. Di was my second, and favorite, pediatric GI doctor. He had not seen me since October of 2011, after my surgery, when my only complaint was unending nausea. An appointment was made for April 16. It was March 26, and April 16 seemed like an eternity away. The next day was a Tuesday, and that meant I babysat Lucy and Collin. I didn't feel like I was able to drive or babysit by myself so my mom came with me. Spring had sprung early in Des Moines so we spent a lot of time outside with the kids. While we were babysitting, Nurse T. called to check on me. After we finished babysitting, we had a picnic lunch at a nearby park and then went to my weekly weight-check with Nurse T. It was hard to believe that I had been hospitalized a week ago. Nurse T. was surprised to hear that I was still in constant pain. It sounded like pain from IBS came and went throughout the day; nothing like what I was dealing with. On our way home from the hospital, Nurse J. from Dr. Di's office called. Dr. Di wanted me to take two tablespoons of Benefiber twice a day. The normal dosage for Benefiber is two teaspoons! Dr. Di's theory was that extra fiber would bulk up the stool and thus be able to release an IBS pinch in the colon. I had done some research, and I knew what I needed: amitriptyline. Dr. Satan in Iowa City was supposed to put me on amitriptyline if eating more didn't help, but then he decided he was an expert in eating disorders *sarcasm intended*. Dr. Di wanted to try the Benefiber first, but he would prescribe amitriptyline at my appointment in April if the Benefiber didn't work.

Babysitting <3

My mom and I decided to walk around the lake after we were finished at the hospital. I was proud of myself for being able to walk two miles one week after being hospitalized! As we walked, we talked about how great it was to be back in Dr. Di's care. When I was Dr. Satan's patient, I felt alone, helpless, lost, and afraid, but now that I was back in the care of a doctor who I knew was smart, kind, caring, and compassionate, I didn't feel those emotions. I felt very safe, secure, and protected.
 At home, I didn't have much energy or strength to do anything. I mostly sat in the rocking chair with a heating pad on my abdomen, Oliver on my lap, and absorbed in a good book. My mom was doing research on natural, homeopathic ways to treat IBS. She had discovered a peppermint oil capsule that was legendary for treating IBS. She made a note on her long list of things to talk to Dr. Di about. Another thing she discovered was chiropractic care. My mom immediately made an appointment with a friend of ours who is also a chiropractor. Digestively, I didn't feel any better after the appointment, but my neck and back felt better! The Benefiber also didn't seem to make any difference. I knew I needed amitriptyline, but it looked like I was going to have to wait until April 16 to get it. The days were dragging by, and I was quickly getting bored and restless at home. My mom and I decided we would start going somewhere every afternoon, once school was finished. At first we started by going on picnics, walks, and buying groceries, but as time progressed we did a lot of really fun things!

April 2012: This is Where the Healing Begins

 The beginning of April brought some dreaded events. The Iowa Assessment Tests (or Iowa Test of Basic Skills). Even though I'm homeschooled, the state law required that I take these tests. I think they're completely pointless and a waste of time, and I was even more intolerant of them while dealing with level eight abdominal pain! We got in touch with our supervising teacher, who told me not to worry about the results. The testing was only in the morning for a few days, and I had the rest of the day off from school. April 4 was also a not-fun day. It was the day that my GI journey had begun. If you recall from "April 2011: Friends to the Rescue, Wills & Kate, & GI Doctor", April 4, 2011 was the day that I woke up with diarrhea and severe nausea. Here I was, one year later, with a double diagnosis of celiac disease and IBS, no gall bladder, severe abdominal pain, constant nausea, a nightmare of a visit to Iowa City, and a hospitalization under my belt. I tried to stay positive, but this anniversary was a tough one for me. However, I did believe an end was in sight. Dr. Di had prescribed amitriptyline, the medicine I knew I needed, before the April 16 appointment! My mom felt that the medicine Dr. G. had me on was causing me to feel worse so she called Nurse J. at Dr. Di's office again. I was to stop Dr. G.'s medicine, stay on the Benefiber, and start 25mg of amitriptyline!
**********************************************************************************

Best medicine ever!

Amitripyline (am-i-trip-t-lean) is an antidepressant used to treat depression issues. When given in a low dose (75 mg or less), amitriptyline creates a positive brain-to-gut connection so digestion is received as normal by the brain.
**************************************************************
I had never been so thrilled to go to Walgreen's to pick up medicine! I was even more excited when I opened up the bottle to see that my dream medicine was my favorite color: mint green! Dr. Di even said he would increase the dose at my appointment in a few weeks if I wasn't feeling better. As I took my first dose of amitriptyline that night, the Christian band Tenth Avenue North's song "Healing Begins" played in my head:
"This is where the healing begins/this is where the healing starts/when you come to where you're broken inside/the light meets the dark"
I was put on this medicine before, way back in 2011 when I was with my first pediatric GI doctor, but it didn't work then. I didn't even experience its famous side effect of tiredness after taking it. This time around, I experienced the tired side effect in full force! Now I understood why I was supposed to take it at night: about 30 minutes after taking it, I fell into the deepest sleep I have ever slept! I had weird dreams all night and woke up the next morning feeling like I had woken up from anesthesia. Amitriptyline has a sleeping pill component to it, which causes the sleepiness. It was so great to finally be able to sleep through the symptoms that had either prevented me from sleeping or woken me up in the middle of the night!

Easter 2012

While waiting for the amitriptyline to work its magic, the Benefiber was causing some serious problems. It had plugged me up so bad that I had to drink another bottle of magnesium citrate. I had missed so many Lent services, Maundy Thursday, and Good Friday that I was looking forward to Easter Sunday. All of my family would be here, and I was looking forward to a fun day of Easter egg hunting at Grandma and Grandpa's!

Two great friends and their dog!

 By the second week of April, I was starting to gain some independence. I was able to drive and babysit by myself. I drove myself to my friend Elizabeth's house to meet her new puppy, Anya, who was absolutely adorable! It was some definitely some animal therapy. I had also noticed that my level eight abdominal pain was present 95% of the time--down from 100% of the time! While I was overjoyed and very thankful for the small break from the pain, a new symptom was starting to bother me. When I sat down to eat a meal, I took a few bites and then I was ready to stop. I felt full. Since my weight was still low, I couldn't only eat a few bites of a meal. It happened every. single. time. I felt like I had just finished Christmas dinner at Grandma's when in reality I was only 1/3 of the way finished with a meal. I read that it was a common symptom with IBS, but the extreme fullness was almost bothering me more than the abdominal pain. I was very much looking forward to my appointment with Dr. Di, especially after going to hell and back in Iowa City. Dr. Di was just as kind and sincere as he was when I last saw him in October of 2011. He increased the amitriptyline to 37.5 mg-hooray! Dr. Di told me several times that it would take a "full two months" for the increased dose to start working. He also prescribed erythromycin to help with the fullness. He said I should give it one week to work, and then call him. Dr. Di wondered if I might have some "delayed gastric emptying" and wanted me to have a gastric emptying scan. He approved of the peppermint oil capsules that my mom had found, and revealed that he also had IBS. He said that he eats a couple Altoids when he doesn't feel good and it helps instantly. Dr. Di was still concerned about my weight; if I wasn't able to gain any weight, he was going to have to put a feeding tube in my nose. I was completely terrified at the prospect of that. Dr. Di seemed curious about Dr. Satan not running any tests. I was worried about how this topic would be brought up. My mom kept a calm face while telling Dr. Di what happened, but I could tell she was fuming on the inside. Dr. Di didn't seem surprised about the accusations Dr. Satan made, and he told me he was glad I was a psychiatrist to completely rule out any mental issues once and for all. A follow-up appointment was made for four months later, and I started desperately praying that I would be well by then. As I left Dr. Di's office, I felt a familiar feeling of peace. It was all going to be okay. I was back in the care of an excellent doctor who didn't think I had an eating disorder, increased my medicine, and was going to find the answer to this very bothersome full feeling.
 One week later determined that the erythromycin was not working. I still felt unbearably full very early in meals. A gastric emptying scan was scheduled for April 25. I would have to eat radioactive eggs with toast for the test so my mom called ahead and told them that we would be bringing gluten-free toast with dairy-free butter. I even had to bring my own food to the hospital! In the meantime, I was getting very restless at home. I wrote in my diary, "my life is turning into that of a character from a Jane Austen book!" I felt like all I did was read, craft, rest, and maybe go for a walk. I didn't feel up to doing much else, but if I could just hold on for those full two months that Dr. Di talked about...I was going to feel better. I was already getting some relief from the nausea with Dr. Di's Altoids tips!

TO BE CONTINUED............. 
 
 
 
 

The One That Got Away

"But the Lord is faithful, and He will strengthen and protect you from the evil one."-2nd Thessalonians 3:3 

 

 

 

March 2012

 

 

It was incredible how different a person could feel with a cleaned out colon! It took six days and four bottles of magnesium citrate, but I felt so much better! By March 1, my stomach felt remarkably better, and by March 2 my abdominal pain had gone from a level eight to a level two! I was extremely worried that the nausea level would shoot back up so if I felt good after a meal, I ate that exact same meal. I mean the exact same meal...down to the exact same brand of peach jelly! I don't know how many peanut butter and jelly sandwich, chips, and applesauce or yogurt lunches I ate, but I never grew sick of it because it never made me sick. The only thing I would eat for breakfast was a gluten-free cereal (Nature Valley's Crunchy Vanilla Sunrise, for all you gluten-free people out there!) and Naked Blue Machine juice, because it had the most fiber. I did not want to be constipated ever again! I also started taking a daily probiotic after watching a program on TV about how probiotics help the digestive track. My mom and I made fun of Dr. Satan and what his reaction would be if we told him about the probiotic. I had more energy, and I was much happier than I had recently been.  

 My sweet grandparents sent me a check for $50 ("Cold Cash for a Clean Colon" as we called it) because they were very sympathetic about everything that I had been through.

I had a follow up appointment with my pediatrician, Dr. S., on March 6. Both Nurse T. and Dr. S. were beyond thrilled that I was feeling better. My nausea was at a level one, and the abdominal pain wasn't really pain anymore... it felt more achy. Dr. S. said that the achy bowels were probably due to the stress on my colon. I desperately did not want to go through with the eating disorder assessment, but Dr. S. said that I should still do it as an insurance policy. Dr. S. was 100% on my side. He thought Dr. Satan was embarrassed for missing a huge constipation problem--since he is a GI doctor. All of the reports from my countless appointments with Dr. S. had been sent to Dr. Satan. This time, however, Dr. S. shook his head and said, "I don't think we'll send this report to Iowa City. We would hate to pester him." It made me sad to think of how rude Dr. Satan had most likely been to my beloved pediatrician. Dr. S. gave me a few example questions that my psychiatrist would probably ask, and he was also more than okay with rescheduling my next appointment in Iowa City. The appointment was set for March 12, but I was feeling so great it seemed pointless to drive all the way up there. Plus, I did not want to be anywhere in the same vicinity as that worthless excuse for a doctor, man, and human. I knew I would not be able to look him in the eyes after the hell he made my parents and I go through. I also didn't exactly trust myself. My tears and pain had been turned to rage--rage that I had never experienced before and rage that almost scared myself. My mom e-mailed Dr. Satan telling him that we wanted to reschedule to March 12 appointment to a later date. Dr. Satan replied with an ominous: "let me know when you want to come." Usually a response from him would send me into a hysterical fit that ruined the whole day, but I could smell triumph in the air. If I could pass the eating disorder assessment (and why wouldn't I?!), I would be the victor. It turns out that my mom didn't actually reschedule the appointment to a later date...she cancelled it! I held no future appointment at the University of Iowa hospital!

 The eating disorder assessment was on March 8 with Dr. K., a psychiatrist who specialized in eating disorders. I was so nervous. I  prayed that God would give me the right words to say. I was worried Dr. K. would ask really in-depth questions, and I would come up empty. Dr. K. was a tall skinny guy who led me down a long hallway into his office. As soon as I saw the stereotypical comfy red couch, I wanted to run in the opposite direction. Instead, I tried to appear relaxed and happy. My mom and I told Dr. K. the entire story, now up to 19 months. Mono, c.diff, celiac disease, gall bladder removed, and colonic constipation. Dr. K. was clearly confused about why a doctor a referred me. He said that most eating disorder patients (or their parents) saw the need for help and contacted him. We tried not to sound too victimized by Dr. Satan as we explained the very complicated situation. Dr. K. asked me lots of questions, but nothing in-depth that Dr. S. and I had practiced. He asked me what my hobbies were, if I ever used drugs, or if I ever drank alcohol. I gave him a long list of my hobbies and answered "no" to drugs and alcohol. Had I ever been abused? No. Did I constantly feel nervous, stressed out, unmotivated, hopeless, helpless, or anxious? No. Did I think I had an eating disorder? Heck no. Did I ever cry excessively? No. Did I ever hear voices in my head or see hallucinations? Goodness no! After asking me these questions, Dr. K. said that "everything goes back to the medical problem." After filling out release forms for Dr. K. to send to Dr. S. and Dr. Satan, we left.
 I was free. I had proven a University of Iowa doctor wrong. I felt immensely overwhelmed as I left Dr. K.'s office. This was the moment that I had been waiting for ever since that first e-mail from Dr. Satan accusing me of having an eating disorder, and now it had arrived. I had crushed the serpent's head beneath my heel. He had bitten my ankle, but I applied more pressure. I been knocked to the ground so many times, but with the help of God, my family, and medical staff who actually cared about me, I was able to find the strength to get back up.  I found myself feeling a mix of feelings: relief, gratefulness to Dr. S. and Dr. K., sadness that I had to go through the whole ordeal in the first place. On the way home, my mom mentioned that she was going to e-mail Dr. Satan telling him that I did not have an eating disorder, and Dr. K. would be sending him the report. I was so ready to be done with Dr. Satan and his e-mails that I was against his idea. I tried to convince my mom to let Dr. K. bother him, instead of us.

"Well, he has bothered me." My mom replied in a tone that was so like my grandma's.

E-mailing Dr. Satan was my sweet and angelic mother's way of getting revenge! I was so proud of her! My mom had battled Dr. Satan just as much as I had, and she had fought well and bravely. The e-mail was sent to Dr. Satan, but he never replied. I knew he wouldn't, but it took several weeks until I could check the e-mails without fear causing me to shake and my heart to race. The pain on my left side of my abdomen was completely gone, and there was just a tiny bit of discomfort on the right side of my abdomen. It looked like things had finally turned around for me: I felt nearly 100% better after 19 months of chronic illness, I was able to perform in the home school play, and I would never have to read another e-mail from Dr. Satan again. In the aftermath, I had raging thoughts of revenge against Dr. Satan. Even though we were finished with him, I still felt like he was holding me in his clutches. It took months for me to finally feel free, and even now as I write this blog two years later, I still have my moments of sadness, pain, anger, vengeance, and fear because of him. One thing that has given me a lot of comfort is a Bible verse from Romans 12:19: "Do not take revenge, my friends, but leave room for God's wrath. For it is written, 'it is Mine to avenge; I will repay' says the Lord."

My mom often told me that "God will take care of people like him". I don't know God's plans (sometimes I really wish I did), but I do know that God's word is always true.

Two popular songs often heard on pop radio stations have also really helped me put my experiences with Dr. Satan behind me and have helped me feel triumph instead of victimized. They are "Titanium" by David Guetta and "Roar" by Katy Perry. I won't dissect every lyric, but hopefully after reading my story you will be able to see why the lyrics in bold stick out to me

 

"Titanium"

You shout it out
But I can't hear a word you say
I'm talking loud not saying much
I'm criticized
But all your bullets ricochet
Shoot me down, but I get up

I'm bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away

[Chorus:]
You shoot me down but I won't fall
I am titanium
You shoot me down but I won't fall
I am titanium

 Cut me down
But it's you who'll have further to fall
Ghost town and haunted love
Raise your voice, sticks and stones may break my bones
I'm talking loud not saying much

I'm bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away

[Chorus]

 Stone-hard, machine gun
Firing at the ones who run
Stone-hard as bulletproof glass

[Chorus]
 

 

"Roar"

I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything

You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready 'cause I’ve had enough
I see it all, I see it now

[Chorus]
I got the eye of the tiger, a fighter, dancing through the fire
'Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
'Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar

Now I’m floating like a butterfly
Stinging like a bee I earned my stripes
I went from zero, to my own hero

You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now

[Chorus x2]

*I would like to dedicate this post to all of the children and families that have had to experience Dr. Satan. I titled this post "The One That Got Away" because I fear that too many children are still in the clutches of Dr. Satan. It completely terrifies me to think of what would have happened if Dr. Satan continued to be my GI doctor. I know of families (including my own) who went to Dr. Satan looking for an answer, and they got a problem that was way worse than the reason they went to him in the first place. God blessed me, picked me up, and carried me away from him, and my prayers are with those who are still fighting.* 

 

TO BE CONTINUED......

 

 



September 2011: Keep Calm & Carry On

September 2011

Let's recap from August 2011: I had a double scope (endoscopy and colonoscopy) on August 30. Blood drawn before the scope showed that my thyroid levels were lower than they were last time. An appointment with Dr. C., the endocrinologist, was scheduled for September 1. The biopsy results would be coming any day now. These results could possibly answer why I still wasn't feeling better.
 I learned from Dr. C. that no two hospitals have the same numbering system. My thyroid levels were low at the hospital where Dr. Di (my GI doctor) is, but that didn't mean they were low at the hospital where Dr. C. is. Dr. C. wanted me to come back in one month, and she wanted the biopsy results. 
 Those results came on September 2. I had been living on the edge every time the phone rang from August 31 until September 2. Did I have Crohn's disease? Would the biopsies show that I was still somehow eating gluten? I remember waiting for my mom to pick me up from babysitting on a Friday morning. When she pulled into the driveway, I saw she was on her cell phone and writing down rapid notes on a piece of scratch paper. This is it. I thought to myself. I bid the kids and their mom goodbye and silently got into the car. I was right. My mom had just finished talking to Nurse J. The biopsy results were back: I did not have Crohn's disease, and there was no sign of gluten exposure. I wasn't quite sure how to feel about this news. Obviously, I was thankful that I did not have Crohn's disease and I wasn't accidentally eating gluten, but at the same time I felt disappointed. I was ready to accept whatever diagnosis came by way. Instead of being scared at the thought of having both celiac disease and Crohn's disease, I was ready to start whatever treatment necessary that would make me feel better. Dr. Di had talked to my parents and me about what would have happened if I had been diagnosed with Crohn's disease: I would be put on prednisone, a steroids, that would make me feel better in "a couple days." Even though I've heard that prednisone has horrid side effects, I would have gone through anything to feel better. So what was next? Dr. Di was taking me off the anti nausea medicine reglan and on erythomycin.
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Erythomycin (eryth-ro-my-cin) is a medicine that irritates the stomach to move. 
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Nurse J. also told my mom that an upper GI with a small bowl follow through was scheduled for September 7. If that test came back normal, I would have a gall bladder scan. If that test came back normal, Dr. Di was out of ideas. I would be sent off to Iowa City with a very detailed letter from Dr. Di. Previously, my mom had rescheduled the Iowa City appointment for October 11 to allow more time for Dr. Di to try and find what was wrong. Trying to absorb all of this was exhausting. I was still very firm about not wanting to go to Iowa City. I had been praying that I would not have to go. I just had a bad feeling about it.







My favorite marching Hawkeye!

Even though I hated the idea of going to see a doctor in Iowa City, I was excited about going to see my brother in Iowa City. Both my siblings were back at their colleges, and I was starting my second year of high school. On September 3, my parents, sister, and I made our annual road trip to Iowa City to watch my brother, Daniel, play in the Hawkeye Marching Band. I couldn't care less about football, but I always enjoyed watching Daniel's hilarious antics while he was performing. We always arrived in Iowa City around 6:00 a.m. to watch the band on the practice field. The students' outfits usually consisted of pajamas which always amused me. After the band was finished on the practice field, everybody moved in to the rec hall to watch the pre-game show. We usually met up with Meghan (my brother's girlfriend and fellow marching band member) and her parents before the show started. I was armed with 7up and gluten-free food. Watching Daniel play his clarinet with swag, shout, and dance always made me laugh...even when I would much rather be at home lying on the couch with my cat. The weather is always terrible when I have to sit through a football game. Today's game day weather consisted of rainstorms. I sat next to my mom on the uncomfortable bleachers wearing my rain poncho and feeling absolutely horrible. The rain was coming down in sheets as the Hawkeyes held hands and ran out on to the field at Kinnick stadium. A football stadium is an exciting place to be, even if you're like me and don't understand anything about football. As the rain started to pour harder, I began to feel worse. Since I don't understand football, there was nothing to occupy my mind. I started thinking about the upcoming test on September 7. Was it bad to pray that this test didn't come back normal? It felt morbid and weird. A normal test meant more testing. Would I eventually have to come to Iowa City? As this thought crossed my mind, I realized that I was staring right at the University of Iowa hospital. It was right next to Kinnick stadium. For a majority of the game, I stared at the sign on the hospital. Thankfully, my thoughts were disrupted when it was halftime. I enjoyed trying to find Daniel on the field and watching as the talented band formed the famous Hawkeye hawk head. There was Daniel...at the peak of the beak! Shortly after halftime, the weather began to get worse. Everybody who had a smartphone (which was about 97% of the stadium) had pulled up the radar. Severe storms with wind were coming our way. For the first time in Hawkeye history, Kinnick stadium had to be evacuated. My family and I went back into the rec center and waited until it was clear to go back into the stadium. Football games are long enough, but this made it even longer.

Eventually, the game was finally over. We all went back to Daniel's apartment to change clothes. Since the weather is always crappy when we go see a game, everybody was prepared with a change of socks, underwear, jeans, t-shirts, and sweatshirts.. After we changed and hung out at Daniel's apartment, Meghan came over and we left for a "Sarah-safe" restaurant  that my mom had found online. The restaurant was a good 30 minutes away, and I was exhausted and felt terrible. I didn't even try to make conversation with Meghan in the car. I forced down a dinner of a baked potato and some chicken. Looking back on this day now, I don't feel like I was mentally with the rest of the family. My mind was occupied with thoughts of my stomach, tests, doctors, and  coming back to Iowa City to see another doctor.

Labor Day fell on September 5. My family's tradition of having a picnic and playing with Frisbees and footballs at a nearby park was taking place at dinnertime. I distinctly remember working on a project in our school room when my mom's cell phone rang. I absentmindedly worked on my project while listening to the one-sided phone conversation.
"Ummm...well, she's doing okay. Nothing has really changed." My mom said. I figured it was my grandpa checking on me like he does every day.
"The last time her blood glucose was tested? Let me check." My mom rushed to the computer and pulled up my medical history, which was now six pages long. I couldn't figure out why my grandpa would be asking when my blood glucose was tested. As my mom's conversation went on, I realized that it must have been somebody in the medical field. Maybe it was somebody from the hospital calling to ask some questions before my upper GI test two days later. Then I realized that it was Labor Day. Who would be working on Labor Day? I thought. My question was answered moments later when she got off the phone: Dr. Di, my GI doctor, called my mom to check on me. On Labor Day, the three day weekend.
"He is very worried about you." My mom told me.
I couldn't believe that my doctor was working on his day off! Both my mom and I were surprised, no, we were shocked. I immediately realized that I had one of the best doctors in Des Moines on my side. I felt relief and comfort come over me, and those are beautiful feelings! My mom called my grandpa to tell him about my doctor calling, and my grandpa later text me and told me that he was praying for my doctor. Dr. Di was going to have my blood glucose checked when I went in for the upper GI scan to see if I had Type one diabetes since my weight was plummeting. Dr. Di also prescribed omeprazole to help control the nausea.
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Omeprazole (o-MEH-prah-zole) is a proton pump inhibitor that stops acid from entering the stomach. 
*********************************************************************************Dr. Di had also mentioned IV nutrition if I could not gain weight. I prayed that I would never have to go through that. Even though I still felt as crappy as I did before, I had more fun than I thought at the picnic. I felt a sense of calm that I had not felt since before I got sick.

Upper GI with small bowel follow through
Sounds like fun, right?! I had to be at the hospital at 7:15 a.m. on September 7. The test was expected to take about two hours, and I had to change into another stylish hospital robe. It was freezing in the procedure room so the nice tech gave me a warm blanket to wrap around my shoulders. I sat next to my mom and read "The Goblet of Fire" while waiting for the test to begin. I was in a large room that had a huge piece of equipment in the middle of the room. It looked like something that would be in a sci-fi movie. There was a long table that stood upright, but it looked like the table could move down. Attached to the table were large x-ray machines. The tech explained how the test would work: I would drink something called barium. Then I would have a series of x-rays taken of the barium moving through my digestive track. A radiologist would watch the pictures to see if there was anything abnormal in the way that food moves through my system. Before the test could begin, the tech had me swallow something that looked and tasted just like pop rocks. I thought I was going to throw up as this mystery "food" fizzled and popped into my stomach. The tech then had my mom move behind a protective screen while the x-rays were being taken. The radiologist entered a small protected room where he would watch the x-rays. He introduced himself and instructed me to stand with my back against the standing table. The tech gave me a glass of barium with a straw. The radiologist told me to take lots of little sips of barium and swallow continuously. The barium was white, thick, and looked like paint. I closed my eyes as I took the first sip. It. Was. Disgusting. It literally tasted like liquid chalk. I tried to not gag as I took continuous sips and swallowed. For the next 45 minutes, I moved all over the table. Sometimes I had to take long sips and other times I had to take continuous sips. I didn't matter how I drank the barium; it was terrible and it made me want to throw up more than I usually did. At one point, the standing table slowly moved into the tradition table position. I was instructed to roll around three times so the barium could coat my stomach. I couldn't help laughing as I rolled around on the table while trying to keep my hospital gown in position. Whenever my stomach was facing the table, I could see a screen with the x-rays on it. It was very cool and interesting to see what my digestive track looked like! I was starting to get exhausted and sick when this part of the test was finally over. The tech led me into a smaller room that was connected to the room we just left. This room had a regular x-ray machine in it. The tech explained that she would need to take x-rays of my abdomen to watch the barium move through my small and large intestine. It might take a while for the barium to settle in my intestines so I contently sat with my warm blanket and read my book. When I read, I wasn't wearing a hospital gown while barium was moving into my large intestine. I was cheering Harry Potter on at the Triwizard Tournament! The tech startled me when she came into the room and said it was time to take the next set of x-rays...back to reality :( The tech pulled out a strange looking device. It was a long paddle with a ball at the end. The tech was also dragging a TV monitor into the room with her. She explained that she was going to use the paddle to push on my abdomen while taking x-rays, and the x-rays would show up on the TV monitor. The paddle pushing on my abdomen was very uncomfortable, but I quickly forgot about the discomfort when I looked at the monitor. There was my large intestine! The tech pointed out the barium moving through and where the small intestine hooks on to the large intestine. Some people might be grossed out at seeing their own colon, but I thought it was so cool. After the tech was done pushing on my abdomen, she said the test was over! It took about an hour and a half, but it felt like four hours. The tech warned me that I would see the barium come out in the next few days. I pushed that disgusting thought out of my head, kindly thanked the tech, and left with my mom. Before I was free to leave the hospital, however, I had to have the blood glucose test. I knew I didn't have diabetes, but I understood why Dr. Di wanted to double check. We had to wait a while for someone to draw my blood. My stomach felt terrible, thanks to all the barium. By the time someone was finally able to draw my blood, I was starting to get crabby. The phlebotomist used a big needle on me. I usually watch when needles are inserted, but I had to look away this time.
 I complained the entire drive home. I complained about how cold the hospital was, how gross the barium tasted, how big the needle was, and how badly my arm hurt where the needle was inserted. I immediately shot down my mom's suggestion that maybe the Band-Aid was wrapped too tightly. 
"No. It hurt because the needle was so huge!" I snapped. Sorry, mom! :(
 I laid down for a nap as soon as I got home. Naps have never really helped me, but I was so exhausted. When I woke up, I was even more snippy and crabby. I couldn't put my finger on the feeling, but I felt different. Something had changed. Later that day, I told my mom that my stomach hurt.
"It's probably just from the barium--wait, did you say your stomach hurts?" My mom asked.
My stomach hurt. I had pain in my stomach. Since October of 2010, the only sensation I had in my stomach was nausea. I had lost track of the number of times that I had to explain that I was not in pain; I was nauseated constantly. This time, however, the pain seemed to be running in a straight line from the middle of my chest down to my belly button. My mom suggested that we wait and see what the next day brought.

Taken at T.'s house,
this picture shows
how gray my skin was :(

When I woke up the next morning, the pain was still there, but it seemed to be moving around. It started out in the middle of my stomach, then it shifted to the left, and then it went to the right. The constant nausea I had been battling was still there, but now it was accompanied by a sharp pain. After a morning of observing, I noticed that the pain was staying under my right rib cage almost consistently. My mom still thought the pain was caused by the barium, but I knew it wasn't. Dr. Di's words came back to me: "most people with gall bladder problems have pain under the right rib cage." Could this be it? Was the answer that I had desperately been searching for hiding under my right rib cage? My mom called Dr. Di's office and talked to Nurse J. The barium test came back normal (of course!) and the blood glucose test was also normal. When my mom told Nurse J. about the pain under my right rib cage, he asked if it was worse after eating. My mom asked me and, after thinking about it, I answered yes; the pain was worse after eating. Nurse J. said he would pass all this information on to Dr. Di.
"I promise I'll call you back." Nurse J. said before he hung up.
 Meanwhile, I was feeling worse. The pain under my right rib cage was starting to get more intense. My mom immediately looked up symptoms for gall bladder problems, and all my symptoms identically matched the online symptoms. I tried not to get my hopes up. I had made plans to go to my friend T.'s house, but I didn't know if I could make it. I pushed the pain and nausea away and got ready to go. On the way to my friend's house, Nurse J. fulfilled his promise and called back. Even though I had my license, I was in no proper state to drive so my mom drove me. She pulled off to the side of the road and answered her phone. A HIDA scan of my gall bladder was scheduled for the very next day. I tried not to get excited about the thought of this test showing what was wrong. Instead, I prayed that this test would come back abnormal. I did my best to enjoy myself at my friend's house, and I did. We laughed, watched stupid YouTube videos, and stocked people on Facebook--all things that normal teenagers should be doing.
 The HIDA scan wasn't exactly at a convenient time, but there was no way we were going to reschedule it. It was on Friday at 2:00. On this same Friday, my parents and I were going to leave for an overnight trip. I would stay at my grandparents' house while my parents celebrated their 25th wedding anniversary at a fancy hotel. After I finished babysitting that morning and my mom had picked me up, I skipped lunch (because of the HIDA scan), and packed my overnight bag. Soon we headed to the hospital. I had been through so many outpatient tests that I was beginning to recognize different employees. One of the most memorable was a tall and skinny man in scrubs who took patients to their tests. This guy always had a bounce in his step and walked fast. New patients would probably be worried that they would lose their guide and get lost in the hospital, but I knew my way around. The test would take place in the nuclear medicine department. I was beyond thrilled when the techs told me that I could leave all my clothes on! There was a big machine that looked like an MRI machine in the middle of the room, complete with a table that slid into the machine. The techs had me lay down on the table, and they put a pillow under my knees. Then they told me that I would have to lay completely still for 90 minutes. For the first 60 minutes, the machine would record what my gall bladder was doing by itself. Then I would have a medicine put through my IV that would stimulate my gall bladder to release bile. The machine would then record how my gall bladder was releasing bile. An IV was started, and the very nice tech put saline in it.
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Saline is often used through an IV to flush wounds and rehydrate patients. 
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I could taste the salty saline in my mouth as soon as it was started. I soon learned that this test was boring. The tech had placed a TV by my head, but with it being 2:00 in the afternoon, there was nothing on TV except for soap operas and trashy MTV shows. I settled on a channel that played classical music; it was so relaxing that I almost fell asleep. The nice tech made conversation with my mom and me for a little bit. He joked that he was going to be nicer to me than the barium test techs--only because this test didn't involve gagging down barium! After the 60 minutes finally passed, it was time to stimulate my gall bladder. I was sore all over from having to lay still. All I wanted to do was stretch and walk around. The tech warned me that this medicine that would stimulate my gall bladder might cause me to have some unpleasant symptoms. The tech sent the medicine through my IV and moved the table I was laying on back under the machine. Instantly, I did not feel good. My stomach became queasy, and I started to have pain under my right rib cage. I told the tech about these symptoms, and he recorded them. These 30 minutes seemed even longer than the 60 minutes. The nausea and pain grew worse as time moved on. The tech told me several times that we could take a break if I needed to, but I was ready to get this over with. I knew right then and there that we had finally discovered the problem. The last 15 minutes were almost unbearable. The tech kept offering to give me a break and updated me on how much time we had left. I was exhausted, nauseated, and in so much pain by the time the test was finally over. The tech told us that since today was a Friday, we wouldn't have results until Monday or Tuesday. As he walked us back to the elevator, he asked me several times if I was okay. I felt horrible; I felt like I had just ate a huge meal. When we arrived back at our house, my mom had me eat a pathetic lunch and then we left for my grandparents' house. I was looking forward to forgetting about the test and just enjoying time with my grandma and grandpa. The pain under my right ribcage seemed to be getting worse as we drove down my grandparents' long and gravel driveway. We were almost to the house when my mom's cell phone rang. Since I was sitting behind her, I could hear bits and pieces of the phone conversation:
"Hi, this is Dr. Di. How's Sarah doing?"
Oh my gosh....this is it. I thought. What did the test say? What's going to happen next?
My dad parked our car and went inside my grandparents' house while my mom and I stayed in the car. I stopped myself from reading the extensive notes that my mom was scribbling on a random piece of paper. It felt like she was on the phone for hours. When the call finally ended, my mom turned around in her seat to tell me the news.
"This test came back abnormal."
PRAISE GOD!!!!!
The HIDA scan showed that my gall bladder was functioning at 37%. Low functioning is considered 35%, but since I had "reproducible" pain and nausea, that was the telltale sign that my gall bladder was causing all the problems. Dr. Di. was going to get in touch with two surgeons: one adult surgeon and one pediatric surgeon. My mom asked if there was any medicine that could help my gall bladder before I had surgery. Dr. Di. said that there might be, but he would have to check. Dr. Di. told us that there is a 60% chance that removing my gall bladder would make me feel better. Receiving all this information all at once made me feel like I had been hit by a train. I was still shocked that we heard the results just a few hours after the test. 
 As I sat in the backseat of our family's van trying to process all this potentially life-changing and somewhat scary information, I was reminded of King George VI's famous quote: "Keep Calm and Carry On". I could still enjoy myself at my grandparents' house, even with a 37% functioning gall bladder and the thought of surgery on my mind. My mom and I both commented on how convenient it would be to have a smart phone at this moment. I was still confused on what the gall bladder actually did, and my mom was itching to do research online. I thought I was going to break down and start crying right there in my grandma's driveway, but I pushed the tears away and thought of King George VI (I'm a very passionate Anglophile...have I mentioned that?). I picked up my bags and walked into my grandma's house. I then petted Miss Kitty, the world's sassiest cat, while my mom read off her list of scribbled notes to my grandparents. After visiting for a while, my mom and dad took off to go to their hotel. My mom gave me a hug and told me not to worry about my gall bladder.
"I just hope it doesn't explode this weekend!" I joked.

Shadow! :)

I did have a wonderful time with my grandparents. After a delicious gluten-free dinner, we gathered around the TV to watch the movie "Soul Surfer", the true story about Bethany Hamilton's shark attack that left her with one arm. As I watched the movie, I couldn't help but notice similarities between my story and Bethany's. Obviously, our stories are completely different in a physical sense, but we were both struck with something unexpected; something that changed our lives. I couldn't stop the tears when Bethany cries to her youth leader: "How can this be God's plan for me? I don't understand." I completely understood how she felt. I had asked that same questions so many times. Bethany had to wait to gain her life back; she had to wait until she was strong enough to get back in the water. When she did get back in the water, it wasn't as smooth and easy as it was before the shark attack. Did she give up? No, she kept surfing. She was so determined to live her life despite the fact that she only had one arm. Not only is her story inspiring, but her faith in God is also inspiring. It turns out I wasn't the only one who was moved to tears during the movie. My grandma, who joked that there "wasn't enough swearing and no naked people", was blowing her nose and drying her eyes also. After the movie, we all went to bed. My grandma knew that I had been feeling extremely cold recently so she covered the pull-out bed with a goose down blanket. Even though I was warmer than I had been in a long time, I still had trouble falling asleep. My right side hurt so bad; I could not get comfortable. I tried laying in every position, but I could not ease that horrid pain. It wasn't like a shoulder or knee paint that could be massaged. This was a deep pain, buried under my right rib cage. It was impossible to massage or get around. I thought this was as bad as the pain could get, but sadly I was mistaken. So many thoughts were running through my head. I was relieved that we finally knew what the problem was, but I was unsure and scared about the thought of having surgery.
 Even though I was in pain, I had a great time at my grandparents'. One of my favorite parts of the weekend was brushing my grandma's faithful dog, Shadow. Shadow was dumped by the side of the road when my grandma found him. He is the most gentle dog I have ever met. He has a precious way of leaning against a person's legs--usually hard enough to make them stumble backwards--and then he'll look up with a "please just pet me" look in his eyes. Brushing that loyal dog made me feel better, and it was then that I truly understood animal therapy. I was anxious to get home though and research what the heck my gall bladder was doing. Here's what I discovered: the liver produces bile.
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Bile is a greenish fluid that helps with digestion.
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 The gall bladder releases the bile, and that is where my problem comes in. My gall bladder was not releasing the proper amount of bile, thus making digesting food difficult and causing nausea and pain. 
At church on Sunday, Pastor F. asked how I was feeling and if anything had been discovered. I proudly smiled and answered that yes, the problem had been found! Pastor F. gave me a huge smile and seemed genuinely glad about it. In the church parking lot, Rachel bent down and tapped my right rib cage.
"Hey! Stop making Sarah sick or else we're going to cut you out!" She shouted at my gall bladder.
  I don't know why, but I always have a new problem on a weekend when none of my doctors are working. Dr. Di. was going to contact surgeons and look up medicine, but we didn't expect to hear anything until later in the week. Once again, Dr. Di. prevailed and called my mom twice on Monday. The pediatric surgeon would not operate on me because he felt like he didn't have enough experience with removing gall bladders. Thank goodness for honesty! The adult surgeon, a surgeon named Dr. R., immediately said he would operate once he heard that my pain and nausea were reproduced during the HIDA scan. There was a medicine, ursodiol, that Dr. Di. wanted to try.
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Ursodiol (ur-so-di-ol) is used in the treatment of gall bladder disease. 
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A precious picture of the kids, but look
at my face and you can tell how sick I felt

I would have to give the medicine two full weeks to work before we met with the surgeon. A low functioning gall bladder didn't stop me from enjoying a beautiful autumn bike ride with my mom around the lake. I took my medicine, did schoolwork, and babysat regularly. I had been on the medicine for four days when I woke up on a Friday morning feeling terrible.  I wasn't well enough to drive myself to babysit so my mom drove me. I gagged down a few bites of yogurt before the pain started, and I could not eat another bite. I had a miserable morning babysitting. I was so cold; I had even dressed in several layers. My entire right side was throbbing, and I was so nauseated. I was texting my mom, who cancelled my piano lesson for that afternoon, the whole morning. I only had about an hour and a half left of babysitting, but I could not stand it anymore. I told Erika, the kids' mom, that I needed to go home. She instantly switched into "Mommy Mode" and offered to call my mom. She also told me that I could sit by the toilet until my mom picked me up. Both kids give me extra special hugs when my mom picked me up. Even though I had already accepted that I was going to have surgery, I was still surprised when my mom told me that Nurse J. and Dr. Di. were able to get me in to see the surgeon in four days. Once I got home, I took a hot bath and laid on the couch. I attempted to eat lunch, but it didn't go well. For the rest of the weekend, I laid on the couch and watched TV, read, knitted, and played on my iPod. I barely ate anything. My dad was worried that my gall bladder was going to erupt. Oliver kept me smiling by purring, kneading his paws, and rolling over on his back and staring up at me. I had noticed that Oliver was spending much more time with me since I got sick. Whenever I couldn't handle the nausea anymore, he was always there. There have been so many times when I've been crying with my mom because I was so tired of not feeling well, and Oliver would brush up against my legs, meow, purr, and beg for attention. It was as if he was saying, "Don't cry, Sarah. I'm here for you. Watch...I'll roll over on my back and flex my paws because it always make you smile." I love my kitty! :)

The Bad Weekend finally ended on September 18. I couldn't even make it to church that Sunday. Only two more days until I saw the surgeon. By this point, I had already Googled him so I knew what he looked like and where he went to medical school. Ah, the Internet is a beautiful thing! On Monday, the 19th, I actually got off the couch and got dressed instead of laying around in my pajamas. I pushed my way through school, and I wanted to babysit that night. My mom had to come with me to help out since I didn't think I could handle both kids by myself. My Tuesday appointment with the surgeon wasn't until 3:45 so I kept myself busy with schoolwork and reading. After wandering around the hospital looking for his office, my mom and I eventually made it to the waiting room. It was unbearably cold in there. I escaped to the bathroom to warm up and try to calm myself down; my heart was racing. When a nurse opened the door to the waiting room and called my name, I said a prayer and walked through the door. The nurse took my vitals and showed me to a small exam room. Shortly after she left, there was a knock at the door. When the door opened, a tall and dark Italian doctor came in. He introduced himself as Dr. R. and shook our hands. There were two particular elements about Dr. R. that still make me smile today: he was wearing surgical scrubs with a surgical cap, but the back of the cap was untied and sticking straight up. When he sat down on the "official" doctor stool, I noticed his footwear. He was wearing brown leather dress shoes with no socks. I already liked this guy! We reviewed my medical history, and he asked me several times if the pain that was reproduced during the HIDA scan was the same pain that I was experiencing now. I answered that it was, but I doubted myself when he asked: "are you sure?" I felt a surge of confidence and answered that yes, the pain during the HIDA scan was the same pain I had now. We talked for a little about celiac disease and the gluten-free diet.
"You guys seem like reliable people so I know you're really on the diet, where as some people say they're on it, but they're not."
Dr. R. even admitted that sometimes he thinks he's self-diagnosed himself with celiac disease. I instantly felt that Dr. R. was very confident. My mom was worried that he would be a cocky and arrogant surgeon, but he wasn't. He told us that every low functioning gall bladder he has removed has fixed the patients' problems. Of course, there was no 100% guarantee that removing the gall bladder work, but Dr. R. said that I had a higher than 60% chance because I had so many other testing. I really felt relieved when Dr. R. said, "If you were a member of my family, I would highly recommend that you have this surgery. If it works, it could be life-changing for you."
So my surgery, a laparoscopic cholecystectomy, was scheduled for Friday,  September 23, 2011 at 2:00 p.m. It would be done laparoscopically, which would leave me with four small incisions. There was a chance that Dr. R. wouldn't be able to reach my gall bladder through laparoscopic means. If that happened, he would have to make one big incision to open up my stomach. Either way, the surgery would only take about 20 minutes. If I had to have the big incision, I would have to stay the night in the hospital. Dr. R. said that there weren't any restrictions after a gall bladder removal. He said that some people can't eat greasy and fatty foods after having their gall bladders removed. Most greasy and fatty foods are fried and have gluten in them so I couldn't eat like that anyways. I also wouldn't be able to lift anything for a few weeks after surgery. Other than that, "if you want to run a marathon after surgery...go for it!" Dr. R. said.
  As we left the hospital, I felt so relieved and peaceful. I really liked Dr. R. He was confident, honest, and real. My mom and I stopped to walk around the lake on our way home. I praised God for Dr. R. and prayed that this surgery would fix all my problems. I didn't even feel that nervous. After getting a chocolate shake at McDonald's, we went home and sent out an e-mail to friends and family. Everybody responded saying that they would be thinking about me and praying for me. Several people revealed that they had their gall bladders removed also. My Aunt Pat sent a Bible verse that I absolutely treasure: "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24.
 With surgery on Friday, I wanted to make the most of the last two days with my low-functioning, pathetic gall bladder. On Wednesday, I spent the whole day reading in the backyard. On Thursday, my mom and I quickly finished school so we could have a fun day. Since my surgery wasn't until the afternoon, my mom was looking for ways to keep me busy in the morning. We went to the library and picked out the movie "College Road Trip" to watch the next morning. We also walked around the lake, shopped at a new co-op that sold GF food, and I got my bangs trimmed to look like Emma Watson's. My gall bladder was thoroughly enjoying its last day of making me feel miserable. I took comfort in knowing that this organ that had become my enemy was going to be destroyed the next day. As Thursday night quickly approached, I began to feel nervous. I wasn't nervous about the surgery; I was nervous about how I would feel after the surgery. Would I wake up from surgery with no nausea? Dr. R. said it might take a few days. Would the surgery work? Instead of worrying my head off, I created a poster with the lyrics from "Be Still My Soul". I fell asleep on Thursday night counting all the people who I knew were praying for me. I made it up to 40-something until I fell asleep.

September 23, 2011
My main goal was to stay busy on the morning of my surgery. I woke up, took a relaxing bath, watched "The Office" and "College Road Trip" with my mom, read, and packed an overnight bag just in case I had to have the big incision. The time surprisingly passed quickly. Around 12:00, my grandpa called to wish me good luck and tell me that he was praying for me.
"I just know this will make everything better." Grandpa reassured me.
My mom and I said a quick prayer, and I found Oliver to say goodbye to him. I was starting to feel nervous as I crouched by the rocking chair where Oliver was snoozing. He lifted his sleepy head, started purring, and reached his paw out to touch my hand. I just about melted! My mom and I were going to meet my dad at Grandview, where my sister goes to college. My dad would leave his car for Rachel to have and ride to the hospital with us. Rachel was planning on coming to see me after class. On our way to Grandview, we drove past the hospital.
Is my gall bladder really going to be removed in just a few hours? It still didn't seem real. We picked up my dad and drove back to the hospital. We parked in a parking ramp and walked under a green canopy to the outpatient surgery waiting room. It was just as cold, if not colder, than my surgeon's waiting room. My mom checked me in and then we waited. I submerged myself in "The Goblet of Fire" to distract myself from thinking about what was going to happen. After waiting for what seemed like hours, a nurse called me back. I changed into a hospital gown, gave a urine sample, and then the nurse started my IV. I was happy that I got to leave my socks on because they were bright pink with teal whales on them. I was so thirsty and cold. The same anesthesiologist who put me under for my double scope would be putting me under for the surgery. The nurses asked me questions about where my pain was and what level I would give it. Since I couldn't eat anything that morning, my pain wasn't as bad as it was the day before but it was still there. A nurse told my parents that they would keep me for one hour after I woke up before my parents would be allowed to see me. My mom and I exchanged worried glances. Whenever I had to be put under, the first person I always asked for was my mom. The nurse also told us that I would have to sleep upright, in a recliner, for the next couple nights so I wouldn't roll on my fresh incisions.
 Nurses were constantly coming in and out of the room so I didn't have much time to read. I was surprised when I looked at the clock and saw that it was 1:45. Only 15 more minutes.....
 The nurses put calf compression vasopressin caps on both my legs to prevent blood clots during the surgery. They looked like huge blood pressure cuffs that were velcroed on to both my calves. As if these weren't enough, I had to stuff my freshly trimmed hair into a blue surgical scrub hat and cover my cute socks with booties. There's nothing like smashing a girl's confidence in her appearance right before surgery! I knew we were getting close when Dr. R. came marching in.
"I've saved the best for last!" Dr. R., with his sock less leather shoes, said when he saw me. He talked to my parents and me about the surgery and how long it would last. I wanted to know what would happen to my gall bladder after it was removed. Rachel wanted to keep it and put it in a jar on our dining room table. However, a pathology report would performed to make sure it wasn't infected. Then my gall bladder would be cut up and burned.
HA! Take that, you pathetic excuse for an organ! I thought.
Dr. R. also told me that it was important that I shower every day, but I couldn't rub any soap on my stomach.
Right at 2:00, I said goodbye and hugged my mom before walking away with a nurse pushing my IV pole. We walked down a dark wide hallway before entering the classic double doors of an operating room. My first thought was, this is exactly how it looks on Grey's Anatomy! The OR definitely had plenty of space. A big table was in the middle with a mammoth circular light directly above it. There was also a TV screen and lots of other pieces of equipment that I had seen on TV.
"This is Sarah, and she's going to have her gall bladder removed today." The nurse introduced me to all the other surgical nurses and techs in the OR.
"Hi Sarah!" Everybody was so friendly.
I noticed one of the nurses unwrapping surgical tools and placing them on a tray with wheels. I also saw the sterile bowl where my gall bladder would be placed. The nurse helped me on to the table and immediately put heart monitor stickers on me. There were two trays sticking out from the table, and a nurse told me to place both my arms on the trays. This would allow them access to my IV. Another nurse adjusted a black tray that slid up from the bottom of the table under my feet to keep me in position. I remember looking at the huge light on the ceiling and thinking, it would really suck if that fell on me.
 The next and last thing I remember was the sight of a mask coming toward my face. Everything was blurry, and I heard a distant voice say, "it's going to smell weird." The last thing I thought was, she's right...this does smell weird.

30 minutes later I woke up in excruciating pain. It was, and still has been, the worst pain I have ever experienced. My stomach felt like it had been viciously ripped to shreds. I couldn't see anything, and I started crying. I heard somebody ask me why I was crying.
"It really hurts, and I want my mom!" I slurred. I was given liquid pain medicine and fell back asleep. I woke up several times complaining of the pain. I was also rubbing my eyes a lot, which the nurse told me not to do. I continued to rub my eyes while asking where Dr. R. was. The nurse gently pushed my hands away from my eyes and told me that Dr. R. was talking to my parents. 
 I fell asleep again, and shortly the nurse woke me up to tell me that I was going to see my family! I was wheeled to a curtained off room with a recliner. I still couldn't really see anything; I could just make out shapes. The nurse listed off a bunch of drink options, and I chose Sierra Mist. 
I then heard the nurse ask another nurse: "can you bring me Sierra Mist and some toast?"
The alarms in my head starting going off.
"NO!! I CAN'T HAVE TOAST!!" I shouted. I mumbled and slurred for the rest of the day, but this was a SHOUT.
"Oh that's right....you're a celiac. Forget the toast!" The nurse called.
Even though I was delirious, I felt ticked off that the nurse referred to me as "a celiac" when I'm actually a human. I somehow made it from the stretcher to the recliner. I was struggling to keep my eyes open, but I wanted to see my mom. Moments later, my mom came rushing into the room followed by my sister. Anxiety was written all over my mom's face, but Rachel gave me a big smile. After seeing my mom, I closed my eyes and rested. When I opened my eyes, I found that the nurse had covered me with a warm blanket. My mom was sitting on my right, and Rachel was holding my can of Sierra Mist on my left. I reached my hand out from under the blanket to hold my mom's hand. 
"Do I have to stay the night?" I croaked.
"Nope, they could do it laparoscopically." My mom reassured me. 
I slowly nodded my head as my eyes began to droop again.
"They tried to give me toast." I whispered.
Before falling asleep, I saw the color drain from my poor mother's face and horror and panic fill her eyes.

I drifted in and out of sleep for the next to hours. I heard pits of pieces of conversations going on around me. I heard the nurse giving Rachel nursing tips, Rachel commenting on my new haircut, and my mom's uncharacteristically bitter voice saying, "I told them not to give her anything to eat. That's why they wrote 'celiac' on her allergy band. Why would they offer her toast?!?" My mom was worried that I had eaten half the piece of toast before the nurses realized their mistake. 
 After the two hour mark, the nurse woke me up by telling me that I could go home! As the nurse and my mom helped me get dressed, the nurse asked me if I had any pets and commented on my "Fight Like a Girl" t-shirt. 
"Are you going to do the walk in October?" She asked.
"No, I got that for Christmas." I mumbled. 
The nurse then told me that I was going to move from the recliner to a wheelchair.
"It's very important that you don't hold your breath." The nurse told me. When we're in pain, the natural reaction is to hold our breath. The nurse was worried that I would pass out if I held my breath. With a lot of help, I slowly and painfully moved from the recliner to the wheelchair. The nurse pushed me out under the same green canopy that I walked under just a few hours ago where my dad was waiting with the car. The late-afternoon September air felt so great after being in the hospital all afternoon. The nurse laid to ice packs on my stomach and told my parents to roll the windows down. My mom buckled me in as I called "thank you!" to the very nice nurse. I don't remember the car ride home, but I do remember that I couldn't wait to tell my mom about the toast incident!

Oliver keeping up with his duties

  My mom woke me up at 7:00 p.m. to give me vicodin, the pain medicine that Dr. R. had prescribed. She also helped me get up and walk to the bathroom. The nurse had told her that I should try moving around as much as I possibly could. Walking to the bathroom was horrid; the air that was used to fill my abdomen had settled in my shoulders and they were hurting like crazy! I stopped on the way to the bathroom to pet Oliver. I really had to relieve myself, but....well, how do I put this in a lady-like way? I could not go. Nothing came out. It was the weirdest sensation I've ever experienced. As if not being able to pee wasn't bad enough, I completely freaked out when I felt something on the left side of my lower back. It turns out the nurses forgot to take one of the heart monitors off. My mom helped me back to the recliner in the living room where I immediately fell asleep again. My mom woke me up every two hours that night to give me pain medicine and some food. My stomach and shoulders were killing me. Thankfully, the pain medicine made me sleepy.

The next morning, I felt much more awake. My mom had spent the night on the couch that was right next to the recliner. I was pleasant surprised to see Oliver sleeping next to me on the recliner. My mom showed me pictures from the surgery and told me that my gall bladder had adhesions on it--a sign of gall bladder stress and attacks. Dr. R. was not expecting to find those, but everything else went according to plan.
"Did they give you toast?!" My mom anxiously asked.
I started laughing when I told her the story, but laughing made my incisions hurt even more. My mom was very relieved when I told her how I defended myself even while under anesthesia. Another attempt was made at going to the bathroom, but it was not successful. I finally had the chance to take a good look at my stomach. There were four incisions covered with steri-strips. While sitting at the table eating some bland toast for breakfast, I started to feel dizzy and I felt like throwing up. My mom helped me back to the recliner, and I fell asleep. In the afternoon, my mom and I took a walk around the backyard. Every step was difficult and painful, but I pushed through it and walked around the perimeter of our backyard. I was still feeling dizzy so taking a shower was interesting. I couldn't take a bath for one week, but my mom didn't want me to stand in the shower if I felt dizzy. My very creative and crafty mother came up with the idea of putting a lawn chair in the bathtub, me sitting on it, and calling it a "shower". It was so weird!

The list of what meds to
take at what time

 In the late afternoon, I started to vomit. Throwing up is bad enough, but throwing up on four fresh incisions was pure hell. I had thrown up three times, and I knew it was going to happen again. I sat on the recliner with a garbage can in my lap for one hour and nothing happened. I tried smelling food, but that didn't work. I knew that if I could move around, I would throw up. So I made my mom help me stand up and walk to the bathroom. Halfway there, I threw up into the garbage can. I made it into the bathroom and finished throwing up in the toilet. My mom was really worried so she called Dr. R.'s office. Since it was a Saturday night, Dr. R. wasn't there, but the chief resident told us that kids under 18 don't handle vicodin well. The resident had us switch to a strict regime of Tylenol and ibuprofen. Not having prescription strength pain medicine (and the sleepy side effects) was difficult, but at least I wasn't throwing up. Also, I was finally able to use the bathroom! My mom ended having to turn the sink facet on--like I was a two-year-old being potty trained. I've never been so thrilled to pee in my entire life!

The balloon pet that Megan and
her mom brought me. I named him after
Dr. R.

 The next day, September 25, I woke up hungry. I couldn't remember the last time I felt hungry. I was also hungry for lunch, and I didn't feel dizzy when standing up. My mom and I continued with our walks outside. I couldn't bend over and tie my own shoes, but my mom took care of that. Later in the day, the two girls who live behind us brought over a balloon and a care package full of sample packets of lotions, shampoos, chap stick, and a nice sleeping mask. My friend Megan (who has Crohn's) and her mom also came over with a balloon pet, gum, and gluten-free cookies. Our Chinese neighbors brought over their famous authentic fried rice.  Both my mom and I had also been talking on the phone to my grandpa and brother, Daniel. I was so touched by all the nice things people did for me: I got lots of e-mail and Facebook messages, cards in the mail, and my dad gave me some beautiful roses. I wasn't able to make it to church, but Rachel said lots of people asked about me. I even received some "get well soon" pictures from kids.

This was how I kept "busy" every day

 I wasn't feeling up to doing school on Monday, September 26, so I read, watched the Today Show, and played on my iPod. I was starting to get bored.
 I was sleeping really great at night. I felt remarkably better on Tuesday, September 27. My pain was less and (did I dare say it?) the nausea seemed to be gone! Nurse J. from my GI doctor's office called to check on me. The day seemed to be going well until after dinner. I was sitting in my recliner when I realized that the nausea-the same, unending nausea that I had been fighting since April-was back. I was so discouraged and defeated. The next morning, my mom called one of the surgical nurses, and she just so happened to talk to the nurse who helped me after I woke up from surgery.
"Tell Sarah that she shouldn't even think for one second that an upset stomach means the surgery didn't work." The nurse said. She said it was very normal and that I should try taking some food with the ibuprofen.
 This same day, my mom and I met Erika and the kids at a nearby mall. It was so great to see my two favorite kids again! They had both been instructed multiple times that I "have a bad owie on my tummy" and they would have to be gentle. My mom and I walked around the mall until I began to feel weak and tired. I tried napping when I got home, but I couldn't fall asleep. I took a shower and then read for the rest of the day. Rachel went to the library and got some movies for me to watch to pass the time. 
 By Wednesday, September 28, I was feeling up to getting some groceries with my mom. I picked out a Sudoku book and learned that I was really good at them! I would spend hours in the near future working on Sudoku puzzles. My stomach was still upset, but my mom was keeping me from getting worked up about it.

Having too much fun
just a few days after surgery

Four painful incisions didn't
stop the sass from coming
out :P

 The days seemed long; I mainly read, watched TV, did Sudoku puzzles, played on my iPod, and read some more. Oliver slept on my lap every single night, and my mom slept right next to me on the couch. I was cold from the ice packs, so my mom piled several blankets (including an electric heating blanket...no wonder Oliver slept on my lap!) on top of me. Our living room made a very cozy, big bedroom for the three of us. One night, I discovered that my ice packs had strings attached to them. I tied one around my head and joked that Dr. R. accidentally removed my brain. My mom and I had a blast tying the ice packs around various body parts. I finally had to tell my mom to stop because I was laughing so hard my incisions were really starting to hurt. 
 Even though the days were long, a week had gone by and it was time to remove the bandages. Dr. R. used steri-strips on my incisions so all I had to do was pull them off like a Band-Aid. I had visions of removing the strips and my incisions bursting open. I put a wet washcloth on each incision before carefully and slowly removing each strip. My incisions didn't look as bad as I had pictured them. There was one 1/2 inch size incision under my belly button, a circular incision the size of a pencil tip at the bottom of my right rib cage, a 6 millimeter incision on the edge of my right rib cage, and finally a 3/4 of an inch (or 2 centimeters) incision about 5 inches above my belly button. I felt like a warrior! :)

I was very glad that September was over. It had been a long month full of tests, procedures, pain, and a surgery. My second year of high school was getting off to a very rough start, but I was hopeful now that the suspect (my gall bladder) had been defeated....

TO BE CONTINUED!!!!

Hedwig and my ice packs